Mom without a manual

Forwarding address

2007-08-06T11:21:00.001-07:00

www.mwam.vox.com

Why are we moving? A few fellow bloggers have moved over there. As I explored I found that it could solve some of my privacy concerns.

One big perk is that I can easily upload video. Another critical point for me is that I can create a post and decide if I want it to be visible to everyone or just friends or family. For now, almost everything is available to everyone.

However, if you want to join my friends list, you will need to send me an email so I can add you to my list. I just might have pictures and juicier stories for you guys!

I can be reached at
momwithoutamanual@yahoo.com

I hope you don't mind changing your bookmarks. I promise the commute is no longer than you are used to! I think you will like my new neighborhood as well! I hope to see you there.

Fair expectations

2007-08-04T14:01:00.000-07:00

Oh my. I just had a WOW moment. This wasn't only about my son. It was also about me. I am humbled.

I have been browsing Ten Things Your Student with Autism Wishes You Knew by Ellen Notbohm. I already had Ten Things the Child with Autism Wishes You Knew but I picked up the Student version thinking it might be even better when sharing books with our teachers.

So I am reading along. There are a lot of "oh yeah" moments but for some reason this one hit home.

"I also urge you to be as gentle in your efforts to change your student's or child's behavior as you could reasonably expect of yourself. It strikes me as sheer lunacy how much we expect of our students with autism in the area of behavior modification when we as adults find it so difficult to accomplish ourselves. Every darn New Year's, out come the same tired old behavior-modification resolutions; lose weight, stop smoking, spend less money, exercise more. By the end of January, it's usually all over but the shouting. What real right do we have to expect greater inner fortitude of a child living with perpetual neurological challenge than we are able to muster ourselves."

Duh! Weight loss. I can't even lose 5 pounds (and I have a lot more than 5 that I need to lose). Spending. I can't seem to control myself and I don't even want to talk about exercise. I've tried it all. My inner fortitude is not impressive. How humbling.

I have never been more in awe of my son. The control he does maintain 75% of the time is very impressive. I've often suspected it and here is more proof that he has a lot to teach me.

24 hours of isolation

2007-08-02T08:04:00.000-07:00

You may recall my daydream of 23 days spent in isolation.

Well the warden has issued me a day reprieve. I've been informed that my presence at home is not warranted. I have a motel room a couple miles away where I am to rest my head tonight. I have a massage scheduled at 4pm after which I will be checking into my quiet, dark, aggressively air conditioned room.

What will I do? I have a book I'd like to finish. I have sleep to catch up on. I might just lay there and listen to the silence! When I crawl out of bed tomorrow morning at 10:50am (check out time is 11am) I will revel in the fact that I was not up at 9am driving JP to camp. I will relish the fact that I am not currently checking him out of camp to take him to his speech group.

While I am sitting at a restaurant peacefully eating my lunch I will think about DWAM chasing and attempting to entertain T for the full hour and a half during the speech therapy group. Dad will be anxious as the parent room will have 3 or 4 other parents. He will feel that he has to keep T quiet so they don't disturb these other parents who are watching their children participate at speech time. I wish him luck. I hope he has time to actually watch some of JP during this time.

Around 1pm I will be cruising the mall in search of a present for DWAM's birthday next week. While I am strolling the mall, DWAM and T will be trying to figure out how to pass time until JP's day at camp is done. They will have returned him to camp from speech but find that it would be ridiculous to drive 30 minutes home just to sit for about 45 minutes and then drive the 30 minutes back to pick him up. Oh the agony! Since DWAM only works a few miles away I am guessing that it will be show and tell time. I'm sure his co-workers will welcome the distraction.

Besides with all that driving T would fall asleep. And if T falls asleep in the van it will make it impossible for Dad to walk into camp to claim JP. So that cat nap would ruin the possibility of a real nap for T. Because in T's world a nap is when he closes his eyes. He doesn't register that it was 10 minutes or 3 hours. Guess what! If they closed and they are now open than he is done napping! I have tried to warn Dad but he doesn't seem concerned. So I guess we'll plan for T to have a cat nap tomorrow. Oh well.

After finding the perfect present for DWAM I will head home and wait for my guys to return. Perhaps I will take a nap while I wait. They probably won't be home until 3:30 or 4:00pm.

Should I be evil and ask DWAM what he is cooking for supper? It isn't like he had to work or anything...he was on vacation after all!

July Time Capsule

2007-07-31T18:47:00.000-07:00

A Moment in Time...

What is your favorite...

COLOR:
My favorite color is blue like Thomas the Tank Engine. And brown like Curious George and red like Thing 1 and Thing 2 and yellow and orange for Pooh and Tigger. Wow, that is a lot of colors! Yeah, I know. Do you like one of those best? (no response) Or do like them all? Yep.

BOOK :
My favorite book is about Thomas an d the magic railroad. That is a good book. Isn't there purple train in that one? Yes, his name is Lady. Is Lady a boy train or a girl train? A girl train. So her name is Lady, right? Yes, I know. Lady lives in the magic railroad.

MOVIE:
My favorite movie is Thomas and the magic railroad but in the real circus Thomas will be in trouble. Thomas will be in trouble? Yes. Why is he in trouble? Because he crash into the bricks. Ouch! That has to hurt! I think there will be another way to save. What is that? I don't--It could be a rope a ladder and a rope. What would you do with the rope? I'll use the rope to catch Thomas and pull him back up and put him on the track. Oh, good thinking! Is that what they did in the movie? Yes. What could we use to pull him up if we didn't have any rope? So if we don't have a rope we could use a shooting rope. Cool, a shooting rope. Yes! It could be red. We'll rope it and well have a black box. Good thinking! It will be a long rope.

FOOD:
Zingers. My favorite food is zingers. Are those crackers? Ha! No! What are they? They're cupcakes! Oh, yeah that's right.

DRINK:
My favorite drink is strawberry limeade. Still limeade, huh? I think it is called "Strawberry limeade" not "still limade". Did you get one earlier today? Yeah. Did you buy it? Yeah. We buy it at sonic. Who is we? (silence) You and mommy? Yeah. Or you and Daddy? Or me and Daddy! Your Daddy kind of spoils you, doesn't he? Yeah. Do you like orange juice? Yeah. Do you like apple juice. Yeah. Which one do you like best orange or apple? Fruit punch. Do you like lemonade? Yeah. Do you like pink lemonade or yellow lemonade? I like pink lemonade. Do you like pink lemonade or fruit punch best? Fruit punch. Did you know that when you go to Kindergarten they let you keep a bottle of water with you all day! Yes. Strawberry water? Well, I don't know about that. I'll have to ask Mrs. A if you can have special water. Most of the kids will drink plain old yummy water. Do you think you can drink plain old yummy water? Yes. (doubtful since he wouldn't during JumpStart) But at lunch you get to drink milk! You get to pick between white milk or chocolate milk. (He doesn't like milk. We've pursuaded him to drink some when we mix strawberry flavoring with it.) I have strawberry milk. We'll we do have that sometimes at home but I don't think they have strawberry flavored at school. Would you like white or chocolate? Like white. (I guess we'll see!)

TOY:
My favorite toy is cars. Do you have particular car you likes best? Yes. We have a friend who is a car. His name is Lightning McQueen. Cool, I've heard of him. Isn't he a race car? Yeah. Does he have friends? Yes. His name is the King and Chick Hicks and they race. They race each other! Yes. Chick knocks in to McQueen and he got back on the track. That was super trick!

LETTER:
My favorite letter is Z. Z! Cool. I like Z! Z goes zzzz when we sleep!

NUMBER:
MY favorite number is 10. 10! That is a super duper number. Can you count to 10 for me? 1, 2, 3, 4, 5, 6, 7, 8, 9, 10.

SONG:
My favorite song is about Thomas. What song is that about that? A song about Thomas? The thomas theme song. I'm not sure how that goes can you sing it to me. Ha. I think I can't it comes from a movie not my mouth. But I don't know the words. Can you use your mouth to tell me the words? Yeah. (fake yawn) So what are the words to Thomas? There were T and h and o and m and a and s. That is the words that spell thomas. (SMARTASS!) Well, those are the letters to spell Thomas but I was meaning for you to tell the words that make the song for Thomas. Ha! That is kind of crazy. I gotta go take a bath. (That is true avoidance! He was just mad a few minutes ago that it was almost bath time. He absolutely hates singing and dancing these days. Songs in the movies are okay but not singing by people!)

My additions:

JP has had a fabulous month! He just seems to be getting so old. He is surprising us with questions every once in awhile. I know that our communication skills have grown tremendously these past few months. He is sustaining the back and forth better but I think the biggest thrill I get is when he occasionally takes the lead. Just last night at supper, he was talking to his Dad about riding the Thomas (train) at the zoo next week. I had brought up that we were going to go next week and JP chimed in telling his father that Thomas was his favorite. Then he shocked us by asking his Dad who his favorite was!!!!! I've tried teaching him to ask others but he just never does it unless prompted. Dad played along and I swear they carried on a conversation for 8 or more rounds! I actually got teary eyed!

We are sort of in limbo about appropriate play skills. T is not the best model right now for JP to practice. Unfortunately, when JP uses his words, T ignores him. So then it escalates and JP yells for T to go to timeout. On one level it is pretty cute, but I fear JP trying to put his fellow Kindergarteners into time out. I don't think that will go over too well!

Kindergarten. Eeek! What to say about that. I guess I should preserve my thoughts because I'll never be in this position again. But I think that probably deserves a post of its own. I guess I have 13 more days to get it done!

I am having trouble reflecting on what JP has done this past month. He really took to the home videos I burned onto a DVD. He has watched them over and over again. We have had to re-enact many of the scenarios. This was a bit odd at times since the video was from April. Easter egg hunts in July are a little weird. Otherwise he has really been into playing with his trains again. He has built elaborate tracks in pretty much every room of the house. I think Thomas will forever be a presence in our lives.

We have spent more time outside on the trampoline and the pool. The highlight has been JP doing the slip and slide. Previously he would never slide on it. The cold water turned him off but he also couldn't get the falling down part. He wouldn't even try last year. This year he took to it pretty well. Dad modeled a tummy slide once and JP was off and running. I would say the slip and slide is his favorite activity outside. We still have to have the water turned really low as he doesn't like the cold water.

We had a pool party for our local autism support group. It was a good night. The highlight for me was JP posing for a picture with the policeman we had visit and he even sat inside the police car. He actually had his hands clasped over his ears but he got in it!!! Another spectacular event that night was the fact that he went down the slide into the pool. He clutched the sides the whole time to keep from picking up speed and then just hopped into the water so he never actually got his hair wet but he still went down it several times! Right there he showed that he is overcoming some of his fears. He is trying new things!

He continues to call me Mom sometimes. It is so weird. He is just growing up so fast. I don't think he gets that big kids use "Mom" and little kids "Mommy". He just seems to be doing it. I think it is from some Pooh "Growing up" videos because he has a bit of Christopher Robin twang to his voice when he says it. He has also managed a few other adult mannerisms. I mentioned them on my last blog. There have been a few times lately when he calls us by our first names. It is often just out of the blue. I think it is partially that he is getting better about people in general. In fact, this week was the first time he could actually tell me the name of his buddy at camp. Perhaps people are starting to captive his attention more!

Bed time books:

Yep, this one has not changed for a long time!

Baby T

FOOD: cottage cheese, fruit snacks, cheese, chicken fingers, ramen noodles, macaroni and cheese, Hamburger Helper Cheesy Beef Taco. He is showing more willingness to eat some fruits. He is loving the fork! He will stab everything! In fact the fork has gotten him to eat his green beans again. However, he is still pretty picky. He seems to be not liking crunchy items. He will put a chip in his mouth and then spit it out. The same for goldfish crackers. He is still willing to eat meat but hamburger tends to get chewed up and spit out. We joke that this is a "California Diet". This is in reference to a Sex in the City episode when they visit california and their friend orders a huge steak. He chews and then spits it out so that he won't gain weight! Needless to say, that won't fly here in cattle country!

DRINK: Juice. Typically fruit punch. Absolutely will not drink milk. We've been watering down juices to try and prevent the water phobia his older brother has.

MOVIES: #BooBah and Teletubbies seem to be emerging. He will watch some Elmo on Sesame Street. He loves the Caillou them song but the show doesn't hold his interest. Same thing for Curious George and Barney. He is still a fan of the Wiggles and any Baby Einsten video's. Lately we've been listening to Lion King Sing along songs in the van.

TOYS:

-Climbing doesn't really seem to be an issue anymore. He is pretty capable of getting on the couches and not so interested in getting on tables anymore.
-Fascinated by paper and any sort of writing utensil
-Likes to climb up the rope ladder but has decided he doesn't really care for the slide. I think it gets to hot during the day and he doesn't want to sit on it.
-Is a natural with the baseball tee in the backyard. Any ball works--football, basketball, baseball...shoe.
-Loves to drop the basketball through the hoop.
-Seems to have fallen out of love with the trampoline. I think it is because JP is bouncing more than running and it is hard for T to stay on his feet. Last month JP wasn't quite so tiggerific and T was able to run around the edges with the net. Now when he gets on he just goes flopping down. Still he won't get on without JP.
-Loves swimming in our backyard pool.
-Loves anything to do with the bathtub!

Thomas and friends are probably our biggest fascination. Whenever he gets the change he gets into JP's bedroom to play with the train table. Of course he always knocks down the bridges and all of the little men in the house get upset!

T will push the buttons and dance to the music. He is not really using it to hear the animal sounds yet.

BOOKS:
T loves books! Particularly stuck on a book about baby Grover going potty.

POTTY TRAINING:
T went poop in the potty! On Tuesday July 17th he was grunting and groaning so I sat him on the toilet and he did it! Of course, I have been too late to get him there since. Dad had a little success before bath the other night and then yesterday we had some success. We sat on the toilet right after we did a #2 and managed to pee. He seemed to get a kick out of it. He would start and stop and start and stop and then look up at me and smile. He was quite proud. I think he was making some connections during that episode.

WORDS/ACTIONS:
(against my better judgment I will include these...I'll try not to over analyze)

It is kind of hard to document words. There are a lot of words that he gives us once and then doesn't repeat (for example, "mommy"). He often babbles like he is talking to us but they aren't formed words. Often these are angry babbles so we are probably lucky we don't know what he is saying. Also, a lot of his "words" are just a part of the word. For example, he will always say, "Fly" when he sees a butterfly. He will always say "side" for outside.

The language is coming. I still don't see him as a social conversationalist but then I don't know what to expect for a typical language level at 21 months. He is doing fine. I guess I just wish his development was so over the top that I would recognize it as different that JP's was at that age. But honestly at 21 months I think JP might have had more words. It scares me to say that but I think it might be true. By this point JP could identify a lot of animals and letters. At 2 he was singing the alphabet. Now granted he couldn't ask for juice or for more to eat but he could label items. At this age, his language was there but he didn't use it to communicate or share with us. I would just feel so much better if I heard a "what's that" coming from T. (big sigh)

Words we have heard:
Daddy, BaBa (bottle), ball, I did it!, Bye Bye(with a finger wiggle), baby, straw, bath, puppy/dog, all done, Mama, head, backpack, cup, peek a boo, noisy/sloppy kisses, blows noisy kisses, touches head during "monkey jumping on the bed", wags finger no during the "no jumping on the bed" part, bike, pig, banana, 1..2.."3", ready, set "go", JP, T, fish, cheese, star, moon, train.

Commonly used:
Car, cow, moo, dog, woof woof, cat, meow, read book, night night, butterfly, one two three, ready set go, straw, ball, duck, Daddy, potty, bye bye, bath, hat, outside, NoNoNoNo! More, more chips, mine, sky, Bob (Bob the builder doll), eye, nose(no), mouth(mow),ear(eah), hair(air)

Can point to eyes, nose, mouth, ears, hair, head
If you say bath he will practically run upstairs and climb in.
If you say juice or drink he will head to the refrigerator.
If you say snack he will had to the pantry.
If you say go (or if he wants to go) he will get shoes and try to put them on.
Will give you his feet if you have his socks and shoes to put on. (unless he is in the mood to run away). May even try to put socks and shoes on himself.
Will bring food from the pantry to Mom. Usually goldfish or fruit snacks.
Will run from you (with the naughty item) when you tell him no.
When you upset him he will start babbling at you with lots of inflection. I don't think he is using nice words and I dread the day I figure out what he is saying.
When you sing Twinkle Twinkle Little Star he will say the last word of each sentence when you pause.

Shamefully I will include these...I hope they are nothing but collective moments of paranoia but I need to document them for reference.

Fear of the parachute at YMCA class (now will sit on it. Has been under it-under protest)
Fear of the tunnels and forts at the YMCA class. I put him inside them and he just stood there screaming. (now will climb through the little tunnel at home. Did finally do one tunnel at Y)
Fear of the plastic bubble wrap all the other kids were jumping on at the YMCA class
Huge tears during JP's OT when he tried the "flying apparatus". It is very noisy.
Fear of the trampoline in our backyard. (Then he loved it and now he doesn't again.)
Won't look in the sky when I point at an airplane. They are very noisy yet he is oblivious. (still oblivious...it is the weirdest thing! These planes are LOUD and yet he still won't look up into the sky.) - Finally got his attention with one. Now he will look up and say "sky".
Seems really bashful around other people. (Yet will interact and play along side other kids) Sometimes if an adult talks to him he will shun them and burrow his head into Mommy.

14 Days left of summer

2007-07-30T10:35:00.001-07:00

Dang, time just flies. I can't believe it is almost August already! JP starts school in two weeks! We start incredibly early here. Can you believe we start on August 13th!!!! Doesn't that seem crazy! So many of you don't seem to start until after Labor day!

Our summer has just flown by. It seemed like we just went from event to event and then before we knew it the summer disappeared. We finished the school year then had two weeks before summer school started. Then JP had "Jump Start to Kindergarten" for a week. Now he is at (Day) Camp for another week. Next week he has absolutely nothing except two OT appointments. Then the week after he is an official Kindergartener!

So we have a whole summer to fit into next week. I want to go back to the Children's Museum and to the zoo again. Actually I really want DWAM to take off work and go with us because it is very hard to take both boys alone. We can do it alone but I won't be as successful at pushing JP to try new things. If I have to push him I have to give him 110% of my attention and that is not possible with the T man with us. Of course we could just go and enjoy ourselves but if you recall during our last trip to the zoo JP agreed to try the carousel and the train in August. Well, silly boy, it is now August!

I know that there are times I should just let JP enjoy himself and not push him to take that step forward. But I think this is a time he needs me to push. In fact, his camp is going on a field trip today. They are going to the zoo. And JP has spent the last 24 hours talking about riding on Thomas. He has agreed that if he rides on Clarabel it might be fun. (For those of you that need a translation Clarabel would be the last car. Thomas pulls two passenger cars--Annie and Clarabel.) I can't help but interpret his dialog as him letting me know that he is excited to do this and that he is ready. I still expect him to be anxious and scared but I think he is wanting me to nudge him. I just worry that I won't be able to pull it off if DWAM is unable to join us!

I also have news on our Kindergarten front. I need to update you on our news from the Special Education Coordinator. She called last Thursday to let me know that she "increased our para hours". I am still not completely clear on what that means. I tried to press but she kept it kind of cryptic. What I think this means is that they are planning to start with (the IEP stated) 18 hours of resource teacher in the mainstream classroom providing support during group activities and then use the para to fill in the other 12 hours. Then as JP gets more comfortable they will probably pull back and have the para be the extra eyes and ears for longer parts of the day.

The SEC danced around the issue a bit. Probably not purposefully but because we truly don't know how much time JP will require from the resource staff. I know she doesn't want to say one thing and then have it end up being different. However, I am happy with this news because she did assure me that there will always be two sets of adult hands in the classroom. I am assuming that the ratio of resource time will then be up to the school to establish as we see how JP does. I am very excited because so far the staff at our school has been amazing! Admittedly it has been a pain in the ass dealing with the special education administration but I have to thank them for stepping up and doing what is right. It may have taken the entire summer but we got it done!

So anyway, we now have 14 more days left until my baby starts kindergarten!

YIKES!

Repetition and repeating

2007-07-25T19:06:00.000-07:00

We've been seeing a burst of grownup language around here. There could be several reasons. JP is definitely growing up on us. JP is learning that as big brother it is his place to tell little brother how it goes. JP is stimming on home videos and watching them over and over again. We are learning to be careful what we say.

We have had to re-enact many scenes from our home videos. One in particular has JP and T both sitting at the kitchen table with markers and paper. JP's page had an outline of a snowman. T's had two snowmen. JP had a blue marker in one hand and a grey in the other. He declared that he would not color that day but agreed to "scribble". I played along. We made a game where I said "scribble" and he would scribble then I would say "stop" and he would stop. After he filled up much of his page I told him to switch hands. He complied. I said scribble and stop a few more times. Then I asked him to hold up his picture for the camera.

It was fun the first time. I have now tired of the game. You see we have fought over having the exact same set up. He was in complete meltdown because I would not let him have the blue and grey markers. He wants the same paper. He wants the same markers. I have given in to his script in the hopes that I can tweak it a little more each time so he can learn that it is fun to change it up a little bit. He is reluctantly letting me switch from long markers to short markers and from grey and blue to yellow and red and from snowmen to Lightning McQueen.

There is no denying that videos are a powerful tool for JP. Yes, I know I just complained about it adding to his rigidity but it is also amazing when it comes to his fears. He loves watching a segment on the video that I taped during our field trip to the farm. This was the third trip he has taken there. They have a really cool slide that comes down from a loft into a pile of hay. All of the other kids love it. JP has always refused and retreated into himself. This year I went prepared. I took my new camera with the video capabilities!

Still he refused to do the slide. I kept talking to him while his peers did it. I urged him to let mommy make a movie of him doing the slide. I really don't know how it happened but in the end he did agree to do the slide. As he took Mrs. T's hand to go up the steps he reminded me to make a movie of "JP does the slide". And he did it! He was terrified but he did it! It was so bittersweet because when he climbed out of the hay he came over to me and said, "Mommy, will you hold me?". I even have those words captured on the tape. It almost makes me cry every time.

So anyway, back to the power of video. JP has now watched himself do this slide so many times that he just talks about this slide like it is in his backyard. He tells me that he will do it with his hands in the air next time. (One of his peers that I videotaped did it this way.) Thanks to video JP has visualized himself climbing Mt Everest atleast 1000 times and now it isn't so daunting!

Now the other side of watching these videos over and over again is that I get so sick of listening to me talk. Keep in mind that the two stars of the screen are not talkers. T is only learning and JP is not a conversationalist. He is doing awesome and I am thankful for these movies so I can truly see how far he has come but I spend most of the time pulling words from him on these videos. I absolutely hate the sound of my voice. Does everyone else find their own voice annoying? I swear I do not really sound like that!

So here are a couple scripts that JP has stolen from Mommy!

T, that isn't a very good idea.
JP, can you bring your brother to me.
No, T, that is yucky!

Here are a couple of nuggets that appeared the last couple of days. I have watched these videos and I am certain they are not from me. I don't believe that I use these phrases and I never video while I lecture the boys. I am wondering if these are words of wisdom from our new teachers. They aren't bad comments but the sound a little funny coming from our little man.

Here is the scene... the boys are in the backyard finishing up playing in the pool and with the slip and slide. Daddy is telling him that it is time to go in. JP doesn't want to quit.

Daddy, your not listening to me. Casey, you need to listen to me.

(Yeah, it is a little strange having him use our first names. I know this is a normal kid thing to sometimes call their parents by their first name but it is especially weird for us. He isn't doing it to be a brat. He is just dealing with us how he thinks he is supposed to deal with someone who isn't listening to him. Hip Hip Hurray that he gets that Daddy is Casey! The craziest part is that he may or may not tell another adult our names if they were to ask him! )

Here is the scene... Mom declared that we were going out to eat. JP decided that we were not going to Applebee's but rather to Arby's. He hasn't eaten at Arby's in months. I did bring home a sandwich a few weeks ago but it was really a non-event. I wasn't aware that he even realized he was eating roast beef that didn't come from our refrigerator. Dad tells him that Mom decided that we are going to Applebees and that is that. As we pull into the Applebee's parking lot JP says in a voice that keeps getting louder and louder...

What DID I said about Applebees? What did I SAID about Applebees! Daddy, what did I said about APPLEBEES! No Applebees!

Kindergarten...a preview

2007-07-24T13:09:00.001-07:00

Today was our first day of official preparation for Kindergarten. Our school is having a"boot camp" of sorts where the children get to come in for a trial run before the school becomes overrun with 300+ kids with all the grades. They arranged for half of the kids to come on Tuesday and the other half on Wednesday. Then all of the Kindergarteners will come on Thursday for a half day. The parents join them at the end of the half day for a picnic.

I requested that JP attend all 3 days for extra practice with the routines as well as a chance to meet his peers in a smaller grouping. The staff quickly agreed and treated my request as a non-issue. Have I mentioned that I really like our school?

This was also going to be a wonderful opportunity for JP and Mrs. A to get to know each other better. Unfortunately, Mrs. A had a death in her family and had to travel out of state. So we lost this opportunity to get a jump start on that relationship but it is still going to be a very helpful situation.

So today was Day 1. I have primed JP for this event. We have talked about their schedule and that it will be with different teachers and different children. I explained that it was at the same school but a different room. I tried to explain that the kids would be the kids that he goes to Kindergarten with in August. The school is calling it Jump Start to Kindergarten. Unfortunately, he is confusing it with his Jump Start Computer Game. He likes the game but it has created confusion. This was evident this morning when I told him were were going to "Jump Start" for a practice session at Kindergarten. He was cool until we pulled into the parking lot. He yelled, "Not Brymentary school! Jump Start!".

Fortunately, he kept it together. He was not very social to his teacher when we walked up but he went with her willingly. Fortunately, Mrs. G, who was with him during summer school was there to be his aide. He and she seem to do really well together.

So I sent him off with Mrs. G and joined the rest of the parents for a tour and talk with the principal. Have I mentioned that I really like the principal, Dr. R? She rose through the special ed ranks so she is very friendly to our plight. It was weird to be in the midst of the other parents who for the most part are only beginning to realize that they are sending their children off to school. They asked questions that we have asked and answered (or attempted to answer) months ago. She even gave me a couple knowing looks as she gave the parents their answers.

After the parents cleared out, she asked me if we had a meeting set up yet? I wasn't sure how to answer. Since I haven't heard from the Special Ed Coordinator yet I can only assume that this is the route we will be going. We casually spoke about my frustration that it has taken this long and Dr. R politely agreed that it is not right to have this drag out like this. She did assure me that JP will not start school without an extra aide in there even if the school has to arrange those supports in house. She alluded that they have hired a couple of paras for other areas of the school who have some autism experience. So essentially, the school is covering their basis. Again, did I mention how much I like her?

So T and I left the school and enjoyed our first of many days to come without our big brother. It was strange. It will take some getting used to. However, I do think it will be good for all of us!

When we returned this afternoon, JP came running to me. He doesn't usually show such excitement to see me! He was wearing a crown with his name on it. He was smiling. Mrs. G followed him up and said that he had a great day. She shared that when the PE teacher had them lined up and told them what they were going to do, JP yelled, "Oh cool!". She commented that JP is such a cutie and that it is hard not to fall in love. I am so relieved that these critical adults in his life ARE falling in love. I am so glad that they are seeing the beautiful spirit inside and not just the quirky autistic traits that often cover the surface.

(JP and I had a conversation today document his memory and his ability to share the events of his day. You can follow along on today's conversations blog.)

Can it really be this easy?

2007-07-17T17:33:00.001-07:00

Okay. I know that this is a little yucky but I have to shout to the world...

T made poop in the potty!!!!
This is such a weird feeling. He is 20 months old! I am not sure if this is how potty training is supposed to work. Is it really supposed to be this easy? Can anything be this easy?

JP was nearly 4.5 before he finally went #2 in the toilet. He was 4 before he even peed in the darn thing! Toilet training was a huge fiasco with JP. He refused to do it. He would wait us out. We eventually went so far as to have a battle of the wills and it took 6 hours (with first morning urine) before he couldn't take it any longer!

With JP there was no practice. We had no successes until finally one day he just decided to do it. We've only had a handful of accidents since.

Finally we just decided to push him. When he turned four we told him four year olds don't get to wear diapers. The little twerp decided then and there that he was skipping 4 and started telling people that he was going to be 5. This was so crazy because most of the time he wouldn't even answer people when they asked how old he was. But then all of a sudden he changed his answer from "I'm 3" to "I'm 5". Apparently, in his world, four year olds didn't get to wear diapers but 5 year olds could!

So right after his 4th birthday we took the diapers away and cleaned up mess after mess after mess. It took a full month of messes before he conceded to peeing in the toilet. It took another month for him to decide to poop in the toilet. Finally one day after more than 2 months of cleaning up messes he just decided to do it. And there has been no looking back since.

I share JP's story because that is my experience with toilet training. I am having a hard time wrapping my brain around the fact that my BABY used the toilet. No fight, no fuss. He thought it was cool. He was excited. He knew he did a big boy thing! He was proud.

Oh, I know this is far from over. But WOW! I am feeling so much lighter right now. Isn't motherhood grand! The things we want to shout out to the world!!!

My brilliant baby used the toilet! Yippee! Apparently this little guy was bestowed on us to show us that life doesn't always have to be a struggle!

Crossed fingers

2007-07-17T08:12:00.000-07:00

Saturday was a crazy day. The boys were feeding off each other and SO incredibly hyper AND I had a bit of a headache. Bless his heart, DWAM told me to go take a nap. So I did.

30 minutes later he woke me up. Huh? I was so disoriented. Why would he be waking me up? He was holding the phone. I immediately thought a loved one was dead. Then he told me that our Special Education Coordinator was on the phone. Huh? You have to be kidding me! On a Saturday? I've been waiting all summer for a response and she calls now during a much needed nap. Seems fair.

So I shake my head and try to get the cob webs out. As I am walking out of the bedroom DWAM says she has been out of the country. My heart skips a beat. Just the night before I had vented on my blog...

I have not received a single correspondence from this person. For all I know she hasn't even opened my original email! For all I know she is sitting on a beach in the Bahama's drinking Coronas.

I stutter stepped and gulped. For a minute I became paranoid that she had read my blog and was messing with my mind saying that she had been out of the country. Had she said that she was in the Bahamas I think my brain would have imploded. Right then and there I decided to stop blogging about any specific people! And after today I will follow that principle.

So it took me a few minutes to get my heart rate down and talk coherently. We talked for a good half hour. Unfortunately I had to start at the beginning because I didn't get the feeling that she had much info in her case file. Actually it almost felt like she was just returning my call. Perhaps the receptionist had caller ID and did take a note on Thursday when I called. At the time I was shocked by the Coordinators "unavailable" status. I didn't not volunteer to leave note. In fact, I wasn't really very polite about the whole situation!

So anyway, we started at the beginning and I updated her with my concerns. She listened and seemed very professional. Her suggestion was that we reconvene the IEP team. But my dilemma was that every member of that IEP team had already told me they were in agreement with us. But I couldn't come out and say that the teachers have told me that they feel he needs X, Y and Z. I don't want to put their butts on the line. I want them to feel comfortable talking to me. They need to know that I won't use what they say against them in the court of special ed law! So far they have been very good about telling me what to fight for. I don't want them to clam up!

It is my understanding that the principal has already requested full classroom supports. We have requested it. The bottleneck is the Coordinator. Hopefully she can evaluate the classroom situation and approve our request. Even if we met with the IEP team it would still come down to her needing to hear it from the teachers and probably visit the classroom and see for herself that this is necessary. She is supposed to get back to me by July 27th.

She did inform me that if we have to reconvene the IEP team that the meeting couldn't be scheduled until August 10th. That is the first day available for the school staff. That is the Friday before school starts! I imagine that if she does come around we will still have to meet on the 10th to change the IEP to reflect these supports. I can live with that. Atleast then I know that we have a definitive plan in place before school starts!

I emailed the summer school teacher and asked her to try and present some data about what JP's difficulties have been this summer. His summer school teacher has had 20 years teaching in a self contained special education room. She is now teaching regular ed 1st graders. If the Special Education Coordinator can't appreciate her insights than this whole thing is a lost cause!

So, anyway, I have my fingers crossed.

100th post - What 100 means to me

2007-07-13T20:15:00.001-07:00

I've been dragging my feet about posting lately. You see this is a milestone. This is my 100th post. I kept thinking I needed to be clever and come up with a list of 100 somethings. But a hundred is a lot! I am thankful for a lot of things but it would get monotonous to list 100 things. I am bummed about a lot of things but it would be too overwhelming to list them all out like that. Besides that would be a downer. This is an important post. It is a milestone of sorts but 100 somethings just isn't coming to mind.

Until last night. I was deep in thought about our continuing saga with the local school district. I haven't updated you all about it because I am still trying to process what it all really means. But last night at 2:32 am I realized what 100 symbolizes for us. One hundred is how many days it is going to take before we get any sort of resolution on our request for full time support for JP in his mainstream Kindergarten class. Are you confused? Join the club.

Here is the summary of our saga:

May 9: This was our final meeting on our IEP.

May 11: This was Kindergarten Roundup. This was a half day for all incoming Kindergarteners. This event raised questions in our minds about whether we could live with the IEP supports that were put in place for JP.

May 25: This was JP's last day of school. In talking with both of his current teachers I got the feeling that they were also a bit uneasy about the level of supports. This reassured me that my gut instinct was right and that I needed to push for a greater level of support.

(Okay...here is where the counting starts. DAY 1)
May 30: I sent an email to our Elementary team thanking them for all their support and expressing that I am excited for next year. I also laid out my case for re-evaluating our plans for classroom support.

May 31: Last day of school for our school district.

June 1: I received a response from the principal stating that she agrees with my assessment. She has put in a request for more supports but it has been denied. She suggested that I communicate my concerns with the special education administration.

June 11: I sent an email to the Special Education Coordinator who I gave the pseudo name, God because she yields such great power when it comes to our future. However, please refer to my disclaimer about the use of this analogy.

No response the first week. I figure that this was down time between when school got out and summer school started. Perhaps they were out of the office.

No response the second week. Well, they are back for summer school.

The third week I started to lose my faith. I talked to our summer school teacher and she expressed that the coordinator had visited the room the first day of summer school. She also expressed that she would "probably get herself in trouble" but she emailed the principal expressing that she felt that JP and Mrs. A would need full time support in Kindergarten.

July 1: It has been three complete weeks since I made my request directly to the Special Ed Coordinator. (33 days since my original request) I send a follow up to my email saying that if I do not get a response this week I will be calling next week to set up a meeting where we can talk about it in person. The holiday fell during this time and we were going out of town. I figured she would likely be taking some time off as well with the holiday. I tried to be polite and set the meeting after the holiday.

July 9: I put in a call to the principal to see if she has heard anything. I haven't heard back from the principal.

July 12: I call the special education office to speak to the Special Education Coordinator. I am told that she is "off contract" and will return to work in August. I can leave a message and she will get back to me when she returns to work. Huh?

So here I sit on July 13th. It has been 45 days since my original request for my school district to reconsider the level of supports JP needs for his free and appropriate education in his least restrictive environment. I have been told that it will be day 64 before the person who is needed to evaluate my request will return to her job. She isn't the final decision maker. She will have to pass on our request to members of the board higher up on the food chain.

13 days after she returns to her desk and 76 days after my original request JP will start Kindergarten. I don't see our request getting pushed up through the special education hierarchy, getting approved as well as an appropriate staff member hired within those 13 days.

Our IEP states that we will meet 4 weeks into the school year to re-evaluate our supports. Since school starts August 13, that 4 week meeting will fall the week of September 3. September 6 will be the 100th day since I made my request.

Rest assured we will not be waiting 4 weeks to have this meeting. And I will not be sitting here waiting patiently until she sorts through her entire inbox on August 1st. This is insane. I am not really sure where to proceed. A local advocate theorized that the Special Ed Coordinator is likely working the issue and we are being processed even though I don't know it. But where is the proof of that. I have not received a singe correspondence for this person. For all I know she hasn't even opened my original email! For all I know she is sitting on a beach in the Bahama's drinking Coronas.

On one level this feel like a violation of IDEA somewhere. Surely they must reply in a timely manner. I totally feel like we failed JP in our IEP. We should have fought harder for full time supports from day 1. We got lulled with their agreement for 18 hours. That is a lot but it has become apparent that he needs more. Especially during the start of Kindergarten! I can assure you that we have learned our lesson about not giving in on a fight. Without a doubt, it has to be easier to get things done during the actual IEP process!

The only thing that keep me from going bonkers is that I know that the entire staff at our elementary school is in agreement with us. I feel like it is just a matter of us going through the motions and getting through the bureaucracy. But I also worry because you always hear teachers commenting that they know children need services but the system will not provide them. Our teachers are on the front line. They see the reality. But the perspective of the administrator is much different. It is all about money not needs. I hope our teachers will have a say. Nevertheless, I know that I will have a lot to say once I get a live body to talk to!

So back to the 100. It is kind of lame but that is my spin on my hundredth post. I am not listing 100 things I am thankful for or 100 cute things my kids do. I am detailing 100 days of frustration. I find it interesting how my God analogy played out. I have decided to take it all back. The Special Education Coordinator is not comparable to God. Yes, she has power to alter the life of my child. But let's just compare efficiency. He created the world in 7 days. He took one day for rest. It is going to take 64 days before my school district will even acknowledge my request. If it takes them this long to read an email I fear how long it takes them to actually get these supports in place. And then to top it all off after a full school year of such efficient work, she is given a full month (July) of sabbath. I might be wrong but I get the impression that God still checks his email on Sundays!

DWAM warned me that I might get struck by lightning for using the God analogy for our Special Education Coordinator. I am starting to believe that my getting struck by lightning is more likely than us getting any resolution on this matter.

(If you are crunching the numbers and counting my posts, I must admit that I have pulled a few posts along the way. But I am going to still claim credit for them since they are still in my blogger account. Blogger tells me this is my 100th post. )

Deja vu

2007-07-09T08:56:00.001-07:00

Do you hear that? It is peace and tranquility. We are home. Yes! Home in our own house! We actually slept in our own beds last night!!!! We got home yesterday from a 5 day visit with the extended family. It was a busy time. We had a 4th of July celebration at a lake, a birthday party for a friend's 2 year old twins, and a wedding!

Each event was an experience. I could write for hours analyzing the ups and the downs. But I think I can sum it up with a summary of our day at the lake.

This was a bittersweet experience. I remember 3 years ago attending my uncle's 4th of July bash. This was pre-diagnosis. Three years ago JP FREAKED out at the fireworks. We knew this couldn't be "normal". There was clearly some severe anxiety wrapped up in this little guy. Little JP planted himself inside the house and screamed if anyone opened the door. Three years ago, this was a very hard day for us. This year it was a very hard day again.

Three years ago he shrieked and was inconsolable. This year he initially hung around outside and even showed interest in the lake. Still he was very nervous and cautious. Then the cousins brought out the fireworks. He froze like a deer in the headlights. He watched as they prepared for the first boom. It was as though he knew what they were doing but couldn't believe it. I had tried to prepare him for fireworks. I got down on the patio with him and tried to talk him through that first explosion. We cuddled together as we expectantly waited for the boom.

BOOM!

He shrieked. His hands flew to his ears and insisted that they (the fireworks) go away. "Fireworks are for night time" he said over and over again as he ran inside the house. His hands squeezed over his ears whenever anyone opened the patio doors. And if anyone made the mistake of only closing the screen door (and not the glass door) he quickly ran to to the door to remedy the situation.

Yes, I know we have made progress. Last year he drove around with me in the van and watched the fireworks in the sky. We parked and watched from a distance while we ate popcorn. We have checked out books from the library about fireworks and he can practically tell you how they are made. But these experiences are about the light up the sky glorious fireworks. Not the nuisance boom-boom-bang firecrackers. He absolutely does not get the day time firecrackers. They scare him. He can't identify when the boom is coming. I have to agree with him though--what is the point? Atleast the night time sky fireworks are pretty to look at.

It was a hard day. Once the fireworks started JP was out of sorts. I felt bad because my uncle told the cousins that they couldn't do the fireworks. But that didn't feel right. They were at Grandma and Grandpa's house (my aunt and uncle) for the 4th of July. They should have fireworks. Besides everyone around us was letting off fireworks. It didn't really matter to JP if his cousins joined in. He was a prisoner to the house either way.

Ultimately, we took our boys for a ride in the van around the lake while the cousins did their day time fireworks. We came back for the barbecue. We ate inside. Most of the family took a few minutes here and there to hang out with us inside. But this was a barbecue. This was a barbecue at the lake. This celebration was designed to be outside. We attended the event and they did their best to include us but we really didn't belong there. We left well before dark.

Again, I know that JP has made huge progress. I am thankful that he was now able to explain his feelings. I am just sad that these fears exist. Every other child there was drawn to the booms and bangs. His cousins kept peeking in a back bedroom where Grandpa had the entire bed covered with fireworks. They were eagerly anticipating Grandpa's fireworks display that night. When JP saw the room he freaked out and we had to shut the door in order to calm him down.

On one hand I look at my wonderful boy and I see how far he has come. He is doing amazing. Still it was painful to see that in some ways we are exactly where we were three years ago. As much as I wanted to be there and be part of the family, I couldn't help but feel like an outsider. I couldn't help but feel like we were limiting their celebration. Don't get me wrong. They didn't make me feel like we were not welcome. Quite the opposite. Still I just felt bad curtailing their fun when JP wasn't really enjoying himself either.

So I can't help but dwell on the concept of inclusion. Is inclusion really what it is all about? We were included at this event but no one really got to enjoy themselves. JP was uncomfortable. The rest of the family was restrained. I just couldn't help but think that they would be having more fun if they didn't have to accommodate us. And before you think that I am elbow deep in a pity party I need to say that a huge part of my concern was also that JP would have been much happier having not been put in that situation. He really shouldn't have to be somewhere that he is clearly that uncomfortable. But this was our family and this was a family event. Shouldn't we be there?

So my question is this...where do we draw the line at trying to be included and when do we say no thanks?

June Time Capsule

2007-06-30T11:59:00.000-07:00

A Moment in Time...

What is your favorite...

COLOR:

My favorite color is all the colors like Bob the Builder. What colors are those? They're a lot of colors. He builds and builds. Let's talk about another color. What color? Blue like Thomas. You like Blue? Thomas has blue. Yep. What else is blue? Um. Gordon. Yeah. Anything else you can think of? Lightning McQueen is red. Edward! What about Sally? Oh! Yep! Now let's talk about bedtime. What about bed time? About when I hear fireworks. You hear fireworks at bedtime? Yes, I can hear them outside. Do you like them.? Yes, I can hear them outside out my window. Would you like to stay up late and watch them outside? Yes. When I drive in my car I can often hear them. Yeah, that is how you and Mommy did it last year. But this year we could just sit in our backyard and watch them. Ha! I don't think so. That would be a huge job. I know! Why don't we watch them in the van when we drive along. Do we need to take popcorn again with us? Uh, okay. Maybe. In my bed I can watch fireworks. Well, I don't think you'll be able to see them out your window very well. Ha! I think I can do that! What color of fireworks is your favorite? My favorite is red, purple, yellow, red. Cool!

(We are seriously concerned about the fireworks. Unfortunately with the 4th on a Wednesday we got a full neighborhood display this last weekend and it seems to be continuing right through the holiday.)

BOOK :

My favorite book is Thomas and Friends Making Tracks to Great Destinations. Why is that book one of your favorites? What do you like about it? Gordon slides into the snow. Oh, that sounds cool. Do you suppose he gets stuck? Yeah. Edward pulls him out of the snow drift. Wow! Good thing for Edward. What a good helper! Gordon lives with his good friend Percy. So Gordon and Percy are good friends, huh? Yeah, they pull coaches with people. Who are some of JP's good friends? Thomas. Do you have any people friends? Hee Hee! I don't have any people friends, Mom! (Crack! That is my heart breaking!) Sure you do. But I don't, Mom. (nervous giggles...Hee Hee). What did Mom say friends are? (no response) Friends are people you play with. (hee Hee...not people.) Who do you play with JP? Bob the builder. No, I mean real children that you play with? Not children! Just mans. Do you have man friends? Yeah! Who? Bob the builder. Do you have friends that are not on TV? Hee Hee. I think there is mans on TV, Mom. Are there children in your summer school or in speech that you play with? No, Mom! Do you play with Jonathon? Yeah. But I know! I got an idea. What is that? Let's look at something. I'll be right here. Are you going to get something. Yeah. I found the soccer ball. Are there children you played soccer with. Yeah! Who? The teacher teaches me how to play soccer. Was Jacob on your team. Yeah. Is Jacob your friend? Yeah. He likes trains too, doesn't he? Yeah. Is Graham on your soccer team. (fake yawn) Yeah, but I am yawning. What does that mean? That means I am getting sleepy. (It is just before bedtime) Hum, I think you have to take a bath first. Hee Hee! No, Mom. We can't take a bath!

(Sadness. Pure sadness engulfs me. Will he ever understand this friends thing? Kindergarten is going to be so rough!)

MOVIE:

My favorite movie is my soccer team. You like the movie Mommy made of your soccer season! Yes, Mommy! What is your favorite thing about that movie? Uh, me playing soccer.

FOOD:

My favorite food is cake. You know, I don't really believe you because you don't actually eat cake. Can you tell me a food that you like to eat. I think cake is food that we eat. Did you eat all of your cake at Kyli's birthday party? Yes. I did it in the back morning. I think you ate the frosting but not the cake. You gave the rest of it to Mommy to eat. Would you maybe say that your favorite food is grapes? Hee Hee. Yes, Mom! Maybe your favorite food would be peaches? Yes, Mom! Maybe your favorite food would be zingers. Yes, Mom! So tell me what you would you say your favorite food is? APPLES! (Now that is an answer I will believe)

DRINK:

My favorite drink is Strawberry limeade! Yeah, I would agree with that. Is there a black drink that you like? Yes, Coke and Pepsi. Do you like Coke/Pepsi more or Strawberry limeade best? Strawberry limeade.

TOY:

My favorite toy is Thomas and his friends. Thomas and Annie and Clarabel take children to the seaside.

LETTER:

My favorite letter is A. Why A? Because it says "Ah" as in apple. What else does "A" spell? It spells favorite. Really? Look at the word on the computer screen. Right there. See it. What letter does favorite start with? F. Does A spell airplane? Yes! Does A spell Penguin? Hee No Mom! What is that first letter in penguin? P!

NUMBER:

My favorite number is 1. Why 1? Because we could count. Let's talk about more numbers. What number do you want to talk about? (counts to 10) Can you count backwards? (counts backwards) Good job counting!

SONG:

My favorite song is about Thomas and Friends Making Tracks to Great Destinations. I also like sing along songs about the stations.

My additions:

JP has really had another great month. I look at him and see him growing up so fast! He has adjusted to our new schedule of chaos very well. He has transitioned to summer school without a fuss. I don't think he is performing at the level he was with his last teacher but that will take time. Of course, this teacher is only for summer school. Then we get to learn a new teacher when school starts. He has to get comfortable with a new school, new teachers and new kids! It is going to take awhile! But I have been amazed at how he has just gone with the flow.

The past few weeks have been a lot better about video watching. He is currently in full Thomas mode. He has been watching one library Thomas video but he spends most of his time putting tracks together and scripting Thomas stories. Of course, he has probably 100 trains but the ones he keeps asking for are the ones that were recalled. I pulled them out once but he found them before I got them mailed off. But they are hitting the mailbox this week! He did shock me this week by asking for an Annie and Clarabel. I told him that they had to be here somewhere. He repeated himself and told me we don't have them and he needs them from the store. He even pulled out one of the thomas flyers that comes with the trains when you buy them. He keeps these and reads them. He showed me Annie and Clarabel on the flyer. I thought for sure that we would already have these trains because as they are vital Thomas characters but DWAM told me that we do not actually own them. I'm not sure how that oversight occurred but it was cool that JP was right and did such a good job getting his point across to his dense Mommy!

I guess most of our transport time to therapies is spent watching videos. Mostly we watch a couple Baby Pro videos about sports and swimming. JP is actually showing an interest in hitting the baseball and he finally gets that you run to the base. We've been seeing more initiative with baseball, soccer and basketball. He also loves the swimming video but we still can't get our head under the water.

He is still a big Bob the Builder fan but not so much about the videos. He listens to his CD at bedtime while he reads along in the book. He also becomes Pilcher, the cat, whenever he gets bored. He will slink up next to you and cuddle (like a cat) and meow the sweetest little meow. It is cute but gets old fast! On the good side is if you ask Pilcher a yes or no question JP will actually nod his head yes or no while he meows. This is huge because he never guestures with head nods. We've been targeting this for a long time!

The only dark side is merely worth mentioning. JP is getting more verbal about scolding other children. He does this a lot with T but I have witnessed it with other kids a few times lately. We will continue to work on appropriate ways to talk to other children. I have also seen him push T a few times and even swing his arm around like he was going to clock him. I don't know if this has been learned in our few short weeks at school but it isn't acceptable. And it will likely get his butt kicked at school! So we are starting to work more on "anger management".

Another quirk from out of no where is his use of the word, "Mom". It seems to be scripted how he uses it but it always takes my breath away. It feels weird to have my baby calling me Mom rather than Mommy. I suppose this is inevitable as he grows up. I actually asked DWAM a few weeks ago at what age he thought we should shape JP's language to Mom and Dad rather than Mommy and Daddy. I thought we would have to target it. So I guess this is cool. Still bittersweet!

Bed time books:

Baby T

FOOD: cottage cheese, fruit snacks, cheese, chicken fingers, ramen noodles, macaroni and cheese, Hamburger Helper Cheesy Beef Taco, pickles, popcorn, potato chips. He is getting more picky. In fact the last week he hasn't eaten much. He is getting all four molars and I think they are slowing him down.

DRINK: Juice.

MOVIES: #1 Any Wiggles, #2 Any Baby Einstein video.

TOYS:

-He is better with the climbing. He still can and does but he isn't constantly seeking something to climb on.
-The real phone...not interested in the fake kiddie phones. (Even says hello...DaDa blah blah blah)
-Loves the shape sorter.
-Fascinated by paper and any sort of writing utensil
-Likes to climb up the rope ladder but has decided he doesn't really care for the slide. I think it gets to hot during the day and he doesn't want to sit on it.
-Is a natural with the baseball tee in the backyard. Any ball works--football, basketball, baseball...shoe.
-Loves to drop the basketball through the hoop.
-Loves to jump on the trampoline with JP. Won't do it without JP.
-Loves swimming in our backyard pool.
-Love anything to do with the bathtub!
-Is fascinated by the toilet. Will put his potty seat on the toilet and climb on top. Has been known to take toilet paper and simulate a wipe. Just this week he didn't bother to rip of the toilet paper but rather wiped with the entire roll and then threw it in the toilet.

T will push the buttons and dance to the music. He is not really using it to hear the animal sounds yet.

T loves to scribble and draw. Any pencil or paper found is fair game. He loves to use the Doodle Pro but tends to use the shapes to make designs.

BOOKS:
T loves books! Particularly stuck on a book about baby Grover going potty.

WORDS/ACTIONS:
(against my better judgment I will include these...I'll try not to over analyze)

Have heard:
Daddy, BaBa (bottle), ball, I did it!, Bye Bye(with a finger wiggle), baby, straw, bath, puppy/dog, all done, Mama, head, backpack, cup, peek a boo, noisy/sloppy kisses, blows noisy kisses, touches head during "monkey jumping on the bed", wags finger no during the "no jumping on the bed" part, bike, banana, 1..2.."3", ready, set "go", JP, T, fish, cheese, star, moon, train.

Commonly used:
Car, cow, moo, straw, ball, duck, Daddy, potty, bye bye, bath, book, outside, NoNoNoNo! More, more chips (two words!!!) .

Can point to eyes, nose, mouth, ears, hair, head
If you say bath he will practically run upstairs and climb in.
If you say juice or drink he will head to the refrigerator.
If you say snack he will had to the pantry.
If you say go (or if he wants to go) he will get shoes and try to put them on.
Will give you his feet if you have his socks and shoes to put on. (unless he is in the mood to run away). May even try to put socks and shoes on himself.
Will bring food from the pantry to Mom. Usually goldfish or fruit snacks.
Will run from you (with the naughty item) when you tell him no.
When you upset him he will start babbling at you with lots of inflection. I don't think he is using nice words and I dread the day I figure out what he is saying.

Shamefully I will include these...I hope they are nothing but collective moments of paranoia but I need to document them for reference.

Fear of the parachute at YMCA class (now will sit on it. Has been under it-under protest)
Fear of the tunnels and forts at the YMCA class. I put him inside them and he just stood there screaming. (now will climb through the little tunnel at home. Did finally do one tunnel at Y)
Fear of the plastic bubble wrap all the other kids were jumping on at the YMCA class
Huge tears during JP's OT when he tried the "flying apparatus". It is very noisy.
Fear of the trampoline in our backyard. (NOW HE LOVES THE TRAMPOLINE!!!)
Won't look in the sky when I point at an airplane. They are very noisy yet he is oblivious. (still oblivious...it is the weirdest thing! These planes are LOUD and yet he still won't look up into the sky.) - Finally got his attention with one. Now he will look up and point but doesn't say anything.
Seems really bashful around other people. (Yet will interact and play along side other kids) Sometimes if an adult talks to him he will shun them and burrow his head into Mommy.

A disclaimer for the local folk

2007-06-29T21:17:00.000-07:00

DWAM would like me to include a disclaimer. He is uncomfortable with my play on the title of God. I can't really bring myself to change all of my postings. Besides I can't refer to our Special Education Coordinator by name and it is too much work to type out Special Education Coordinator every time I want to talk about the Special Education Coordinator. See what I mean! Besides it took me about 3 minutes to type that sentence. For some reason I do typo after typo when making the words "Special Education Coordinator". So I have to create a pseudonym for the Special Education Coordinator. I do not intend this as a blatant insult to the Special Education Coordinator. I would assume that if the Special Education Coordinator read my blog it might make her upset. However, she would have to realize that this is my personal outlet for therapy. I am blogging to my fellow autism parents looking for advice and support. This isn't really about the Special Education Coordinator. This is about a parent trying to navigate the special education hierarchy. Yes, the Special Education Coordinator is a critical player in this hierarchy but I understand that she has a job to do. I've worked Corporate America. This is business. She has limited funds and a growing list of children that need supports. I really don't want to risk making this feel like a personal attack on her. Personally, I feel that the worst thing we could do is mix personal feelings with business (and then religion on top of that)!

In fact, I really got along well with the Early Intervention Special Education Coordinator. Actually, I am very thankful to her for getting JP in the special placement he had this past year. She also really came through for us in getting as much support as we did at our initial IEP meeting about next year. I don't really know the Elementary Special Education Coordinator yet. Hopefully, we will get to be on friendly terms throughout the years. My only personal knowledge of her is from our IEP and now from the lack of response to my letter. I would love to come back to report to my blogger friends that she is really a warm and fuzzy person. She may very well be. But this discussion is not personal...it is business.

And she really is the person who ultimately makes this decision. This decision greatly impacts my son's life. She is a powerful being--hence the God comparison. I don't mean to imply that she thinks of herself as a God. Now, if anyone local should read this, please know that this title is used to illustrate her authority rather than her behavior. And for the love of God (the real God) please don't share my blog with her.

I have shared our blog with a few of our former teachers and local families. I like knowing that some of JP's local fans are able to keep up with him. There are some really special people who have entered our lives. I like that they can visit our site and catch up on JP's developments. However, I do regret that at times this makes me feel censored. I prey that my play on words (which I would agree could come across as a bit disrespectful) will not get in the way of my son getting the services he deserves! I guess I am making a leap of faith here but I trust in these school friends. Lord help me!**

A crisis of faith

2007-06-29T07:25:00.000-07:00

**PLEASE READ THE FOLLOWING DISCLAIMER BEFORE PROCEEDING TO THE FOLLOWING PARAGRAPHS**

Almost 3 weeks ago I sent a letter to the special education God.

She still hasn't replied. That first week was our second week of summer so I thought maybe it was her sabbatical. I didn't feel the need to pressure her. That second week was the first days of summer school. I thought surely she'd be back in her office and a response was eminent. This was the third week. My faith is diminishing. It is time to gather my flock for our journey of enlightenment.

I talked to our summer school teacher. She is a 17 year special education veteran who is now teaching general education class of 1st graders. (If you are perplexed why JP's teacher is a 1st grade teacher you can read my Decisions and more decisions chapter of our saga.) Unfortunately, I must admit I feel like I do not currently have a handle on what JP's level of participation is in this classroom. I haven't asked to observe the class. Perhaps I should. However, his teacher did say that the classroom aid (they were assigned for JP) is pretty much by his side most of the time. This aid is only there for the 1 1/2 hours of the 2 1/2 hour summer school schedule. However, I believe that the school itself is funding her to be there the extra our. I also have to factor in that these are incoming first graders and the material is likely pretty foreign to JP. Yes, he is academically advance for an incoming kindergartener. Yes, he knows his numbers, letters, is reading a few words. But the long A sound. Nope, he isn't there yet. He is keeping up but he is not doing so without adult assistance.

Anyway, I am getting off on a tangent. I told his summer school teacher that I was looking for information on how JP is succeeding (or not) in the classroom. I needed to know so I would know what to say in our discussion with God about a aide for next year. Her response was, "I'll probably take some heat for this but I did send an email to the principal and tell her that he needs a full time aid in the classroom." Thank you! It appears we have another believer in our midst.

So if you are keeping score with us...we are now at 13 to 1. At IEP time it was 10-1 but we now have the 1st grade summer school teacher (our future 1st grade teacher), a resource teacher who is partnering in our summer school class and the para who is assigned specific to JP for a part of his day. Still that 1 is a pretty powerful force.

I commented that I would be following up with God since I hadn't received a response. The teacher did tell me that God visited the classroom during the first day of summer school. (Hee! Hee! Who says God isn't allowed in our children's schools!) So I know that we are on her radar. Nevertheless I have not heard from her. It is time for me to up it a notch. I need a response and they now have their own live data from JP in their classroom.

Perhaps she is confused by my analogy. I am not in prayer here. This is a two way discussion. She may control the funding for the school district but she still has to adhere to the 11 commandments. Did you know there was an 11th Commandment? Free and Appropriate Education!

A fun day out with my boys

2007-06-25T19:32:00.000-07:00

Lots of interesting quirks today.

The boys and I went to the zoo. JP and I used to go a lot. We have a season pass so we can just go walk for a couple hours and not feel like we have to "recover the outrageous cost of admission". We went for the exercise and the view. But last year was different. It was just too much to keep track of JP. T now got to use the stroller and JP has had to learn to be a big boy and walk. We had lots of new issues ranging from sensory to just plain wildness. DWAM took off a couple times so that we could go as a family but it still wasn't the same.

Well, here it is late June and we still haven't been there. Our schedule is crazy as JP has activities all day Tuesday and Thursday and pretty much every morning. Now, we do have 3 afternoons open but I am not going to walk through the zoo when it is 100 degrees outside and outrageously humid.

So today after OT I decided we would just wing it. OT was over at 10am and we could still get in a couple hours before the afternoon scorching began. I really must say that we had a very nice time. I enjoyed both boys and it was a relaxing and exciting event for all of us!

JP is not really allowed to "walk" much. I still plop him in the shopping cart most of the time just so he can't get away! We work on it but before today I would have said that we have a lot more work to do. However, today he did amazing keeping up with T and I. Now don't get me wrong, he still would just keep walking and not even notice if T and I were nearby. But he did listen when I told him to stop and even came back! He was actually very well behaved. It is these changes in his behavior that I am thinking about most tonight.

Usually we travel to zoo in the same format. Jungle...aquarium... gorillas...carousel... home. Today, however, he chose for us to go through the desert first. Personally, I think this exhibit is kind of boring but he has been scripting a desert storyline lately (I think it is Thomas but I don't know for sure yet) so he was very interested to travel through the desert. Since we were already at that part of the zoo we proceeded to go... desert... gorillas... carousel... aquarium... jungle. He was totally okay with the changed pattern! Wow! Now I know that he chose the starting point. But when we finished the desert he wanted to go to the jungle. He didn't get upset with my rational about switching it up and doing the gorillas next!

We did have one meltdown. I don't need a behavioral assessment to identify this one--it was pure anxiety. We were walking through the desert talking about the orange sand and the prickly cactus plants when our path led into a cavern. This is how they transform the display into a different type of desert scene. Well, I made the mistake of saying, "Oh cool JP! We get to go through a cave!". He dropped down shrieking and practically tripped the gentleman walking behind us. He was hysterical BUT after only a few seconds he verbalized his fear! He said, "NO BEARS!". That is when I realized that in JP's world, bears live in caves. I assured him that there were not bears in the cave and he picked himself up of the ground and took my hand. (Thank God they didn't have any bears in cages inside the cave!!!!) Together we timidly pushed T in his stroller through the caves. Here is the funny part...the caves didn't have bears but they had displays of all kinds of yucky critters... snakes, spiders, bats. These creepy critters didn't bother JP. (They give me the creeps!) It was the fear that he was going to run into one of those pesky bears! (Even though he absolutely loves Pooh bear!)

Another anxiety road block was moved a little bit today. We also got to actually enter the carousel line so we could watch the ride up close! I guess I should state for the record that JP is terrified of moving rides. We have never succeeded at a carnival or amusement park ride. He won't even sit in the Ferrari car at Walmart (even if I swear I won't put a quarter in it). Last year we spent a lot of time watching the other children enjoy the carousel. Today we actually entered the ride area and watched at the gate. He proceeded to tell me that "in August when I ride the carousel I will ride the horse like Bob the Builder does in Build to be Wild". August seems to be our "far off date when I have to be a big boy" because that is when Kindergarten starts. I don't think he realizes that August is just around the corner.

I should also state that T's favorite was the aquarium. (Unfortunately, much of the zoo isn't really visible in a stroller.) JP likes the aquarium too but he was ready to move on after a few minutes. But T was still loving the sights. I was thrilled that I was able to explain to JP how much T was enjoying looking and shrieking "fish" every time one of the sharks or manta rays swam over our heads. JP seemed to understand that since T liked it we needed to indulge him a little longer. This made Mom feel better about her concerns from yesterday's post.

____________

As a side note, this is probably not something JP will want to read about when he gets older but I can't help but preserve the scene. We had just gotten home. T had fallen asleep in the van. JP asked if he could go play with his train downstairs. I told him he could but he needed to go potty first. I explained that I had to take T upstairs and then I would come downstairs. So I take T up and JP heads to the bathroom.

When I come out of T's bedroom JP is walking down the hall naked from the waist down. (He has no modesty) I asked him why he was changing underwear? Did he have an accident? This has been an issue lately because he isn't doing a very good job cleaning himself up after a bowel movement. I almost always catch him after the fact and have to make him change his underwear. Nope, no accident he assures me. "Did you go potty in your pants?" I ask. "No, I farted" he said. I wasn't sure how to respond to that and the underwear did appear clean when I inspected them...

The life of a little brother

2007-06-24T19:35:00.000-07:00

In my previous post, I mentioned that I had two half sisters. But they are so much older than me that I still pretty much grew up as an only child. They lived with us off and on but we never had a real "sibling" relationship. I always longed for that close sisterly love. Of course, I had that "Leave it to Beaver" kind of expectation for family. I have sense learned that no one can live up to that.

Still, I look at my boys and I hope and dream that they will share a special bond. I understand that boys are different than girls and my sisterhood fantasy is not really applicable here. But I want them to know that they are blood and that no matter what life deals them they can always count on their family. Of course this dream is even more poignant due to JP's disability and what it means for all of our futures.

I can't help but reflect on T and what this means to him. He has spent his entire life tagging along to JP's therapies. We go to OT and watch JP play on all the swings and do all kinds of fun activities. Now that T is mobile (in other words, can't be contained) he sometimes gets to sit in the ball pit or swing in the baby swing. But that is not nearly as exciting as what brother gets to do. We go to speech preschool and T is cooped up in a small room with 3-4 adults who are trying to watch their children through a one way mirror. He has to be pretty quiet. Between juggling both boys I just can't take very many toy with us. Sometimes T gets to come watch gymnastics. JP gets to run and jump and spin around on his head. T just giggles as he watches but gets frustrated when he can't seem to get the door open so he can go try it. No matter how you look at it, T has spent his entire 20 months on this earth watching his big brother.

Let's face it, life is about JP's services. But these services have taught JP to talk and they are teaching him to socialize and deal with the sensory obstacles in life. These services are for the betterment of JP, T, DWAM and me. These services are helping JP learn how to be a brother and hopefully improving his future relationship with T. I really believe that the chaos right now is so that we can have a better quality of life later. Truthfully, next year will be the start of "later". JP will be in school and won't have the time to be shuttled from therapy to therapy. Life will change for all of us in August.

During this last school year, T and I did a Mommy and me class at the YMCA. He did like the class but it is not held during the summer. Even if it was, we couldn't do it. JP would be with us and I am not ready to drop him off for the Y Kid Care. I've seen the set up. 60 kids running around with 1-2 teenagers moping behind them. Nope. Not going to do it. T and I will start back in the class when it returns in the fall.

Yesterday we had a play date with another spectrum friend. He is 6. His 3 year old little brother came also. Our guests and JP were jumping on the trampoline. T wanted to join them. I do let him get on with his brother usually but this was a bit crazy. Our wild friends kept bouncing off each other and I knew it wasn't safe for T. (I'm not sure it was safe for the others!) But all poor little T knew was that I wouldn't lift him up on the trampoline where all the other big guys were giggling and having a blast. Life was not fair!

Yesterday while our friends were visiting we got out our Geotrack train. This train gets put away for a few months and then when it comes out it is like a brand new train. We set it up in the basement so that we could leave it up for a few days. The basement tends to have "little choke hazards" so we limited T's time down there. Well, since setting up the train, JP has been living down there. T and I joined him for some train time this afternoon. T was really really excited to play with the train tracks. And I must say that he actually does a pretty good job with it. However, the bridge is pretty wobbly and it always falls down--especially for an inexperienced conductor like T. This destruction drives JP crazy!

After about 15 minutes, JP started yelling, "No T. You must go upstairs." It broke my heart. T just wanted to play with his big brother. His big brother is his idol. Whatever JP does, T wants to do. I explained to JP that T is just a little guy and he is still learning how to play trains. I told him that it is our job (JP's and mine) to teach T how to play. We have to teach him how to share his toys and play with other kids. T knocked the bridge over again. I showed JP how T tried to put it back together but he didn't know how. I explained that we needed to use our words and then show him how. "Can you help me do that", I asked. JP responded with, "Yes, now you must take T upstairs".

I was torn. JP did awesome sharing all his toys and trains with our friends yesterday. Even this prized Geotrack train. The basement really is his sanctuary. But he also needs to learn that T has feelings and wants to play with his big brother. I wanted to honor JP's words and his wishes. He doesn't often articulate them so well. But I don't want T to feel like his wishes don't matter.

Ugh. I know this is just the tip of the iceberg. It is only going to get harder to keep life fair. Okay, I know that life isn't fair. But we are a family. And we owe it to both boys to make sure that they feel loved and respected. As T is getting older I am starting to wonder if we are already being unfair to him. On paper it could seem that way.

Truthfully, he is a very happy go lucky little man. He is such a little trooper. He clamors to get his shoes when I say it is time to go. He rushes to the door to wiggle the door handle. In fact, I would swear that he gets bored when we stay at home on the weekends. He actually said, "Where JP" to his dad when he woke up from a nap and JP wasn't around. He idolizes his big brother. He expects activity but I don't think he realizes that he isn't the "active" one.

I know that he isn't even 2 yet and that their relationship has barely even begun. But I vow that T is going to continue loving his big brother as he grows up. We will find a way to make sure that we don't allow any wedge to come between them. I know that the reality is that JP will likely require more support from us than T will. I know that the reality is that many siblings resent this "favoritism". I am going to do everything in my power to make sure that T doesn't grow up to resent JP's disability. But that really is a tall order. Hell, there are days that I resent autism and what is brings to our lives. How can I expect T not to feel that way sometimes? But I am committed to making this happen. I just can't help but struggle right now wondering if I need to be laying the ground work already.

I think that August will bring about a lot of changes for our family. JP will be in school all day and that will open up a lot of time for T. We will get back into our Mommy and me class and maybe we will find another activity for him. He needs a special event just for him. Something that is all about T! As nervous as I am for JP to be at school, I am excited to think about what these changes will mean for T. Finally, he will have some special time where he can be the cruise director and be the one to keep us busy!

8 things about MWAM

2007-06-16T19:08:00.000-07:00

My cohort, Laura, over at This Is What I Do tagged me to a tell 8 things about myself. Ugh. I don't like these things. I can never think of anything interesting.

1. My college internship was at a feedlot. Exciting, huh? Before you get the image of me riding horseback and wearing chaps I should tell you that my degree was in accounting. I worked in the trailer house/business office. I paid the bills and helped keep the "medical" records for over 50,000 of our four legged friends. Yes, that was enlightening. I got to keep track of what shots each cows received and how many grew sick. (Jeez, that statement now means more to me than it did back then!) Truthfully I am surprised that I can still eat meat! Did you know that a cow can eat itself to death! Thank God, I'm not a cow.

2. I played competitive softball all through high school. I loved the competition. Sports really do teach us a lot about people and life. Our rival team started rumors that our softball coach was a lesbian (they used a less politically correct term). Our coach was a single woman who had played collegiate softball. I felt that they were just being nasty and perpetuating the stereotype. I was angry that a silly game would give them the right to pass judgment and talk trash about someone else. After graduation, one of my teammates moved to Texas with our coach. To tell the truth, I pretty much knew about my coach. I was blown away by my teammate. To each his own (although the whole coach/student thing kind of bothers me still) . Last I heard they were still together.

3. Like Laura at This is What I Do, I was also on my elementary school safety patrol. This was rather hysterical. You see I am very short. I remember being made fun of during my 6th grade year because there were (several) 1st graders that were taller than me. I am now 5'2". I swear I am!

4. I had C-sections with both of my boys. JP was 8lbs 12 oz and T was 9lbs. As I mentioned before I am 5'3". Those boys were not going anywhere. I am convinced that if I had to birth them a century ago they would have never came out. Then I would be 5'4" across as well as 5'5" tall.

5. While in college my father tried to grill himself. It is a long story. Let's just say that he "fell asleep" leaning up against one of those old fashioned heaters in his house. It was winter and he had had to walk home in the snow. He leaned up against the heater to warm up and "fell asleep". When he woke up he got in the shower to "cool off" and discovered his skin was still stuck to the heater. He spent several weeks in a burn unit. He is doing fine now but his back is now made of pig skin.

6. I have two half sisters. They are 10 and 12 years older than me. We share the same dad. I have always longed to share a sisterhood with them. J, the one 10 years older, and I are doing pretty well keeping each other in our lives. She lives in my hometown. D, the one 12 years older is another story. She and I went 8 years without talking until she developed cancer. I reached out to her. Fortunately, she is now better. About 3 years ago she just dropped off of the face of the earth again. We didn't have a falling out. She just never returned my communications. I continue to send her a Christmas card. She has never met T. She has never acknowledged his birth or JP's diagnosis. She lives a couple miles away from me here in the big city.

7. I have a boys name. Well, I have met other girls with my name but there are very few of us. In fact, when I was getting my transcripts together for college applications I discovered that my school district (where I had attended since Kindergarten) had my gender filled out as "male". Of course, the transcripts showed "Girls PE".

8. My husband and I have interchangeable names. His is a name that is acceptable for either males or females. However when paired with my name the standard assumption is that DWAM is the she and I am the he. This makes it very easy when we answer the phone. We can pick out the telemarketers by the ones that assume the wrong name.

Well, I'm not sure who or how many I am supposed to tag. I know it breaks the link and ruins the game but I'm just going to leave it as an open invitation. Anyone who feels up to the challenge should consider themselves tagged!

Happily ever after

2007-06-13T13:30:00.000-07:00

Nine years. That is how long ago we signed on the dotted line and promised "for better or for worse, for richer or for poorer, in sickness and in health". We agreed to live happily ever after--together.

Some moments have been better than others. Hmm. Richer, well, we are definitely in the poorer stage of life. I guess in the grand scheme of things (Autism aside) we are "in health".

And what a ride it has been. So much has happened during our life together. Let's see. I guess I should start at the beginning. Well, the first milestone during our relationship was Dad without a Manual (hereafter known as DWAM) getting his driver's license. Yep, he turned 16 the summer we met. I was the older and wiser woman. I was already 16 1/2. Most of those years are fuzzy memories. I remember talking on the phone a lot. I talked. He mumbled. We went to different schools so we had a full day of experiences to share. Or atleast I did. DWAM has never been much of a talker. Fortunately for us, I am a fantastic talker! Oh, to be teenagers again!

This is a picture of us during the summer of 1990. We'd been together for about 3 months.
Damn we look so young!

I guess I can skip forward to high school graduation. Then we can just buzz right through college graduation. We both attended the same university and moved to the big city mere weeks after graduating. We rented an apartment together. This was a big deal! This was the first official "living together"! That just sounds so sad given that we had been together for 7 years! I guess you can say we took it slow...

DWAM landed a real job right away. I continued to search and settle for miserable positions. I won't bore you with my resume but I will always be touched by the endless encouragement DWAM gave me during these times. I was so frustrated that my college degree didn't seem to count. Perhaps a degree in Business Administration was not the way to go. My area of emphasis was Accounting but all I could find were basic bookkeeping positions for an hourly wage. Oh well. I finally squeezed myself into a lower level management role and found a niche automating the accounting functions. This led to me go back to get a master's degree in computer information systems. Through it all DWAM encouraged me and gave me the confidence to keep pushing forward. I've never been a confident person but DWAM is my rock. We both always seem to know how to lift up the other person when they need it.

So in 1998 we tied the knot after dating 8 whole years! We were 24 years old! We were still kids! Well, I suppose "kids" is a bit of an exaggeration. But looking back I can't help but sigh and reflect on our innocence. I look in those eyes and I want to tell us to slow down and enjoy the silence. Life is never going to be that simple again.

Our first true moment of despair came a few years later when we lost my father in law to cancer. He was a super guy and it truly took us by surprise. He was a specimen of health. One day he had a nasty chest cold then he was diagnosed with stage 3B lung cancer. They gave him 6 months. He was so amazing as he faced his final days. I wish we were all as at peace with his death as he was. Perhaps we are still not...

(As a side note, he was a Vietnam vet. He did time in the jungles where we sprayed Agent Orange. Interestingly, after his death we have found that many of his comrades have experienced the same illness. Most are blindsided by the advanced stage lung cancer almost 30 years after their service. Most die within 6 months.)

If that was our low point. Our pregnancy with JP was the high point. I wasn't in love with my job and considered it time filler until I finished my masters so we decided that I would just quit work and stay home. The plan was that once I finished my degree I would go back to work.

In December of 2001 JP was born. Life was perfect. He was perfect! Parenthood was exhausting but so much fun! Every day was a new experience. Our plan for happily ever after was going full steam ahead.

Then in the summer of 2004 our beautiful little prince started having some serious sensory issues and social issues that made him stand out from his peers. I won't rehash the story. You've been reading about it for months now. Needless to say, our plan required some readjustments.

The fall of 2004 brought autism into our lives. I finished my masters degree in the spring of 2005 and began working for my new full time employer--JP. Of course this altered our "financial plan". We had a mortgage payment and credit card debts that we had assumed on the belief that I'd be back at work in a few years. Oops! Here comes the "for richer or poorer" part of our happy story! And yeah, autism is only adding to that financial strain...

Fall of 2005 brings another huge joy to our lives. Baby T arrives and steals our hearts. Our family is now complete. We now seem to have the blueprint for the "rest of our lives".

Through it all, DWAM and I have somehow kept it all in perspective. Finances are a concern. Our oldest child's future is a concern. Actually both of our boy's futures are a concern. One has autism. So far, the other is developing on cue. We are anxious and always worried but we are doing it together. When I get overwhelmed, DWAM reminds me that we are fine. We will be fine. No matter what life brings us. Some days I believe him. Other days I need him to remind me again. Yet other days, I am there to remind him.

Together we make a great team. I can't imagine life any other way. Our boys are gifts. They bring us joy. We are a family through thick and thin. We face adversity together and we relish the joys together. Together as a team, the four of us will live happily ever after.

We may have aged a lot the last 9 years (17 years) but I think we are still looking good! Don't you?

Dear God

2007-06-11T14:17:00.000-07:00

As I mentioned before we did not really get 100% assistence for JP in his inclusion Kindergarten classroom. I am getting more and more nervous about this as time passes. I already made a request of the principal to reconsider. She said that she agrees with my concerns and has already put in a request. But that request was denied. So I guess my next step is to approach the Special Education Coordinator. If you recall from my IEP post this is the only person in our meeting that I felt was not on our side.

So I drafted up a letter. Worst case scenario I have no doubt that we will get someone in there when we have our meeting 4 weeks after the start of school. But my concern is that this person they hire will not be the best candidate. They will be the only candidate that wasn't hired at the start of school. I don't want us to have to settle for a warm body. I want them to find someone who wants to work in my son's classroom. By waiting they set this up to be a bad fit.

Anyway, here is my letter. It got way to long but those of you who read my blogs know that I can drone on and on and on...

---------------

**PLEASE READ THE FOLLOWING DISCLAIMER BEFORE PROCEEDING TO THE FOLLOWING PARAGRAPHS**

Dear (Special Education God),

First of all I would like to let you know that I felt that our IEP/Placement meeting went well. Everyone really seemed to be focused on JP’s needs and getting the right goals in place. It was a little bittersweet to have to say goodbye to our preschool teachers. They have been wonderful with JP! However, the pain has been lessened by the warm reception we have received from the staff at our elementary school. Everyone has been very welcoming to us and they all seem committed to making JP’s year at Kindergarten a success.

However, I am still uneasy about our level of supports in place for JP. Based on our discussion during the IEP, most of the support was to be applied at group times. This is definitely a critical time for JP. He must “learn how to learn” in that group setting. However, various events recently have made me worry about the other 12 hours of his week. I still completely agree that we should meet a few weeks into the school year to discuss if we have the right supports in place. These supports will always be a work in process because our goal is to fade them back as soon as possible. However, I don’t think 4 weeks into the school year will be a realistic point to start withdrawing. I believe Mrs. A and JP will need a paraprofessional in the classroom full time.

JP has made wonderful gains this past year in his preschool class. I did feel that it was a risky move putting him in a larger class without specific one on one support. However, having a classroom paraprofessional seemed to provide the right level of support to meet his needs. I fear that putting JP in a situation where he doesn't fully grasp what is expected of him and in an even larger class with even more sensory/social chaos might cause regressions. I also worry about him developing inappropriate coping behaviors that will make it difficult to keep him in the mainstream.

Thanks to his fine teachers this past year, JP is doing a fairly good job of staying with the group and not acting out. I worry that with some of his peers not having experience in a classroom there will be a bit of chaos those first few weeks. All it will take is one child to be hyperactive and running around the room, and JP will be drawn to that activity. I have seen this happen in our gymnastics class. However, we have found that with a subtle reminder from an adult, JP is able to stay put and focused. Mrs. A will have 20+ kids to tend to and will not be able to be a constant chaperone for JP. I really feel that we need to be proactive on keeping his behavior in check. It will be easier to shape his behaviors from the beginning than have to correct them after he experiences problems. As you know, autistic children can be very rigid. Although JP is doing much better in the aspect, I can’t state enough how important it is that we be proactive on this!

As excited as I have been with JP's growth and performance, I really don't feel that he is ready to navigate the Kindergarten environment alone. The following situation at Kindergarten Roundup illustrates my concern:

JP and another little boy were playing. As you know, most of the children think they are at roundup to make new friends. This other little boy asked JP if he wanted to be his “best friend”. According to Mrs. M, “you could see the wheels turning and JP knew he had to say something. But he didn’t know what. So he yelled “Boo!” When it didn’t get the reaction he expected, he said Boo again.”

Of course the other little boy was discouraged and moved on. JP would have lost a huge opportunity had Mrs. M and Mrs. T not witnessed the event. (Mrs. M and Mrs. T were only there for Kindergarten Roundup. The will not typically be in the classroom. Mrs. M was there specifically to shadow JP on this day of orientation!) Fortunately they were able to coordinate a second attempt between the children. They explained to the other little boy that JP was learning how to make friends too and that maybe they could try again. They brought the boys together and explained to JP that this boy liked cars also. JP said something like “Cool. Let’s play cars!” and they proceeded to build an elaborate road and played together like 5 year old boys should. JP played appropriately and it was a wonderful learning and social experience for both boys!

However, that learning opportunity would very likely have been lost if there hadn’t been the adult hovering near by to witness his “friendship faux pas”. We continue to struggle to understand the friend concept. JP was likely confused and unsure of how to respond to his peer. I have no idea where the idea to yell "Boo" came from but this was essentially a brand new experience for him. He did not know how to respond. He needed guidance. This is likely what will be typical for him in these foreign situations. He is making steady gains but his adaptability in social situations definitely needs more practice. If left on his own he will not know how to self correct. For now, he needs an adult to help him understand these situations.

In my opinion, this is exactly the type of situation that will make or break his future. Unfortunately/fortunately social skills in kindergarten build into social skills in adulthood. If left unchecked his social deficits will render him an outsider. These failures will directly impact his life, confidence and learning as a whole. The best thing JP has going for him is that he can be a quick learner. Thanks to the support the adults provided, the second approach between the two boys worked magically!

I truly believe that a successful Kindergarten year will allow us to fade back his supports in the future. He needs help learning how the elementary school structure works and guidance on how to interact with his peers. His use of language has come along wonderfully but he still doesn't fully understand the skills of communication. Once he understands the process he will gain confidence. However, JP does not learn these things on his own. I fear that putting him in the mainstream environment without scaffolding in place will likely cause him to take steps backward. He is already behind his peers. We can not afford to let him regress.

Intellectually JP belongs in the mainstream. Regular education is his least restrictive environment. Intellectually he can learn these other pieces of the puzzle. But we must help him understand. I know this little boy and firmly believe that he will adapt well and once he gains his footing there will be no stopping him. But we must set him up to succeed!

A few of the elementary staff members visited JP's preschool during his last week of school. I believe that they will agree with my assessment. I am sure his former preschool teachers would also be willing to provide their insights and concerns about his needed level of support. He has made huge strides this past year and I really believe that with the right structure around him he will continue to grow and catch up to his peers.

I know that the intentions were to have Mrs. L and her staff provide JP's supports during those first weeks until we could better evaluate the situation. However, I really think that we need to reconsider. The supports we have already agreed on will be there during group times, but as we saw at Roundup, JP's communication difficulties will be experienced during his entire day at school. I believe it will be imperative to have a second set of hands in the classroom in order to make this year successful for both Mrs. A and JP. I have no doubt that these supports will need to be firmly in place for longer than 4 weeks and want to urge you to consider acting on the staffing requirements now. It will be better for everyone involved to have the group assembled before that first day of Kindergarten.

I must say that I am excited by how helpful everyone has been. I know that we all want next year to be a success. I believe that with the right supports JP will continue to amaze us all and that down the road these supports will be unnecessary.

Sincerely,

MWAM

Decisions and more decisions

2007-06-11T13:40:00.000-07:00

JP does not qualify for special education summer school. He has not qualified since his first year. I could have fought it. Their rational was that during his first summer he did not regress. Of course not! That is the summer we started our home program. When we did his IEP in April we were aiming for 2 word utterances. When I reconvened the IEP team in September we adjusted as he was averaging 5 word sentences. Yeah, he didn't regress. I have the cancelled paychecks for the 20+ hours of home help we hired and trained. He sure as hell better not have regressed!

So anyway, the next summer they dropped us from services because he wasn't at risk for regressing. I didn't fight it. I wasn't convinced the school program was really going to move him forward anyway. It really felt more like a couple hours of daycare for a couple weeks of the summer. We opted to pay for a Recreational Therapy camp at a local facility here in town. This camp is for kids with various disabilities. It was more fun than therapy but when you have a kid with social issues...fun is therapy! Plus they have a buddy assigned every kid. So JP was set to get 1 on 1 interaction. So anyway, that is what we did last summer.

This summer I was sort of at a loss of what to do. I had prepared to push the school for summer services so that we could keep him in the "school" mode straight into Kindergarten. I read somewhere in the legal mumbo jumbo that summer services are critical during transition phases. So I was going to play it up that way.

But I didn't have to. The elementary school that we are going to had a special program for incoming Kindergartners. The kids will attend Tuesday, Wednesday and Thursday for a couple hours. This was open to all Kindergartners at our neighborhood school. That is roughly 80 kids. They could only accept 30 into the program. At parent night all of the parents were scrambling to get their application in. I locked into the program through my IEP.

But now that I talk to the principal, they only have 12 kids coming! Can you believe that! Us special ed parents have to fight for everything and the general ed population just threw away (6 weeks x 7.5 hours) services to help prepare/ease their children into Kindergarten. (I ask myself what happens to that grant money!) Unfortunately, Mrs. A (his Kindergarten teacher) was not going to be teaching the classes but it was going to be a chance for him to get to know a few children from his upcoming class.

Well, the principal asked me a couple hard questions. Because of his academics being advanced she thought JP might benefit more from attending with the 1st graders. These are kids coming back for summer services. This class will be taught by the Resource teacher and a 1st grade teacher. This will be JP's resource teacher and the first grade teacher will likely be his teacher next year as she has taught for 17 years in a self contained special ed room.

Here are my thoughts:

1. The kindergarten program will only have 12 kids. Only 3 will be faces JP will see next year. The teacher of this program has no experience with special education or autism. The para they would put in with him would not have experience either. Because JP doesn't get adult support 100% of the time he would only qualify for 1 1/2 hours ( out of 2 1/2 days) of support at summer school. (However, I was invited to meet with the teacher before summer school to help her understand JP's issues)

2. Many Kindergartners will not have been in preschool before. They will be learning how to sit with the group and behave. JP has already been through 3 years of this. However, all it will take is one hyperactive child running around and JP will be up running with him. Without an adult to remind him to sit quietly we will very likely lose those classroom skills. I fear him "learning bad habits". I am not sure the teacher/para will understand what kind of support he needs in this situation. I fear regression.

3. I worry that he is already socially behind his fellow 5 year olds. Won't his social issues be even more apparent with the 1st graders? Also, who is to say these 1st graders aren't in summer school for "behavioral" issues? Who is to say that they will be better role models?

4. Putting him in with the 1st graders will allow him to meet his resource teacher and his 1st grade teacher. This will give them insights into his issues. They would be invested in his success since they will have future relationships with him and me.

So anyway, I bit the bullet and agreed to the 1st grade placement. I just felt that it had the most positives. I had hoped that this program could have given him a boost with some of the peers from his class but atleast it will give him a boost with his relationship with the adults.

We'll start next Tuesday. I hope it goes well. How is a parent ever to know what is right?

23 days

2007-06-07T19:12:00.000-07:00

Along with the rest of the world, I have been watching the Paris Hilton saga unfold. Not on purpose. You can't get away from this stupid story. It is everywhere. Someone somewhere decided that this spoiled brat, who has done absolutely nothing to earn her place in society, is newsworthy. Much of the world is watching and laughing at her "misfortune".

This whole storyline is sad. It truly shows how corrupt our society has become. We live in a society ruled by social class. Those of us in the autism world know this all too well. Money talks. Even in the autism world. For example, we don't know what treatments will work--until we try them. It is trial and error. That is hard to do with limited finances. Ultimately, money gets treatment. A family with money can explore everything until they find the magic bullet for their child. Money equals a better chance at a brighter future. Yes, there is still a lot of work and luck involved but there is a chance for these elite children.

Children born to ordinary citizens are given very little chance to overcome. Very few of us have an extra $60,000 per year to spend on behavioral therapy. Very few of us have the continual stream of dough to navigate the DAN protocol. We do the best we can. We dabble in therapies and hope to find our magic bullet. We can't afford to devote time to a therapy unless it shows immediate gains. Most gains are not immediate. Many of us can't risk depleting our limited funds to ride it out. No overnight gains--time to move on. Simply because of their lot in life, our children may very well miss out. They may not get to develop to their full potential.

Money talks. Some of our kids can't.
Who do you think will be heard?

Enough of my soapbox. Anyway, back to the Hilton fiasco.

Tonight at supper my husband commented that it was sort of sad that Paris is pulling out all the stops to get out of jail and (based on my day from hell) I would probably willingly take her place. 23 days to myself might just be what I need! (Of course I would prefer 23 days in Hawaii.)

I thought I'd give some thought to how I would spend my 23 days in isolation. Imagine 23 days of solitude. Close your eyes and envision 3 weeks and 2 days without responsibilities. What would you do with those 23 days?

1. Sleep.

2. Listen to the silence.

3. Revel in the fact that I don't have to be somewhere. I'd have no schedule to keep!

4. Read a book from start to finish with no interruptions. Then read another.

5. Sleep.

6. Get to know the person I have become. (Currently I am not sure who she is)

7. Reflect on the lives of my children and journal the best and worst moments while they are still fresh in my mind.

8. Revel on the fact that I don't have to think and organize and constantly be engaging another human being.

9. Revel on the fact that I am alone! I am not responsible for another human being!

10. Sleep.

11. I can eat what is in front of me. I don't have to be a short order cook and prepare different foods for different picky eaters.

12. I wouldn't have to hear the same phrase 100 times an hour.

13. OMG! I can use the bathroom alone!

14. Reflect on my life: where I have been and where I want to be.

15. Sleep.

16. Investigate if I really do have any spirituality left in me.

17. Exercise. I wouldn't have an excuse not to!

18. Write letters to family and friends that I've lost touch with.

19. Breathe.

20. Sleep.

21. Listen to music. Real music not the Wiggles.

22. Take time to evaluate my life and really focus on what is important. Look for the big picture rather than the small stuff I always get hung up on.

23. Miss my family! But without a doubt they would be getting a better Mommy back when I returned!

Isn't it sad to fantasize about life in a jail cell?

No pain -- no gain?

2007-06-06T19:26:00.000-07:00

Monday was JP's first dental visit. Yes. I am ashamed that he was 5 1/2 before he ever sat in a dentist's chair. But for the life of me I couldn't figure out how to make this event work. Perhaps I have been a coward. But atleast now it is over and atleast he didn't come out of it with a dozen cavities.

Well, hubbie's work has dental insurance. I had checked with other autism families around here and got a few recommendations. But nope. None of these referrals accept patients with our insurance plan. We could pay for the premium dental insurance that work offers but it was going to be $50 extra every month. So we decided that we would just have to find a respectable dentist served by our plan. The dentist Hubbie and I use did not really seem ideal for children so we looked for a pediatric specialist. There has to be someone suitable, after all we do live in a fairly large metro area. Nope, there were only 3 dentists listed as accepting new patients with our dental plan and they all 3 belong to the same practice. That is ridiculous! Have I mentioned how frustrated I am with healthcare in this country?

So while we tried to sort all of that out, we spent the past few months playing dentist at home. I bought a teeth cleaning set at Walmart and we practiced opening up for Dentist Mommy. JP now tolerates me touching his teeth and will open long enough for me to count them all. I've even been able to kind of tap on them without a fuss.

Finally we just settled on our family dentist. He is a nice guy but there is absolutely nothing elaborate about his facility. It actually looks exactly like what you would expect from a dental office in the 1950s...down to the swirly spit bowls. It wasn't ideal. He says he does work with children and was up to the challenge so we gave it a try.

Monday was our checkup. JP did really well! I was by his side and the dentist and hygienist did a great job of explaining what they were going to do. When they used the various (noisy) tools they showed them to JP first. They even let him push the buttons to try them out. He and the hygienist even had a little water fight with the water squirter tool. Ultimately, they were able to view all of his teeth and accomplish a very basic cleaning with the electric toothbrush.

Unfortunately he does have a cavity in his upper back. We tried to do the X-ray but that was just too difficult. JP couldn't get the Xray thingy in his mouth let alone bite on it and keep it there while they clicked a picture. Nevertheless, the dentist recommended a filling. So we fearfully made an appointment for Wednesday and headed home. We were elated that our first trip was a pleasant experience. However, I must admit that Mom was terrified that our second experience would ruin this first success.

So today we pulled out all the stops. Since Dad had to take the afternoon off to be with Trey (during the dentist visit) we just combined it with a trip to the Children's Museum. JP saw a commercial awhile back for a visiting Bob the Builder exhibit and has been expecting to go every day. He just keeps saying, "In the next morning we'll go to Bob the Builder".

It was a fantastic time.

Unfortunately our departure from the museum was less than perfect. JP flipped out. He did not want to leave. Oh well. Who could blame him?

So we took T and Dad home and then headed to the dentist. JP listened to his "therapeutic listening" CD while we waited. I gave him space. We talked about what to expect them to do. He understood that he had a cavity and that a cavity is an owie on his tooth. The doctor was going to clean the owie and then paint a "tooth bandaid" on it. He seemed okay. It felt like he was saying, "Sure, Mom, whatever. " He acted like this was going to be a routine trip to his new friend the dentist.

During our discussion I discovered that his biggest concern was his confusion when the dentist told him to open up like a crocodile so he could see all of his teeth. You see, according to JP, a crocodile goes "chomp chomp". He couldn't understand why the dentist would tell him to chomp chomp when he is trying to reach inside his mouth. Obviously the dentist didn't understand that a crocodile would bite his hands off. So instead, we worked out a signal of touching him on his chin to get him to open wide. It seemed to work. And he didn't chomp on the dentist.

So if you are interested in what JP had to say I transcribed our bedtime conversation on our Daily Ramblings link.

I am a little concerned that he never seems to express pain. He was bothered by the noise and squirmed considerably. But he would not admit to any pain. Now I haven't had a cavity filled in years but it seems to me that there should have been some pain to articulate! They did nothing to deaden or anesthetize him. Don't get me wrong I am not trying to create drama where there was none but this does bother me. It doesn't feel right.

I don't know how to teach JP to recognize that bad feelings exist and that it is okay. He just always tells us he is happy even when I know it isn't the case. For example back in March when he got his toenail ripped off. He would not acknowledge pain. He insisted that his feet were happy even when he looked like he might pass out.

This pain acknowledgment seems like an issue. He needs to know how to recognize bad feelings so that he can choose to remove himself from them. Even in it's most basic sense this seems like an issue of self preservation. I have to wonder if he put his hand in an open flame would he think to pull it out. Or would he just think it is what is expected and endure it? Am I being overly dramatic. Yeah, probably. But today's "success" has me wondering.

Isn't it annoying that I can't just think..."Wow, today was a success!"

A much needed release

2007-06-01T12:37:00.000-07:00

Well, I screwed up. I'll state that at the beginning. It really isn't that hard to admit. I don't like admitting it but it is bound to happen now and then.

Today T had a well baby checkup. My calendar said at 1:45pm. Dad arranged to work from home so that JP could stay home with him. When Dad asked me what time the appointment was I said it was either 1:15 or 1:45. I couldn't remember. I'd have to check the calendar. We live and breath by our calendar. It tells us what we need to do and where we need to be.

So T and I leave for the doctor. JP is playing Nick Jr and under Dad's care. Our drive goes rather smoothly. I am strangely at peace that we aren't rushing so I let T walk alongside me while holding my hand. His little feet scrambling as fast as he can to keep up. We walk into the lobby. We aren't rushing because we are quite early for our appointment. T pushes the elevator button. We get in. We get out. We walk through the empty waiting room to the receptionist. I tell her who we are and who we are there to see.

She says that since we are late for our appointment we will have to reschedule. My jaw hits the floor. We're late? Our appointment is for 1:45! She says that it was for 1:15. I'm disoriented but figure mistakes happen. I politely assume credit for the mistake and say that I must have written it down wrong. I nicely inquire that since we are here and they don't appear too busy maybe the doctor can still fit us in.

Nope. We'll have to reschedule. I pause as she grabs the schedule book. I stammer. Well, I can't reschedule right now because I have to have my calendar. We have our life organized down to the 15 minutes and I don't know what date and time we would be able to arrange. I guess I'll have to call the office. She tells me to do that.

T and I start to walk back to the elevators. We walk through the barren lobby. There is not another single living breathing patient to be seen. My brain starts thinking how ridiculous it is for us to drive all the way back home, call to make an appointment and come back another time when the doctor obviously isn't over booked for the day. The elevator has already arrived when I decide to give it another try.

We approach the receptionist again. I explain that our lives are crazy and if I made a mistake on the time I apologize but since the doctor doesn't seem too busy could they squeeze us in. (Ha! How do you squeeze into a wide open space??)

No.

I state that surely if we were a sick child they could work us in. I explain that it is a well baby visit and we aren't getting any shots so it wouldn't even take that long.

She explains that if you are more than 15 minutes late you have no choice but to reschedule. It is policy. (At this moment I see the doctor walk by in the hall and go into his office.) No other patients are wandering around. And that proves that he is still there and not already out on the golf course.

Uh. Okay.

We turn and walk to the elevator. We get in. I am pretty sure I have steam coming out of my ears. This is ridiculous. The doctor is there. He isn't even seeing a patient. There are no patients in the lobby. It isn't that late. Had we shown up "on time" he would still be with us.

T walks alongside me to the van. I walk to the passenger side to open his door but find that my clicker won't work. I scoop him up and walk around the van to the driver side where I can unlock it with my key. While I am there I grab the cell phone thinking that I'll call my husband to bitch about the lunacy in the world. That is when I look at the phone and it says 1:39.

According to the brick wall behind the reception desk, " if you are more than 15 minutes late you must reschedule". Even if my appointment was at 1:15 by their standard I had until 1:30. I have had time to argue with her twice and walk to my van. I have no doubt that it has been more than 9 minutes since my blood pressure spiked. Even if there hadn't been time for 9 full minutes to elapse that means that I showed up in her lobby probably right at that 15 minute mark.

Damn it. That isn't fair. She is messing with me. If she wants to play by the "rules" than I am going to let her know that she is also in violation of the 15 minute rule. I put T in the stroller and we marched back in. We take the elevator and approach her desk.

I explain that according to the clock on my cell phone it is now 1:41. If we are operating based on their 15 minute late policy than I was very much here before or right at that time. She doesn't budge. That is the rule. Since it is now 1:41 that makes us much more than 15 minutes late. She doesn't make the rules. She just has to follow them.

I state that this is ridiculous. I'm arguing principle more than anything. I am just annoyed.

Here is the thing. This doctor is a nice guy. He has been fairly supportive of our work with our DAN doctor. He was totally on board about us waiting until T is older to vaccinate. In fact, he suggested it! I really wanted to tell them that with customer service like this they can go to hell. But I can't. I hear horror stories about doctors that "fire" families that don't vaccinate their kids. At the very best, most autism families have doctors that "tolerate" their dabbling with biomedicals. This doctor shows interest in what we do. He is former military and believes that there is reason to pause about the vaccination components. He talked at great length about the Gulf War Syndrome issues and the amount of vaccinations we gave our troops before they served. He really is an open minded and respectful doctor. BUT his office policies suck!

So here is the thing. I just kept getting more and more angry on the drive home. I figured I messed up the time. In fact, the calendar on my refrigerator does have 1:45. The explanation is that I had a paper calendar I was working off until all of our summer events got confirmed. On that calendar I had written 1:15. So I screwed up when I took the paper calendar and put it on the computer copy that I printed for the frig. I messed it up. Yep, it was my error.

But am I being unreasonable to be annoyed with their unwillingness to see us. The receptionist was condescending and was just so damn unfriendly. I am not a flake. Perhaps the most annoying part to me is that we were incredibly early for the time I THOUGHT we were supposed to be there! I am a conscientious parent and I understand that the doctor's time is valuable. I did not blow off the appointment expecting them to be there waiting when we arrived. I was not meaning any disrespect but I totally felt disrespect in return.

Anyway, we came home. Dad was on a conference call for work and gave me a perplexed look. His look said, "what the hell are you doing home so early." That is when I lost it.

Was it because of the doctors office? Somewhat. But I am so tired of walking a tightrope. I am so tired of life having to be planned down to the 15 minute interval. I am so tired of having to figure out how to fit my square peg family into the round holes of society. I am so tired of rules that have to be followed in order to not experience anxiety attacks or meltdowns. I am so tired of having to plan and prepare for every single event of our lives.

I want to be the mom who can just show up to a doctor's office 15 minutes late and expect things to work out. I am frustrated because for those moms life does works out. I never get to be that mom and it is taking a toll on me. I am so sick of beating my head against the wall. I am exhausted. I want life to give me a break for once. Why does everything have to be so hard?

Is this experience with the doctor's office really equal to the amount of tears I have generated? No. But apparently I needed the release.

**For the record, although autism has thoroughly exhausted me it has apparently done me some good. I would never have been brave enough to stand up to the receptionist before. I never ever spoke up for myself. Ever!

May Time Capsule

2007-05-30T19:17:00.000-07:00

A Moment in Time...

What is your favorite...

COLOR:

My favorite color is black like Mickey. I like Mickey with his magic clothes on and his magic hat on. Where do you see Mickey? I see him right here in this book. Is he also on your V.Smile? Well, you're right but I'll check in this book. (flips through book for Mickey Mouse). Oh I'll find...that's the Mickey! (He's flipping through his new favorite book--Disney Storybook Collection Volume 2)

BOOK :

My favorite book is the Disney story book. Do you have a favorite story in that book? My favorite story is that movie. My favorite story is the Mickey Mouse magic movie. I haven't seen that movie, have you? Nope. I sure haven't. Maybe it will be at the library? I'll have to check! Good thinking Mommy!

MOVIE:

My favorite movie is Nick Jr and Disney channel and Playhouse Disney of Disney channel. Do you a favorite show on one of those? My favorite movie is Rollie Pollie Ollie. Cool! Have you seen that on the TV or the computer? Computer. Do you have a favorite movie on the TV? Well, yes. But my favorite movie is the Backyardigan's Racing Adventure. Hmm. I think that is on the computer too. Maybe I haven't seen that movie before. Do you? Nope. But I'll show you how. No, we're not going to play on the Nick Jr website right now. But I want to play it! But I'll show you how to spell nickjr.com. Just click here. But I'll show you how... Ha Ha! Silly old Mommy! I'll show you how to spell www.nickjr.com.

FOOD:

Well, my favorite food is ice cream! Cool ! Ice cream! I like vanilla ice cream. I like to eat some at a restaurant. Did you eat some recently? Yes, I did. I went to the ice cream shop with Grandma and her friend Daddy and T too. Was there anyone else? Well sure... (no answer) Was Mommy there? Yeah. (ouch! I see how I rate!)

DRINK:

My favorite drink is juice. Oh, what kind of juice? Ice cream juice or strawberry limeade juice when we go at the strawberry limeade shop with Daddy! (i.e. Sonic's Strawberry Limeade...mom's ice cream juice is a Reeces sonic blast)

TOY:

My favorite toy is the new Superman. What's the "new Superman"? Tomorrow I'm going to get that at the store. And I'll get my new costume. What costume is that? It was from Walmart that morning. What does the costume look like. The costume looks like that Superman. (points(!!) to a Superman book from the newest movie) Tomorrow I can try that costume on. (I think we have seen costumes with the "built in muscles".) Oh, I don't know buddy. I like the Superman costume you already have. But tomorrow I can wear that in the next morning?

LETTER:

My favorite letter...hum. Hey! How about we make words. Yes, we are. But it isn't crooked. We better get different...this piece of paper to get that. What is you favorite letter, buddy? My favorite letter is a "A". Why A? Because I like to get the "a" for apple. Do you like apples? Oh, but we do have ice cream at the restaurant and the next morning we'll get some ice cream. Oh, I don't think ice cream is a morning food. But it's good. Maybe we can try it in the next morning!

NUMBER:

But my favorite number is 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. Any more? 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26. Oh! I hear the Backyardigans! I got to go watch my movie! (T is still finishing lunch while we answer our questions on the computer and Nick Jr is on the TV. JP heard the Backyardigans music in the background. I guess that means we are done for now!)

SONG:

Well, my favorite song is...like the Bob the Builder theme song. Oh, that is new a favorite song. It was on the TV when I was watching Bob the Builder Teamwork. Is Bob a nice guy? Yes. He's a builder and he fixes anything like Handy Manny. (Handy Manny is a Playhouse Disney series about a guy who fixes things) Cool! I like Lofty. Lofty? What does Lofty do? He rolls the gate and Bob's boots. (????)

My additions:

JP has really had a great month. Of course he still has his "topics" of interest. Lion King has faded. Cars is a distant memory. Pooh has even faded. However, he did ask to read a Pooh book last night and I did just check out Lion King 1 1/2 and Lion King 2 from the library. We'll see if these kick his fixation back into over drive.

He is really into Superman right now. Most of our video viewing has been geared more towards T's preferences. We've watched a lot of Baby Einstein videos and Wiggles. Personally I don't mind the Einstein videos because JP "narrates" the whole time and uses pretty good sentence structures to tell me what is happening on the screen. Plus his modeling of the words is enjoyed by T who is fascinated by everything big brother can do! I've enlisted JP in helping teach T to talk. JP seems to take this task serious but doesn't go out of his way to practice with T.

Both boys particularly like Baby Newton Discovering Shapes and Baby's Favorite Places First Words Around Town and Baby Wordsworth First Words Around the House. Today in the van T said "cat" when they showed the cat picture! JP excitedly exclaimed, "T talked Mom! T can talk now!" It was so cute. And I swear JP said it with a sense of pride like he made it happen!

JP's biggest fixation has been using Mommy's computer to play on the Nick Jr website. When forced to play on his computer he will complain that the computer is broken because it is so much slower. He claims something is "crooked" but we aren't sure what he means. Now that morning preschool is over he can actually watch some of these shows. Many of the shows (like the Backyardigans) he has only seen on the computer. I 'm not sure that he realized that they really were TV shows.

Bed time books:

Baby T

FOOD: donuts, fruit snacks, cheese, applesauce, yogurt, chicken fingers, ramen noodles, green beans, oranges, peaches, macaroni and cheese, Hamburger Helper Cheesy Beef Taco, pickles, popcorn, potato chips, summer sausage, ham, crackers, E.L Fudge cookies -- VIRTUALLY ANYTHING YOU PUT IN FRONT OF HIM!

DRINK: I got him to drink strawberry milk for a few days (only because JP was)but that seems to have faded. Essentially he is a juice guy. I am working on watering it down to the point that he'll agree to drink plain water. He still loves straws and essentially wants whatever big brother is drinking.

MOVIES: #1 Any Wiggles, #2 Any Baby Einstein video.

TOYS:
-Climbing is better but that is possibly because we no longer have anything climbable.
-Grabbing at anything within reach: curtain pullies, light switches, door handles.
-The real phone...not interested in the fake kiddie phones. (Even says hello...blah blah blah)
-Loves the shape sorter.
-Fascinated by paper and any sort of writing utensil
-Loves the slide. More of a fan of the slide on the play set. Seems to think the stand alone baby slide is beneath him.
-Is almost able to climb up the net ladder on the play set by himself!
-Is a natural with the baseball tee in the backyard. Any ball works--football, basketball, baseball...shoe.
-Loves to drop the basketball through the hoop.
-Loves to jump on the trampoline with JP.
-Loves swimming at the Y.
-Love anything to do with the bathtub!
-Is fascinated by the toilet. Have caught him sitting on the toilet with his feet IN the toilet twice. Yuck!

T will push the buttons and dance to the music. He is not really using it to hear the animal sounds yet.

This also has more advanced modes but we spend most of our time popping the ball in and watching it roll down the ramps. He likes the music but JP tends to turn the volume off.

T loves to scribble and draw. Any pencil or paper found is fair game. He loves to use the Doodle Pro and scribble all over it. He will even use the shapes to make designs.

BOOKS:
T is showing more interest in books. However we just don't get us much reading time in as I did with JP. It is so much harder to carve out that quality time for him. Dad is starting to build a bedtime story into their routine so that should build up his literary time a little more. I've also started reading to both of them during lunch while we all sit at the table.

WORDS/ACTIONS:
(against my better judgement I will include these...I'll try not to over analyze)

Daddy, BaBa (bottle), ball, I did it!, Bye Bye(with a finger wiggle), baby, straw, bath, puppy/dog, all done, Mama, head, backpack, car, duck, cup, more, peek a boo, noisy/sloppy kisses, blows noisy kisses, touches head during "monkey jumping on the bed", wags finger no during the "no jumping on the bed" part, bike, banana, 1..2.."3", ready, set "go".

Will grabs your nose, eyes, mouth, ears if you name the items.
Will pounce on JP if we say "Dog Pile".
Will chase JP if you yell "get him!".
Will head to the stairs if you say it is time for a bath. Has gotten in himself.
Will head to the refrigerator if you ask if he wants juice.
Will wave bye bye and/or grab shoes if you so much as mention the word "Go". Often will bring you the closest shoes he can find(Mom's, JP's, anyone's).
Will give you his feet if you have his socks and shoes to put on. (unless he is in the mood to run away). May even try to put socks and shoes on himself.
Will bring food from the pantry to Mom. Usually goldfish or fruit snacks.
Will run from you (with the naughty item) when you tell him no.
May say "moo" if you ask him what a cow says. May say "baa" for the sheep. May say "roar" for the bear. May say "roar" if you call him T-bear which seems to be a common nickname for him.

Shamefully I will include these...I hope they are nothing but collective moments of paranoia but I need to document them for reference.

Fear of the parachute at YMCA class (now will sit on it. Has been under it-under protest)
Fear of the tunnels and forts at the YMCA class. I put him inside them and he just stood there screaming. (now will climb through the little tunnel at home. Did finally do one tunnel at Y)
Fear of the plastic bubble wrap all the other kids were jumping on at the YMCA class
Huge tears during JP's OT when he tried the "flying apparatus". It is very noisy.
Fear of the trampoline in our backyard. (NOW HE LOVES THE TRAMPOLINE!!!)
Won't look in the sky when I point at an airplane. They are very noisy yet he is oblivious. (still oblivious...it is the weirdest thing! These planes are LOUD and yet he still won't look up into the sky.)
Seems really bashful around other people. (Yet will interact and play along side other kids)

However, every time I mention any concerns to a fellow autism parent, he will show off around them. He has had great eye contact and babbles with one friend and just yesterday he gave me a long burst of words when I said it was almost time to leave speech. It sounded like...garble garble babble babble outside. And he proceeded to walk over and climb into his stroller. Today I believe that I am being paranoid. I think he is doing fine. Of course he is not an early communicator but I don't think I am specific warning signs.

Bye bye baby!

2007-05-25T13:05:00.000-07:00

January 7, 2005. That is the day my baby's babyhood disappeared. That is the first day he stepped foot in a classroom. He was barely 3 years old. As with all the other parents who send their child off to early intervention programs, I stressed about whether I was doing the right thing. All this activity and work seemed so overwhelming for a baby. He was still a baby!

I had read all the literature. I knew that early intervention was critical. I believed that he needed more help than we could provide alone. I knew that he needed socialization. I knew that he needed to talk. I knew that he had to go...

But it was so scary putting my child on a school van and waving goodbye knowing that he couldn't speak for himself. My mommy brain was filled with scenarios of him wandering away when no one was looking. He wouldn't be able to tell them that his name was JP. He wouldn't even be able to say that he was in Mrs. D's class. I worried the van would get him to school and the teachers wouldn't know who he was. I figured they would be checking his underwear to see what name was sewn in them. (Just kidding...I don't know how to sew) Putting him on that school van was the hardest thing I had ever done.

That is why I didn't do it. We chickened out. Dad took him to the classroom his first day. We wanted his first experience of school to be positive. We were concerned about the van ride being too traumatic. We believed the hours at school would be a positive experience and that the van would be less scary if he knew it was taking him home to Mommy. He could ride the van to school after we had success with the other parts of the plan.

I prepared a social story. We read it over and over again. He really seemed to understand that he was going to school to play for a few hours and then the van would bring him home to Mommy. Dad took him to school that first day and got him settled. It helped that he loved shapes, numbers and letters. The walls were adorned with all his favorite things. The teachers went over his social story with him. When it was time to go home, he climbed aboard the van clutching his social story with the picture of the van taking him home to Mommy. He did amazingly well that first day. Probably better than his parents.

He really adjusted to school like a trooper. I will always remember sitting on the front porch singing our corny song while we waited for the van to arrive. As he learned to talk more he started singing with me.

Today is a day we go to school. Go to school. Go to school.
Today is a day we go to school. Early in the morning.

The school van comes to take us there. Take us there. Take us there.
The school van comes to take us there. Early in the morning.

While we are there we laugh and play. Laugh and play. Laugh and play.
While we are there we laugh and play. All through the morning.

Then the van comes to take us home. Take us home. Take us home.
Then the van comes to take us home. All the way to Mommy!

Well, I have since come to terms that in order to have a childhood my son had to relinquish his babyhood so early in life. All of his activities have taught him to tolerate/appreciate other people and the basics of how to be a social being. Yes, we have a long way to go but because of his experiences these past 2 1/2 years he now has a chance at life. He may not have had a carefree toddler existence but I really believe that he is now going to have a fairly normal childhood.

May 25, 2007. Today was JP's last day of preschool and I can't help but reflect on what happened to his toddlerhood. Like the parents of all the incoming Kindergarteners, I am in shock that my baby has grown up. School! How can my baby be in school! I shouldn't be surprised. I've spent 2 1/2 years preparing for it. This is the first milestone I had carved into our long term autism battle. Mainstream Kindergarten. Check. We've accomplished that.

I am very proud of the the child JP has become. He is a smart, beautiful little man with a heart of gold. But why does time have to go so fast? We spend so much time thinking about how to prepare him for a field trip or for a trip to the dentist. We plan and prepare. Plan and prepare. Sometimes I hate that we get so busy with the planning and then are so hyper vigilant during the event that we don't even get to absorb the experience. I hate that autism has taken that privilege away from us. I vow to try to slow down and cherish those moments.

I can't believe that my baby has grown up on me. I know it is happening. I have charts up the wazoo showing his developmental milestones. We've been commenting on how tall he is getting. Freckles are starting to pepper his cheeks. But somehow, today his maturity hit me right between the eyes. I watched him and his classmates walk to the park for their final fun day. I watched him accept his diploma from his teacher and give her a hug. He loved up on his speech path and showed a real connection! He really is a little man. Wow! He has come a long way in 2 1/2 years!

Although I miss my baby, I am loving this amazing little man!

Feeling a bit hypocrital

2007-05-23T06:17:00.000-07:00

I am feeling a bit hypocritical these days. It is a really long story and truthfully I am not comfortable providing much detail because a couple of my visitors will know who I am talking about. I posted about this friend a few months ago when my frustration level reached maximum. I ended up pulling the post afterward because I wasn't comfortable sharing what I did when some readers knew the people involved.

The quick and easy background to this story is that this is a fellow special needs mom who is having a very difficult time. We've known each other for about 2 years since our oldest children were in the same early intervention classes. Both of her children have IEPs. Both are still pretty much non-verbal and in diapers. They are 5 and 4. Mom graduated high school but was in special education. She means well but has trouble seeing the big picture and following through on things. She asks me lots of questions about what we do for JP and seems interested in trying them but she just can't pull it together. I've loaned her books. I've photocopied pages. I have helped her make sticker charts and visual schedules. I've answered the same questions over and over again. Finally out of desperation (and frustration) I decided that I didn't have the energy to keep beating my head against the wall. I've referred her to local resources to try and get other hands involved. But now some of those local resources are sending her back to me.

Recently she has been fighting the school on an accomodation they are employing for her oldest. I think she has been "fighting" this all year. In my opinion, it is a necessary accomodation for the child. But Mom refuses to accept the talking device because she feels that it has decreased her childs verbalizations. Mom learned to talk without the device and is sure her daughter will also. She thinks the device will cause her daughter to not learn to speak for herself.

A few months ago I started an Autism Support group for families in our school district. We have about 10 families. We are including her even though her child does not have an actual autism diagnosis. Her children are very similar and the family is very much in need of a support network. She brought up the issue to the group and we tried to give them the moral support they needed. Ultimately we encouraged them to find an advocate that can listen to the facts and make an unbiased decision based on what is best for her child. Also, we strongly encouraged that she schedule the meetings with the school at times when the husband and her mom(grandma) could come with her.

They had that next meeting and the school explained why the child needed the communication device. Dad and Grandma agreed with the school. They whole heartedly agreed that it was in the child's best interest AND that they needed to get one for the home. Mom called me upset because they had turned on her. I then had to try to gently explain that if her daughter was actually forming sentences on this device than it was a GREAT thing! And she most certainly should have it in her home. For some odd reason my saying it seemed to bear more weight than her husband or mother.

For awhile I was losing sleep over the issues of this other family. I was stressing over how to convince Mom that she needed assistance and frustrated because there is no one to provide that assistance. For a while I just rolled up my sleeves and started trying to help her learn how to help the kids. I gave her a handout on discrete trials and physically showed her how to do them. We listed some goals to work on. I gave her a sticker chart on self dressing skills as well as a stack of stickers.

Unfortunately after about 9 months of this I had to pull back. I felt guilty but I had to do it for my sanity. I have my own children who need my energies. I feel guilty about this but what else can I say. My children have to be my priority. I've been trying to fade back. I've been trying to get her in contact with advocacy organizations.

(So much for my short synopsis of the story.)

Anyway, here is the issue. She has talked to a few of the organizations. One in particular is a Parent Adovcacy organization. They talk with you but are not able to represent you in your meetings with the school. She asked. You want to know what they told her? "Why don't you ask your friend, MWAM, to attend your IEP/Placement meeting with you." What the hell! I guess that plan backfired!

So we met at the park a couple weeks ago for a playdate. She proceeded to pull out her child's verification paperwork and IEP. She handed them to me and explained that the advocacy people said that I should attend her Kindergarten placement meeting with her. "Here you go", she said. "The meeting is next Tuesday."

This is where I feel hypocritical. She sees that I have gotten my son included in a general ed Kindergarten. The school and she are not agreeing on the proper placement for her oldest. They recommend a special ed room. Mom wants mainstream. Mom wants what JP is getting and does not see that JP's placement is different because JP's needs and skills are different. In fact, this is a hard pill for me to swallow but she feels that since JP has autism and her daughter does not then her daughter should be better off. It's not right for JP to get a "better" placement. And no those are not my words. Those were hers.

I stammered and tried to avoid the discussion about attending her meeting. But she brought it up 3 times and wouldn't let me off the hook. I told her I'd have to talk to my husband to see if he could take time off to watch T. I told her I didn't think it would be likely since he was so busy at work. I felt like an ass. She needs someone she can trust. She seems to trust me. But I CANNOT take on responsibility for her children.

Also the biggest problem I have is that I agree with the school on this placement decision. I worry that if I sided with them at the meeting that she would feel it a public betrayal. I also selfishly worry about harming my relationship with the school. I don't want them to think I am the one pushing her to put her child in an inclusion setting. I know inclusion is not the right fit for everyone. (On some level I do believe in inclusion for all, however her child has severe anxiety issues and can't even handle interacting one on one much of the time. I cannot imagine what will happen in a room of 25 Kindergarteners! In my opinion, a regular education classroom is not the right place for this child right now.)

My fear is that she will use my name and the schools will think I am the one encouraging her resistance. Part of me considered going to the meeting just so I could make it clear to the administrators that I am not advocating inclusion for her child. As I mentioned before the Special Ed Coordinator is my biggest obstacle and I don't want to alienate her. I selfishly worry that they will blackball me as a trouble maker. I imagine them saying, "See what happens when you give one person inclusion...everyone expects it." Then they will become more resistant to our requests.

I did eventually tell her that I could not attend her meeting. I gave her another phone number for a state advocacy organization in a nearby city. And I did tell her that I wasn't so sure that inclusion was the right decision for her child. I know that she didn't like what I said. Mostly I explained that although JP is being mainstreamed I am having to partner with the school to get things done. I have worked hard building this relationship with the school. I explained that she has hurt her cause by her refusal to employ the communication device at home. (She now has the device but isn't using it). I encouraged her to develop a plan with the school with the stated goal of having her child included in 1st grade. If she works with them toward that goal then it just might happen.

So here lies my moral and ethical dilemma. How can I say I am about advocating for all children when I feel like I am turning my back on this family. Yes, I am giving them advice. Lots of it. But where am I when they need someone to step up. In my heart, I know I have done everything I can. I have tried to "step up" so many times that I have bruises from falling down.

A few months ago I decided that for my sanity, I had to draw the line. I started being less available. Then she upped the ante with the request to help at the placement meeting. At times this makes me feel so hypocritical. How can I justify doing all these advocacy attempts to help the families that just need that little boost to help themselves and then turn my back on the family that truly needs someone to hold their hand? In my head I know it goes deeper than holding their hand and I am not qualified or able to walk them through the special needs journey. It is my heart that I am having trouble convincing.

*******
I sat down this morning to post this because I am trying to build up my energy to call her back. She called last night when I was out. The meeting was yesterday. I am anxious to find out how it went but still dreading making this call.

Reflections

2007-05-21T13:21:00.001-07:00

Oh my! It has been forever since I've been able to sit down at the computer without a child hovering underfoot or with more than a 10 minute window of opportunity.

Life is going well. I have lots of thoughts percolating but I think I am going to just run with an informal list of events.

1. Soccer Equipment = Ball, Jersey, and Coke

JP did pretty well this year. Last week was his best by far and it was a very interesting experience. Before the game, he asked for a Coke. (I really don't like him drinking pop but he REALLY gets a kick out of it. Can you say REINFORCER!) Without giving it much thought I said, "If you score two goals at soccer than you can have a Coke."

I should explain that it pretty much works out that each child scores two goals at every game because the "game" part of soccer is where each child takes turns dribbling down the field to the goal. JP does awesome with the first half hour of practice where they do drills. He actually has pretty good motor skills. However, when it comes to the half hour game he can't tolerate being in the midst of all the chaos. (Imagine two teams of 9 little people who each have a buddy as well as two coaches . Now mix in an occasional parent on the field to "motivate" their child)

Yeah, he wants no part of that. Typically when it is his turn to drive down the field he will freeze up and refuse. His buddy will kick the ball ahead of the group and he may/may not scamper ahead and finish the task. Most of the time he is tripping over his feet to get away from the crowd.

Last week, when it was his turn he put up a little fuss. Then his coach reminded him of his "Coke" agreement and he marched right up to the ball. He gave it a swift kick, kick...and a score! I swear it was like 3 dribbles and a score! It was amazing! Apparently a little distraction took his mind off of the mass of people watching and cheering him. Of course after his second goal he was done playing and proceeded to go search through my purse and T's stroller looking for his "Coke". He was very proud drinking his Coke after the game!

2. Soccer = What it is all about

Yesterday was his last game for the season. It was against the team we played on our first season in the league. We liked the team but due to a bit of reorganization last year they moved us over to a fellow Autism Mom's team. She was the coach and probably pulled some strings. I was happy to move to this new team but also sad to leave the old.

I really didn't get to know them too well but they were all very kind about our "sensory" issues. I kind of felt out of place as almost every other child on the team had Down Syndrome. Their difficulties were much different than JPs. I think a few of the the parents were quite fascinated how this boy who looked so normal and ran circles around the other kids during drills could so completely shut down during the game portion.

One of the biggest obstacles for us on this team was that they did a "celebration tunnel" at the end of every game. The parents all formed the tunnel and all the kids came running through it screaming with excitement. Not JP. We usually cowered off to the side. I did get him to go through a mini-tunnel that consisted of 2 (Mom and Dad). Finally the last week of that first season the coach yelled out to JP and asked him to go through a silent tunnel. All 30+ people were stone silent while I walked my quivering son through the tunnel. He was terrified but thrilled at the same time! That was one of the neatest experiences of my life.

Yesterday, this team made that same tunnel and called out for JP to take his walk through it. The coach came over and took his hand and walked him through it along with JP's Buddy. I stood on the side watching it all unfold thinking what a wonderful gesture it was but doubting that JP would do it. I started walking out on the field to coerce him through it. By God if they were going to make such an effort we had to give it our all! Then I saw JP reluctantly take his old coach's hand. I watched in awe as he walked down the silent tunnel with a huge smile! I watched it through my blurry eyes.

3. The end of a wonderful school year

Friday is our last day of school. I am going to be so sad to have it end. I absolutely love JP's current teachers and this classroom set up is exactly what he needs. I am racking my brain trying to come up with a suitable thank you for his teachers. Nothing will be adequate.

4. The start of a good thing?

JP's new school team is supposed to be visiting his classroom this week to get a peak at him in action. I am eager to hear how it goes. His current teacher emailed me to follow up on Kindergarten Roundup. She wondered how he thought it went and if I had an insights on how it went. My favorite quote was, " I enjoyed his company on Friday and thought about him a lot this weekend. Hopefully it was a positive start for him." I am really excited to see how this plays out. She seems really interested in working with JP and I feel like we have a good relationship going. The speech path has also followed up with me. I feel like they are really gearing up for us to be there next year and taking our issues seriously.

5. Garage Sale - Not worth it.

Not much else to say. It wasn't very productive. But oh well. We gave it a try. All I can say is that Goodwill made out pretty well.

A trial run at Kindergarten...

2007-05-11T19:50:00.001-07:00

Today was Kindergarten Roundup. This was a trial run for JP at his new school with his new teachers and 80 of his newest best friends. It was 2 1/2 hours where the kids could meet the teachers and the teachers could get a look at the kids. I've been procrastinating thinking about it. I just kept focusing on Wednesday's IEP and pretending that today wouldn't come. In the back of my mind I was thinking that it wasn't really that critical for him to attend. But then I knew that I should want him to...

At the IEP, his current teachers asked if JP was going to his Kindergarten Roundup. Mrs. D (current speech path) asked if I thought a social story would help him with his morning at his new Kindergarten. Of course it would but I explained that I have been in denial that the day would come and hadn't really prepared anything. She offered to do so. She sat there and talked to the Kindergarten teacher about the schedule and jotted down notes.

JP went to school the next morning and came home with a beautiful story about the fun time he was going to have at Kindergarten Roundup! Now I need to explain this time line so that you truly understand how phenomenal this was. Our IEP finished up at 5pm on Wednesday. On Thursday at noon, JP came home with a printed and bound two page story taking him step by step through his day. This was the NEXT MORNING ! She is so awesome!

Oh, and it gets even better. Thursday morning at 8:02 am I received an email from Mrs. M, his new speech path at his new school. She had attached a picture of herself so that JP could get to know her. (She was going to be his shadow at Kindergarten Roundup the next day.) Two hours later she also emailed pictures of his teacher, resource teacher and the resource paraprofessional.

So today was the big day. JP was the little trooper and went along with what we told him he had to do. We marched up to the front doors of the school and went in without a fuss. We looked around the room at about 8 teachers and he picked out Mrs. M based on her picture. The adults talked for a few minutes and then he accepted her hand and went to the classroom with her. No fuss. Just another day in the life of JP.

I sat on a bench for the next 10 minutes or so watching these other little boys and girls walking up with their parents. The excitement was evident on their faces. Some were scared but they had that scared look like you have right before you plummet on a roller coaster. They were nervous but excited at the same time. It is like they knew that this was the first day of the rest of their lives.

JP reportedly did well during the session. He directed much of his interaction to the adults but here was a really cute story they were eager to share with me. I think it endeared him to them. And it is one that I need to preserve in my memory bank...

JP is playing when another little boy approaches. The little boy proceeds to tell JP that he is his new best friend. JP looks at the little boy and knows that something needs said. The wheels are turning but he just can't seem to decide what to say...so he yells "Boo!". Twice.

The teachers coordinated a second attempt with this little boy and the second time went much better. Reportedly the boys built quite a road together and JP even negotiated during the design phase. The adults were impressed (once they stopped giggling about the Boo)!

Yeah, without a doubt, we need some social guidance! But I am hopeful! Day 1/2 and the teachers are now aware of what they have ahead of them. And I think they felt a little charmed by my prince.

Gut instincts

2007-05-10T08:24:00.000-07:00

We all have them. We all live by them. As a mom of a child with special issues I have learned to embrace them.

We had phase 2 of our IEP/Kindergarten placement meeting yesterday. It was a bit overwhelming. If I recall the faces correctly we had 9 school reps. Our current teacher and speech path. The Special Ed Coordinator for birth to 5 kids. The Special Ed Coordinator for the elementary population. The principal at our new school as well as the psychologist, speech path, resource teacher and JP's actual Kindergarten teacher. I went in intimidated and worrying that it was going to be 9 of "them" and 2 of "us".

However, it really felt like 10 of us and 1 of them.

First I must say that I love our current teacher and speech path. They truly understand what makes JP tick. And it is so obvious that they adore him. They talk about his quirks as though they are precious and not "problems". They stated over and over again that he can learn if we break it down into components that he can process. They talked up his response to social stories. My favorite quote went something like this... "I've done social stories for children before. But with JP it is like, "so this is how they work!""

As a mom, the hardest part about turning over your child is that you need to feel that they are being loved and cared for. Without a doubt, JP has been in amazing hands this past school year. We are truly going to miss Mrs. T and Mrs. D.

A few months ago I met with the principal, psychologist and speech path at our new school. We talked about JP and my concerns. They were very receptive. I was encourage but true to my cynical self I held back hope. I know that nothing is locked in until it is written down in the IEP. So my first gut instinct was positive but I refused to listen to it until everything came together.

Well, yesterday it really came together.

Now, I did request a 1 on 1 paraprofessional. I did not expect to get that. But I truthfully didn't even think we really wanted that. What I want is support and I want to know that they are legally bound to providing that support. But I don't think JP needs someone to hold his hand. He does however need someone to nudge him from the shadows.

Now, there is a bit of unease still because although we have a plan in place we are scheduled to meet after 4 weeks of school to reassess. I think they hope to reduce supports but I sort of fear we may have to commit them long term at that point. Hopefully we won't have to increase them but we are all looking at this with a "wait and see" attitude.

So here is the issue. We were gearing up for the discussion about supports so I chimed in and asked for a few minutes to speak. I expressed that since much of the team before us had not met JP and witnessed his progress I would like to show them what his past couple years have been like. I explained each "therapy" and how each and every one of them utilizes one on one adult attention. I reinforced that I am not here today to demand 40 hours of ABA like many autism parents request but I wanted to show what kind of structure we had to provide to get JP where he is at today. Here is a visual of JP's current schedule. Unfortunately, I don't think my graphic scanned in very well.

I then expressed my concern that now that he is in Kindergarten all day we won't be able to continue these afternoon therapies. I'm not "attached" to these particular therapies but I do firmly believe that JP needs this much of one on one involvement. Here is how bleak his Kindergarten schedule looks!

Taking those 30 hours out of his weekdays takes away the opportunities for us use most of these services. OT, the speech group, and the college clinic are all day time activities. They won't be available anymore. Ultimately, I can figure about 5 hours we will be able to continue.

I didn't come right out and say it but my point is that we (I repeat WE) have stepped up and provided JP the services he needed to keep him engaged and growing. Now that he is in all day school, the school MUST step up and do their part!

I also illustrated the progress through our years post diagnosis. JP was diagnosed in the fall of 2004. In January of 2005, he started in an early intervention classroom. He spent 5 months in a class of 10 special needs kids, one teacher and 2 paras. At the close of that semester, his IEP was drafted with a language goal of stringing 2 words together. That summer we started a home program pulling goals from an ABA manual. We hired college students as well as providing the therapy ourselves. Towards the end of the summer we adopted the ABLLS (verbal behavior program) and took off running.

When we returned to school in the fall I requested a new IEP as the old one was not appropriate. JP's language had grown tremendously and I wanted our goals to reflect his new levels. We found that he was stringing 5-6 words together at this point. Here is my data to show his level in August of 2005. He was3 years 8 months at this point.

We continued in the same classroom through the 2005-6 school year with the same teacher. (I should note that I requested a transfer to a different teacher but it did not get honored due to staffing changes in the main office. Technically, our request fell through the cracks.)

Sadly, when we met in the spring of 2006, the IEP goals were still considered to be "in progress". So despite having the entire school year in a special education classroom JP had not mastered his list of 8 goals.

However, during that same time here is the growth we can document from our home program. Here is his ABLLS update as of April 2006 when he is chronologically 4 years and 4 months.
If you aren't familiar with ABLLS, each box on the graph above is a measurement for a task. To illustrate here is one of the more advanced receptive tasks:

Task C41: Select single items with two specified characteristics. Can the student select a specified item which has two specified characteristics (The big red ball). All 4 squares on the graph (for task C41) will be colored if he can do 20 combinations, 3 squares will be filled in if he can do 10 combinations, 2 squares if he can do 5 combos, or only 1 square if he can do atleast 2 combinations.

(**As a note, James Partington who created this program recently commented that this chart would likely be completely filled in for a typical developing 3 year old**)

Then we received placement into Mrs. T's classroom for the 2006-7 school year. This was an integrated preschool with lots of socialization opportunities but also a great teacher! We have continued our home program although much more modestly. Truthfully we ran out of money. I still have one college girl working for us but she only comes once a week for 2 hours.

As you can see on the above schedule much of his current therapy is outside the home.

Here is is latest assessment as of February 2007. He was 5 years 2 months.

At this point I got off my soap box. I had made my point. I have data that my son can learn if you teach him appropriately.

Here is what the Special Ed Coordinator for the Elementary population said, "Well, I don't have a problem if you want to put him in school part day and continue your therapies in the afternoon."

It took me by surprise because everything had been amicable and the school staff seemed excited to roll up their sleeves and start working with JP. I take her comment as a corporate type who is looking at the cost to supply this one on one attention. I understand that...but I also understand that it is their job. I regret not taking the discussion down the FAPE and IDEA route but I didn't feel that it was completely warranted at this point. However, my gut tells me that 4 weeks into the school year we may need to be prepared to go there.

However, my gut is also telling me that it is in fact, 10 to 1. Everyone else on our team was amazing and seemed committed to make Kindergarten successful for JP. I am optimistic!

A Behaviorist's Utopia

2007-05-08T14:51:00.000-07:00

Okay, let's admit that there are days when our kids have behavioral issues. Even on their best days they are one "sensory attack" from having problems. That is the nature of their disability. But to understand what provokes their behaviors you have to be a mind reader. Even if you watch them like a hawk you are bound to miss that critical moment that starts the meltdown.

Another blogger friend is in the midst of dealing with behavior issues. Her son is a good boy but he is acting out at school. The school just keeps removing him from the room. She gets a nice little slip saying what he did wrong but no explanation about why he acting up? Ultimately, he is doing fine at home. Definitely, not so fine at school. So what is setting him off? Is it a peer? Is it something with the teacher? Is it because of communication issues? Is it a compulsive behavior? Is it due to escape or avoidance? Is it attention seeking? How is she to know? She isn't there! The only people who can know are in the classroom and they aren't figuring it out.

Truthfully, she is in the midst of what I fear happening for us next year. I worry about sensory overload and a teacher that doesn't know how to help JP regulate. I worry about a teacher (like we had 2 years ago) that doesn't get autism and assumes that his behaviors are him being bad rather than him trying to cope. I fear a teacher that doesn't realize that we have to help him cope with these situations and learn how to react appropriately. I fear a teacher that has such low expectations that she assumes he can't learn how to react in that environment. I fear a school district that thinks it is easier to remove him than to roll up their sleeves and figure out what he needs in order to succeed.

Well, I was trying to urge this mom to push for a behavioral assessment. I think they have gone down the path and she seems in the know. I think she is at her wits end. But her situation has made me think back to this awesome presentation I heard last month at our State Autism Conference. So instead of leaving the "comment from hell" on her site I just decided to throw a blog posting out here.

The presenter was James Ball. He is a board certified Behavior Analyst and is a private consultant working with children on the autism spectrum. He is from New Jersey. He was a fascinating speaker and I have to admit that I wasn't that gung ho about sitting through an ABA presentation. I am not an ABA fan in its strictest sense. I didn't have high expectations.

But I was thoroughly surprised with his presentation. He was a very good speaker. Truthfully, what surprised me most was that he seemed to mirror my thoughts toward therapy for our children. He expressed that we need to adjust the therapy so that it works for our child! Most ABA types have the reputation of declaring it to be ABA or the highway! He urged us to recognize that the premise of ABA and discrete trials can be done in any context. On the floor while playing with their train set or in the shopping cart at Walmart. ABA does not have to be about a sterile table environment. It is about breaking the task down and teaching it. It is about understanding the behavior and helping improve the appropriateness of it.

As a side note, I also need to share a jaw dropping experience. He was talking about behaviors and behavioral assessments and giving all the "mainstream behaviorist" talk when all of a sudden he said something that blew me away! "When you have a child exhibiting behaviors you need to make sure there aren't any medical issues at play. Kids get out of balance with yeast issues or urinary tract infections and they might very well be in pain. It does them no good to try to "train" them to behave if you don't first help them get rid of the pain!" He said that 3 years ago he would have blown off biomedicals as hocus pocus but he has seen it transform a child enough times to make a believer of him. Now he went on to explain that biomedicals don't cure the child but it makes them more receptive to the learning environment and of course they need done through a physician. I didn't go to this presentation looking for validation that we are doing the right things but I left feeling at peace with our diverse therapy options!

Back on track to my discussion. He spoke about a product called, B.I. Capture. This looked amazing. It is still in the pilot phase (I believe) but I want it in my schools...now! Here is a link to a news story that summarized it pretty well.

http://www.talkautism.com/Components/Video/Video.aspx?v=82

I know that our teachers are overwhelmed with a room full of kids. They can't see every thing that transpires in the classroom. And expecting them to answer why our children act out is a lot like asking them to read tea leaves. However, this application allows them to click a button at the time of the event and the TiVo camera in the room captures the moments preceding and following the outburst. The data is then sent of to a behavioral specialist who can then look at the entire scenario and make a determination as to what may have caused it. Then they can formulate a plan to fix the situation and help the child!

I think this is huge! Like I said, I want it in our classroom. Please let me know if anyone out there is using this product! I imagine it'll be used in those autism schools where the professionals already "understand" autism. I just think it would be SO INCREDIBLY helpful for those of us out here in schools where are teachers are not autism experts. This would make it so much easier for our schools to seek "professional" help rather than try to wing it themselves. I can only imagine how much our kids would benefit!

Scripting can be beneficial

2007-05-04T10:53:00.000-07:00

Okay...so scripting can be our friend.

All in all, I can't complain about JP's diet. He has a variety of foods and they typically are of the healthy variety. Crazy as it sounds I have had to bribe him to eat cupcakes or cookies. In fact, he typically will refuse these treasured treats that are so popular in the 4' and under crowd. He loves fruit and will eat some vegetables (green beans and broccoli). Meat only passes through his lips in the lunch meat variety. Occasionally he will eat dark meat baked chicken. Rarely will he eat hamburger. These past few months I finally got him to eat Tyson Chicken nuggets. But he still won't eat nuggets at a restaurant. He won't eat sandwiches. He'll eat the lunch meat, the cheese, and maybe the bread but he must eat them all individually. After all, food that touches other food is now inedible!

Well, the past month he has been visiting the Playhouse Disney website again. He used to love this site but since he is in school every morning he doesn't really get to watch the shows anymore. In fact, most of these shows hold no interest for him. They keep his interest for the 30 second web clips that he could play repetitively for 30 minutes but a 30 minute streamlined version found on Playhouse Disney just isn't as worthwhile.

One show that he never really took to was Charlie and Lola. Personally I didn't really care for it. But since he has been revisiting these "friends" online he has taken a shine to Lola. She is a bit obnoxious if you ask me but I guess I am learning to love her as she has taken over my son's persona.

The other night at dinner I asked what he wanted to eat. He said, "I want peas, carrots and fish fingers". Curiously I followed along. I put raw carrots, peas and chicken fingers on his plate ( we didn't have fish fingers). He then said in a British accent, "I do not eat peas or carrots or fish fingers. " He speaks the truth. I had never seen him eat any of these things.

But I followed along and I said, "But JP those aren't carrots. They are orange twiglets from Jupiter or turbo charged swar racers."

He then picked it up and took a bite.

"Oh well, in that case...not bad!" (and he ate it!!!!) "But don't even think about giving me a pea!" said JP/Lola.

I replied, "but JP those are not peas those are green drops from Greenland or treasure chest glow balls".

"Oh well in that case. Quite tasty" (and he ate them while making a very yucky face). "But don't even think about giving me a fish finger!"

"But JP those are not fish fingers those are ocean nibbles from under the sea or yum yum flappers from Yucatan." said Charlie/Mom. "Hmm yummy" he said in his British accent and proceeded to eat his foods. All of his foods!!! All gone!

This was his desired meal for almost a week straight. Of course I had to tweak it a little bit and we ate broccoli trees from the hundred acre wood and apple crescent moons from the evening sky. As long as we threw it into a goofy visual AND use our British accents he went for it!

Here is a link to the live story. I should warn you that you might find it redundant after reading my blog!

Charlie and Lola's "I will not never ever eat that lunch" story book.

Today, I tried to make him eat a Keebler E.L.Fudge cookie. We fought. I tried my British accent. I won after about 30 minutes by holding his drink hostage. He gaged it down like it was poison. I guess somethings a British accent can't even overcome.

A hero party

2007-05-02T14:11:00.000-07:00

Last night JP was resistant about putting on his pajamas. He wanted his Superman PJs yet again and I told him they were dirty. We searched through my pile of clean clothes to prove that they weren't clean. I tried to offer him his Incredibles PJs but he wasn't interested.

Then brother came out of the bath wearing his Incredibles pajamas. JP decided that perhaps he could wear his too. So for the remaining hour of play and cuddle time we hung out with Dash and Jack Jack. (If you are not familiar with the Incredibles: the children are Violet, Dash and Jack Jack is the baby).

JP does tend to have an identity crisis. Sometimes he is Mr. Incredible and other times he identifies with Dash (the son).

Here is Dash. Don't you see the resemblance?

Here he is as Bob Parr in his corporate insurance man attire. He likes to close his shirt and introduce himself as Bob. Then he rips it open and claims to be Mr. Incredible.
(He also does a mean Superman/Clark Kent impersonation!)

So anyway the focus of our discussion was how cool it was to wear the same pajamas as T and both pretend to be superheroes. I thought this was a pretty innocent conversation. I suppose in his mind it stayed innocent but my dirty mind just couldn't handle it...

JP: "You will take your shirt off and become Elastigirl. Then Daddy will take off his shirt and become Mr. Incredible. Then you will have a hero party."

Daddy thought it sounded like a good idea!

**Elastigirl was Mrs. Incredible's alter ego. She is stretchy and bendy like elastic. And the hero party comes from Christopher Robin throwing a hero party for Pooh when he saves Piglet. However, that isn't the kind of hero party Dad was hoping for...

April...all hype and no answers

2007-05-01T15:39:00.000-07:00

I am feeling all twitchy inside. I have been out of touch with the blogosphere for so long. April has been a crazy month. Ultimately it has been dedicated to preparing for our IEP, the re-verification process and Kindergarten placement. It feels like there has been so much hype yet so little done.

Our initial meeting was April 26th. This was only with our "current school staff". This was JP's Special Ed Preschool classroom teacher, Speech Path, School Psychologist, OT, and the Special Education District Coordinator. I consider us blessed that the Coordinator was there. Typically they pull the "teacher serves as the district rep" bit. Apparently my request for a paraprofessional in the mainstream classroom drew her attention.

Unfortunately, that first meeting didn't get around to that discussion. I brought it up once but she asked that we hold off on that discussion until later. So although we were together for 2 hours I can't say that much came from it. I did find out that JP has autism. Surprise! No really, I was sort of surprised that they didn't argue the diagnosis. I have this fear that due to his strengths people will overlook his weaknesses. It actually happens all the time but fortunately this was not the case.

He did well with their assessments. Of course he loves to show what he knows. He loves to learn. Well, I should qualify that to say that he loves to learn in a one on one setting. If you put him in a group setting he gets ants in his pants. He hasn't shown us that he can learn much in that setting. It is just too overwhelming.

All in all, our meeting was amicable and I really must say that I love his current teachers. They really get him and they do welcome my input on his goals. And we all agree that his appropriate setting is a mainstream classroom. I feel that his teachers agree that he needs supports. The issue seems to be more with the administration. I know that my teachers can only say so much and I know that I can't expect them to fight the fight for me.

Our debate seems to come down to a discrepancy between the concepts of "supports" and "one on one aide". The school district that I live in does not do paraprofessionals. They don't assign an adult to a classroom for one specific child. If our kids can't cut it in the mainstream then they get placed in a multi-categorical special ed room. Truthfully it seems a rarity to have a special needs child placed in the mainstream. I know of 4 other autism families jumping through the same kindergarten hoops right now and they were all routed to the multi-cat room. However, as I have broadened my parent references to include a couple new "Asperger" families I am finding that these kids are in the mainstream--but with very (did I say VERY) little supports.

Now please understand that I am a "negative nelly". When someone says "maybe" I hear "no". When we talk about assistance for my son during his school day that doesn't really jive with their talk about a resource room. The school suggests that maybe the resource teacher could spend some time in his mainstream class alongside him. Sure, I'll take that but what about the other 6 hours of the day?

Who is going to be there to straighten his pants because he won't unsnap them when he goes to the bathroom. He just yanks them down and then can't get them up over his underwear when he is finished. He doesn't care or even notice. He could go all day with his waistband below his underwear. Who is going to be there to help him deal with lunch as well as the 100 other kindergartners. Who is going to help him cope with the NOISES in the lunchroom? Who is going to be there to nudge him and give him the words to use to ask to play with those kids at recess? Is he going to be lone child off to the side running sand through his fingers? Who is going to be there in his classroom when he is supposed to be working on an art project. Fine motor and creativity, ha! If you are lucky you'll get a picture of Winnie the Pooh! Who is going to be there to coax him to write his letters? If they tell him to write an "A" he will likely ignore them. But if they ask him to chose between the red or the green marker to writes his A's then they will likely get a row of red A's. Who is going to be invested in him and realize how to coax him to do these things? Or will they just assume he can't do it because he doesn't do it when they ask the first time? And then soon enough he won't be able to do it at all.

His classroom teacher will have a room full of dramatic neurotypical 5 year olds. They will all be clamouring for her attention. They will want to tell her about their scraped knee or their pet snake. She will have her hands full. Some of these kids will not have been in a classroom setting before. It is going to be a shock to their system. They will need her help. JP has been in a classroom for nearly 3 years. He knows the routine. I can't help but worry that his teacher won't have the time or energy to seek out JP and give him the continual guidance. I hope I am overreacting. But I am pretty sure she is not going to be Superwoman and frankly I don't think she can do it all. JP is a full time job for me and I don't have 20 other kids wanting my attention as well.

The way I see it one of two things will happen. Without an adult chaperon, JP will take up permanent residence in the corner of the room all alone because that is easier than dealing with all the angst and emotion in the room. Or he will get all stimmy and run around the room behind (insert random child's name) who is simply being ornery. (Insert random child's name) may be misbehaving but JP will think it is a game. Now jump forward 3 months and the other children will have adjusted to the school routine but JP will have learned that it is more productive to act out and run around. This may be the only way he gets support from the teacher. The way I see it he will either become invisible or a behavior problem. I fear that the only way to get supports in this situation is to become the behavior problem.

Because of all the work we have done with JP he is academically ahead of his kindergarten peers. We didn't set out to teach him to read. He just picked it up because letters are his thing. Academically JP doesn't really need assistance . He needs assistance learning how to navigate school and his peers. He needs assistance complying and knowing what he is supposed to be doing. He needs to learn that the children do the assignement because "the teacher said so". Yes, I hear the district rep chiming in. "All kids need to learn this!". Yes, I agree. But there comes a time when those other children realize the social ramifications for not behaving in the expected fashion. JP won't pick up on this.

Ultimately, we have a disconnect with the school regarding his needs. I understand that schools are about academics. Not social skills. But I see these things as the same thing. How is JP ever going to do a group science project if he can't learn how to play with his peers. Kindergarten social skills are life skills. These are a foundation to the academic skills he'll need later on. His disability makes it improbable that he will pick these up naturally. He has to be taught them. How are they going to teach these to him in a mainstream classroom without an adult there to steer the way?

I declared Kindergarten as JP's "year to learn how to learn in a group setting". I am just really antsy because I am not sure we are going to get the supports he needs to make sure this happens. My fear is that he will spend a year in kindergarten and do okay. He'll move on to 1st grade and maybe do okay. Then when he gets to 2nd grade we will start to realize that he really hasn't been catching on to the new material. All of a sudden my "academically advanced" child will be performing below grade level and the school will tell me that he can't learn in their setting. They will want to send him to the multi-cat room. Simply put, if we don't succeed with the "learn in a group setting" goal I worry that our mainstream days will be limited.

April Time Capsule

2007-04-30T09:00:00.000-07:00

A Moment in Time...

What is your favorite...

COLOR:
My favorite color is brown. Like Simba or...orange like Simba. That is pretty cool! Did you watch the Simba movie? Yes. That was from the Lion King. Have you watched the Lion King movie? Yeah, I haven't.

BOOK :
My favorite book is Winnie the Pooh. Which Winnie the pooh book? Fun with Manners book with Pooh. But I think "Fun with Manners" is a movie. Do you have a book you like? My favorite book is the Lion King. Well again, that is a movie. Do you have a favorite book? My favorite book is...my favorite book is..."My friends Tigger and Winnie the Pooh. Well, I think that is the new show starting on Playhouse Disney next month. Oh! Next month! Can you think of a book with pages and words that you like? My favorite book is about my Wiggly Wiggly World. Try again...that is a movie! My favorite book is ... If you don't have a favorite one you can say, "I don't have one." Oh, I know. My favorite book is about JP playing soccer. Where is that book? Maybe that is the movie. Yep, that is a movie that Mommy made. Maybe we can watch it? Seriously sweetie. If we were to sit down and read a book right now. What would you want to read? I want to read the book of Pooh. Okay. (I give up)

MOVIE:
Mrs. Ariel said the Book of Tigger. What is your favorite movie right now? My favorite movie is the Book of Tigger. But we don't have this movie. Maybe there was one at the library. Oh, you mean the Tigger Movie book that we checked out from the library? Maybe we can take that movie home and watch it? In the Book of Tigger, Pooh might pop out of it! Huh? We'll just have to see!

FOOD:
Well, my favorite food is wiggleberries. Wiggleberry salad, wiggleberry soup, wiggleberry juice, wiggleberry cake. Who eats wiggleberries? I eat wiggleberries. Mommy, do you like wiggleberries. I've never eaten a wiggleberry. Maybe I'll give you one and you'll take a bite. Sure that sounds good. Where do we get one? We get one at the...maybe there is some at the north pole. Huh, so I guess we'll have to ask Santa for some? Oh...good idea! We'll say "Happy Windsday Santa!" (Windsday is what Pooh thinks Wednesday means)

DRINK:
My favorite drink is strawberry salad, strawberry soup.... Those are something to eat. What do you want to drink? My favorite juice is... is... is... is... is... is... is fruit punch. Cool, I like fruit punch too.

TOY:
My favorite toy is Winnie the Pooh or my favorite toy is the Big Red Car. Yeah, but I am not sure you play with them much. Maybe there is one at OT2. Huh, I think you are right. Maybe I can get it out of the box and take it home and play with it. Can I do that? I think we have to play with it at OT2. But what is your favorite toy at home. My favorite toy is a soccer ball. Cool! And do you like your new trampoline? Yes! With a net on it! That is so cool, isn't it! That means I can jump jump jump!

LETTER:
My favorite letter is...z! Really! What starts with the letter z? Zzzz like sleep! Can you think of any others? My favorite letter is A. The "A" starts with monster? Monster starts with A? The monsters were really scary! And scary? Oh, the monsters were scary. What did the monsters make the letter A say! AAAAAA! The monsters will come and make me kind of crazy! The monsters were driving me crazy!

NUMBER:
My favorite number is 1, 2, 3, 4, 5, 6, 7, 8, 9, 10. All of them! Yes! How old are you JP? I'm 5.

SONG:
My favorite song is..."I just can't wait to be king". Oh cool. I love it! That is what Simba sings in "Sing Along Songs Lion King Circle of Life"! Do you like that video! Oh yes! Do you remember what Mommy's favorite song was? What is your favorite song, Mommy? Yummy yummy yummy there are bugs in my tummy. Oh I love that! It goes like this...(and he proceeds to sing the entire song)

I found a copy on youtube... I love this song!

My additions:

JP's meltdowns seem to have been better this month. His interests are transitioning from Pooh Bear to Superman. We checked out a movie from the library with Disney sing along songs so we have gained an appreciation for the Lion King. He loves the sing along video but I haven't been able to get him to sit through the Lion King movie. Cars has pretty much disappeared.

I find it interesting that JP seems to have lumped Superman and soccer. Superman was big last fall during our TopSoccer season and when we went to put our jersey on this season he demanded his Superman T-shirt go under it. It is as though Superman never faded! So we are dealing with a lot of flying from couch to chair, flowing capes and Clark Kent clothing on the floor. In fact, he has demanded to wear his Superman T-shirt 4 days in a row. I am able to make him wear other clothes outside the house as long as I agree to let him put his T-shirt on when we get back home. It is pretty cute how he puts on his white button down dress shirt over the Superman T-shirt and introduces himself to you (over and over again) as Clark Kent. He then proceeds to ask if you want to see his supersuit.

JP has really done well with all the school assessments and all of our other services this month. (Gymnastics is good yet bad as I mentioned on a previous post) OT has been great, speech has been good. He has even been interacting more with the other children at his YMCA class. He and T are getting more interactive and are proving to be very good for each other. It really is sweet how they both seem to look out for each other!

Biggest stims - A lot of Pooh Bear and Superman scripting. Some Charlie and Lola scripts from his visits to the PlayhouseDisney website. Oh, and nose picking!!! Ick! I think it is allergy related but it has turned into just a nervous habit! Instead of chewing his fingernails he is now constantly jamming a finger up his nose!

Not such nice phrases thanks to our Manners with Pooh video...

Mommy can you be quiet. (whenever Mom asks JP to do something he doesn't want to do)

You are driving me crazy. (usually scripted and used during a period of excitement--not anger)

A screeching yell (monster related to the Pooh video as well)

***This is so unfair. We get new videos from the library to mix it up and get out from under the same old scripts. And what do we get....more scripts!***

Bed time books:

Baby T

FOOD: doughnuts, fruit snacks, cheese, applesauce, yogurt, chicken fingers, ramen noodles, green beans, oranges, macaroni and cheese, Hamburger Helper Cheesy Beef Taco, pickles, popcorn, potato chips, summer sausage, crackers,

DRINK: THE BOTTLE IS GONE! But so is milk. He refuses to drink milk from a sippy cup. I've increased his dairy from other sources and keep presenting a sippy with milk. (Duh, I just thought about trying to get him to drink milk from a cup with a straw. I'll give that a try today!)
Essentially he will drink anything in a sippy cup and anything with a straw! However, if there is a straw present he will not drink from the sippy cup anymore.

MOVIES: #1 Wiggles, #2 Baby Einstein.

TOYS:
Climbing on anything and everything: chairs, tables, couches.
Grabbing at anything I can reach: curtain pullies, light switches, door handles.
Shape sorter
Paper and any sort of writing utensil
JP's Leap Pad - use it to scribble the pen
Sandbox in the backyard
Loves the slide and baseball and tee in the backyard.
Loves to drop the basketball through the hoop.
Anything in the bathtub!

Life still revolves around the big people world. T tends to want everything that he can't have and definitely wants whatever big brother has! He is amazingly fast and can scale a chair on to the table in mere nanoseconds. He loves to grab bowls or water glasses that find themselves too close to the edge of the counter.

BOOKS:
T is not really a book lover. I need to carve out more time for us to read one on one.

WORDS/ACTIONS:
(against my better judgement I will include these...I'll try not to over analyze)

Daddy, BaBa (bottle), ball, I did it!, Bye Bye(with a finger wiggle), baby, straw, bath, puppy/dog, all done, Mama, head, backpack, car, duck, cup, more, peek a boo, noisy/sloppy kisses, blows noisy kisses, touches head during "monkey jumping on the bed", wags finger no during the "no jumping on the bed" part.

Will grabs your nose, eyes, mouth, ears if you name the items.
Will pounce on JP if we say "Dog Pile".
Will head to the stairs if you say it is time for a bath.
Will head to the refrigerator if you ask if he wants juice.
Will wave bye bye if you start to get out the coats.
Will give you his feet if you have his socks and shoes to put on. (unless he is in the mood to run away)
Will bring food from the pantry to Mom. Usually goldfish or fruit snacks.
Will run from you (with the naughty item) when you tell him no.

Heard but not repeated... he labeled a picture of JP and himself by saying both of their names clear as day!

Shamefully I will include these...I hope they are nothing but collective moments of paranoia but I need to document them for reference.
Fear of the parachute at YMCA class
Fear of the tunnels and forts at the YMCA class. I put him inside them and he just stood there screaming.
Fear of the plastic bubble wrap all the other kids were jumping on at the YMCA class
Huge tears during JP's OT when he tried the "flying aparatus". It is very noisy.
Fear of the trampoline in our backyard.
Won't look in the sky when I point at an airplane. They are very noisy yet he is oblivious.
Seems really bashful around other people.

A taste of competition

2007-04-24T06:53:00.000-07:00

Gymnastics class is great. JP loves the activity and his teacher. But I have to ask the question that is haunting my sleep right now. Why can't we just have a positive experience? Can't anything just ever be good? Why does there always have to be a dark side?

I guess I should start at the beginning. Our first experience at gymnastics was a one on one assessment with the teacher. She did amazing with JP. She knew when to push and when to pull back. She even gave him the freedom to explore the equipment without the pressure of performance. She is an occupational therapist by trade and recently started this gymnastics facility. Ultimately, her adaptive gymnastics classes are serving as a supplement to our OT sessions as well! JP really shined to her that first day. And I need to state for the record that he still loves gymnastics and is excited to go see Ms. Liz.

After our assessment I made sure that he understood that when he returned to the gym the next time he would have to share Ms. Liz with other children. He was okay with this. He actually seemed excited to add children to the mix. His response was, "Oh! Children! Yea!"

Then we went to our first class. I initiated a conversation with JP on our way home. I asked if he had fun at gymnastics. "Oh yes!" he exclaimed. Then he proceeded to say, "Next time there be no children!".

Liz had recommended a Monday class because she said that there were two very verbal Asperger kids in there. They are 2 years older than JP but she thought it would be a good fit. Plus her other classes had larger class sizes and in the Monday class it would be 3 adults/3 kids!

I was excited to have these more verbal peers. I kept thinking that this would be a faster pace and more similar to a neurotypical experience. Ha! I don't know why I would think like this. I was doing exactly what I hate others doing. I was assuming that higher reaching skills means higher functioning. People assume that JP's verbal skills make life easier for him. I get defensive in those situations. And here I was making that same assumption about these Asperger children. What can I say...I had a momentary lapse into fairytale land.

The one we will call "DramaBoy" is very lethargic. He is very big for his age and awkward. He has pretty severe motor planning issues and tends to "fall down" rather than try the task. He claims he falls down while trying but he isn't a very convincing faker. Ms. Liz always dutifully checks his limbs to make sure the pain he "feels" is nothing serious and then urges him along. Once she gives him a good bill of health, it is amazing...the pain stops and he gets up. He is adorable!

The second little guy we will call "Champ". Everything is a competition with this guy. He is the best kicker. He is the best jumper. He is simply the best. He is pretty rambunctious and he wants to be doing whatever anyone else is doing. If someone else is on the beam he wants to be on the beam and he proceeds to tell you that he did it better. I guess the easiest description would be to say that he perseverates on being the best. And unfortunately those around him are always the losers. I am sure he is a good kid. He is just a bit much to take right now. Let's hope it is a phase.

Unfortunately, this is not a very beneficial relationship for either DramaBoy or JP. They are both so anxious about trying new things. They are worried that they can't do it and JP is rarely willing to try something unless he is certain he will succeed. Now imagine having Champ tell him that he is always doing everything wrong.

Last week when we were getting ready to leave JP and I were reviewing his sticker chart. They get a star for every new skill they try. Well, we started mid session so JP only had a handful of stars. Champ's chart was full. He came over to us and grabbed JP's chart. He looked at it and stated matter of factly, "I'm better than you. Mine is all full". My jaw opened and my tongue felt so heavy that I couldn't form words. Champ's Dad chimed in and said, "You've been doing it longer" and ushered Champ out.

Here is the frustrating thing. I am just not sure what level of explanation I need to be giving JP. Initially I didn't think he was even aware of this "competition". However after last week he was pretty quiet after Champ's parting jab. I tested him out when we were talking to Grandma this weekend. I asked JP if he liked gymnastics. He said, "Oh, yes!". I asked if he liked Ms. Liz. He said, "Yes!". I asked if he liked Champ. He said, "Winnie the Pooh lives in the hundred acre wood". I take that as a no.

Lesson Learned: He knows what he doesn't like even if he can't tell me. I guess I have to mind read.

Last night was week 3. Well, JP was pretty defiant. He wouldn't stand on the line beside the other boys. (He didn't articulate this but this is my theory. I watched every moment trying to figure out why my child who was excited to be there was being so obstinate.) Champ was in the middle. DramaBoy is not as threatening to JP and I think that had DramaBoy been in the middle JP might have responded differently. He is willing to do the tasks as long as he could stand on a different line several feet away from Champ. He would look at Ms. Liz and even DramaBoy but he gave no attention to Champ.

Lesson Learned: I have to figure out how to empower JP to deal with Champ and all the other Champs out there. He needs to understand his feelings. He needs the words.

The exhilarating part of this lesson is that JP is socially aware! Often I wondered because of his uncanny ability to ignore an elephant in the room. So his reaction to this is is really quite huge. And yes, I am grateful that he has a reaction. However, I am sitting here terrified because this also means that he will be more vulnerable. Right now I am perseverating on the bully implications in our future.

Here is a whole other dimension that we have to help him figure out. And I don't really know how much to say. Sometimes I worry that if I say something like "Champ wasn't very nice when he said that" then I will be putting bad feeling in JP's head. I worried because I didn't want to put negative thoughts in there if they weren't already there.

But based on JP's behavior last night I am convinced that the negative feelings are in there he just doesn't know how to verbalize them. He knows he doesn't want to be around Champ but he doesn't know how to distance himself. Unfortunately, with only 3 kids in the class it is pretty hard to get away.

Now the bad news...Champ goes to the school JP will be going to next year. There is a very good likelihood that their paths will cross over and over again! I sure hope this competition is a phase!

(Big sigh....)

Snippets of conversation from April

2007-04-18T14:24:00.001-07:00

Various snippets from the past month.

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JP just returned from preschool. He is eating lunch. JP knows that Dad is working from home today and expected Daddy to be here when he got back from school.

JP: "Mommy, where is daddy?"

Mom: "He is out for a little while. He'll be back soon."

JP: "How did you let this happen!" (This is said in his Christopher Robin voice. In one of the videos, the gang loses the neighbor's dog. Christopher Robin pitifully cries, "How did you let this happen" upon his discovery that the dog is missing.

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The boys almost always have a toy with them in the van. I guess you would call it a fidget. Sometimes it is a book. Sometimes it is a car. Yesterday JP decided to have the sewing tape measure. ???? This was when the boys went over to a friend's house to pick up a trampoline that we are going to set up in our back yard. T and JP were hanging out in the van while Dad loaded the contraption.

Here is what Dad saw...
JP was flinging the flimsy tape measure around like a lasso and throwing at at T while yelling out "I capture in the name of the hundred acre wood". It looks like poor T has become a heffalump.

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JP is eating breakfast playing with his superman action figure. He is reciting scripts. Mom walks into the kitchen with his backpack to tell him to hurry up so we can get ready for the van.

Mom: Hurry up bud, we gotta get ready for the van.

JP: Tomorrow, when I wake up there will be a Superman CD and storybook.

Mom: Uh, I don't think there is a Superman CD book. I've never seen one.

JP: We can get one. (spoken matter of factly)

(By the way, Sunday was the start of soccer. We were heavily into Superman during the fall soccer season. In fact, we became Superman and flew from goal to goal during most of the games. Apparently, his mind has blended soccer and Superman because he has been talking about Superman ever since!)

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JP: Wait, I got an idea. Let’s watch a movie.

Mom: Well, what movie do you want to watch?

JP: I like to watch “Fun with Manners”

Mom: Oh is that Wiggles movie?

JP: That’s the Pooh movie, silly!

Mom: Oh the Pooh movie we got at Walmart.

JP: Oh, I think we get that at the library.

Mom: Are you sure?

JP: Yes, I think so. Maybe we could watch it.

Mom: Hmm. Where should we watch it? In the bathroom?

JP: Or, not in the bathroom! We can watch it in the toy room. Maybe I’ll go get it. I’ll be right back.....Mommy! We found the movie! We found the movie! I found that movie! Mommy see! I know! Let’s watch it!

Mom: Okay should we watch it on the computer?

JP: Hmm. That would be silly.

Mom: You are right that would be.

JP: Maybe, the tv.

Mom: Hmmm. We could do that.

JP: Let’s watch it together.

Mom: You want to watch it with me?

JP: Oh yes!

Mom: Really? Why would you want to watch it with Mommy?

JP: Yes, because the words will spell…now on video cassette and now our feature program.

Mom: Oh is that is what is on the video?

JP: Oh yes…maybe I’ll go put it in and push play. Or I’ll put it in and you’ll push play. That is the idea, right?

Mom: Okay, let’s go!

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JP:"Let's make words on the computer!"

Mom: Shall we talk about what all you have done today?

(preschool, lunch at McDonald's, OT2)

JP: Oh, but I'll say another one. How about we talk about Johnny and the Sprites.

Mom: Hmm. Do you like Johnny and the Sprites?

JP: Hmm. But I like Pooh bear.

Mom: Yeah, but Mommy doesn't really want to talk about Pooh bear right now. Do you like Johnny and the Sprites?

JP: Hmm. But I ...How about I talk about some stories.

Mom: What stories?

JP: The story about Pooh.

Mom: But you see that is about Pooh bear again and I don't want to talk about Pooh bear.

JP: But I got an idea.

Mom: What's that?

JP: To talk about some activities.

Mom: What activities?

JP: Some marble activities.

Mom: Some marble activities?

JP: Oh yeah.

Mom: What do you mean?

JP: I mean a BIG marble. After that we'll have to get a magic one. But Greg does some magic.

Mom: Greg Wiggle?

JP: Oh, yeah. He's on the Wiggles.

Mom: Do you like the Wiggles.

JP: Oh yes!

Mom: Who is your favorite Wiggle?

JP: My favorite Wiggle is. Greg is my guy. But Pooh is my guy.

Mom: What color is Greg?

JP: He has a yellow shirt.

Mom: Oh, is he the one that sings.

JP: Oh, yes. That's right!

Mom: What is that song about..is it the big blue car?

JP: Hmm. That's not a song about a big blue car. That is a song about music.

Mom: So do they drive a big blue car?

JP: Oh, all the Wiggles drive in the big red car. Greg and Anthony and Jeff and Murry drive in the car.

Mom: Do you remember who Mommy's favorite Wiggle is?

JP: Your Wiggle is Anthony.

Mom: No, I think my favorite is Murray.

JP: Oh, Murray? Whose Murray?

Mom: He's the red Wiggle.

JP: He is?!

Mom: And I think he likes to play the guitar.

JP: How about we talk about animals.

Mom: Okay, which animals do you want to talk about.

JP: A yellow bear with a shirt on it and Pooh for his name. But Christopher Robin's very best friend was Winnie the Pooh or Pooh for short.

Mom: Okay...Mommy wants to talk about what you have done today.

(preschool, lunch at McDonald's, OT2)

JP: Oh, okay.

Mom: What have you done today?

JP: I have done...trying to get in the ball pit. But Mrs. Chris pulled him out. Kristine pulled me out.

(Chris is OT, Kristine is college student that works for us with our home program. Kristine was not at OT2)

Mom: What did she want you to do?

JP: She wants me to put on my shoes.

Mom: Did she have you swing today?

JP: Yes. I do it at OT2.

Mom: Did you play with another little boy?

(The ball pit at OT2 had a big Chuck E Cheese bouncy ball in it. Sunday we went to Chuck E Cheese for JB's birthday party. JB is a fellow spectrum child. JP is mixing up events from Sunday with events from today's OT2 session. Today at OT2 JP worked on activities such as swinging with a peer, James. He and James had never met before. It went well. Sorry but even I get confused during this conversation.)

JP: His boy is James. We came to Chuck E Cheese. JB was there. Did we get inside because Chuck E was there. He was making a Chuck E show.

Mom: Oh, was he playing instruments? Did you like his music?

JP: He has his string. And then Chuck E saw real Chuck near by.

Mom: Was real Chuck E standing with the kids?

JP: Yes. Real Chuck E has his mouth open. And he has a hat with a C on it. We give the present to JB but he throwed the candy.

(JB was very anxious about the "party". He didn't want gifts because he doesn't deal with the expectation well. His mom warned us that he wouldn't appreciate gifts. He would freak out even if it was a gift he wanted. Mom suggested we give him a package of Airheads candy because he loves them. We didn't wrap it so that he would know right away that it was something he would like. This was the first JP mentioned the events. At the time I didn't think about talking to JP about JB's "unexpected" behavior. I guess I didn't even think that JP would be confused. Duh! Strike one for Mommy! )

Mom: Why do you think he did that?

JP: Because the candy might need to hang. (huh? I'm not sure what that meant!)

Mom: Well, I think JB threw the candy because he was scared. He knew he was supposed to say something to you. Something like "thank you". But he couldn't think up the words and he looked around and all the adults were looking at him. He got really nervous. So he grabbed the candy and threw it.

JP: That wasn't very nice.

Mom: Nope that wasn't very nice. But JB was scared. He was afraid to have his birthday because he thought people were going to give him toys that he wouldn't know how to play with and they would expect him to say words when he didn't know what to say. He was really nervous. But we were there to help him celebrate and learn how a birthday party works. You did a really good job helping JB celebrate his birthday!

JP: Chuck E said where a kid can be a kid! Does Chuck E have an idea?

Mom: What is his idea?

JP: His idea was to find his real friend. They were friend Chuck E's. But I had an idea for Chuck E. The idea is for Chuck E to sing but if he doesn't sing he turns back into a Chuck E Cheese and I belong to Chuck E Cheese. Chuck E might play with me. If he does? He won't sing anymore. But if he don't he turns back into a mouse and I belong to me and Chuck E belongs to me. Where's Chuck E?

( I am thoroughly confused!!!!)

Mom: Hey! I have a question for you. Do you remember who mommy's favorite Wiggle is?

JP: Your favorite wiggles is? Greg?

Mom: Nope, I don't think so.

JP: You don't think so?

Mom: Nope, do you remember who I told you?

JP: You told me Murray.

Mom: That's right! So who is Mommy's favorite wiggle?

JP: Murray.

Mom: You know that because Mommy told you. You did a good job listening to Mommy, didn't you!

(I am stopping the dictation now because that conversation thoroughly exhausted me!)

To Do List - Friends

2007-04-13T12:22:00.000-07:00

1. Friends.

This is a confusing word even for us neurotypicals. I have avoided applying the word to JP's classmates because I don't want to confuse him between the definition of a classmate and a friend. Someone once told me to be careful. They explained that it was risky to teach our children that their classmates are their friends. After all, this might get confusing if or when a classmate bullies them. They need to understand that friends do not bully you!

A few months ago we went to lunch with my aunt and she asked JP who his best friend was. He stared at her blankly and then went into a stim/script about his current fixation because he knew she expected a response but he had no idea how to answer. So I've been reflecting on the fact that this wasn't an unreasonable question for a 5 year old. Perhaps inappropriate to ask a young child with autism but other 5 year olds can tell you who their best friend is and who are NOT their friends and even in some cases who they are going to marry! Yeah, we're not there.

Truthfully, I am not sure JP has a friend. We do lots of playdates but he could really take it or leave it. When I tell him we are going to a playdate he is excited and even will say the child's name excitedly but he never talks about any of these children outside of the context of that playdate. I believe that a few of our autism friends will stay in our lives as "friends" but JP is definitely going to need help learning how to make and maintain a friendship.

I started today by asking JP if he knows what a friend is. He uses the word continuously when quoting his Winnie the Pooh lines. He knows that Pooh, Piglet, Tigger and the rest of the gang are friends. But he didn't have an answer for me. So I told him that a friend is someone you enjoy playing with (later, I'll work on the critical piece where they have to also enjoy his company). He kind of ignored me so I asked him again. No response. I repeated it again. Then I tried to talk him through it. We like going to Burger King with G. We have fun playing on the playground with J.B. after speech. I mentioned that we like playing trains with J.A. His response was an excited "Oh, yeah." But when I asked if he could tell me who some of his friends were...he just ignored me.

So I guess we will start working on this. I think I am going to make a "Friends Book". I'm going to get a picture of our peers and make a page for each child. I am going to write down things we know about that child such as "...likes trains or likes swinging or likes Superman". These will make a reference for JP as I work on playing appropriately to maintain this friendship. For example, if he knows his friend likes trains than we should get the trains out to play when he comes to visit. Then we can work on skills like sharing our beloved Thomas (the coolest train ever) in order to make our friend happy.

2. Break the Winnie the Pooh obsession.

We have cut back, really! We have! Yet Pooh is still ruling our lives. Perhaps I have a greater motivation now that JP has started quoting the line..."I am a bear of very little brain". I may be more sensitive to this given the stereotype regarding the intellect of an autistic individual. I know that his repeating this line is just scripting but I fear that it sets him up to get picked on. Bless him that he doesn't think there is anything wrong with being "of very little brain" and I agree with him. Although I don't think he really even gets the meaning assigned to that phrase.

However, I know that I am also more sensitive to this because of something I overheard on Wednesday. We were at a local indoor play spot when I overheard a herd of 7-8 year olds ridiculing another child. One of the alpha males was holding out his hand and making a "dumb face" and saying, "Hi, my name is Mak and I'm a retard." I don't know if Max was there. I don't know if Max was his best friend or a classmate with special issues. I know it sent chills down my spine. I couldn't think up a way to interject myself into the situation to try and educate the little monsters. It was a group of 4 boys and 4 giggling girls who were busy acting way to cool for their age.

I stood there frozen wanting desperately to interject myself somehow to teach them a lesson. But I didn't know any of the children. They were jumping in a bounce house close to where my children were playing but not where we were playing. Since JP wanted nothing to do with the "castle" (as he calls it) we really had no cause for interaction with the monsters. So I just bit my tongue. If we had we been playing in the same area I might have felt that I could say something. But now I feel sick for letting that transpire. I know it was kids being kids but I am terrified of my JP being the butt of their jokes. And like it or not, he probably will be.

So my new goal is helping him understand this part of human nature and hopefully realizing that it is a flaw in the other children and not him. Most of all, he needs to learn who his friends are and who they are not. He is going to be hurt a few times in his lifetime. We all are. Even those of us without autism.

But I vow to start helping him understand this nasty nature of human beings. We'll have to start at the beginning since he doesn't really even get the whole relationship thing. I don't think it is too early and if we pace ourselves he might be able to figure it out before we get to puberty. Of course, then all the rules change!

We are different

2007-04-10T19:33:00.000-07:00

Just feeling a little guilty about yesterdays outburst.

First an apology about the length. It just kept going and going and going. This is exactly how my "To Do" list feels! Secondly I want to clarify that living in my state is not all bad. We have beautiful landscapes if you life flatlands and cornstalks. The people are friendly. In fact, here in the midwest, if I encounter a stranger while walking in my neighborhood we actually say hello to each other. In fact, I can even go for a long walk in my neighborhood without fearing for my safety--even after dark!!!

The job market is okay and the salaries are okay considering our cost of living is very affordable. Homes are reasonable (even though the property taxes are ridiculous!). All in all, life here is good.

But (you knew a "but" was coming--didn't you) this is a very conservative part of the country. One of my biggest frustrations is that the status quo is the only acceptable path here. Shamefully I ignored politics until the last few years because in my state my voice isn't heard. Most voters follow their party rather than vote for the issues that they think are important. Everything is almost always black or white. For the record, I am neither Republican nor Democrat. I don't really affiliate with either side. In my opinion, they are all ineffective once they get into office anyway. It is the nature of politics.

I ramble about all of that only to illustrate that autism has made me very frustrated. I love my son and he is doing great. But in the quest to do everything we can for him we have had to travel some different paths. We can't just follow the status quo. Our life is not black and white.

When your child is different you spend a lot of time reflecting on how your life experiences compare to those of your neighbors. Of course, Autism is not all bad. I wouldn't change anything about my son. I just want him to be the healthiest and happiest little man out there. But we have had to explore issues regarding special diets, supplements, and various therapies that are not mainstream. I hate explaining these to family and friends because they always look at me like I sprouted a third eye. How could I question the medical establishment or the government? How can I say that what the school offers in services is not enough? Who am I to expect specialized services? Please don't think that I am calling these people simpletons! I used to be the same way. I trusted that those in influence were looking out for my interest.

Autism has taught me that life is not black and white. What works for one may not work for another. This does not mean that it is wrong--it just means that it does not work in every situation. Different is good. Different means that things can change and still be okay. I don't have to do what my neighbor. For example, he might mow his grass in the morning. But it is okay for me to mow it in the evening this week and the afternoon next week. The critical issue is that it gets mowed!

I've spent years chasing happiness. Amazingly it took autism to help me find it. My happiness comes from a purpose in life and my mission to make our lives as fulfilling as they can be. Without autism I would still believe that happiness comes from a wooden box filled with all the latest gadgets and an attached 3 car garage. Instead, the joy on the faces of my children or the smell of their freshly washed hair during our cuddle time is all I need. Without autism I probably wouldn't be taking the time to even notice these simple events. Yes, I know that they will grow up. I am happy to grow up with them. We are learning this happiness thing together.

Autism has taught me that life does not just happen. We all have choices to make. We all encounter mountains to climb. If I continued to believe that it was okay to let others make the choices for my family than I would be letting myself and my children down. Until my children have a voice to speak for themselves it is my job to be their champion. The decision makers of the world don't have my child's needs in mind. They answer to the masses. Unfortunately, we are not the masses. We are different. Our special circumstances have made me realize that I have to use my voice and speak out.

This can be rather trying in a society where a single voice is rarely heard.

This can be rather frustrating when that single voice has to say things that don't follow the status quo.

This has been amazing for me because I have never been that person to buck the system. I usually just sat back and watched. Well,I can no longer be that person. I am learning to speak up and talk loud. I have no doubt that there will be times when I have to talk so much that my voice gives out. But I also know that I have a wonderful husband to fill in until I get my voice back.

Advocacy - remembering what is important

2007-04-09T19:44:00.000-07:00

My life feels like it is on pause lately. I have so many irons in the fire that I am not sure if I am coming or going. It seems that I am going to support group meetings or committee meetings atleast twice a week. It really has gotten out of hand. Fortunately, a few of my affiliations are coming to a close now that JP is entering the school age population.

I am ready to cut back...but I fear that I may have put my hat into too many rings!

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For example, one organization is a council made up of school, health and human service agencies and families. I was invited to sit on the committee as a voice for autism parents in our region. Although this has been interesting, I am not sure it has been very productive.

The only measurable success (from my narrow perspective) has come from our starting a parent network for all Early Intervention (birth to age five) parents in our school district. We wanted a way where our families could meet and get to know each other. We wanted to help end that isolated feeling we all have.

Initially, the Special Ed God in our district shut us down but we tweaked the plan and finally got her to allow it. But since it was "school affiliated" it had to be educationally based and NOT A SUPPORT GROUP. (i.e. they didn't want to create an environment where us families could get together and compare services). I guess I can understand their concerns.

Several people have put their blood sweat and tears into this group yet the participation has been rather dismal. Truthfully, the structure of the group (all disabilities) just makes it virtually impossible to meet the "educational" needs of such a diverse population. Still a lot of work has gone into the family network and I really hope it continues next year. Unfortunately, this years performance has put that future into question. It still has a few champions so I am confident they will give it atleast one more year.

One successful advocacy tool to come from the parent network is a Yahoo group designed for all parents of special education families in our school district. It was started by an anonymous individual (wink wink). It was a big "no no" according to the "Special Ed God" but we did it anyway. It is a separate entity from the network so it has absolutely no affiliation with the schools. Frankly, discussion is tamed because many of the families still worry that the school can see what they say. Ultimately, this has proven to be our "support group".

Ultimately, I have managed to meet 10 autism families with kids between 3 and 6 years of age. So in December we started our own support group and actually met at my house the first couple of meetings. We are now up and running and rotating between the member's homes. It has been awesome! It is helpful to talk to other families that are facing many of the same issues.

Part of the problems is that we live in a large metro area but our school district is broken out from the metro area. So we can go to metro autism events but it is rare to find a family from our specific district. The truly frustrating part is that I have found about 4 families with older autistic children who were in our district. The key word is "were". They have all opted out. This scares me. But so far things are going well for us with our district.

Interestingly, I've heard rumblings that the school folk aren't so fond of us autism parents getting together. We have one family that is raising hell and I giggle thinking that the school might blame our group. Truthfully, this family was going all on their own. Most of the rest of us are just watching them in awe. Sadly, that family might be moving away. We'll see. I was looking forward to having them around to cause waves!

I've also heard that I got the credit for the group coming together. Oh well. The sad reality is that we came together because as new families asked about what they could do at home to supplement the district resources--they were pointed toward me. There is little resources in the community to help them get started and no one in the school was willing to get them up and running with a structured home program. Ultimately, the families are told about "another family in the district who had success with a Verbal Behavior Program" (i.e. us) and given my email. Eventually it got tiring going over the entire song and dance every time a new family was diagnosed so we just decided to pool our resources and start a support group. We are meeting once a month and helping each other cope with life's ups and downs. (Does anyone else find it sad that so much of the time it feels like the blind leading the blind?)

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Well, back to the parent network. Initially it was discussed as being for all ages. However, the council we were working with was only birth to five so we started there. Another mom and I decided that we would run with it for school aged families as well. (I should explain that we are removed from the (birth to five) council when our kids enter school. Her son was in Kindergarten this year and as you know mine will be there next year.)

So we applied for a grant to expand this program to the older population. We needed the grant so that we could have the funds to bring in good speakers. We knew we had to make the topics narrower in order to make this group more successful. After all, it would be impossible to find a topic every month that would interest the entire special ed population. We considered it to be a success if we could present a couple topics to include each family. We worked our butts off getting the grant written up.

But I have had an uneasy feeling from the beginning. Special Education just doesn't seem to be a a priority. Our district has the reputation for being one of the best academically in the metro and people move here for the schools. But let's face it, our kids don't quite fit into that mold. Plus the mediocre success of the birth to five program didn't prove to be very good advertising. My gut was right, we received word today that our grant did not receive approval.

This might be a blessing. It was going to be a hell of a lot of work. My partner in crime and I just talked this evening and she is still committed to moving forward. (I was ready to walk from it out of exhaustion.) But she is right and this might actually will be better now that we don't have any school affiliation. We are now free to make it a support group. We are going to try and find a room in a church or library where we can meet without a room rental and just start up small. Perhaps the school did us a favor by shutting us out as now it doesn't have to be 100% educationally based and us families will have a chance to network and advocate!

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In our state, services simply suck. There is little information out there for families and there are few private providers knowledgeable about autism. Ultimately, we have one autism body to represent the parents and it is affiliated with the Autism Society of America. Of course that is not why we suck but it explains why there is virtually one think tank in the state--Behavioral. I find it really silly that all we hear about is ABA yet there are virtually no ABA services in our state. (In fact, I've heard a few horror stories about special education teachers not even knowing how to do a discrete trial! But I need to be fair and say that there are also some very competent teachers out there too. For example, our current teachers are amazing!)

So anyway, another parent at a support group I attend is on the board for the Autism Society of (*My Mystery State) . They have a couple of vacancies and she asked if I would be interested in running. At first I freaked and said no. I felt like I was a geeky freshman being asked to be on the student council with all the rich older kids. I wasn't sure I'd belong there. Then I thought about it and decided that I have no right to bitch about the services unless I am out there trying to make them better.

Needless to say, I am a little nervous about joining up. This organization is as mainstream as they come in my conservative state. In fact, I know there has been a lot of political debate among the members because at the annual state conference this group refuses to allow any biomedical topics. As usual the two autism camps do not play nice. And here in one of the most conservative regions of the US, you are considered a circus freak show if you go so far as to mention homeschooling or even a glutein/casein free diet. In fact, I wouldn't be surprised if most of my neighbors account for President Bush's 38 percent following.

So I am going to the board meeting this weekend to put in my name up for candidacy. Of course, once I get there I can change my mind. Maybe I shouldn't do this. It might be more politics and work that I want to take on. Atleast my friend will still be on the board and we will be in it together. We'll see...

-------------------

A couple of weeks ago I started perseverating on JP's summer plans. His principal at the school he will likely go next year had mentioned a summer school program for incoming Kindergartners. But I am also planning to send him to a local Recreational Therapy camp. So I followed up with the principal to see if I could get the dates for their program. That is when she told me they did not get their grant. Bummer!

Then today she emailed me to let me know that they did get their grant after all. That is really great news because now JP will be able to attend a program at this new school with some of his actual peers for next year! This will be huge for getting him adjusted to his new environment! (As an interesting side note... it is very likely the same organization that turned down the grant request for the special education parent network that I mentioned above. Oh well...it is still a positive event for my son.)

-------------------

Several weeks ago I applied on behalf of our metro area autism support group for DVDs of the complete presentations from National Autism Association 2005 National Autism Conference. The conference consisted of 40 presentations from renowned autism experts in fields ranging from cutting-edge scientific research to getting the most out of Individualized Education Plans. It covered behavioral as well as biomedical issues!

I got word today that we were selected to receive the free information! Now I know that much of this information dates back a couple of years but when much of the state has no informational resources this will be awesome for so many of the parents! Not only will our local group have access to it but we will be planning to share it statewide! I am very excited about the possibilities!

-------------------

So I have droned on and on about all these organizations and my activities. Ultimately, today was a big day. I feel like the pause button got switched off and the movie of my life is finally moving forward. I now know what projects lie in front of me. I know where to focus my energy. I just hope it continues to play at the regular speed and not fast forward!

Yes, there were ups and downs. One grant approval means more (free) summer services for JP. One grant rejection may mean less work for Mom (but continued isolation for our district's special ed families). One approval (for the DVDs of the NAA confererence) means more work for Mom but that work will be exciting and hopefully educational! I am just so relieved to finally to have a direction regarding all of these issues.

Now I just have to make it through our Re-Verification/IEP/Kindergarten placement meeting that is scheduled on the 26th. After all, the future of the little man that we are discussing there is the only reason I am getting all caught up in this advocacy stuff. His future has to be my priority!!!!

Please help me keep all of that in focus!!!!

Our study of emotions

2007-04-08T13:27:00.000-07:00

We've spent a lot of time the past few weeks working on our "Emotion books". These are books made out of colored paper were we try to sketch stories to help illustrate our emotions. This process is quite painful because mom is quite possibly the worst artist in the world and because JP hates to write or draw. This project has two goals: JP learning to identify and understand his range of emotions and hopefully an appreciation for drawing pictures.

Although JP is getting better at identifying that a person in a picture is happy, sad, angry, confused he still only can articulate his emotions in a black or white context. In fact, 90% of the time he will tell you that "JP is happy" even when he clearly looks frustrated by something. Recently he has managed to articulate that he is angry when we were trying to talk about the events after a meltdown. But he doesn't articulate sad or mad or proud or confused or scared and he doesn't share those feelings before they get out of control. My thoughts are that he has to learn to identify these feelings in himself before we can expect him to regulate them.

So we started out with a "Happy Book" and a "Sad Book". We have since added mad, excited, scared, surprised, confused and proud. I think they are helping and JP really does seem to enjoy creating and re-reading these books.

We were drawing in our new "Proud Book" about our accomplishment of drawing a picture of Pooh Bear when JP surprised Mom.

JP: Can you write a surprise book?

Mom: (a very surprised Mom ran to get another bundle of colored paper to quickly form a "Surprised Book" since we didn't already have a book for this emotion)

JP: JP will be surprised when I see a Pooh CD for my computer!

Mom: (poised with pen to draw his story about surprise). Oh. But you don't have a Pooh game for your computer.

JP: (Grins and knowingly looks at Mom). Walmart has one!

Mom: Uh, I don't know. I've never seen one there. Have you?

JP: (Perplexed look-after all you can get everything at Walmart!) Or the north pole has one? JP would be surprised to play Winnie the Pooh on my computer! Can we do that! That is the idea, right!

I think I have been had. So far we've avoided a trip to Walmart!

Making words on the computer

2007-04-02T07:37:00.000-07:00

We are on break from school this week. We just finished breakfast and are discussing what to do today. JP has informed me that we need to make words on the computer. So I play along and pull up Microsoft Word to transcribe what he says. But it turns out that this is not right.

"We gotta get right. We gotta get new one with all things on it. You can’t make words with that on it. But you can’t!"

Okay, reality hits. He wants Blogger.

"We gotta do questions on it."

Ah ha! He wants to do what we do with our Time Capsule questions. We just did them last Friday so it is fresh in his mind. So I pull up blogger and ask him what I should write.

"Hey, I'm Winnie the Pooh. Let's start with a song. I'll sing hum de dum dum hum de dum dum just like I climb the honey tree. That is the idea. "

Okay... (and he proceeds to sing and act out the scene of Pooh climbing the tree for his honey.) As a footnote, he is wearing his Winnie the Pooh Halloween costume from last year. He has been asking about it for a week now. I had it washed and hanging in the closet with all the garage sale items. I just kept playing dumb and telling him that I didn't know where it was. Well, last night he came into the spare room where I was working on the garage sale stuff and found it. Bummer! So he wore it all last night and then this morning he told me that he only needed two clothes to get dressed. It turns out that he only needs underwear and a shirt. No pants. Pants don't fit under his pooh costume. So it looks like Pooh, T (Piglet) and me (Christopher Robin) are in for a fun day!

So what words shall we put on the computer? I ask to lure him back from the Hundred Acre Wood.

Yes!

Can you tell me about JP?

Well, okay. Next we will start the movies. You tell me about the movies. Can you talk about the movie.

(one of my first time capsule questions is what is your favorite movie?) What movie? I ask as I play dumb.

The Many Adventures of Winnie the Pooh.

Oh, yeah. That was your favorite one wasn't it. What is your second favorite movie?

Winnie the Pooh and the Honey Tree.

Do you like any movies that Pooh is not in?

But Pooh flies in the honey tree and looks for his honey pots.

Yes, but tell me a movie that JP likes that Pooh is not in.

(long silence) Does Pooh climb this honey tree? He climbs the honey tree and he hums. Pooh climbs and climbs and climbs but as Pooh climbs he hums a liittle hum. (fake sneeze)

So JP tell me what are you and Mommy and T going to do today?

We are hanging out.

Thats right. What kind of things are we going to do?

I don't know.

Should we play on the computer? Yes. oh bother! Should we read books? Oh, yes! Should we do puzzles? I don't think so. We have somethings we have to do. Should we color? I don't think so. We can't try. How about movies. Hum. How about we start with the Many Adventures of Winnie the Pooh.

So JP can you tell me what your favorite animal is? But Mommy, I found a balloon. It's green. The balloon is green. Does it blow up. I don't know. But it does. I'll fly it when it is not tied.

(he sticks the balloon in my mouth but I ignore it and proceed with our questions)

JP, tell me your favorite animal. I like some cows. Cows! Cool. So what do you suppose a cow eats? He eats grass. Yes! You are such a smart cookie. (fake sneeze) Yes.

What is your favorite tv show? Many Adventures... No I mean a TV show. I mean like on Playhouse Disney. Johnny and the Sprites. Oh really! That is a cool show. (fake sneeze)

So JP, what is your favorite book? I read the book about Pooh gets stuck. Do you read any Dr Seuss books. Oh yeah. I like the Cat in the Hat. Cool. Any others? That Cat in the Hat Comes Back. Do you like Green Eggs and Ham? Yeah. Do you like that one with the Grinch? Yes. What one is that? That was the story. The story of what? Of how the Grinch steal Christmas. Oh wow! You are right! I like that one!

JP, do you like writing? Yes, I like writing Lightning McQueen. No, I mean writing as in writing your letters. No I think we need to do riding.

Shall we do more questions? I think I have things to do. (and he is gone!)

I follow telling myself that perhaps it is time to ban Winnie the Pooh for awhile. We need to balance out our lives again!

A new therapy with great promise...

2007-03-31T20:04:00.000-07:00

I had heard from another autism family about a gymnastics facility that is run by an OT who has worked with a lot of disabled kids. They have gymnastic classes for "regular" kids and they also have adaptive classes available. Although JP has responded very well to our sensory integration program with our private OT, he still has some strength and coordination issues. So I thought this might prove to be a good therapy for him. (Plus Grandma G offered to provide a scholarship!)

So Friday we went for an assessment before registering for classes. This was a trial run of sorts so that she could see what he needs working on and so that I could decide if it was worth the money before committing to an entire session.

I don't even know where to begin...it was unbelievable! JP was intrigued by the facility and he definitely got a ~~little~~ LOT hyper but the teacher was awesome with him! She knew just how much to push and how much to ease off. She got him crawling across the high beam, jumping on the spring board, rolling on the mats and even hanging from a bar. He did forward and backward somersaults and even a headstand. It was all amazing but the hanging from the bar was shocking because this kid will NOT do monkey bars. I have tried and tried. He absolutely will not support his weight while hanging--until yesterday. It was a thing of beauty. He even cried out, "Look at me, Mommy!" I felt the tears well up.

Then she brought out a mini bar that is about 6 inches off the floor. She asked him to squat by it and showed him how to kick his legs up. He followed her directions and had a grin on his face the entire time. Well, she just had in mind his holding on to the bar and kicking his feet up behind him. But JP decided that it would be fun to jump over the bar. So after doing it her way a couple of times he did it his way. She even encouraged him and told him what a great idea he had! He did it a few more times and then said, "Now you do it."

(mom's jaw hit the floor)

So she did. They took turns and then he joined her. She started counting "one, two, three, jump" and they jumped over side by side together. He was totally regulating his actions to her!!!! He was grinning from ear to ear and it was obvious that he felt responsible for creating such a wonderful game!

Okay, at this point my eyes were welling up. I was grinning from ear to ear and thinking that he looked like such a typical 5 year old. Then get this!!!! She said "one, two, three...jump" for like the 5th time and she jumped over the bar while he surprised us all and jumped backwards with a "gotcha" look on his face! It took my breath away. She looked at me at that instant with a huge grin. I think she even realized how amazing that was! Of course, one look at me and she almost cried as well.

So yes, we are starting gymnastics classes this week.

Here you go. I only have a few left.

The unveiling continues...

2007-03-31T13:20:00.000-07:00

Regarding the chelation debate:

A fellow blogger asked me to “google chelation and death" before going down that road. He was concerned and a firm believer AGAINST chelation. He blogs as a parent of an autistic child. He is also a doctor. He says that his stand is as a parent and not a doctor. However, today he has reversed that. I understand his predicament. He is a doctor and has taken an oath. He vowed to follow "hard-won scientific gains of those physicians in whose steps he walks and gladly share such knowledge" with the rest of us.

To him I respond that I value his opinion as a parent but I can't not take his advice as a doctor. He is a doctor who likely received 10 minutes of autism education in medical school. I don't know how old my "doctor blogger friend" is but during med school he might have been told the course of action is to institutionalize the child immediately. He should get the child out of the dreadful hands of his refrigerator mom! Or during med school he might have been told that the child with autism is not going to grow up to be functional or live on his own. Proper action would be to refer the parents to get counseling for themselves to deal with the sadness and suggest they get their affairs in order so that someone will be able to care for the child after they are gone.

I am 100% sure that his 10 minutes did not teach him that each of these children is different yet many have similar medical ailments. I doubt that he was taught in medical school that there are medical issues underlying some of their symptoms. I doubt that they told him that an autistic patient wouldn't have constipation or diarrhea because he is autistic but rather he might show autistic symptoms because something is causing him to have chronic constipation or diarrhea.

Now, don't get me wrong. My doctor friend probably knows a lot of this because he has an autistic child. In that respect I value his input. He even advised me in my own comment section a few days ago that ...

"And if a doctor tells you that something is OK, then it can't really be bad, right? Wrong."

Question everything. We are told over and over again to look at the studies and the science. I would really like to. I would really feel much better knowing that the experts have the answers. But there just isn't much out there. Our government is too busy counting our kids and spending their money looking for these new transforming genes that decided to go ballistic and alter the lives of this generation of children. Unfortunately, what studies are out there can be refuted in a number of ways. And I am talking about the studies on both sides of the debate!

I am not a moron. I have had a number of science and statistics courses in my lifetime. I have a masters degree. I know how to read and write and jump through hoops. That is really all my claim to "higher education" should convince you of. I even did my time in business management and know how numbers can be tweaked to substantiate a cause. And I see this happening on both sides of the debate. I don't know who to believe. Frankly, I don't think I really am truly committed to either side. So instead, I tried to look outside the autism community to help make our decision.

Yes, I googled "chelation and death". In fact, I did it a couple of years ago. It turns up LOTs of links. However, once you start looking at them it turns out that most of them are fellow bloggers spouting off hot air. Just like I am doing now.

So I researched chelation again at the request of my fellow parent blogger who happens to be a doctor. Again, all I find of substance is 3 documented deaths between the years of 2003 and 2005. In each case there was also discussion as to a medical mishaps between calcium and sodium EDTA. Also in the two first cases, Autism wasn’t even a factor. Yes, the third case, Abubakar Tariq Nadama, was being treated for Autism. Rest assured, I do not take any of these deaths lightly and I do take notice to that much of the discussion is about whether Tariq should have been receiving chelation in the first place for mercury toxicity.

However, in my search for answers over a year and a half ago, I also found from a review of “medical peer reviewed journals” (aka the bible to you in the medical community) that stated that American medicine frequently causes more harm than good. Here are some statistics that they provided:
These number are real and tangible. Here is the link. If you find that provider suspect I suggest you check the stats through the CDC or IOM. The numbers are all over. I chose this source because they made the nice little table for me to share with you.

Those numbers are scary but then you have to wonder how accurate they even are. Generally speaking, doctors are taught that mistakes are unacceptable. And truthfully, we want our doctors to be infallible because one tiny mistake could cost a human life. So how many medical accidents are out there that we don’t even hear about?

One study in the UK found that only 25% of their adverse incidents WERE REPORTED. (75% were not!!!) Why not? For reason of protecting staff or preserving reputations or out of fear of lawsuits. Another analysis found that only 1.5 percent of all adverse events resulted in an incident report, and only 6 percent of adverse drug events were identified properly.

Okay, so my next train of thought was considering the passion/anger out there about chelation treatments for autism I was confident that if there is a serious event…it was going to make the news! People are chomping at the bit to prove the dangers of this treatment. I am hoping that this means that a death from chelation could NOT get swept under the rug! Still there is little out there.

So after A LOT of thought and consideration we went with our research. JP had lots of gains with diet, gut issues and supplementation. We had blood, urine, and stool tests showing our son's current health. We started transdermal (not IV) chelation with our son over a year ago. I have no regrets.

He has been a great responder and the changes from his biomedicals and behavioral programs this past year have been 10 fold more than the year previous with only behavioral supports in place. We have tests showing metals flowing out of him. We have lab tests showing that he had lots of metals but no mercury in his blood, urine, stool, hair before chelation. This was a red flag as we should all have some mercury coming out of our bodies. After all mercury is in the world we live. This red flag meant that his body was not naturally detoxifying for him. We cautiously tried chelation and have found that mercury is now leaving his body.

After we began chelating, Abubakar Tariq Nadama died. Believe me I studied the case. However, that case again showed a medical confusion between Calcium and Sodium EDTA . As unfortunate as his death was, I see his death as resulting from medical error not chelation itself. Yes, he might still be alive if his family had not been doing chelation therapy but then he might be here talking with his parents about his day at school had the doctors not mixed up the types of medications.

(His parents reported that he had made gains from his previous chelation sessions.)

We are following a much different protocol with JP and approaching the detox process much slower. We are being much more conservative. Actually, I am not aware of any families doing IV chelation. I suppose they are out there but this has not been an option even discussed with either DAN doctor we have consulted.

We are on hiatus right now just as a precaution letting JP's body rest for a few months. There was no medical necessity but we chose to take it slow. But we will be continuing.

I just want to post my thoughts regarding chelation. I left this detail out of my initially "outing myself" post. Chelation is a big step. Not all families that are persuing biomedicals proceed to chelation. And I don't want anyone to turn their back on biomedicals because they feel pressured to chelate. But I want my voice heard. Not every family we know has seen dramatic gains with chelation. But some have. We have.

JP is making great gains and truly showing a love for life and the people around him. I don't question if we are doing the right thing. My answer is in his face and demeanor. We are not seeking to cure him. He will always be autistic. He will always have quirks but now he shows them off proudly with a smile.

Yes, there are risks. Even the medical community will acknowledge that 98,000 people die every year from medical error. But there are only 3 documented chelation deaths since 2002. Interesting all 3 fit in that medical error category as well.

Just my two cents.

March Time Capsule

2007-03-30T07:48:00.000-07:00

A Moment in Time...

What is your favorite...

COLOR: "Red" Why red? "Because Lightning McQueen" Oh, does McQueen have other colors? "oh, yes! (long pause) (long pause) but I like yellow for Winnie the Pooh". Mommy likes blue. "oh, blue is for the King." Yep, the King is blue in Cars, isn't he. But so is Blue on Blues Clues. "oh yes." (fake yawn, fake yawn...silence...fake yawn--time to move on...)

BOOK : "The Many Adventures of Winnie the Pooh" Really, why that one? "Because Pooh looks for his honey pots in the honey tree." Does he find them. "Yessss!" What does he do with them? (Fake sneeze) He climbs the honey tree and he hums a little hum." Can you show me? "It says hum hum de dum dum." (I attempt to repeat the hum hum de dum dum). "No, its like...Hum de de dum dum I'm ...(proceeds to sing the song...I can't get it all written down...something about climbing a tree like a bee...I'm a pooh bear...oh bother.

(Full round of applause and on to the next questions.)

MOVIE: "My movie is Winnie the Pooh and the Honey Tree". Why that one? "Because Pooh gets more honey pots in the honey tree." Does he eat the honey? "Yes, but where is my honey? I'm pooh bear...where is my honey pots? Maybe I'll go get my honey pots. I'll be right back. (and he is gone...returns with the red #8 cup from T's stacking cups. He proceeds to slurp imaginary honey from the cup. "Yummy!"

(In walks Daddy)...."Daddy, I'm pooh bear. I have honey. Oh bother. Empty again." (runs off)

(After a full scale Pooh Bear production we return to our regularly scheduled questions.)

FOOD:"Honey." (Now I have tried building off of this interest. The boy will not eat honey. I have tried and tried so I know that it is not his favorite food.) Pooh, I need to talk to JP now. I'll talk to Pooh later. So JP, other than honey, what is your favorite food? "JP likes strawberries" said Pooh and he ran away in search of honey.

(two hours later we have grudgingly colored, played trains/cars in the bedroom, read a couple of books(not Pooh books), eaten a real snack (not honey), T is finally down for a nap and we return to our questions)

DRINK: "Strawberry limeade." (This is a big surprise. We know he likes it but he has never mentioned it aside from when he has one in his hand. Dad likes to make quick stops at Sonic for Strawberry limeades.) So where do you get that? (long pause) Where do you get strawberry limeade? "At the strawberry limeade house." Oh yeah, I think it is called Sonic. "Sonic!" Do you go there with daddy. "Yes! Sonic! (pause) Whose Sonic?" That is where you get your strawberry limeade. "Oooohhh! Sonic!"

TOY: "a car toy" Which car toy is your favorite? "Lightning McQueen toy." Do you have a second favorite toy? "Yeah I have a Mater toy." Do you have a third favorite toy? "Oh yes, hmmm" What is it? "oh, maybe um, maybe..." What is your third favorite toy? "a boat toy" A boat toy? (we don't have a boat toy except an old bath boat but he doesn't ever use it) Where do you have a boat toy? (long pause) "I got it at Smallville." (**town name has been changed to protect the guilty**) Where in Smallville? "At Grandma P's living room." Oh. (pause)"Oh, whose oh?"

(The conversation died there as I was too shocked to carry on. There is a pirate ship that Grandma brings out when we visit. Truthfully we have played with that ship maybe twice in the past year.)

LETTER: "A" Can pick you second favorite letter? "B. The b says baa as in the word bubble. Does the b say baa in the word bubble?" Yes, I think you are right. Okay, I need another favorite letter but not c. You can't pick c. What would be your next favorite letter but not a c? "D. What does C mean? I want c,d,e,f, g but no h's." (sound bite complements of the Leapfrog Letter Factory video)

NUMBER: "I like the number 1. 1. 1." Why 1? "Because it was on the number movie." What number movie? "Counting movie. The counting movie by Baby Einstein Company." That's right. (gulp--maybe we watch too many videos) I think I like the number 5 because that is how old JP is. (fake sneeze and he playfully bopped the baseball cap off of mom's head to end the discussion of numbers)

(I don't know. We do have lots of videos but we do so much else too. Sadly, I don't feel like I can ban videos...where would his scripts come from? So much of his language is scripts. Typically, he uses the scripts appropriately. It is just that after two viewings he has the entire thing memorized, cataloged and filed away for later use.)

SONG: "it looks like hum de dum dum hum de dum...rumbling in my tummy... hum de dum dum...oh I wouldn't climb these trees if a pooh flew like a bee...but i wouldn't be a bear then...there is some honey and I'm a pooh bear so I need to climb there...time for something...(crash lands and run around the room)...oh bother." (very brief pause) "Shall I sing hum de dum dum hum again?" Oh yes! (and this time I got to watch it since I didn't have to type it all out! Perhaps we have a thespian in our midst. Do they have any Pooh productions on Broadway? Off Broadway?)

Interesting side note: JP was eating his toast when T woke up this morning. I said to him, "I'll be right back. I'm going to go get T". He got up and ran by me yelling, "I got him". I followed a few steps behind. He knocked on T's door, opened it, and said, "Hi, Piglet. I brought Christopher Robin with me." Then when I walked in he said, "Hi, Christopher Robin. "

So during breakfast I asked since Mommy is Christopher Robin who is JP? As if it wasn't obvious--JP is Pooh Bear! So is Mrs. T (his preschool teacher) Owl since she is so smart? "Daddy is owl" said JP. I guess I should be thankful I am not Eeoyre as my gloom and doom attitude makes that a natural choice!

OUR FAMILY

_______

My additions:

JP is still a bit temperamental but he has had a good month. His meltdowns had been so much better this past year; however, the last few months have caught us up and we have likely passed our quota. One moment we see really big gains in socialization and play skills and the next moment he is completely out of control. So far he isn't really getting physical...just very angry and very noisy. Typically he recovers okay. We just lose 15-20 minutes of our day each time.

Biggest stims - Still a lot of Buzz Lightyear scripting. Some McQueen talk and during the last week of March we reacquainted ourselves with Pooh bear (duh, you say!)
Bed time books:

Baby T

FOOD: cinnamon toast, pasta, hot dogs, chicken fingers, cheese. He still loves the Hamburger Helper Cheesy Beef Taco single servings, mac-n-cheese, ramen noodles, green beans, oranges, pineapple chunks, pickles, popcorn, rice crispy bars

DRINK: Milk from a bottle. Juice from a sippy cup. Anything with a straw! If you have a drink with a straw...IT IS MINE! T recently discovered Fruit Punch Gatorade.

MOVIES: Anything Baby Einstein. Anything Wiggles.

TOYS:

Our CARS characters love racing through this parking garage.

Dora's talking backpack taught T how to say backpack.

This is Puppydog. We sleep together.

I am a scribble pro. Mommy made me use this after I scribbled all over brother's Vineland-II Assessment form for the school. I don't know why she got upset--my scribbles looked just as good as hers!

My favorite "toys" are those things up high. You know...things like pencils, ziploc bags from the kitchen, the cheese grader from yet another drawer in the kitchen. If you turn your back for even a second I will scoot the chair over to the table, get on the chair, get on the table or even the counters. That is where all the cool toys are!

I love to play cars and trains with my big brother. Unfortunately I am just a little short to reach the middle of the train table so I always have to climb on top of it to get my train across the bridge. JP doesn't like it when I do this and always rats me out to Mom. I am just pretending to be Godzilla!

BOOKS:

WORDS/ACTIONS:
(against my better judgement I will include these...I'll try not to over analyze)

Daddy, BaBa (bottle), ball, I did it!, Bye Bye(with a finger wiggle), Baby, straw, Bath, puppy/dog, All done, Mama, head, backpack, car, go (We say "ready, set" and he says "go"), Three (We say "one, two" and he says "three"), Burp game (pretends to burb and cover his mouth), peek a boo, noisy/sloppy kisses, blows noisy kisses, touches head during "monkey jumping on the bed", wags finger no during the "no jumping on the bed" part.

Grabs your nose, eyes, mouth, ears if you name the items. Only points to his own nose however will grab all of these parts on JP. Will walk up to JP and pull on his ears.

Will pounce on JP if we say "Dog Pile".
Will head to the stairs if you say it is time for a bath.
Will head to the refrigerator if you ask if he wants milk.
Will wave bye bye if you start to get out the coats.
Will give you his feet if you have his socks and shoes to put on. (unless he is in the mood to run away)
Will bring food from the pantry to Mom. Usually goldfish, rice crispy bars, or fruit snacks.
Will run from you (with the naughty item) when you tell him no.

Reportedly heard but unverified: duck, cup, juice, fish, JP
T has started being bashful around other people.

A good night sleep?

2007-03-28T11:18:00.000-07:00

After two days of a stomach virus I emerge to find my house is a mess. The sink is overrun with dishes. There is laundry piled up in the hallway. I'm not sure which piles are the clean piles and which are the dirty ones. The kitchen floor has unidentified goo on it. (not sure that has anything to do with my being incapacitated) But the boys are all healthy so it is all okay.

Yes, it has been a crazy couple of days here. Monday afternoon I realized that I didn't feel quite right. Monday night I knew that I wasn't right. Hubbie sent me to bed at 9:00 alone in our room. He took the baby monitor and headed to his basement office. He had to monitor a couple of jobs at work and figured he would monitor the baby as well. He has a single bed down there as it also serves as a guest room. It was a wonderful gesture. We parted ways that night with him saying to get a good night sleep and we would assess our situation after we knew how I felt the next morning.

7:00am Tuesday -
Dad pops his head in the bedroom. He asks how I feel. Since I was up every couple of hours during the night "taking care of business", I explain that he might have to cover the kid detail atleast for the morning. He responds, "Well, I didn't get to sleep until 6am."

WHAT THE HELL!

I have to admit in that moment I was pissed. He knew I was sick. Why didn't he rest up. I'm mostly annoyed because when he was sick the week before he was able to hide away. He took a couple days off of work and slept undisturbed. Poor me. Where is my equal treatment? Life as Mom can be damned unfair!

All I did was groan at him. I knew it wasn't as though he stayed up on purpose. I knew it was the demons that he works for. Let me tell you that access to work from home is not all it is cracked up to be. They own you! An issue came up overnight (as it often does) and he spent his entire night watching the files run and fixing them when they crashed. (He is a computer programmer.) There are times I hate his job. Then there are the times that I realize that without his job we would be in big trouble.

I tried to drag myself out of bed. He told me to go back to sleep and that he would get JP on the school van and hang with T. I knew he had to be exhausted and I really did try to get up. But as I tried to climb out of bed I got a nasty charlie horse in my calf and had to wrestle away the cramp for a good 3 minutes. Then after it subsided and I stepped gingerly on my leg I realized that I was nauseous. So I climbed back in bed.

I woke up a little before noon. Dad was in my office off the living room logged into work. T was watching Boobah on TV. I got lunch ready for the boys and then JP arrived home. I actually felt better by this point and was no longer dashing to the restroom. Dad took JP to his class at the Y and I hung with T. It was a day full of TV and laziness. (Or as JP would say...being a couch potato)

By 9pm last night we were all dragging. Dad was exhausted. I was feeling better but also exhausted. We tag teamed the baths and got the kids to bed on time. BUT GET THIS....at bedtime JP asked to listen to his Cars soundtrack instead of his Winnie the Pooh Storybook CD!!!

However when I checked on him at 10 (to turn out his night light and switch to his classical music) he was still wide awake. He was reading his Winnie the Pooh story book but still listening to the Cars soundtrack. (That meant that he had gotten up and started it again.) He did allow me to turn off the nightlight but he wanted to finish his CD. I wasn't about to say no so I snuck back in at 11 to switch CDs. He sleeps all night to classical music for white noise and I didn't want to risk some of the more intense tracks from the Cars CD waking him up at 3am.

So I guess during this crazy period we got to celebrate a happy moment...overcoming our issues with listening to our "favorite song" out of the context of its movie.

So, anyway, I went to sleep around 11 and got a good night sleep. It was wonderful. The boys and I got up at 7 this morning and have proceeded as though nothing was ever wrong. However, Dad just got up at noon. Poor guy. He had to do a little late night work again last night so he slept in. He's now headed to the office looking like a zombie.

I owe him for suffering in silence. Don't get me wrong, I am still frustrated that Mom never gets to be sick without guilt. Where are my two days holed up in my room alone with no concerns other than sleeping it off? But I can't really complain because truthfully Hubbie really got the raw end of the deal. Between work and family--he has an awful lot of people expecting him to do it all. Poor guy.

Outing myself

2007-03-25T06:52:00.000-07:00

(first off, I apologize for the length of this post!)

The recent Discover Magazine article, Autism: It's Not Just in the Head has brought about debate in blogland. Actually I wouldn't call it a debate. Those that feel noble in their assessments--bash it. The rest of us just read it and move on. In this situation I usually find myself withdrawing. Everyone is entitled to their opinion. They have theirs and I have mine. But then I realized that I never come across anyone in blogland who shares mine. They are out there. We just don't speak up. But I have come across a couple of blogger friends who are taking a moment to pause and consider biomedicals. They are overwhelmed and unsure. It is for them that I am outing myself.

As I scanned through my blog I realized that I have left out a critical part of JP's therapy. It doesn't take a rocket scientist to figure out why I my have subconsciously done this. Perhaps it wasn't so subconscious...I tend to avoid debate. I am not here to debate anyone. However, I have decided that if I am serious about reason #5 regarding "why I blog" than I need to address this issue.

Biomedicals.
Yes, we do them. Yes, I believe in them. And yes, I credit them with a lot of the gains JP has achieved. If you have been a reader of my blog you also know that we also have a verbal behavior program in place. We also have explored PRT, ABA, RDI and social stories. He has speech therapy and occupational therapy. We are doing a developmental soccer program and adaptive swimming. He is getting ready to start a gymnastics class. We are trying a listening program to help with his auditory issues.

Ultimately, JP is a very busy boy! We do and try everything. Some works. Some doesn't. We try it. Give it time to take hold. If it doesn't work, we move on. That is just how life works. That is not unique to autism. That is how any rational person deals with the issues in their life. They explore their options and make informed decisions.

So you might ask how I know biomedicals deserve some of the credit. After all it might have been the other therapies that accounted for the gains. Well, that is true. But his discrete trials did not make him poop regularly. We also spent the entire first year hiring out 20+ hours of home therapy help. (We also did continuous therapy when we were with JP). The next summer we started biomedicals and had to reduce our home staff. Despite the reduction of behavioral hours his gains were phenomenal. And no, he did not grow out of it.

It was obvious that he was more in tune with us. He was feeling better in his body and better able to focus. There is no doubt in my mind that this is where his gains came from. Biomedicals aren't curing him but they are helping him feel better in his body so that he is more receptive to our other therapies. In my opinion it is a package deal. My child needs therapies from both worlds to move towards his maximum potential.

I find myself get very VERY frustrated with my peers within the autism community. There is so much judgment among the families. Some parents are blamed for trying to "fix or cure" their children. Other parents are blamed for not trying to help their children. There is a lot of passion on both sides of the therapy debate. There are well educated and intelligent people on both sides of the camp. Frankly, both sides would earn a lot more credibility if they showed more respect. Their bickering only turns people off. The name calling only makes it harder for the rest of the autism community to look at the issues and evaluate them for themselves. Truthfully, I tried to avoid both groups for as long as possible because they are just way to intense! And that is wrong. My son lost a year of therapy because I was too intimidated to look at a specific therapy because it was portrayed as quackery.

When JP was diagnosed I made it my focus to help him in the here and now. I focused on the behavioral therapies because that is what was out there. That is what the schools tell you about. That is what the developmental pediatrician tells you about. Biomedicals didn't get much air time and frankly they were scorned by these people I perceived to be "in the know". The biomedical families where portrayed as gullible and desperate.

I even found myself judging a fellow parent who was fully pursing biomedicals. She was helping her son and all I could think was she was wasting time and money. This is such an injustice! Our children are the ones who lose out when we fall into that mindset. I can handle if you think I have gone over to the dark side but what I can't handle is that there is a child out there with chronic diarrhea or constipation and their family doesn't realize that this can be helped. That is not autism. That is an imbalance in their body. That can be fixed and the child can feel better!

Sorry B, if you read that. I didn't mean to judge you but I have to admit that I did. I had fallen prey to the mainstream attitude. But I thank you from the bottom of my heart for being there to answer my questions when I came around! You didn't judge me. You just waited and were there when I started asking questions. You continue to loan me books and share your experiences and I am so thankful for your being there to help ease my anxiety. Especially that first night we did the B12 shots. You and I have since talked yeast, supplements, chelation. We've also talked Verbal Behavior, occupational therapy and auditory training. We talk about autism in general. You know about autism in general. It took my getting involved in biomedicals for me to realize that you are just like me--a parent who is looking into anything and everything to help your son. I apologize for stereotyping you initially just like many of our peers are guilty of stereotyping all of us biomedical families.

Well, what changed my mind and opened my eyes? We had another dramatic life changing event nearly 2 years ago. When T was conceived everything changed. It had to. My perspective changed. I knew that I had a little one coming and I had to know how to protect him. Yes, finding a cause would not change anything for JP but it might prevent T from having to live with the same difficulties.

I had heard the mercury talk and had ignored it. But when the book, "Evidence of Harm" was released something propelled me to picked up a copy. Now, I want to be completely honest about this. I was very skeptical of the "conspiracy theory" attitude but I figured that I am a sensible adult. I can read and pick out those facts that look questionable. I still stand behind that belief. And I do urge other to read the book. It is eye opening. You can take it at 100% or even as 50% factual. It doesn't really matter--it is still eye opening. And, yes, it is mostly one sided. David Kirby mostly provides the story behind the biomedical camp. He did try to interview and tell the side of the CDC but they wouldn't/couldn't talk. Now, when you factor in politics this isn't so surprising. Still it is disappointing. I would like to know the full story...but the best we can ever get is a one sided perspective. But then life is all about perspectives and no two people have the same one.

My thoughts at that time were that mercury could very well be a contributor to the increase in autism. I didn't know if I could blame it for JP's autism. However, I did not feel that genetics could be the full answer either. We do not have any other cases of autism in our extended family. If it was purely genetics than there should be others. In fact, I had never met another autistic individual. So I read the book just to get a glimpse at the debate and decide for myself.

I compare the mercury theory to cancer. We can't say that all cancer is the result of cigarette smoke. Some are, some aren't. But there is no denying that cigarette smoke can be blamed for many cases of cancer. (Now we could debate whether to blame the smoker or the cigarette but that is for another forum). We can't deny that mercury is a neurotoxin. So, just like I ask my mom, "why the hell do you still smoke?". I also pose the question to the powers that be, "Why the hell do you include a neurotoxin in our vaccines?"

My current personal thoughts are that there is a genetic predisposition for some families. We don't excrete toxins as well as our peers. One can pose the questions about why the parents who received childhood vaccines didn't get autism. That is true but we received fewer vaccinations in our day and our environment was cleaner. For example, we could actually catch and eat fish in the local ponds. Today much of the fish in our region (in the heartland) has been deemed not suitable to eat due to environmental toxins. Our world has changed.

Not only do our kids have to breathe in more pollution today but they have also been jabbed with many more vaccines. And I firmly believe that those kids whose genetics don't allow them to excrete mercury and other metals have paid the price. I've seen the statistic over and over again. They say that 1 in 6 kids has some sort of developmental delay. What the hell! How does that happen? Can we say that it has to be vaccines. No. There are many other environmental issues at play. This isn't a fight about vaccines. I feel that they play a part but it is about toxins in all shapes and forms. I truly feel that an intelligent adult can not deny that something is amiss.

Another crazy reality for me was when I went to my Ob-Gyn to confirm my pregnancy. They gave me a pamphlet on mercury levels in tuna and how pregnant women should limit their consumption. I also received a pamphlet on how important it was to me and my fetus that I get a flu shot. Something is amiss.

The mercury debate is a very heated one. The mercury side is adamant that we need to do something to stop altering the lives of our new babies. When we spend research dollars on studying genetics and helping the already diagnosed, we allow more babies to join their ranks. I don't think that they mean that we shouldn't research these avenues but they desperately want funds applied to prevention as well. The other side thinks it is all about blame and that these "loonies" just want someone to pay for the wrongs to their children. Then there is the neurodiversity crowd who just thinks that we should leave the children alone. To them, I only say that this goes beyond just accepting their quirks. I love my son's quirks. That is who he is. But I want him to be comfortable in his body and be the best that he can be. I owe it to him to make that possible.

I think there is fault with the government but I also feel that pushing that issue will get us nowhere. Face it, if every family who vaccinated had cause to sue than there would be little money to be had for those impacted children. And yes, every family could sue...not just those with autism! Every family would have a case if there was negligence on behalf of the government because every family could have been impacted. (But then it does look like atleast 1 out of 6 has been impacted) But again, this goes beyond the vaccine program. We have to look at our environment as a whole. Our children have a genetic susceptibility and vaccines as well as other environmental pollutants have pulled the trigger.

It is fruitless to focus on making someone "pay" for this wrong. But I will stand behind the statement that we have been abandoned by society when it comes to serving our kids. We can't
afford to pay out of pocket for these therapies. And these therapies are helping some of them.

There has to be a calm place in the middle where sensible adults can talk about the issues. But the politics all around us keep that from happening. Politics keep some families from exploring biomedicals. They are expensive. They are portrayed as alternative. They are portrayed as dangerous. If your child had lead poisoning the medical establishment would authorize chelation. Yet within the autism community it is said that we are "risking the lives of our children".

Politics allows the government to leave us families fending for ourselves. Politics makes doctors who support our theories outcasts in their medical community. Those who raise issues or speak against the system become quacks. Politics allows the insurance companies to tell us that our children aren't worthy of receiving these therapies because society has already written them off. Politically speaking this is a huge snowball, and no one wants start the avalanche.

Until hell freezes over and our political climate changes, the lives of our children remain in our hands. There won't be adequate research to support biomedicals because they are too busy searching for the genes that have magically gone ballistic with the current generation. I am not doing anything risky with my child's life but I am out there traveling the dirt roads finding the way. His future is in my hands and I owe it to him to explore all of the paths.

Okay, off my soap box.

I probably should explain our path into biomedicals. There is so much to learn. To the new family looking at it...take it slow. Pace yourself. Our journey with autism is a marathon. You are not running a sprint so don't get going so fast that you collapse from exhaustion. And find a good DAN doctor that you like. Don't feel restricted to the only one local or the only one your insurance may pay part of. If your child was needing brain surgery you would find the best...not the cheapest. ( I know that is easier said that done)

I just want to state for the record that we entered the biomedical world very cautiously. I wasn't completely sold on it and frankly I was turned off by the conspiracy theories. But we had just found out we were pregnant. There was a mini-DAN conference held locally. Looking back I find this to be extremely lucky. It was what I needed and when I needed it. Our state does not have much biomedical support so it is bizarre to me that they held a conference here. In fact, those of us doing biomedical therapies have to travel 2-3 hours to consult with a DAN doctor.

Unfortunately (fortunately?) , we do have one DAN doctor in our local community. He is one of those doctors that I feel does a great injustice to the biomedical cause. Apparently he met the bare minimum requirements to become a DAN practitioner and then proceeded to do mostly his own stuff. He doesn't run blood, stool or urine tests. By all accounts he is a quack. He feels pressure points and then tells you what supplements your child needs. I am telling you this because I am certain there are quacks out there. There are weeds in every lawn. And it is doctors like this that are used to belittle the DAN organization.

I have consulted a DAN doctor in Santa Monica, California and one in Kansas City. Many of our local families go to Kansas City. Both of these doctors are professionals who look at the individual child and find the treatments that your child needs. It is not a "one treatment fits every child" philosophy. We are continually evaluating my son's outputs and blood levels to monitor that everything is okay. If you consult a DAN doctor and feel like they quack...they probably are. Don't give up on the DAN organization as a whole. Find another one. Give another one a try.

This post is getting ridiculously long. I just feel like I have to explain myself. And that is ridiculous. I know that there will be some of you out there that judge us for doing biomedicals. I know this because I read the contempt and scorn in some of your own blog postings. I just took this leap of faith because I hope that by now as a reader of my blog you realize that we are smart and educated parents. We are not sheep.

One of my goals for my blog was to help other families who are facing autism. I just hope that my honestly will help you consider biomedicals and show you that it is something to consider. You aren't going to get referrals from your school teachers or your pediatrician. But I am finding that there are many more of us biomedical families out there than you realize. In fact, even here in the heartland where we define "conservative", I am finding that many of the other autism families are approaching biomedicals. There are many of us out there. But most stay quiet about it. I find that sad. We really should be yelling from the rooftops so that other families will know that there is hope. However the only voices that those families hear tend to be the naysayers. That is frustrating. I am sorry if I have helped perpetuate that.

But I am saying it now. We are not sheep and we are not desperate. We love our child. We are not seeking to cure him. We are seeking to make his body healthy and to make him comfortable in his body. We are using biomedicals and it is helping.

So how is it helping? Here are a couple of our early successes...

My son had horrible yeast issues. I didn't realize that it wasn't normal for a 3 year old to still have 3-5 loose stools a day. I didn't know that until I attended the DAN conference and found out that so many of our kids have yeast/gut issues. That is a real medical issue. Our pediatrician did not catch it. It took my willingness to delve into the biomedicals and do the research before we got any resolution. As a footnote, JP took Nystatin for a little over 6 weeks and became "regular" for the first time in his life. He still has pretty much one solid bowel movement a day. No more chronic diarrhea! I truly believe that if we had not helped him deal with his yeast issues than we wouldn't have him potty trained by now.

Another eye opener for us was Methyl B12 shots. This was the first leap of faith we took. Nystatin was mainstream but giving our son a shot was a bit scary. Yes it is just a vitamin but it was still unsettling. Fortunately the needle is very tiny. Up until recently we gave it to him while he slept and he didn't even wake up. Now we do it while he is awake. Anyway, this was our first step out on the biomedical limb. Hubbie and I talked before hand and agreed that we would not discuss if we thought we "saw progress" immediately. We both worried that we would see progress where there really wasn't any. You know, wishful thinking and all.

Well, we gave JP his first shot. I watched him like a hawk. He seemed a little more chatty but I couldn't be sure. We gave his second shot three days later. That next night Dad and JP were going out for a walk. I couldn't help myself and mentioned to Dad that I though JP had been more spontaneous with his labeling of items. Dad pooh poohed me and told me that it was too early to tell. I was just doing wishful thinking.

(JP was a little guy who could identify everything yet he never used his language to share that with you. If you asked him, "what is that" he would answer but that was the extent of his language. He never spontaneously labeled items.)

They came back from their walk. Dad was grinning. They had walked around the pond near our house. This was the same route they took every night. Typically JP would just lay over the side of the wagon and watch the wheel go round and round. This night he chattered nonstop. He said duck and tree and water and flower. He labeled everything. He didn't point but he spontaneously shared what he was seeing! Dad was sold. Mom was sold.

Now, I want to put a foot note on that story. That was our experience. B12 just happened to be something that JP reacted very well too. Not all kids will have such a burst. Thankfully we did! But please know that I am not telling you that B12 cured my autistic child. No! It seems to have helped him focus and brought about more language.

I have other biomedical experiences but this isn't about converting anyone to biomedicals. I just wanted to illustrate our successes with biomedicals. I share hoping that my readers will realize that biomedicals are not all about chelation! There are so many real medicial issues that our children are facing. Many of these issues our regular pediatrician should have caught but he didn't. He isn't an autism expert. He didn't realize how common yeast is and that we should evaluate JP for it. Much of the medical community just assumes that we are desperate parents. Our kids can't tell them that their tummy hurts and our word doesn't always mean much. It should. That is the biggest perk of dealing with a DAN doctor.

Well, this post is getting way to long. I could talk forever. But I won't. I just really wanted to put my voice out there. This article was a good read and I hope that it will give pause to some of the other autism families. Please don't get caught up in the political debates. Just look at the issues and do what you feel you can for child.

Another good source to explain these issues is Children with Starving Brains by Jaquelyn McCandless, MD. Sometimes it takes a few months to get in to consult with your DAN doctor. This book would be a good source to get you going.

I really don't know why I decided to out myself. This isn't really a big issue but I find myself so frustrated when I read blogs by others who ridicule the biomedical world. We all want the same thing and we should not judge others for exploring other avenues. And remember exploring does not mean that you have to go through with any of it. You can always pick up the book or go to an consultation and then decide it is not for you. You don't have to do anything you are not comfortable with. I only hope that my honesty will help give credibility to the cause and that it will give you pause.

Notable events

2007-03-23T07:34:00.000-07:00

The flap about Baby T
First of all, thanks for the supporting words regarding my anxiety attack over T. I know I am probably overreacting. Honestly, he is doing great with his receptive language. We aren't getting new words flooding in but he does chatter a lot. Some new words. But it is mostly still baby chatter rather than words. His words are only used labeling things and that is a point of sensitivity for me. That was the only functional language JP had at the time of his diagnosis.

I can run through a long list of developmental milestones. T is meeting all of the major ones but I am not a good judge of the language ones. I don't have experience with what type of communication is normal for a 16 month old. As anxious as I am, I don't think it is time to have someone evaluate him. I think I am just being paranoid. To the casual observer he is communicating. When we ask if he wants a juice he goes to the refrigerator. When we ask if he wants a bath he runs to the stairs. I guess what I am obsessing about is when does he start asking us for the drink or to take a bath. I am looking for that initiation. I think it is too early to expect that. But that doesn't mean that I won't continue to over analyze his every move.

But thanks for your support. I will try not to become annoying with my pleas for reassurance. I just really needed to hear it this week.

Kachow Song Therapy
Now, for a kachow song update. Our drive therapy seems to have made an impact. In fact, last night as we headed out for Burger King (for dinner and some social interaction with unsuspecting neurotypicals) JP asked for his "car music". Today I am going to try and reintroduce it into his bedroom. He was very accepting of it being played in the van. However, I have a feeling that it is more acceptable since he is in a vehicle at the time. In fact, much of the time he calls the Van, Mack. (Mack is McQueen's semi that hauls him across the country) So perhaps he is more tolerant of the music in this context as they overlap in his mind. We'll see how it goes when we play it on the radio in the house again.

Lost Memories
Now for a trivial but monumental disappointment. My camera broke. I am not sure I can live without my camera. It is an extention of my right hand. I take pictures of everything! How can I have pictures of every milestone of JP's life for 5 years and 3 months and then stop. How can I have pictures of every moment of T's life for almost 17 months and then stop. How can I not be documenting every "skill" T shows so that later I can prove that he had it. Obsession, I know. But I am lost.

I don't see any other option but to replace it. It just feels trivial when there are so many other expenses that we need to cover. But I did get some cash for my birthday and I am always told to spend it on myself. I guess I will this time. We are having our taxes done this afternoon so I'll know what kind of refund that will provide.

I am also in the midst of preparing for a garage sale. First I must state that I hate garage sales. They are so much work and I don't like the dickering over prices. It is so bizarre to me that I can put a toy out to sell for a buck and someone will try to get me to take 50cents. Come on! It's a buck! I am not even sure why we put prices on the stuff to begin with. But we need the cash and we have LOTS of toys and clothes to liquidate!

That money was supposed to be a cushion for the next year. I feel guilty taking money away from therapies for a camera. Oh well. I'll just find a cheaper digital camera and keep on moving on.

A little brotherly interaction
As I type this the boys are watching a Wiggles video. T is in a trance. He loves the Wiggles. JP hums along but is paying with his cars. I am in my office where I can hear them but don't have a complete visual. Here is what just transpired...

JP: Mommy, T is a ghost.
Mom: Ha! Does he like being a ghost?
JP: (no answer)
T: Waaaaa!
Mom: JP, when T cries like that it means he doesn't like it. That was a cute idea but let's take the blanket off.
JP: (rip, just like a magician pulling the tablecloth off a table full of dishes)
T: Plop! WAAAA!

Poor little guy. Mommy is secretly pleased that JP is comfortable enough to play with T. That is sort of playing together, isn't it? T doesn't really seem bothered. In fact, he perked up as soon as the blanket was removed. When I left JP was sitting on the floor and T was climbing over him so he could see his movie.

Well I guess I better get back to my boys.

A flap or not a flap...that is the question

2007-03-21T07:36:00.000-07:00

What is "normal".

I am admittedly in a heightened state of paranoia right now but I have not been able to shake the nauseating feeling that is take hold of me.

I find myself continuously thinking, "Is that flapping?". So I have to ask...when does flapping start? JP doesn't really flap. I don't know what flapping looks like in a 16 month old. But then maybe all 16 month olds flap a little? We do seem to be flapping a lot. Could this just be an awkward coordination phase that all young children go through? He only does it when he gets excited. Uh oh, that sounds like autistic behavior. But then "normal" babies clap when they get excited and we don't deem them autistic. Maybe T is trying to clap. But he knows how to clap. He isn't clapping, he is flapping. Does this mean autism? If this is a sign, should we have seen flapping earlier? Is it just emerging now as he works on motor control? Does "autistic flapping" exist at 16 months. Can I really consider it a sign?

He seems to be doing okay elsewhere. He is verbal. He probably has a dozen words. He doesn't use them a lot but he does use them appropriately. He doesn't ask for things but he does label them. He doesn't ask for a bottle but he chants bottle when he sees it. Should he be asking for a bottle when he is thirsty? JP didn't initiate. I don't know when this should begin.

I am telling myself this is a motor development fluke. A few weeks ago we got a new Baby Einstein video "Baby's First Moves". T loves it. The babies in the video do all kinds of movements: Clapping, jumping, running, peekaboo. In fact, JP loves it as well so we are making it out to be therapy. I helped JP recognize how much T loves it and now it is JP's job to try to get T to do the actions. Great therapy for both of them!

However, for a couple of weeks now T has been waving his arms more. Actually more of just his hands. It sure looks like flapping. But I didn't notice this before we got the new video. Can it just be him learning the motor development from the video. He is just discovering how much fun it is to move his limbs?

KACHOW! kachunk

2007-03-20T06:58:00.000-07:00

I finally figured it out! I know what the Kachow song is! For two months this has been JP's response to "what is his favorite song" but I hadn't been able to figure out which song he meant. I knew it was from the movie Cars but our conversations around the topic always left me thoroughly confused. Honestly, I think he just likes all the songs but when asked...he always replies "The kachow song".

So anyway, we finally got it straightened out. Real Gone by Sheryl Crow. He really never expresses favorites so I am excited that he claims to have one. I decided to try to get a copy so he can listen to it in his room. He spends a lot of time in there listening to the CD stories of his favorite Disney movies. This would make a nice change. And best of all, Grandma was visiting and you know how Grandma's like to spend money! So we bought the soundtrack.

The next day, he and I went up to his room to play trains. I took the CD up with us. He was very excited by the CD case. I put the music on.....................and he ran screeching from the room with his hands over his ears. He wouldn't come in unless I turned the music off. And I must state for the record that it was not loud. Finally, I did get him to come in and turn it down himself. He finally agreed to let it play as background music but it was so faint that I could barely hear it. He was still anxious the entire time it was on.

If you ask him, it is still his favorite song and he still gets hyped up during the movie when it plays. He just does not like it being played out of the context of his movie. I guess I should have seen this coming. We do this sometimes where we compartmentalize people or things and only accept them in that original format. I always make an effort to shake that up once I identify it.

Shake...shake...shake...stir...stir...stir...shake...shake...shake

So the past few days I have been playing my new favorite CD in my stereo downstairs. Unfortunately, JP goes upstairs. Today I am going to get so brazen that I am going to play it in the van. We spend so much time driving from therapy to therapy that I might as well make the drive time therapy as well, right? However, this first time I think I will save it for the ride home. No sense getting him worked up before his therapy session.

So Kachow I figured it out! But kachunk, why does everything have to become work. Why can't a special treat just be a special treat?

Chaos reigns

2007-03-18T09:22:00.000-07:00

Thanks for all the birthday wishes! No, my absence was not because I got whisked away for a vacation in paradise. We've had travelers pass through and then my parents came to stay for the week. So needless to say, we have been living a crazy life here.

The truly sad part is that with a house full of 4 adults and only 2 children I still didn't find time to finally use the box of hair dye I bought over 3 weeks ago! Oh well, grey is the new blond, right?

Another thrill coming our way is that I get to spend the next week completing all kinds of paperwork. I have our Kindergarten packet to fill out for roundup and I also received the paperwork to complete for JP's re-verification process. Hard to believe that we have been in the special ed system for 3 years now!!! Hopefully the process goes smoothly.

Smoothly. Hmm. YeAh That haPPens.

Either way, I spent the last few days filling out a BASC-2 behavior assessment and the GARS-2 Gilliam Autism Rating Scale. I still have the Vineland II adaptive behavior form to fill out. The fun never ends! It feels like answering the same questions over and over again but oh well. It is what the school wants from us.

Anyway, I want to get back to my blog and to thinking about life but right now I am running in circles trying to live my life. Hopefully I'll be back soon!

I found this funny link summarizing life as I know it...

33...the year of happiness

2007-03-13T06:42:00.000-07:00

Birthdays
They used to be such an event when we were kids. Balloons, friends, games and food. A celebration!

When did they stop mattering? 18? Now I could fight in a war. Perhaps after I turned 21? Now I could drink beer. (Isn't that a bit backassward?) 25? This felt like a transition into adulthood. We were finally out of college and trudging through the workplace. 30? This felt like the entrance into parenthood. After all, society seems to dedicate the 30's to raising your babies and adolescents. It seems like the 40's will be when we are forced to live through all of the teenage angst again through our children. Gee, won't that be a blast!

So here I am at 33. But I am not really feeling anything. It's just another age. I feel fully entrenched on the parenthood path. I have two wonderful boys. One five years old and getting ready for kindergarten. How can he be such a big boy already! One 16 months old and a bundle of energy. He is going to be a blast to grow up with. I have one husband who works a lot and is exhausted but still the best partner ever. We have a house that is truly a home. We are truly a family.

I look at a snapshot from our first summer together. 1990. Yep, we were 16! We were babies. There was such joy and innocence. The joy is still here but it is tempered by a loss of innocence. What strikes me is that we met when we were 16. We have now been together for 17 years. We have been together longer than I existed without him. He is truly my right arm and we are in this together!

I look at our wedding picture. I can't help but smile. We got married in Vegas. We tried the whole hometown church wedding but that just wasn't us. We could care less what flowers graced the aisle and felt it wasteful to expect our family and friends to spend $100 on a dress/tux that they would never use again. After about a month of planning we said forget it. We'd been together for 8 years already. The wedding guests knew each other. We are not formal people. Why spend the money on a formal affair. Let's just have fun and mark the beginning of our "formal" life together. Our religious belief is that God would show up no matter where we planned the celebration. So we picked a chapel in Vegas and we picked a date. We invited all our family to join us for a vacation. 40 people came. 38 from hubbies side and 2 from mine. (But don't get me started on how that felt.)

Now before you think how crazy it is to honeymoon with 40 relatives, you can relax. We spent the money we would would have spent on a wedding and treated ourselves to the honeymoon of a lifetime! We left the day after the wedding and went on to Kauai. We had an amazing time! We left our family partying in Vegas with Elvis and we spent the next week on a sandy beach sipping mango margaritas!

So anyway, back to my birthday reflections. I look at these pictures and I see such youthful innocence. I really want some of that back. I am so cynical these days. I don't like who I have become in those respects. There are days that I feel like I'd like to move my family to a cave in Antarctica. I wouldn't have to deal with the politics there, right?

Speaking of reflections, the face looking back at me in the mirror can't possibly be mine. First off, it is too round. I would never let my face get that round. Secondly, didn't I have brown hair? What are all those gray things doing there! I am only 33! 33 year olds shouldn't have to color their hair! It should still be an option, right? (BIG sigh)

Well, I look at my first 32 years and I reflect that I have come a long way. My childhood aspiration was to find a loving man and surround myself with family. I always longed for the love and feeling that comes with a tight knit family. I have succeeded. I always pushed myself academically to prove that I was as smart as everyone else. I assumed that that meant I had to have a glamorous career. I now have a masters degree that I don't use. But I do use that brain to figure out how to reach my autistic child--and we would all agree that a degree does not assure that that will happen! He is doing well (although I credit his hard work more than mine). But the point being that I am intellectually challenged and better rewarded here at home than I would ever be at any position in Corporate America! My 16 year old self would have never imagined that my 33 year old self would be a stay at home mom. My 16 year old self would have probably thought I had sold out on our dream. She would be wrong. I am living our dream.

I look at that overweight, graying lady in the mirror and I am still proud of her. She has found a beautiful life and she is happy (when she lets herself realize it). She really needs to slow down a little bit and enjoy the moments more. Perhaps when she does that she will find time to take better care of herself (and her face will become less round and she'll have time to color the grey out of her hair).

Either way, it has been an interesting journey. Life has provided some interesting obstacles and some amazing sights along the way. Am I where I expected to be at this point in my life? Yes! I am happy and that is all I expected. However, I am going to devote this next year to showing it more often!

Why I blog...a game of tag

2007-03-12T06:42:00.000-07:00

My Aussie friend, Em, tagged me. I am to devise an answer as to why I blog. Here it goes...

1. My own personal therapy. I have thoughts continually swirling in my head. Blogging gives them a life form and often closure. Otherwise they would continue to haunt my sleep. I occasionally try elaborating them to my husband but this tends to overwhelm him. His usual response is an incredulous, "You need to relax and shut your brain off once in awhile!". I wish I could!

2. Blogs are my support group. I have tried the local support group route. In fact, our first year AD (after diagnosis) I went to a wonderful support group. It was like going home. There were about 10-15 moms there and we really got to share life's ups and downs once a month. Then the group combined with another organization and the camaraderie went away. Most of the "regulars" faded away. (It is kind of sad because I miss hearing about their kids!) But I have found that blogging builds that same camaraderie. Plus, I get to know even more about the day to day lives of the blogging families. Best of all, I can log on at 1am if that is when I get a moment for myself!

3. Perhaps I have an addiction to the computer. I spent my previous professional life tied to a computer and this time at the keyboard takes me back to that "Look at me, I am an important corporate peon" time in my life. Maybe? Perhaps it gives me a feeling like there is more to my life than washing clothes, dishes, and kids. I know that my pulse picks up when I hear the little chime letting me know that I have received an email. I think this link to the outside world helps me feel less isolated at home. I love my kids but never in my wildest dreams did I ever expect to be a stay at home mom. I didn't think I had it in me!

4. Creating a journal of our lives. I already find myself drawn to look back over my entries of the previous months. This is perhaps my best therapy and source of motivation. Depending on my emotion of the day I can usually find a previous post that can help balance me out. These emotions are cyclical and I find that whether I need a reality check or an energy boost I can usually find an event to spur me along. Sometimes I just need a reminder about how amazing my children are and how far we have come in the autism journey.

5. I've already mentioned getting help but I also hope to help others. I am no expert...but my hope would be that our story can help others. I lurked for quite awhile at several blogs and found great strength from them. We spend so much of our time home with our challenging kids and we start to feel alone in this big bad world. It can get quite overwhelming! Blogs remind me that I am not alone! All of my cyber friends have been there and done that and I know that I can learn from each of you. I only hope to return the favor.

Our children are all so different yet so much the same. This is why I started loading some of the idiom resources I have recently made for JP. I spend so much time creating teaching materials for him and it feels sad that we just file it away. I know so many other families could use the resources as well. Unfortunately, most of our home program stuff can't be loaded on the site but I plan to share whatever I can. My motto is..."why should us families have to keep re-inventing the wheel?"

I know many families live in small communities and autism resources are minimal. That is why the Internet is my best resource. It has made the world a smaller place. It has made living in one of the US states with the worst disability services less painful. I have a few "professionals" helping us navigate the autism world but I consider the experiences of fellow special needs families to be perhaps be the best guidance out there! After all, the best advice comes from those who are there in the trenches with you!

So following the rules of the game...I have to tag 3 of my friends and ask they why they blog.

How about it ...Mom to JBG at Hoop Dee Doo and PDD, and Kal at Autism Twins . I find it fascinating how both of you both navigate life with twins! You have my respect!!!

And I'd also like to tag my friend "who laughs in the face of adversity" at For What it is worth although I think it is pretty evident why you blog. Please know that I am continually amazed at your grace in the line of fire! I can't help but ask you, "What else?" Please look both ways every time you cross the street and watch out for lightning!

Happy Feet

2007-03-11T20:21:00.000-07:00

JP was at his recreational therapy camp on Saturday. They were preparing to go swimming. He had finished dressing and was waiting for the others to get ready. Unfortunately he was waiting too close to the door! His toe got caught under the door when one of his peers came out of the locker room.

Here is what it looks like today.The nail is coming off but we haven't been able to urge it along much. We tried to just lounge around and be "couch potatoes" this weekend but he continuously wanted to be up moving.

I kept asking him if it hurt. His standard response was, "No, it's happy." He wouldn't even acknowledge the hurt when we would wiggle the nail! And I know it hurt because he looked like he might pass out!

I don't know how I'm going to dress his "happy feet" tomorrow for school! Fortunately it is supposed to be in the 60s and almost all of the snow has melted.

Eye contact

2007-03-10T11:09:00.000-08:00

I take a lot of pictures of the boys.

This is one thing that I have found helpful as I retrace JP's development. You see, I have pictures of just about every skill or even every breath he has taken. I know he had specific skills at 12 months...at 15 months...at 2 years. I know that T stood on his own for the first time on August 22. I know this because I have about 20 pictures chronicling the event.

Somewhere in the second year of JP's life my pictures just didn't seem to ever turn out as well. I told myself that it was the few seconds delay on the camera. I could never catch him in the moment. He was too quick! The smile was there but by the time the shutter captured the moment, the moment was gone. He is a happy guy with a beautiful smile but still today we rarely get pictures of that smile.

His pictures have him staring off to the side or making some odd facial guesture as he tries his hardest to look at the camera. It is as though he has to contort his face to make it happen. I have tried to sneak up on him for the pictures. And I must state for the record that he loves having his picture taken. He will pose for me anytime anywhere. But he can't look into the camera.

I marveled at this phenomena as I sorted through the pictures this past month. Here is a collection of eyes. See if you can pick out the eyes of the little boy with Autism. It is said that the eyes are the window to the soul and both of my little men have beautiful souls. I only regret that the oldest has such a hard time letting us peek in his window.
*T's eyes are in the rectangles with a black outline. JP's rectangles have fuzzy edges.

Conversation snippets

2007-03-07T07:40:00.001-08:00

Conversations overhead amidst the chaos...
----------

MOM: JP, we have to get ready!

JP: What do we did today? Do we have a mission?

MOM: We have OT2 but we don't have speech today. Ms. Tricia is sick so Mommy planned a special mission for us! We are going to Walmart!

JP: Oh, that is a wonderful idea! Good thinking, Mommy!

(OT2= he has attended Occupation Therapy at 3 different sites. For the past 4 months we have gone to the "OT2" location but he still requires that we call it OT2. I think they will always be known as OT1, OT2 and OT3. We sometimes have to clarify our Walmart as well. There are two nearby. Our usual store is "Same Walmart" and the other one is "Different Walmart".)
-----------

(JP wants to watch a movie)

MOM: If you help me color this picture, I might let you watch a movie.

JP: I can't. I want to catch up with my father. (What Buzz Lightyear says to the gang at the end of his Star Command movie. This is after he finds out the evil emperor (Zurg) is actually his father!)

... (couple hours later)

DAD: JP, time for your bath.

JP: I can't. I want to catch up with my mommy.

-----------

(JP eating breakfast)

MOM: Better hurry up and eat your toast. Fred will be here soon to pick you up in the Mack Truck. (This is utter nonsense...he doesn't know Fred and Mack drives Lightning McQueen)

JP: No, Mrs. Becky will be here soon to pick me up in the school van.

MOM: Oh, you are right. I get confused. You are such a smart cookie!

JP: No, I am a couch potato!

(Since this posting in early Febrary, we have been working on various idioms. I am logging them in the "English 101" section on the bottom of my blog. In some cases I have had to create a visual to help JP. I have posted those out into cyberspace for your consumption. All images are directly off the web so I should provide credit to Google images. The way I see it, if anyone else can use them then do so! Why should we all have to reinvent the wheel?)

Apparently they don't learn!

2007-03-05T20:37:00.000-08:00

Okay. Just a quick note. I am crazy angry right now. I have been thinking about the little boy in Hawaii and how confused he must be after being arrested and charged with Assault. He IS ONLY 6 and he IS AUTISTIC! Tell me, who in this story should "know better" the autistic child or the school?

Earlier tonight I mentioned this story to some other families at a support group meeting. They hadn't heard about it so I told them I would email a link. As I mentioned in my earlier post, I stumbled on it while visiting my fellow blogger, MommyGuilt.

Well, I tried doing a Google search to see if there were any updates on this case. Truthfully, I didn't find much BUT I did find this!!!! The dates aren't the same and the mother names are different. I'm no investigative journalist but it appears to be two different cases. One is listed as the Ho'okena School in the city of Kailua-Kona and the other mentions a Aikahi Elementary School in Kailua. This doesn't appear to be the same story but it sure looks like a repeat occurrence in the same local area!

Suit over boy's arrest is settled for $50,000

By Leila Fujimori

The state will pay $50,000 to settle a lawsuit alleging an autistic boy was arrested without reasonable cause on his seventh birthday last year after he hit an educational aide at a Kailua school.

As part of the deal, the Department of Education also agreed to conduct an internal investigation to prevent similar incidents from happening.

On Nov. 8 the Aikahi Elementary School student got frustrated and upset because he could not tie his shoelaces, and began waving his arms, family attorney Eric Seitz said yesterday.

When the special-education aide intervened, the child struck her with his hand, Seitz said. The lawsuit said the child has a history of aggressive behavior, with tendencies of biting, kicking and hitting due to his condition.

There is a written plan specifically for the child so the teacher or aide can control episodes of kicking, hitting, biting and other aggressive conduct due to his disability, according to Seitz.

The boy's mother, Raina Hockenberry, sued the aide, a supervising teacher, the principal and vice principal of Aikahi Elementary, the city and the policeman who arrested the child.

The suit contended that the boy struck the aide because of his condition, that he was unreasonably and unlawfully detained and that a special-education supervisor failed to properly advise school officials.

DOE spokeswoman Sandy Goya said, "The department is reviewing its current practices and procedures for our employees in terms of the appropriate response to a child who is acting out."

She said the department will provide training for employees to consider the child's age, behavior and other factors.

Police arrived at the school Nov. 9, arrested the child for suspicion of felony assault and took him to the Kailua station, where he was released to his mother 45 minutes later.

The complaint said school officials suspended the student Nov. 10 and told his mother the school would no longer provide free and appropriate education to the child.

The $50,000 cash settlement from the department will be divided, half to Hockenberry to be used in part for attorneys' costs and fees, and half into an annuity for the child's college education, accruing to about $45,000 when the child turns 18.

The boy has transferred to another school, Seitz said. He said his client is close to settling with the Honolulu Police Department.

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Here is one of my favorite parts...

"As part of the deal, the Department of Education also agreed to conduct an internal investigation to prevent similar incidents from happening."

I hope this second family gets a lot more than a $50,000 settlement! Perhaps by handing out money to every child they arrest (rather than educate), the school district will realize it is more efficient to train their staff!

But then, if they can't learn from their mistakes how can we expect them to teach?