Sometimes I wish everyone had the opportunity to raise a child like my son, Jack.
Jack is fifteen.
He is nearly six-foot, two inches tall.
He wears a size thirteen shoe. Blue Nikes, in case you were wondering.
He picks his cuticles until they bleed.
He goes to a special school.
He takes medicine every day.
He has autism.
Raising a child like Jack is nearly indescribable. It is everything and nothing I ever expected. I only wish more people had the chance to do it.
Famous authors, professional baseball players, renowned journalists.
Librarians, cashiers in the grocery store, the man who owns the dry cleaning business down the street.
Pilots, police officers, pediatricians, politicians.
If more people could experience this journey, well, things might be a little different.
Airport security, for starters. Goodness, is there anything worse than trying to shuffle a child with autism through airport security? Never mind the lines and the shoes off and all of that.
It’s the subtle gestures through the scanners—the lifted chins and the two-finger wave the security officers use.
Jack doesn’t get it. Every single time, we have to stop, hold up the line, and explain he doesn’t understand non-verbal cues.
People behind us get impatient. They huff a little. They roll their eyes.
And of course we had to name our son John but we really call him Jack and that has created all sorts of problems, particularly when it comes to customs.
Don’t get me started on customs. I am convinced that one day, I will be strip-searched in the middle of an airport when my very own son shouts that his name is not John. There is no John.
Then there are the bathrooms. There is nothing worse than having to drag your taller-than-average 8-year old son into the women’s bathroom with you because you’re not comfortable letting him go alone, mostly because he might touch everything or tell a stranger at the urinal that the new Godzilla movie scored 40% on Rotten Tomatoes.
Or worse. When you are raising a child like mine—one who is incredibly naïve and thinks a house costs $100—your mind always goes to the worst scenario. Abduction. Abuse.
Medical forms. That’s another thing. If more people had to fill out the paperwork I complete on a regular basis, I am convinced there would be an uprising. There would be a revolt. They would look at that double-sided form with all the questions and the on a scale from 1-5 with one being the most and five being the least most often sometimes, and they would light their own eyelashes on fire.
Even better, someone would invent a huge database where you could put all the information about your kiddo’s quirks and oddities and medicine and symptoms.
At the next appointment, the doctor would look over the chart and say, “Okay, I see here he claims he is allergic to citrus fruit, but on a scale from 1-10 you said that is a lie.”
Report cards would be meaningless.
Trophies would be pointless.
Kids would be free to learn at their own pace, in a way that makes sense to them.
You know how every other day, you open one of your news feeds and there’s a meme or whatever, proclaiming it doesn’t matter if our kids are smart or athletic or argue for the debate team, as long as they are kind. As long as they sit with kid on the buddy bench, or invite the lonely student to their table for lunch.
It’s amazing how quickly we assume our kids are the ones who will dole out kindness like gumdrops, as opposed to having the child who longs for the sweet taste of inclusion.
What if the tables were turned? What if it was your son or daughter who needed a buddy on the bench, or a seat at the table?
What if we all struggled to raise a vulnerable child?
I can assure you, this masked air of benevolence would disappear.
He is vulnerable.
I am vulnerable.
Every single day, I depend on the kindness of strangers to help my son claim his space in the world.
Every single day, I read a story about how wonderful it is because so-and-so was actually nice to a person with autism.
Can you imagine how that feels? When someone congratulates themselves for simply acknowledging your child exists?
I’ll tell you how it feels. It stinks. It fills me with despair.
Despair has a taste. Did you know this? It’s metallic and sour, like a hot penny on your tongue.
And yet, at the same time, I know how hard it is to be around him. He repeats himself ceaselessly. He only wants to talk about things that interest him. As soon as you change the conversation to something other than, say, popcorn seasoning, he will literally get up from his chair and walk away.
I want you to love him like I do and see him like I try but I know this is hard and I don’t blame you one bit when you find him, uh, a little trying.
Some days, I don’t know what I want, to tell you the truth. It’s like chasing the sun. I am running and running and I am out of breath and my hands are stretched out before me, while I’m trying not to get burned.
If everyone had a child like Jack, we would listen only to hear, instead of waiting our turn to speak.
We would lend our song to those who stand voiceless.
We would be better.
I am better.
I see beauty in the madness.
This is the bright side of autism. This is the sun amidst the dark night spectrum sky.
He really did that, by the way. When he was in elementary school, Jack told everyone he was allergic to citrus fruit. It makes me smile, to remember it.