Lauren CasperLast year, a friend asked me if it was hard to manage and if I ever wanted to lose it. “It” being this whole raising a child with autism thing. Of course, it’s hard, and there are evenings I collapse on the couch or cry in the bathroom.
But isn’t that true for all mothers? How do I manage? Again, about the same as all other moms, I guess. I drink coffee every morning and hide chocolate in the sock drawer. But then she asked another question…
“Part of the problem with the word ‘disabilities’ is that it 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 talk about their feelings? Or 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 real disabilities.”
Fred Rogers
“What’s the hardest part?” And I didn’t even have to think about it—other people. When dealing with an invisible special need, strangers don’t know about it. So other people, particularly strangers, sometimes give us attention through staring, dirty looks, snide under-the-breath comments, and 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 ten!” 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 2012, we were too! So when Mareto licks the wall, laughs loudly 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, 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 really how it feels sometimes. 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 realized that one of the reasons I was so excited about my daughter’s potty training was that people might see that we are capable of potty training, and it wasn’t our laziness that kept Mareto in diapers for so long.
But do you know what’s even worse? It’s making me realize that people judging me in the aisles of Target is a cakewalk. They’re having a blast when you take your kids to the playground.
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 diaper above his pants.
And all the little kids start laughing, pointing, and saying, “Look! That boy is wearing a diaper!!!” Or when the three-year-old looks at you over gingerbread houses and asks why your precious, funny, and brilliant little boy is so dumb.
Or when you realize he’s being physically bullied because he hasn’t learned the skill of tattling yet. These are the things that make me sick to my stomach.
That moment you realize people will stop sneering at you and start sneering at your child hurts deep down in a way that takes the breath out of your lungs.
As Mareto has grown older, the differences have become more apparent. They can’t be waved away or explained as typical toddler behavior. Protecting him from the world’s bullies is a little more complicated.
And that is now the hardest thing for me, his mother, about autism – my inability to shield him forever from judgment, ridicule, and mean children & adults.
And what makes it even more mind-boggling is that he is the sweetest boy you could ever hope to meet. He cares deeply about other people.
He “rescues” his sister from nap time, comforts crying children, loves animals, is friendly and kind, and has fun interests. Yes, he has some hurdles in life that other people don’t have.
But he also has a lot of awesomeness that other people don’t have. It comes to him naturally.
So, are the endless sleepless nights rough? Yes. Is it problematic that I sometimes can’t understand his needs and wants and how he views the world? Absolutely.
I’ve worked to get my son to move beyond his three foods for years. But those things don’t matter much. Those would be the hard parts if we lived in a world where I knew my son was unquestioningly accepted and celebrated for who he is.
If we lived in a world where people didn’t pass judgment so quickly and were quick to love all people regardless and because of their differences and taught their children to do the same… then the most challenging parts of autism would be much different. But we don’t live in that world.
And as much as I want to keep him close by my side and never leave the safety of our home, I know that I can’t. He has far too much to offer (and teach) the world for me to do that. He has joy and innocence, compassion and love, and an infectious curiosity.
The world needs him and more people like him.
