If you’re an NJ autism parent, I see you there in the dark (Opinion)
I dropped the ball yesterday morning as the parent of a child with autism. I’m glad.
It’s April, so it’s Autism Acceptance Month. Sunday night I received a text from my son’s school…
“…in honor of our students and families during Autism Acceptance Month, please wear blue to school on Monday, April 4.”
I don’t just have a 6-year-old with autism. I have a younger son with it as well. To say it’s challenging doesn’t begin to explain it. I also have two teenagers who have their own needs and appointments and problems. So I hate when schools drop this on parents the night before. One day it was wear purple to support some cause, and it was sent the night before. Unless you’re related to Prince you might be like me and not have a lot of purple shirts (hint, none) for your boy.
Anyway, Atticus has been going through a growth spurt so I immediately ran through what’s clean, what’s dirty, what would still fit, and luckily there was this.
Perfect. It was mostly blue and ready and still fit. I was set.
So in the morning, it was time for him to get dressed. He pulled on his shirt and immediately disliked it. He had worn this shirt before without issue. But you never know when a child with sensory issues will react to something.
What do I mean? Look closer at the shirt.
See the design? It’s not printed. It’s in the geography so to speak of the shirt itself. And it was great bothering him.
Look at the inside.
This inside has it too and so didn’t lay flat and smooth against his skin. He could feel the bumps. And although to you and me it would be nothing, to a child with ASD and with sensory issues it can be almost painful.
So here I was, trying to send him in the holy blue shirt, the blue shirt that would show the school and his teachers we were a woke family who cared about autism. Hell, we ARE an autism family. What on Earth might it look like if he went there without a blue shirt in support of Autism Acceptance Month?
So I had a brief battle with him over this shirt. Seeing how uncomfortable he was I soon made a dash upstairs and came up with a short sleeve shirt that was at least half blue. I had him put it on.
This one had a collar. And this was a day, apparently a high sensory day, that Atticus was not OK with a collar at his neck. He soon grabbed a super soft gray and green striped shirt that had been sitting in clean laundry to the side indicating he really wanted that one.
I explained about the blue shirt. I explained about supporting Autism Acceptance Month. I was going to make him wear one of the blue ones.
More of a meltdown. Then a tear. Seeing it I realized … what the hell was I doing?
If the point of this designated month is to help people be more understanding of autism, then one thing we need to accept is a blue shirt and a symbol is not the most important thing. If you really want to understand then understand a child with autism might not go along with your cliched, blue shirt effort. It’s more important that a little boy with autism feels comfortable.
Understand a thing itself is more important than its symbol. And I live that thing itself morning, noon, and night. When I’m asleep I dream of it. Atticus is 6 and still non-verbal. I will have dreams where he’s talking, sharing exciting stories, only to wake to realize it hadn’t happened. And I’ve cried.
So let’s get something straight about understanding autism. We parents who are all on a journey we never chose understand it only too well and in a deep way no BCBA and no academic ever will if their own child is neurotypical.
We understand what it’s like to be halfway through a grocery store and our autism warrior starts rocking manically in the cart’s child seat. Or starts screaming for no obvious reason. We understand the dirty looks from strangers and we dread them. We understand the terror of lying awake at night wondering if they’ll ever be able to live on their own and what will happen to them if we die. We understand, are aware, so well aware of autism during this Autism Acceptance Month. We understand its pain. We are aware of its exhaustion.
Of its isolation.
And there’s the irony.
A hallmark of autism is that the person on the spectrum lives inwardly. We parents end up doing the same. The birthday parties we don’t take them to when the invite was “must include the whole class” because we know what will happen. The sitters we can’t find because some of our own family members aren’t even confident in wanting to watch them while we can recharge.
We are accepting of our lives. Of the stares, the coldness of strangers, the marginalizing by society, maybe we’re too accepting.
So let me say this to you.
I see you.
I see you in the darkness and I see you struggling at the mall. I see you hurt by the dirty look you just got from the old lady when your child wouldn’t get in the car seat. I see you when she broke free eloping and almost ran into traffic and how scared you were and how conspicuous you felt. I see you when he hand-flaps and draws negative attention and I know what you’re feeling and part of it is alone. I see the friends you lost because you have so many therapy appointments and so little time. I see the toll it’s taking.
But be accepting of some really important things in this Autism Acceptance Month.
Be accepting that your child has every right to be here. Be accepting that some of us don’t care even a little bit that your warrior is screaming their head off at the post office or in the plane. Accept that you don’t need to make excuses for them or give one single damn about the judgment of others. Accept that the autistic mind is different but it is beautiful, and that it is beautiful even if they never invent the Tesla or become a motivational speaker or if they never speak at all.
Atticus has shown me glimpses of his mind that have amazed me and parts of his soul that I wish I had myself. I’m sure your child with autism has too. Be aware that it doesn’t matter if you’re the only one who sees it. Know it’s there. Know it’s real when you see it. Know they count. Know they love you even if they can’t tell you yet. Or ever.
Stop being self-conscious when you’re out in public with them. Stop caring about strangers who don’t care about you.
There is no such thing as a perfect child or a perfect parent. Stop thinking yours needs to be. Stop thinking you need to be.
God knows I’m not.
After all, I dropped the ball yesterday morning on that blue shirt. I’m so glad. It got me closer to where I need to be.
Opinions expressed in the post above are those of New Jersey 101.5 talk show host Jeff Deminski only.
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