Wednesday, September 3, 2014

Sebastian's First Day Of 1st Grade & Judah Moments

Judah had a pretty damn amazing day today!!! Here's a "blurb" his aide wrote.

Judah decided to watch a "Your Baby Can Read" video today and we saw something amazing. He responded to the video and repeated the words!! We decided to watch it again this afternoon, and he responded even more and better than the last time, so I took a short video. So excited by his progress!!

I saw him watch it the first time. He was focused, repeating words, doing the actions when they were said but before he saw them on the screen - "arms up", "hands down", etc. Those are actually both in his Star program. Hands down would also be considered a safety instruction - responding appropriately to those is written into one of his IFSP goals. So those I know he's heard for some time, but he hasn't ever done them with ease, like I saw him do today. I'm pretty sure he knows what all of these instructions & words mean but hasn't been able to physically and/or verbally respond to them. His body won't let him - this is something you'll read often about autism. Even though the aide & I were ecstatic beyond years, today had to have been even MORE exciting for Judah. He probably also got to experience some relief today, which he deserves a thousand times over. Some weight was lifted from his shoulders today. But unlike most of us, he'll have to work unbelievably hard to keep his progress. He'll do this work EVERY SINGLE DAY. There's no way anyone could not have admiration for kids on the spectrum. They are handed mountains of frustration that they will have to work through their entire lives.. and they know this, and they keep going.

Judah responded to questions today with answers I'd never heard him say. He repeated so much. He just had another one of those AMAZING days.

Judah kept eye contact with our massage trainer for a long time today, smiling & chatting, pulling her closer to him as we did the massage. When we were done with his massage, he got up and one-by-one hugged & kissed everyone that had just participated in his massage (Scott, the trainer & myself). Then he went up to his aide and said, "K, let's go!" He knew it was time for them to go to the park. They had actually been leaving when Scott had arrived & reminded us all that Judah had a massage scheduled today. Having plans to do things he enjoys suddenly changed is typically a guaranteed big meltdown. He was a little upset but understood what we were telling him - and just waited with us for the trainer to get there. I didn't even have the mat out (the only thing we have to get out for massage). He just knew what was happening.

I am just baffled at how we got such the perfect aide for Judah. She brings in the positivity we all need, inspiration & is genuinely eager to help Judah. They are very connected now. He even waits for her to get here in the morning! When he watched the video this morning he signed "cat" when he heard the man say, "cat". There was no sign language in this video. He had learned it from her - he had learned it & never shown us, which pushes me even more to believe that he knows so much, but it's just never easy to get it out. We are so fortunate to have this specific aide for Judah, so lucky.

Sebastian had his first day of 1st grade today! He was nervous going in, no doubt about that. But this was also the first time he hasn't cried & gone into a panic when I leave him on a first day of school! Scott stayed home with the kids so I could go in with Sebastian. The parking was unreal. The school has more kids this year - because of the new English classes (it's been all dual-language classrooms up until today). And plus it was the first day - always tons of parents & grandparents flocking to the classrooms to help their kid/grandkid find a hook for their backpack & their name tag on the table, then lingering for a good ten minutes to make sure their kid/grandkid is okay, taking many more pictures than necessary which just embarrasses the kid or adds to their jitters (it's idiotic really - I totally do it).

When we got there I asked at the front desk about Sebastian's lunch. I had forgotten to grab his lunch from the fridge at home (mother of the year, that's me!). I had deposited money in his online lunch account on Monday but it was still showing a zero balance this morning. I spoke with 4 different staff about this (2 of them cafeteria workers). Each one reassured me that he would get a lunch. The cafeteria lady walked us through the entire process - showed us the lunch cards, showed us where his teacher's name was on the chart, showed us where the line would be, etc. This was great. I wish I had thought of it! We were basically just pointed in that direction by a stranger with functioning common sense. Lunch was Sebastian's biggest concern. But now we were able to practice the lunch experience before he even started class! Turns out, he did great with lunch today. They paired the kids with an older kid today to walk them through the process.

At pick-up there was again the crazy parking, this time accompanied with an anthill of parents in front of the school. Willow yelled, "Bastian!!" a few times as we approached the school. She really wanted to get on one of the school buses. She got upset when I informed her that she wouldn't be able to. She was upset throughout the day after she saw the pictures of Sebastian at school on the computer. She would say, "Willow go to school!!!"

Willow and I made our way through the crowd in front of the school. Every time she saw a child her size she would tell me it was her, "fwend". When the doors opened the kids sputtered out.. and then came the FLOOD. I saw Sebastian's old teacher yelling for the 1st graders to line up where she was. Maybe 10 kids lined up for her (there are likely 120 1st graders or more at this school). FINALLY I spotted Sebastian. He was by the door (he must have just come out). He was panicked - it was easy to tell. He was quickly going from panic to being terrified & starting to cry. I yelled his name as loud as I could without sounding like I was screaming to warn of a gunman or something, but I wanted to scream that loud! He couldn't hear me. Willow & I struggled through the swarm of kids and backpacks to get to him. I found him with both of his shoes untied standing with his back against the school telling me over and over, "I just get confused. I just got so confused. I was confused. I just get confused." while shaking his head & beginning to cry. Oh my god that killed me. We made our way through the crowd again - Willow refused to hold my hand. I told her that I didn't want to lose her & Sebastian immediately turned around and grabbed her hand. Of course she loved that & wanted him to do that the rest of the day, but he was doing it because he saw the reality of losing her as very, very real. (which it wasn't, just so you know).

There was nothing safe about pick-up. Kids everywhere, adults everywhere. I saw my friend because I heard her screaming her son's name over and over. That's pretty much all you could do, yell really loud and hope that your kid saw you. When I walked in her direction we made eye contact & she yelled, "How did it go??" Then she looked at Sebastian & gave me the look of, "Oh yikes", with the corner of her bottom lip going down to her chin line & her eyebrows raised. We weren't anywhere near close enough to do more than give looks or try to scream a conversation. I shrugged my shoulders, with my eyebrows up & eyes wide.. letting her know, "I have no idea & I don't know what to do".

Sebastian told me on the way home that he did like his class & went on about how he was able to "order" his food. He sat with friends at lunch & also got to play on the playground - hallelujah! They are letting the kids out to run! That should  be law in classrooms. His Kinder class didn't get out to the playground very often at all - their excuse being that class only ran for a half a day and they just didn't have the time for that.

Judah had a big poop.

Meds missed - multi-vitamin, fish oil, beta, skin rash cream (unneeded), iron-up & powder b-6. He had 2 doses of Miralax.


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