Public Judgment
Written by Shane L. Nurnberg

Depending on where we go it happens every time my wife and I leave the house with our son, Braden. They’re out there ready to pass judgment on our parenting skills. They’re waiting. Mr. and Mrs. Public, who have no idea what it’s like to raise a child with autism, are waiting to see how we react when my son throws a fit in the clothing store, the park, bank, grocery store, everywhere. We have learned to be careful but we still aren’t comfortable with it.

If we are too harsh we get the “I can’t believe that parent just did that” look. If we are too lenient we get the “I can’t believe the parent doesn’t do more” look. If Braden is having a meltdown in the middle of JC Penney’s we get looks that say “that’s the product of inadequate parenting.” That’s the look that hurts most. If a picture is worth 1000 words, a look is worth 2000. And those looks are never comforting. Just once I’d like to get the look that says “Wow. That parent is faced with a challenge unlike anything I’ve had to go through and he’s handling it like a pro!” Needless to say, I won’t hold my breath.

As parents of children with autism we work extremely hard at developing top notch parenting skills. Like any parent, we don’t always do the right thing. We make mistakes. But we also learn to have a deeper bag of tricks. We have to deal with things that most parents don’t even have to think about. Some children with autism are more severe than others. Therefore some parents have to endure more. Luckily, my son handles transition like it’s nothing. But other children with autism don’t handle it well.

I love hearing stories from Gina, our S.L.A.T.E. Program Manager. Her 12-year-old son, Ethan, is the sweetest boy in the world (2nd to my son), but he does not handle transition well. I have plenty of stories about my son, like the time I tried to potty train him by leaving him naked from the waist down just to find that he was more than happy to poop on the floor in my closet. But Gina’s stories are usually on another level.

Ethan has routines for everything and if those routines aren’t followed with precision he makes his discomfort known to everyone within earshot. His Sunday routine is church, then Applebee’s, then home. Every Sunday after church he has to get the Oriental Chicken Salad from Applebee’s. One recent Sunday that middle step was skipped and Ethan made sure the rest of the day was a reenactment of the Huns invading Persia. Can you picture a pre-teen standing up through the sunroof of a Honda Odyssey in Applebee’s parking lot yelling “Chicken SALLLLLLAAAAAADDD!” I’m sure Mr. and Mrs. Public wanted to write letters to Congress about that one! “Get control of your child!” “Take parenting classes!” “Throw her in jail!” To make a long story short, after a huge fit topped with lots of yelling and screaming and mess-making he fell asleep hours later from sheer exhaustion. No doubt Gina was exhausted as well.

She has told me the story about the day the IHSS worker came to the house and Ethan accidentally threw scissors within inches of her head. Then there’s the story about Ethan inadvertently super-gluing his index finger to his upper lip. And then, my favorite, the time Gina had to escort him through the Disneyland Restaurant while he was yelling “You pooped your pants!” at the top of his lungs. Those are events I haven’t had to experience with Braden yet. Hopefully I will be able to avoid them entirely. But there’s no avoiding public judgment.

When my wife and I take Braden on bicycle rides sometimes he makes those sounds that only special kids make. People notice. From the tallest hair on his scalp down to his feet he stands 4 feet now. And people swivel their head around to see what’s going on. And then they swivel it back around when they realize that sound just came from my son. You know the special kids sound. We all do. It varies in frequency and volume depending on the child but no typical children make the special kids sound. Sometimes we get the look that says “Oh, those poor parents.” And when new people find out about our son’s disability, on rare occasions some have even said “I’m sorry.” But it’s not pity we want.

We want understanding. As parents of a child with a disability we want Mr. and Mrs. Public to understand that our family is just fine and disability is a natural part of life. Our government said it in the U.S. Developmental Disabilities Act; disability is a natural part of the human experience. We’re all headed in the same direction. Our son just happened to get a disability a little sooner than most. The aging process does some funny things to the human body. And that’s just one event that can lead to a disability.

To Mr. and Mrs. Public, if you’re out there, I think all parents would consider it very friendly if you were to say something like “What a beautiful little boy!” or “That’s a child who can achieve anything he wants!” Statements like those can make our day.

After all, let’s face it; Looks can be deceiving. ▪