A Strange Part of Autism Parenting

Parents exaggerate about their babies. It’s not a secret. If you’re a new parent and doing it right now, we know. We know because we all do.

Maybe your two month old was randomly waving his arms and appeared to gesture towards the TV. So you tell people how your genius baby pointed directly at a show you like on television. People smile and play along with something like, “Oooo. Maybe he’ll grow up to be a big TV star!” But deep down they know and you know that it was all just a random moment in time. It wasn’t done on purpose, but you’re still proud because that baby, with all his random pointing, is yours.

I’ve seen this on small and large scales. In high school, a customer would come into the place I worked at and talk endlessly about how her four year old was reading labels off of medicine bottles at CVS. She’d recount how he could pronounce technical terms I never heard of and every tale involved a stranger telling her how amazing he was. Granted, that’s an extreme example, but you get the point. People like to talk their kids up. It’s in our nature. I do it too.

Then came the day when we had to start transitioning my then-two year old nonverbal son with Autism to preschool. We sat around my dining room table for a meeting with our coordinator and an administrator from the school district. I felt like I was in the principal’s office as we talked about numbers, reports, and observations from his home lessons.

For the bulk of the meeting, I sat and listened to all the things that my wonderful boy couldn’t do. I felt a bit attacked as they started rolling through them all one by one. It was a barrage that seemed to never end. Everything was about his shortcomings, which is the opposite of what the parent of a two year old expects to hear, and I just absorbed it over and over again until I felt numb. Finally, when the woman from the administration office asked if he has said any words and our coordinator answered “no”, my instincts kicked in and I said some words of my own.

He said “bye”.

Everything suddenly got very quiet.The woman from the district looked up at me and then back to her book, where she began taking notes.

He says “bye”. Anything else?

Our coordinator, who was familiar with my son, jumped in almost immediately.

I’ve never heard him say bye. He hasn’t said any words with me.

I saw how this one statement I blurted out had caused quite a stir. Still, I doubled down.

He did though. The other day. I said, “Bye!” Then he said like, “Ba”.

No one really said anything for a moment. They didn’t need to. I heard the way it sounded coming out of my mouth. Then our coordinator put her hand on my arm.

I know what you’re doing. It’s OK. This isn’t the time to do it, though. We need to make sure he gets the right type of placement.

That’s all it took. I sat there quietly for the rest of the meeting and, thankfully, he ended up getting the placement that he needed. Was it hard to endure? Yes. Am I glad that I did? Very.

It didn’t end that day either. Every year, we’re sent home a form from school asking us to fill in bubbles based on Lucas’s progress. They feature statements about his development and actions. Then I choose an answer of Always, Sometimes, or Never.

This isn’t a five question survey either. This is a small print booklet and the questions don’t take into account earlier answers. In other words, if question three asks if your child can speak and you answer “never”, you still have to go through questions about whether they use complete sentences or form questions. There is no section that says, “If “never” skip to question 40.”

So I find myself going line by line with an endless succession of “nevers”. Eventually, it gets ridiculous. They ask if my six year old can drive a car or hold a job. After the depressing task of confronting all the things – both relevant and nonsensical to his age – my son can’t do, I decided to send a note in with it last year that expressed my unhappiness over the process.

Of course, the school was very nice about it. They always are. His teacher and school psychologist called to ease my mind. After all, there was literally nothing they could do but let me vent. The next year, when they sent the same old form over, they included a note reminding me that this didn’t take into account what a wonderful boy my son is.

It was a nice gesture, but it still remains one of the hardest and strangest things about being an Autism parent. It’s not about saying your child has Autism. Sure, that can be jarring the first time, but that’s ultimately repeating what someone else told you. That’s not what this is.

It’s addressing your child’s needs in the rawest way possible. There’s no pretending, as parents sometimes do. For many, it’s confronting worries you had and learning that there were missed milestones that you didn’t even realize had been missed. You have to be completely transparent to get your child the best possible care. The early moments many parents get to exaggerate to a willing audience of family and friends aren’t part of the equation. There’s no box to fill in that says “maybe said a word last week”. No. You fill in “never”. Because deep down, you know that’s true.

We still have those private moments though. Lucas will often surprise me with something that sounds like a word out of the blue or a response I wasn’t expecting. I clap and hug him. It’s a moment for us. We might tell family or friends, who love hearing things like that. Deep down, though, I wouldn’t say he always does it or even sometimes he does it. He did it this time. That’s good enough for me in that moment.

Life, though, is full of so many other moments besides those. The interactions we have and the wonderful memories we create aren’t limited to a checklist of expectations from my world that he has to meet. I’ll never stop loving him and that’s the only never that matters.