When It’s Just Us: A Special Needs Family At Home

Originally Published February 27, 2017

I’m aware there are questions people have when they meet my son. I know this because there was once a time when I didn’t have a kid on the autism spectrum. Heck, there was a time when I had no kids at all. I vaguely remember that time. I think Britney Spears shaved her head. Everything else is a blur.

No one asks, but I’m positive that most people wonder about what it must be like to live our lives when they watch me interact with Lucas. Whether it’s his screeching or clapping, I know it must seem completely new to them. While I can’t pretend to know the tone of their curiosity, I’m sure it’s there and balances out to, “What must it be like when a special needs family is alone back at home?”

It’s a sensitive question that people must imagine is both emotional and profound. So I offer this emotional and profound answer.

It’s fine.

Seriously. That’s it. It’s no different than anything else. Being with my non-verbal son at home, away from the world, is absolutely normal to us. The things he does that seem so starkly different from those in the outside world are just average occurrences in our everyday lives. They may come off as jarringly different to a fresh set of eyes, but to us, it’s just who he is. Just like we’re who we are.

Sure, he claps or stomps or pulls me away from my desk to come sit with him under a blanket, but are any of those things really all that strange to people who have kids? If you think so, I offer this additional piece of total truth.

All kids do things that are weird. All of them.

brother sister

Want proof? Take this example of my eight-year-old daughter, who is not on the spectrum at all. It begins with me sitting on the couch watching TV. Seeing this from the dining room, Olivia darts towards me at full speed. She stops short, flops down beside me, half upside down on her stomach, and begins howling:

Paaaant…allooooooooons! (deep breath)  Paaaant…allooooooooons! (deep breath) Paaaant…allooooooooons! (deep breath)  Paaaant…allooooooooons! (deep breath)  

After trying to ignore this for an eternity and a half, I begin to envision slamming my own head through the patio door window. Just before I make those visions into a reality, I break my silence, look her in the face, and ask.

What exactly are you doing?

Being funny.

Oh. Is that what that is?

Huge laughter.

This has happened countless times. It’s just one tick off a checklist of insane things she does that leave me staring in disbelief.

The point is that everyone’s kids (and everyone as kids) do these things. It’s their way of discovering the world around them. They test out humor and reactions. They try your patience on purpose, examine how to interact with others and work to forge their own identities. The path to being unique is paved with some whacked-out stuff. That’s not an exclusive characteristic of a kid with special needs. It’s a characteristic of people in general.

jg lucas

When I was five, I learned the word “metamorphosis” in school. I then spent a solid three weeks obsessively repeating the word, sometimes inside my head but most times out, with a rhythmic enunciation of each syllable. To this day, I can hear it sung out by the younger me whenever I see it written somewhere. In the grand scheme of things, that’s far more abnormal than clapping or playing with blankets.

I’ll even take it one step further. We, as adults, do weird stuff. For instance, whenever we drive past our library, I make it say “hello” to Olivia in a deep, old man voice. I excitedly wave like a lunatic and respond, “Hi, Brary!” This has been going on since she was a baby. At first, she thought it was real. Then, as she began to get older, she insisted it wasn’t real. Now she just ignores me.

But I still do it every time.

So, here’s the answer. It’s fine. My son’s behavior, while unique to him, is just like any other child’s or even my own. What makes it easiest, though, is the fact that we love him. Outside of our house, there might be reminders of what milestones he still needs to reach. When it’s just us, though, none of that even enters my head. He’s just him.

We all just join him under the blanket and clap along. Then we sing about pantaloons and wave to the library. We all may be strange, but we’re OK with that. You make your own normal. Nothing else matters.



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