My Kids Have Invisible Disabilities & Other Parents Judge Me — Hard

It’s a PA Day and my 7-year old’s and I are on our way to the “Hissssstory of Snakes” program at the Toronto Public Library. Snakes are all they can talk about on our drive across town (“do you know they don’t have eyelids!?”). I’m happy to make the trek; my boys have some special needs that have made it difficult to be in the world, to participate in the extracurricular programs they so desperately crave. But the library is free and caters to a diverse city with diverse kids. Right?

We’re just in time, and my boys’ excitement bubbles over as they shout out answers to every question, one of them bouncing on his feet at the back, unable to sit “criss-cross applesauce” when there is someone at the front of the room talking about snakes(!). At first, others smile at their enthusiasm. Parents laugh as the Snake Guy asks, “What’s a snake’s favorite food?” and my son shouts “Dessert!”

But I see the moment the vibe shifts. I’m doing my best to keep the boys calm, but it’s no matter. I see the unmistakable look of an adult who thinks they’re going to teach my kids how to sit quietly and, by extension, teach me — his mother — how to parent properly, because my sons’ behaviors are clearly a result of my … what? Permissiveness? Laziness? Bad parenting?

My son tries to do as he’s told. He thrusts his hand in the air begging to be chosen, and when he’s not, when he’s ignored, despite being the only child with their hand raised, he calls out again.

Snake Guy stops the program. “He needs to leave,” he says, sharply. “Take him out.”

It hasn’t even been 10 minutes, and we haven’t even gotten to see a snake.

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“I listen to Dr. Becky!” I want to scream. “I’m a paid subscriber to all the classes! I’m on every parenting forum. I’ve read all the books and listened to all the podcasts!”

Instead, I try to take my son gently by the hand, but being asked to leave a program he has waited all day for has now made him distraught. He just wants to talk about snakes.

I know all too well how the next hour is going to play out.

My son is all shrieks and cries and arms and legs. And seeing his twin brother in distress and fearing he will miss out, my other son is up now screaming too, begging Snake Guy to change his mind, hanging off me as I try to remove his distressed brother from the room amongst the withering looks of other parents. Another mother yells at my suffering son to “sit down and be quiet” which agitates him even further. What started as a 3 out of 10 disruption to the program is now an 11 — and I know it will get worse.  

My sons’ have needs that are not obvious. If you knew their story, their “hisssssstory”, you would think it a miracle that they greet each day, each library program, with the unbridled enthusiasm they do. But I don’t want to tell you this. I don’t want to tell you, or the library, or the other parents, my sons’ diagnoses and medical history so they can attend an hour-long program on reptiles. Sure, the library notes on its website to call three weeks in advance of a program if your child requires “special accommodation” and I didn’t call. I didn’t call because parenting children with increased needs is a kind of full contact parenting that leaves little room to make pre-emptive phone calls weeks in advance. It’s living unpredictable moment to unpredictable moment, catastrophizing about the future all while never giving up hope that the world will be gentler, accept your children just as they are.

And that’s just it. If I had called the library, what accommodation would they have given us? Understanding? Couldn’t we all give that anyway? Could we not show children just a little bit of grace, recognizing in 2022 that not all disabilities are visible and that we’re all out here doing our best? Wouldn’t that be the best lesson to teach a room full of children?

I think this as one of the library staff carries my other son out of the room without my permission. I try and comfort my hysterical kids as the entire library watches them in their moment of distress. The boys beg to go back inside the program room, promising to sit quietly like the other kids, but the library staff now lock the door to really show them the consequences of their “actions.” One gets down to my sons’ eye level, with her hands on her knees: “Maybe you can try another time, ‘kay?” She keeps shushing them so the neurotypical children can learn about snakes.

I ignore her and the uncomfortable onlookers. I must keep my focus on my kids. It takes 45 minutes to get them back to the car. They cry all the way home as I try and comfort them, one hand on the wheel and one arm reached into the backseat.

While I know how these episodes will unfold, what I don’t know is the cumulative effect of them. I remember the feeling of shame I felt once as a child when I misbehaved at a park and had to leave. What will this episode, piled on other episodes, do to my children in the long term? What will be the impact — of all the missed snakes, all the missed programs, all the random strangers telling them to sit down, all the judgmental looks of all the onlookers — on their hearts?

Later that evening, after the dust settles, I broach the subject with my son. We all have things we’re working on, I tell him.

“Like you’re not very good at video games,” he reminds me. Yes, I say. I am working at being better at video games, and you are working on regulating your feelings. My son tells me not to worry, that he’ll teach me everything he knows about video games. I smile and cup his little cheek. I can’t bear the thought of the world diluting his sweetness, but I also need to prepare him. 

“Unfortunately, people are more patient with people bad at video games than they are with big feelings. Not everyone will be understanding, but hopefully others will be. The world is full of people who are kind.”

“Like you, Mommy,” he says, reaching for my hand. “You are always nice to us. No matter what we do.”

I take in his words. I repeat them every time the worry creeps in that I’m a bad mother, that I’m failing my boys. I try to see myself through their eyes and not others’ judgmental looks. I can only hope that when people ask my son to leave a room, their intolerance will be drowned out by his mother’s words, repeating over and over in his mind: You are the world’s sweetest boy.”  

“I am the world’s sweetest boy,” he says.

“In the whole wide world,” I tell him. “There is no one sweeter than you.” I say it over and over, again and again, as I continue to advocate, hoping to build a world as sweet as my sons. 

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