Forwarding address

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

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

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

A Moment in Time...

JP

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

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

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

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?

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

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

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

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

A Moment in Time...

JP

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

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

**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

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.



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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

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!