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?