36 days of 24/7 with Riley and I feel like maybe all that progress I thought had happened didn't really happen at all. Maybe it was just that she was at school from 9-3 each day and I was getting a break, so my outlook was better.
I am in a serious funk and yes I feel sorry for myself and I feel sorry for my kid. And my other kid. And my husband.
All my friends can send their kids off to day camp to keep them occupied and happy for at least some of the summer. Riley can't function independently at day camp, and I don't trust the 20 year old counselors to know anything about dealing with her for an extended period of time. We've tried these things and we get kids that assume she's being willful or bratty. Tell me counselors, what kind of training have you had to work with a child specifically like Riley? Not much, let me tell you.
The "autism" camps would seem like a better fit, but they really aren't. Riley does not do that well with her own kind. The autistic behaviors of her high functioning peers, the unpredictability, the loudness (oy if somene else screams) she comes home looking shell-shocked and terrorized. And for anyone who thinks I'm being over-protective, do you know what it's like to pick up a child at school with blood vessels broken in her eyes from crying so hard all day? Fuck that.
We did a week of sculpting class. It's drop-off for an hour and a half. She did beautiful work, but I had to stay. She could not handle it.
Last night left me nit-picking Todd. "Why have you never even once read a research study on autism. Why have you not studied every treatment? Why is every decision for this child on my shoulders?"
"I feel like you are always ten books ahead of me, no way I can keep up," was his reply.
Earlier, I'd brought Riley to Seth's second karate class. Todd is working evenings so there are some nights I'll have to bring her. She plugged her ears but it wasn't enough, and the loud yells rattled her nervous system to the point of her crying loudy, disrupting the class. A teacher came over to ask about her. Seth, stood on the line, trying to be brave, checking my face for reassurance. I rocked her, soothing her, running my hand over her hair, telling Seth with my eyes, "It's okay buddy, keep going, you're doing great."
Riley's body did the big heavy jags that go with crying, and she whispered, "It's not fair. It doesn't bother anyone else."
Usually I tell her it's just one of her challenges and remind her of all her gifts but last night I just agreed with her,
"You're right baby, it isn't fair. I'm so sorry."
Later, after the fight, it was me with my head in Todd's lap. This time it was my body with the big heavy jags. Todd's fingers through my hair.
My child suffers and I can't figure it out.
She is so vulnerable and I can't protect her.
I can't take away her pain.
Click here for amounts of thimerisol currently in childhood vaccines. Print it off and take it to your pediatrician and check labels together for any vaccines you are planning to allow. No amount of mercury has ever been proven safe for living tissue.