Heart of the Matter

King charles spaniel

Okay. That title seems a bit strange to me, but it really seems to describe how I feel today, this week.

My oldest, more affected, son started Kindergarten this school year. We’re in the middle of week #3 and I’m wondering how NT parents do this. And when I say ‘this’, I’m not talking about parenting, or raising a child with Autism, but how they deal with school personnel.

I’m happy to announce that I’ve joined both my boys’ schools’ PTAs. I’m even being named the VP chair of one committee for one school. I’ve done what I can to get awareness out about Autism, not only in my kids, but myself. I’ve started really pushing my therapy goals, especially those of not being stepped on. I’ve even gone to some Asperger’s adults’ Support Groups, though didn’t find them terribly fulfilling.

This week though, I’ve been thrown a curve ball. Despite all I’m doing to be involved, all my attempts at awareness, everything I’ve done for myself and my kids, my son is regressing. First two weeks of school, he had some issues with transitions. Not a big deal, we all expected it. He was assigned an aide even to help him with this. This week? His transitions have gotten much worse. He has been punished two days in a row by removal of his recess time. He’s been running away from his aide, teacher, and other personnel.

I’m doing what I can. I wanted to shadow him tomorrow, but that attempt is being thwarted by my own mother. I’m getting his IEP tomorrow so I can go over the specifics of it. I have told his SpEd teacher, who doesn’t have any control over the majority of his day, that we need to do a FBA (functional behavior assessment) so that they can put a BIP (behavior intervention plan) in place. Though, I don’t think she 100% agrees with me that this is needed. This is not the only thing that’s happened to him. He had a bad day last week too, where I was told I should send him with a water bottle because he “kept getting up to get a drink of water.” By the description, I knew he was perservating, not thirsty. I told his teacher, but she still insisted on the water bottle. They didn’t give him his Disney Cars school supplies either, which I told them they needed to as a re-inforcer.

I’ve done what I can to help him to the best of my ability. I’ve tried to be nice, and cordial, and help the school as well. Now I’m going to have to put a foot down because my son will not slip through the cracks. I refuse to let that happen. But how, I ask? How do NT parents do this and not crumble to pieces? When I know so much of what he’s going through? And have given them so much insight? And I do everything for awareness? How is this the end result? Or not the end result, but the beginning result?

This has been a heart breaking week. And we’re only at Wednesday. And we’re not even a month into school. And we are already fighting to help him just stay afloat. It’s a sad day, and the heart of the matter when it comes to all Autistic students. Disabled students. Disabled people. Acceptance, Awareness, and Accessibility.

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