Parents of disabled children have to make a lot of choices. Choices like whether to take your kids out to the playground or to a Strong Start class, or whether to attempt preschool with your child who is atypical, are serious, heavy questions that require much consideration. It’s a scary thing, to be that parent, to be watching your child like a hawk, to see if they are going to bolt, racing across the grass, straight towards the road, eyes on some speck in the sky or a truck in a parking lot down the road. To watch them, waiting for that moment when they shove another child who didn’t realize they were in the way of an inexplicable game that is known only to one, or for those tears to fall when that nice orderly lineup of pebbles is upset when some toddler meanders through it. You watch, to see if your child notices others, if they want to join in a game, if they need space, quiet, shade, a safe refuge, if they are becoming ashamed or nervous, or if they are courageous and actually enjoying themselves.
And on top of that, you wonder about the other parents. What will they think when my son runs away screaming. Will they think I can’t control him? I can’t. Will they even realize I’m his parent? What will they say when he pushes their princess off the play structure? Clearly, that’s not okay, but what do they think? What should I say when my friends, kindly, say, gee, he sure does keep you busy. Or worse, when a strange dad snaps at me: “Teach him some manners!”
These things have all happened to me with Jake. Every one of them.
But not today. Today I took all three of my kids to the playground. They had a great time. Jake went down the slide three times with Penny, holding her hand, side-by-side. They both loved it. He climbed the structure and watched out for everyone else. He always knew exactly where Penny and Aiden were. He watched some older kids come and start a game of grounders. I could see that he really wanted to join in, but he didn’t say anything to them. After a while of playing around them, he moved on and played with his almost two-year-old sister. It was a great day.
I watched. The same as always.
I saw another little boy come up to the playground with his dad. He was wearing a teddy bear back-pack/leash that I would totally have judged as terrible before I had children. He seemed to like it. Once they got up to the playground his dad unhooked the leash and off he went. On tiptoe. Through the gravel. Then once he reached the shade, he just sat down and started playing with the pebbles. None of the other kids gave him a second glance. No one came over and said hi. No one was at all bothered by him.
I smiled at his dad.
My son is almost seven. This little boy looked to be about three. I wanted to go say something. Like, hi. Looks like you are doing awesome. I’m so glad you brought your son to the playground. Would you like me to introduce him to Aiden and Jake?
I could not figure out what to say without sounding or feeling totally awkward. But I have been thinking about it all day since.
The internet is really wonderful. Without it I would feel quite isolated, I think, in the autism world. I have read extensively online and found it incredibly valuable. However, the lightning fast spread of ideas has also been hurtful. Recently there have been terrible tragedies where young children have died or been injured in incredibly unusual circumstances, and the reaction online has been so harsh, judgmental, and hateful. There have been neighbours who have called in authorities when children are playing in their own backyard. People are so quick to turn on each other, to call out the faults in each other’s parenting. It has led to a culture of fear in parenting. It has led to second-guessing and doubting my instincts.
I don’t even know how to say hi to a stranger in a park.
We have this ideal of what parenting should look like. What children should look like and play like. We have averages and standards and graphs and handouts suggesting strategies. It all adds up to feelings of inadequacy and striving to meet that ideal of normal.
And then something comes along and stirs it all up like an autism diagnosis in the family.
All of the research and money and support says: here are ways to help your autistic child strive to appear normal. Best results if you do all the work yourself. Best results if you put in 40 or more hours a week before they reach age five. Then, you might be able to pass off your child as typical by the time they reach high school. You might be able to hope and dream for them to achieve a position on a sports team, or a date for the prom. Maybe one day they might get employment. The whole world will cheer for them then when you share it online. Don’t think past that.
This is very harmful thinking.
It creates impossible standards. Which lead to failure, which leads to depression, self-loathing, and anxiety. And that is just thinking selfishly about the parent. On a child with autism, this creates a pressure to conform. A pressure to live up to the insane effort mom and dad are putting in, to not let us down, to learn to pass as normal so that we can be proud of you.
As if losing what makes you autistic is what you need to do to be loved.
Now, I know those ideas seem exaggerated and that regular people think that they don’t actually do that, they are not actually perpetuating that, and being unique and individual is okay. But what about that dad who snapped at me at the playground years ago? What about my friends, who don’t have any idea what to say or do with me when I “meet” them at a playground and spend an hour chasing my son away from the road?
It’s complicated. While I get that safety is the most important, we need to change the way we respond to people. We need to change the way we create safe places. We need to change the way we react to other people and their kids. We need to fence our playgrounds already.
I want to teach my kids to reach out to and play with other kids who appear different. I really wish I had said something to them today, like, look Aiden. That little boy likes playing with rocks. Why don’t you go play with him? I want to teach my kids to notice when someone clearly wishes to join in the game. So kids like Jake don’t have to spend 15 minutes trying to figure out how to get involved only to give up.
As a response to the racial tensions in the USA, I saw a meme of two children playing. One was white and one black, and it read, Children will play with anyone until someone tells them not to. The truth of it struck me deeply, but I can see how it applies not only to racism but to ableism as well. Somehow, we teach our children to judge, to fear, and to avoid that which is different from themselves. They learn it from their parents and other adults.
Here in our house we are working on trying to avoid calling each other names. Jake recently has called Aiden, smelly, stupid, fat, dumb, and various other insults. We are really trying to explain that those names mean things that are not okay. That we don’t think about other people in those negative terms. If we are angry, we can say, I’m mad at you! Or I don’t want to play! When I was little I remember using the r-word regularly. Times have changed, and I feel that to say someone is dumb or stupid is just about as terrible. My kids are going to learn that intelligence is varied, people are varied, abilities are varied, and that everyone is valuable and worthy of friendship.