xmas 2013

xmas 2013

Thursday, December 17, 2015

Misunderstood

My heart is breaking. Again. We are having a really tough school year. Something BIG has been happening with B. I don't recognize the version of him that school is seeing. My sweet, infectiously happy lovable little boy spends at least half (from what I can gather) of his time either crying, yelling or freaking out in ways I had never seen until this year. I have been called 6 times in 13 weeks because his behaviors led them to believe he was sick. And he wasn't sick. Just sick of school.

It's so tough to be on the sidelines. I am not there to see what's happening. I can't jump in and clarify or make suggestions like I did with home therapy. With a kid who can't tell me anything about his day, this is tough. Anyone who knows me knows that I'm not sitting back silently. I call meeting after meeting, ask question after question, escalate, complain, likely drive everyone there crazy. And it's not enough. It's not getting better. I don't know what's going on but my suspicion has been that the people working with him just simply do not get him. They don't know what he's capable of and don't know how to motivate him or how to teach him. He's frustrated and he's acting out.

The amount of communication I get from the school is actually pretty good - much more than I got at his first school. I see pictures almost daily and I get a written synopsis. The synopsis is rarely positive but he looks like he's having fun in pictures. I'm trying to let go a little.

Once in a while, I get videos. This is as close as it gets to actually seeing what's going on. There was one a few weeks back where some huge mistakes were being made. Innocent, well-intentioned but just wrong.

Then there was today. I watched a video of him practicing site words and he was clearly saying "I want bus." Not just once. Over and over. "Bus. I want bus." Then, when that didn't work he switched to "me sick. I want bus." He was completely ignored and the professional continued to repeat the site word as if he was just saying the word wrong. Here's a kid who can barely talk and struggles with meaningful communication in the most severe way you can imagine. And he was trying with words to let them know what he wanted. And it got him nowhere.

He IS sick. He has a cold. I wouldn't have wanted them to send him home. I just wish they would have acknowledged that he was communicating and advocating for his needs. This is HUGE. Stop. Take a break. Let him know that you heard him and understood what he was saying. We have spent YEARS trying to get him to say more than 1 word to request something.  And it really wouldn't take much to teach him that talking isn't worthwhile.  It already is his very last resort no matter how much he wants something. Imagine how that must feel. I know how hard that was for him to come up with words to say and they fell on deaf ears.

I've called the principal and the teacher, the teacher's supervisor and the supervisor's supervisor. But I can't take it back. I'm not sure I can even make them understand why this is such a big deal. What's worse is that I can't talk to B and explain it away or make it better like I would with my other son. I can't fix it. I can't take away his constant struggles.  I can't tell him it's going to be okay. I can't make the Autism go away. Believe me, I would if I could.