Some phrases are weird to write.
When someone hears about “hiding my special needs child”, it conjures up images of him covered in a sheet like Charlie Brown on Halloween. They assume all sorts of terrible things and I totally get it. I wrote that phrase myself just now. Not only that, I lived it and know what it really means. Yet, even I think it’s terrible to read. Let me explain a bit more.
My son is 12 years old and non-verbal. He is one of two people who currently light my life and I thank God every day that he’s here. He changed me as a person and showed me that love doesn’t need words. Communication isn’t just done through speaking. Once you’re forced to work around a lack of language, you realize how little of our interactions need it.
There was a time, though, when Lucas wasn’t 12. He was four or three or two. It was the age of confusion for me, as a parent. I saw that there was something going on that wasn’t typical. I knew, in my heart, that he had special needs.
While the actual time frame was about a year, it felt like decades. I agonized over his stumbles and worried every single day about what they would turn into. He struggled with so much and I felt like the only one who could see it.
Usually stories like this end there. We talk about getting a diagnosis and everyone cheers. That is supposed to be the great moment that makes every parent feel better. Finally…an answer.
Nope. For many of us, hearing “autism” makes it even harder to fathom. How? He hugs, kisses, makes eye contact, ignores loud noises, and doesn’t line up anything. Not toy cars. Not shoes. There’s no lining up. How can it be autism?
The doctors would shrug and say, “LOL. Dunno. Just autism.”
OK, so maybe they didn’t say it exactly like that, but they might as well have. Their words would cut me like a knife each time and, no matter how many times I asked, no one could answer any questions for me.
Then, they sent me into the world with this confused lack of information, to answer countless questions from the masses.
Does he like daycare?
Does he knew Santa’s coming?
What’s his favorite stock pick in the upcoming year?
I had nothing. Having to tell people that I couldn’t give an answer about my own son destroyed me. They were aware he had autism. They even accepted it. Yet, they wanted to know everything.
Not having answers hurt me for a few reasons. First, I began to flash to every possible response and picture our lives if they were true.
Hmm. Does he like school? If not, how would I know? Are they mean to him? Should I put a recorder in his bag? What if they find it? Will this be forever? Will I always have to worry about how people treat him when I’m not around? How long will this go on for? If he ends up in a place as an adult, will they be mean to him? Should I put him in a place? Will I have to? How could I put him there? What would that be like? Would he cry? Would I want to jump out the second floor…
I said, “Does he like daycare?”
Oh. Uh. Dunno. Yeah, I guess. They say he is happy.
Forget that aspect of it, what about my own paranoia? It wasn’t just that I couldn’t answer them. I wondered why they were asking at all. Do they suspect he has special needs too? Do they see it? Are they testing me? Does the world see it? Am I the only idiot thinking it might be something else? What do people think of my son? Are they judging him? Why are they in my house? Why do I have judgmental people in my…
I asked you why you are staring at me like that?
We didn’t go out a lot during that time. When we did, Lucas kind of hung back. I took him home from parties early, usually with the full blessing of the host. I’d take him for walks that lasted forever. In the wagon, in the stroller, or in the car, my kid logged many miles during those days.
The best example of this time period was the husband of one of my then-wife’s relatives. He always wanted a high five. When my son would diss him, he’d look at me like I did something wrong. I never understood it. To this day, I cringe when I remember it.
My awkward responses evolved over time. I went from waiting – hoping – he would high five back to laughing it off to the day that I could finally tell this dude…
He doesn’t really do that. I can help him though.
Then, hand over hand, I had Lucas slap him five.
And that was when I felt like we were no longer hiding.
The world needs to know my boy and my boy needs to know the world. As a parent, though, understanding who he would become was a difficult process. I forgive myself for all that apprehension about his autism and don’t find shame in the time period we stayed socially cut off. I worried out of love. I feared out of ignorance.
Today, I’m a different person and so is my little guy. We have grown together and know each other. Not only do we not hide, but we make sure that everyone can see us. If they could see the person that I see, then they’d know how truly special my son is.
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