Today marks the beginning of Autism Awareness Month, with tomorrow being World Autism Awareness Day. Honestly, the whole thing leaves me feeling conflicted, tired, and a lot like a giant fraud.
I am conflicted because on the one hand, a whole month dedicated to awareness of something that we live as a family every day has to be good right? If it raises more money to help my kids. Or puts pressure on the government to provide more funding for early and appropriate therapies. Or what if it could chip away at the gap in how people who know Maggie treat her vs the way strangers do?
Those are all good things right?
The problem is that I am exhausted.
It sounds like a giant cop-out, I know. And maybe it is. And then I feel guilty about that. But then something started to happen. I began to notice facebook status updates and blog posts from other autism parent bloggers, commenting on how they were dreading this month. I saw talk about how we live this every day, so we are already blindingly aware.
And I felt better.
But I still feel like a fraud. I advocate for my daughters, and I try to do everything possible to get them what they need. But I am not writing letters to the government; I don’t go in and talk to Maggie’s class about autism; I find myself avoiding reading autism blogs; I have the whole “stack o’ guilt” reading pile beside my bed gathering dust; and we haven’t walked in a single autism walk.
It’s not for lack of wanting to do those things. Part of it is a simple lack of time, and making of priorities: dealing with the meltdowns, juggling the therapies, planning the schedules, repairing the constant destruction of our home, keeping Maggie safe, and loving and enjoying my family all come first, with not much time leftover. I think the rest is an act of self-preservation: I feel like my sanity boat is barely floating, and that one more hour a week of thinking about autism is going to be the brick that sinks this ship. It seems unfair that the ones who live with autism have to take on educating everyone else. It’s akin to making a drowning victim carve their own lifeboat.
The other reason that I feel like a fraud is that I just don’t know what to say. I can explain my child to another adult using all kinds of grown-up words and statistics. But lately I have had a lot of children asking questions, and I find myself left with my mouth gaping open instead of being able to form an intelligent (or any) reply.
Possibly it is because kids ask the hard-hitting questions that adults normally keep to themselves. We were at a park this weekend and a 3 year old kept asking his dad “Why her saying that?” about Maggie doing one of her echolalia monologues from Caillou. I told him that she likes Caillou. After she began making some of her louder stimming noises, the boy kept asking for her to stop. I didn’t know what to say, and obviously correcting his grammar or calling him four-eyes wasn’t going to be the way to go. So I just played with Maggie and ignored it all. I keep wanting to educate the public, and these golden opportunites come along and I don’t know what to say.
Or I say something completely inappropriate like I did when Maggie had a level 17 meltdown at the grocery store last weekend and I couldn’t get her out of the store. Apparently yelling “Enjoying the show?” at the gawking bystanders is ‘not constructive.’
Sometimes the only thing I am creating awareness of is the dangers of limiting a mother’s access to sedatives. I wonder what colour lightbulb you use for that?
|This was our first year of wearing blue for World Autism Day 3 years ago. Taking a picture for Autism Awareness is easier than you would think. They’re wearing blue. They have their own agendas. There. Now you’re aware.|