Thursday, February 13, 2014

Judah Wants A Racetrack!

I just finished making SpongeBob Valentines for nearly half of Sebastian's class. He has been working on very detailed Valentines for his classmates the past two nights. Since he is working so hard on them & getting more creative by the minute, they became quite an undertaking. He used the cards that I bought from Oriental Trading Co. (along with a bunch of other holiday kid crafts). The cards are pure white & each section is a letter. As you open it the card becomes over a foot long and reads L O V E. Unfortunately I didn't buy two packs & there weren't enough for all 30 kids. AND Sebastian decided to use some for family. So about half of his class will receive his very detailed, large, unique Valentine's Day cards. The other half will get the standard fold & seal with a sticker, tiny Valentine's Day card with Sebastian's name written on the back not by him, but by me. Those are SpongeBob. We just didn't have the time. He was up over an hour past his bedtime tonight working on his big cards. Judah took some SpongeBob to school today & handed them out to his teachers & the 3 other kids in class today.

I volunteered in Judah's class today. I was impressed with one of the ladies that I hardly ever talk to. She's also the one who gave Judah a napkin to use out of the trash.. I pretty much wrote her off after that. Today I saw that she is the best aide there, hands down. The routine still isn't fully in place, things got switched around a few times, timers weren't getting set & the kids only did clean-up a couple of times. Judah is shuffled from aide to aide, depending on which aide is in the area that he is supposed to be in at that time. He needs a personal aide. Scott & I have been talking about that & wondering if that would help him. Yes, absolutely. His experience right now is like hanging out with a friend that you really want to connect with, but have to leave in exactly 5 - 15 minutes. This happens over & over all day long. At some point he gave up trying to connect with them, because he knew he was going to leave them shortly. It's kind of like the kid moved from home to home. Judah was very happy that I was there to share his day with him and accompany him throughout the day, playing with him in all of the different areas he went to.

Part of the Star Program is pulling the kid from class & working with them one-on-one. They worked on Judah's goals of responding appropriately to certain directions (mainly safety). Today he did "come here" amazingly. I don't know why we even have that on his IFSP after seeing that. "Hands down" didn't go so well, but there was no explanation, practice, etc. He was basically sat down, they started, he got a few chances & that was that.. move on to your 5 minute friend. His one-on-one was done while kids were in the mobile area (the fun room, Judah's favorite). The one-on-one area is a corner in that room. The teacher said that they are supposed to have the mobile room empty when one-on-one is happening, no kidding!! She said they didn't mean to do that - scheduling confusion most likely. Judah did well, especially given the distraction of kids playing in his favorite room 4 feet away.

A staff offered him pretzels as soon as we started snack. He was given a PECS board with pretzels on it! Ugh! I let her know that he cannot have pretzels. He's the only kid (in a classroom of 6 kids) who can't eat'd think they would remember this?? The teacher came to join us, got him his PECS board & worked with him really well using his non-preferred food. Judah said three sentences while we did snack.. "I want Chex" three times. Directly after that he passed one of his classmates and said, as if he were just seeing him for the first time that day & had not been in class with him all day, "Hi! How are you?" I got excited & announced what he had just done, haha. No response from the staff- they were all busy. I've heard him do this before, but not in quite a while. Sometimes he even shakes hands when he greets people verbally like that - which is so neat to see.

I'll copy & paste the texts I sent to my mom earlier about the bad part of the day. After this part Judah wasn't nearly as happy or social. And it mostly came out, after 2 shampoos & lots of scrubbing. So at bath time he was basically sitting in toxin, completely naked. Scott was not happy about this entire situation.

I was at Judah's bedside today telling him that he might have a surprise on the table for Valentine's Day tomorrow. I mentioned that maybe it would be a toy. I asked him what he would want as a surprise, and he told me! He wants track. So I tried to figure out what train track he was talking about- describing all of the ones I knew. Finally he said, "Speed", which of course meant Lightning McQueen. Ahhh, he wants a RACEtrack. He was tired & probably exhausted from all of my questions. I'm thinking that's why he didn't say a word more. I tried reheeelly hard to figure out what kind of racetrack he wanted. When communication is that clear I will buy that kid anything.

I turned on a movie tonight for Judah & Willow so I could assist Sebastian with his Valentine project gone out of control. Judah immediately ran to his room and closed the door when I started the movie. I went back and asked him if he did that because he didn't want to watch that movie. I asked him if that was "right" and he responded, "Right" He made good eye contact with me through all of that, as if he was hoping hard that I would know what he was feeling. I told him I would turn the movie off. I did & he came right back out.

Judah pooped, was in pain during class probably 4 times, just got worse & worse after we got home. I got out Tylenol, but he wouldn't take it. He was laying on the couch screaming. I carried him to the bathroom hour after hour. Finally this evening he went. It was just as bad as last time. I was in tears. We're going to schedule an appointment with a specialist. His current pediatrician used to work as a GI specialist for kids & she knows autism. We have put a lot of faith in her, and maybe she has told us everything we need to know & do.. but what is happening is not okay, we have to keep looking & keep trying.

Willow sat on the potty tonight & I told her that I needed to potty. She shook her head no and said, "no" (it's so cute). Then she said, "Mommy potty?" and then did the same "no" shaking her head. She thought that was pretty funny. She said so many funny things today, not like cute funny, but seriously funny.. I needed those laughs baby girl, thank you.

Last night I fell apart. Life just gets hard.. we are never doing enough & we can't keep up, ever.

This morning, I was getting ready for my volunteer day at school. This was fascinating to Judah & Willow. They stood beside me & watched me in awe as I put my make-up on in my heart-covered robe with my hair wrapped up on top of my head. They never see Mommy do this, haha.

Judah supplements - Today he took all of the usual plus one dose of Miralax. The usual being fish oil, 2 doses of folinic acid, a probiotic, vitamin D 2000 and 7.5 mL L-carnatine. He started ear drops  Oflaxin OTC 0.3%.

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