“And I didn’t even have to think about it.”
Part of the problem with “disabilities” is that the word immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or can’t talk about their feelings? Or can’t manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the truly crippling disabilities. -Fred Rogers
Last year a friend asked me if it was hard and how I manage and if I ever just want to lose it. “It” being this whole raising a child with autism thing.
Of course it’s hard and of course there are evenings when I collapse on the couch or cry in the bathroom. But isn’t that true for all mothers? How do I manage? About the same as all other mums, I guess. I drink coffee every morning and hide chocolate in the wardrobe. But then she asked another question…
“What’s the hardest part?”
And I didn’t even have to think about it. Other people. When you’re dealing with an invisible special need, strangers don’t know about it. As much as I sometimes want to, we don’t pin a sign to Mareto’s shirt explaining his autism. So other people, particularly strangers, give us a lot of attention in the form of staring, dirty looks, snide under-the-breath comments and just overall judgment.
I can feel it in the store when Mareto’s getting upset and I have to hide in an empty aisle to calm him down. Or when he can’t sit at a table in a restaurant. Or when he blurts out, “Watch out for Diesel 10!” when someone says hello.
But even the people who aren't strangers can be hard. It's not intentional, but unless they've had a lot of experience with autism, most people are largely uninformed.
I get it, because up until two years ago, so were we! So when Mareto licks the wall, or laughs at inappropriate times, or sniffs random items, it can be awkward. The look of shock can sting, and I remember again that this isn't everyone's normal.
These are all my issues, though. Because Mareto is unaware of these reactions, and most of the time they aren't even directed at him. They're directed at me.
One evening my husband, John, looked at me and said, "I feel like people are thinking two things when we're out as a family: your kid is bad and you're bad parents."
That's how it feels sometimes. It feels like people think we're lazy or I'm not doing my job well and if I just tried harder he would behave differently. I felt so guilty when I realised that one of the reasons I was so excited about my other child, Arsema, being potty trained, was that people might now see that we actually are capable of potty training and it isn't laziness that's keeping Mareto in nappy.
But do you know what's even worse?
When you take your kids to the playground and they're having a blast. Your little boy notices a group of older children and runs to play near them. He bends down to pick up a piece of bark and his shirt rides up, exposing the top of his nappy above his pants. And all the little kids start laughing and pointing and saying, "Look! That boy is wearing a nappy!"