Why No One Could Tell Me Who My Special Needs Son Would Be

I remember the desperation. Hovering around two and my son still wasn’t talking. As the months and years ticked by, the questions that people asked me felt differently than they had initially.

Suddenly inquiries about his first words didn’t feel like a new parent’s small talk. They felt like accusations and concerns. It’s like having someone ask you how clean your room is when you know full well that it’s on fire behind the locked door in the house.

Lucas stayed behind my mentally locked door for a long time. The delays that were so obvious to me were quickly becoming obvious to the world. Questions about what he said, when he’d say it, and what it meant were all left unanswered.

They were unanswered not just by me, but to me. I was asking those same things that random friends and family were coming to me with. They wanted to know if he was talking and so did I. They thought to ask me. I thought to ask everyone else.

Doctors, specialists, teachers, and anyone else who was supposedly skilled in children with special needs all heard it. I’d come at them from different angles with different ways of saying the same thing.

Is there a chance he might still speak?

Anything is possible. We can’t say.

But will he maybe be able to say words?

No one can say for sure.

Any words? Maybe some?

Anything can happen.

I had become a walking thesaurus. I’d ask about his future and get some ambiguous response that would then send me down a rabbit hole of similar phrases to plug in. I hoped, somehow, that I could trick a doctor into finally giving me something concrete.

NO PARENTS ARE IMMEDIATE AUTISM EXPERTS

This line of questioning became so important to me that I started trying to anticipate the reasons why I couldn’t get a solid reply. Like a telemarketer trying to handle a customer’s negative denials, I had a slew of ways to ease their concerns with rebuttals.

Listen, I won’t hold you to this. If he doesn’t talk one day, I won’t sue you. I promise. I just need to know. Do you think he will?

I’d ask that and get yet another shrug and meme-worthy quotation about hoping for the stars or whatever the hell. Nothing was real. Nothing made sense.

OK, then, I figured. Forget the words. What about him? What is he going to be?

In some ways, that was a more pressing concern for me than the words. Fine. He won’t talk…maybe. But if he grows up to be the strong, silent type, we’ll be cool. Right? The only question is “what does that look like?”

After all, the TV said that people with autism hate to be hugged. Dustin Hoffman taught me that. So the fact that Lucas loved hugs and kisses meant he wasn’t on the spectrum according to my warped knowledge of autism. It has to be something else…right?

Anything is possible. We can’t say.

So he will be able to live a “normal” life one day? He will be able to be on his own?

No one can say for sure.

I know. But given how he is, do you think he’ll hold a job one day?

Anything can happen.

Look, I won’t sue you if…

And we’re back to the suing thing again.

In the end, no one told me anything more than a pat on the back and a “keep your head up”. It felt like these experts were all kicking me down the road as we held on tight for that magical day when anything could or couldn’t happen…maybe, no promises. We’ll see. Ugh.

Ten years later, my boy is on the cusp of turning twelve. He has no words and a lot of the life skills he should have developed by now are still struggles. He still loves hugs, doesn’t respond poorly to loud noises or sounds, and shows that he loves to be around us. That’s who he is.

james lucas

The reason why no one could have told me that is because no one can predict anything about our kids – any of them. They can’t do it for those on the spectrum any more than they can do it for those off the spectrum. I have a 14-year-old “neurotypical” daughter and all her personality traits, hobbies, and sills are surprises every day. To predict the future of anyone is next to impossible. That was the real issue with Lucas. No one was trying to fool me and no one was worried about getting sued.

Well, maybe some of them were worried about getting sued. People sue a lot. It’s worrisome.

I wish I could go back and see myself from 2013. I’d explain that everything is going to be alright.

Then, the old version of me would excitedly say, “Yeah? It’s alright? He speaks? He doesn’t have autism?”

And the new version would say, “Oh. No. He has autism and he doesn’t speak. That doesn’t matter. He, as a human being, is perfect. Words don’t matter. You’ll see.”

Chances are, 2013 me would be disappointed. But that’s only because he hasn’t lived the life I have yet. He hasn’t seen the life we have or the boy my son is. That old version of me would never understand without seeing it himself.

For that reason, I am glad no one ever told me. Because I couldn’t yet appreciate it. Raising a child like mine (or any special needs child) is a process that you have to do in order to understand how special it is. No doctor could have ever seen this coming. No one could have predicted the amazing person my son has grown into.

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