Hearing no.

I'm pretty sure one of the most depressing parts about parenting a child with significant disabilities is hearing the word "no" with unbelievable frequency. No, he cannot do that. No, he is not welcome here. No, your insurance doesn't cover that. There are NO available slots. That service is NOT available. I know this is a program for children with disabilities but yours has too much need. We do not have funds. Or there is the yes that is really a no: Yes, your child can be in this program and that will cost you $$$$$ which you cannot and never will be able to afford. Before B. I don't think I ever heard the word no. Pretty much I set goals, worked hard, then I achieved my goal. Autism doesn't roll like that.

I've heard the word no too much lately. Which brings complete frustration. I wish I didn't let people have so much power over my feelings like that. It's one thing to be frustrated with my child's pace and difficulties, where I can blame the disability. But when I advocate for him and fail to get him what he needs, that's all on me, that's MY failure.

Endings...

A very very long school year ends this week.

The girl child is graduating from elementary school and after much deliberation and many pro/con lists (and many objections from said child) she will be attending middle school at our church's school, starting in the fall. More about that some other time....

The middle is doing well, growing in his own ways, made lots of good friends this year.

And then there is B. Summer really can't come fast enough for him. He probably just had the most stressful school year yet. Some of it could be because he's just more aware now that he's older, because some of those preschool years certainly would have had me running for the hills. This year I learned that he can have a pretty good school team but still have a miserable year. How, you might ask? Trying spending a 8 hour days (including 2 excessively long bus rides) with 5 boys with severe autism, all the while having autism yourself. Yeah, so that's why.

Right in the new semester, B was pinching and pulling hair many many times per day. Mind you, this is a kid who was never aggressive before starting kindergarten. He could certainly throw a tantrum that would bring everyone to their knees and the OCD and the eloping and... he had a lot of behavioral issues. But never was he aggressive. But by January, I could no longer trust him within 3 feet of another child, including my own.

I guess the school took all the right steps. They observed, took data, wrote a behavior plan. The sad reality is: That behavior worked for him. We can do lots of things to reduce it whether it be positive reinforcement or some punishments. But it will never be totally gone; it will always be in his bag and he could pull it out at any time. That makes me feel sad. Actually, it's not really sad that I feel, it's more like supremely pissed off, but let's just go with "sad" because it makes me sound less crazy.