September – Back to School & OT Assessment

Seth did go for that meeting with the OT up at the hospital back in September. It was the most that our public health insurance could offer for a child his age (he is only 6!) they only cover OT/PT for kids 5 and under. :O But they were nice enough to fit us in to do an assessment.

The lady was very nice and we seem to luck out sometimes because she is one of the OT’s that specialize with ASD children and helping school implement OT for them in the school to help with their needs. She was just filling in for someone that one day! It was SO nice to chat with someone who really seems to “get” kids like Seth.

She was so good at engaging him and making the assessment interesting for him. I was quite surprised to see some of the things that he can do! Like she had a peg board and he filled it all in, she would ask him if he could take away pegs to make a square and he could :) He has so much potential and it make me anxious in wanting to help release it all.

So she talked about some of her findings and through various things I have already read and learned (and some great things I learned from some friends on an ASD message board) I knew what she was all taking about. Because I seemed so “knowledgeable” she asked me if I was a teacher LOL! I just said no I just read A LOT (especially when it is something that affects my kid). She praised me for having a clue and I was a little sad wondering how little some parents are informed concerning their ASD children. It does take a lot of work and time to learn things and it sucks that it isn’t easy for some people to find those resources.

Well some things that she found out were he has some proprioception and vestibular issues. There was so much I just chalked up to being “Seth” and never really realized these are actual issues. She also found out that he has poor gross motor skills and very poor fine (hence the handwriting difficulties). I knew all this but it was nice to see I wasn’t imagining things. What I did learn is that for the fine motor skills to be enhanced we needed to work on the gross motor first. She gave us some exercises (I will post them in another post) and a handout which she took the time to write out a quick review on some of the things we could do to help and her findings. We did get an official report that I filed with the school a few weeks later too!

The biggest thing I learned from all this even though I probably knew before hand was that because ASD is a neurological condition it can affect many parts of the body. I think I knew this but never saw it demonstrated in front of me or put the two together as a cause and effect sort of thing. He has gross and motor issues because he has a neurological disorder. It really helped put things in perspective but also make me a little sad to finally realize how much his life is affected and will forever be affected by this. I know he will come a long way but it just made me realize how far we still need to go.

So with the start of September it also brought the start of school, Grade one. That first day I dropped him off for a full day was one of the longest of my life! I was so scared they would lose him or he would run off at recess. I didn’t know how he would handle sitting at a desk or all the new children. Like always he surprised me, it seemed to go okay. As time went on thought I realized how much more he was stimming when he got home and his anxiety levels were much higher. We could no longer take him out to the store when before he use to tolerate it quite well (took so long to get to that point though!). I finally realized that he was being very socially and sensory overloaded. Every morning he would say he wasn’t going to school. He would say he was sick, hurt or tired. It is hard to “force” him to go each day when I can only imagine what it is like for him.

The frustrating part is his shared aide says he seems to be doing fine. He is well behaved. But I don’t think they can recognize overload. They think he is “fine” because he isn’t melting down or acting up. But he is still shutting down. I mentioned to his teacher when he is starting into space, chewing or going to the washroom a lot (to play in the sink) he is spent! But because he isn’t causing trouble they think he is fine. Well I tried to get it through to her that he has a COMMUNICATION disability. Just because he is smiling and seems happy it doesn’t always mean that is the case! So I am still trying to work with the school to set him up an environment he can go to for just a bit when he is overwhelmed.

September also brought Rob and I getting married, finally after 8 years of being together! Seth had a BLAST at the “party”. He danced up a storm and even ordered himself water at the bar! LOL! He had so much fun and still talks about us dancing together and that meant we loved each other very much. He was the only one of the kids to make it till 10:30pm when the sitter took them back to my mom’s place. I really thought this day may test his limits but with a lot of planning ahead he did really really great :) Even though we waited so long to get married it was really nice and special to have the kids there to witness how much their parents loved each other. It was so great to have each of them a part of the day.