My kids have been at VBS (Vacation Bible School for you non-churchy folks) all week. This is the first time I've let my kids attend. One of the reasons
The Hubby and I decided that this year they were attending partly because the boys are now old enough, but mostly because Myriam has done so well in school. She's toilet trained. She's talking to peers. She makes good eye contact and she follows directions (for her teachers not at home). In other words, she appears "normal".
It was all a delusion....
We had a rough start this morning. Myriam was in a "mood". She hit Logan with one of her dolls, one of her hard plastic dolls, upside his face. Needless to say, I spent 20 minutes of the morning pressing an ice pack to Logan's cheek/eye area so I didn't get a shower or a chance to brush my teeth. We still went. I explained to one of the group leaders about the red welt on Logan's cheek and about Myriam's state at home. Now normally Myriam acts out at home and is a perfect child at school, so I wasn't too worried about her at church, but I like to warn people--just in case. And as I expected she was good as gold at church
A dear friend of mine came to talk to me when I went to pick the children up and said that they had assigned a volunteer to Myriam that day, just in case, and that Myriam seemed to enjoy the extra attention (go figure) and that the volunteer (who only has male children) enjoyed loving on a little girl. They of course, told the volunteer that Myriam was autistic and what to do if she because agitated. The volunteer's reaction to her diagnosis was, "Well that explains a lot."
My friend wasn't trying to hurt my feelings by telling me this; I know that. And really she didn't. It just reminded me that autism doesn't go away and that my daughter isn't ever going to appear normal except in the most superficial of ways. I make comments to family and on here that she's doing so much better that most people wouldn't think that she's autistic; it's a delusion. Obviously, people know something is wrong. And all of these therapists and teachers have encouraged my delusion and this infuriates me. I can't be expected to help her if no one is going to be honest--and that includes me.
I also know that I am lashing out. But...
I hate that I want my daughter to be something she's not. I hate that I am reminded daily how far she still has to go. I hate that one innocent comment can make me make me tailspin into despair. I hate that I'm not doing more for her. I hate that I don't know what to do for her. I hate that I'm so scared. I hate that this hurts so much.
I. HATE. AUTISM.