When you’re around many other autistic kids besides your own, a whole array of behaviors don’t faze you, assuming you even notice them at all. If someone’s kid runs around in circles flapping their arms, about all you’ll get from me is a smile. If another kid goes stiff as a board and lies face-down in the mulch yelling and refusing to budge, unless the child is going to harm themselves, I hardly pay it another thought, or I think “yep, mine does that.” If a child bolts for the exits, I just non-chalantly hold out my arm and turn them back around. Our radars are tuned in for any unsafe behaviors, but beyond that, most of us are pretty “whatev” about the whole thing.
There’s a whole shared understanding among parents of autistic children. We’ve been there and done that; there’s no reason for you to explain or apologize or do anything else for that matter.
Recently I was talking to a parent when their child suddenly went into a full-blown, 9.0 on the Richter Scale meltdown. The child started flailing and hitting to the point where injury to self and others was a real possibility. I did what I normally do in that situation – stand ready to help intervene if more hands are needed to prevent those injuries from happening. I’m 225 pounds and 6′ 3″ with enough strength and leverage and a fairly high pain tolerance, along with enough know-how at this point to usually understand how I can help in those situations if needed. Not surprisingly, parents are pretty good about knowing how to de-escalate these situations with their own children, and in this case in a minute or two things were back to relative normalcy.
Still, this particular episode stirred something unusually strong in me, and I had to go sit down with it for a few minutes and figure that out. People who know me well know that I need to sit down and process certain things or else I just carry them around with me forever.
I went through a list of things to see if I could figure out what was different than usual, as typically these situations don’t faze me much. Was I judging them? Never crossed my mind. Discomfort about what the parents of non-autistic kids who saw all this were thinking? Nope. I’ve pretty much stopped caring about that. Feeling the need to jump in and fix it? Yeah, to some degree, but that’s just how I can be sometimes. But I knew this parent knew their child way better than anyone else, so that’s a fleeting thought I wouldn’t have acted on unless there was an imminent, real physical danger there.
Was I glad it wasn’t my child doing it? Oooo, that’s a hard one. That’s one of those issues we parents of autistic children don’t like to talk about. It’s almost a taboo subject. Sentences like “I’m glad my child isn’t a headbanger” will slip out in conversations and it’s common for the speaker to instantly look mortified. It’s also common for the parents they’re talking to – assuming their children aren’t self-injurous – to nod quietly and inwardly agree. It’s just that we can’t imagine what that would be like. J-Man does little more than slap himself on the head sometimes.
It’s not judgment really, but this unfathomable weight that we can feel pressing on us when we try to imagine what it’s like to have a child who repeatedly tries to put his head through a wall. You read about the autistic child who blinded himself because he continuously jabbed his thumbs into his eyes. I hear those stories and simply have no idea what to do with those kinds of unimaginable emotions.
What do you do when you see a parent who would stand in front of a speeding freight train, dig their feet in the ground, and dare the train to hit them in order to protect and save their child, and then see that same parent suffer utter helplessness and desperation at being unable to keep their own child from such wild-eyed, primal-feeling torment? Or worse, be unable to protect their own child from the next horrible injury that comes when their head strikes a stud in the wall this time rather than the empty space in between?
All I want to do is grab that parent and that child in my arms and say, “I’m sorry. I’m so, so sorry.” over and over again until it all goes away. That’s when I figured it out.
I simply wanted to say to that parent, “I’m sorry. I’m so, so sorry” and through some impossible force of will make all that pain and desperation go away. But then I imagine someone doing that to me, and I not only don’t feel consoled, I feel angry. I feel like they’re saying, “I’m sorry your child is like this,” like he’s broken or something.
I simply don’t know what to say or what I want said to me. As I sit here and think about it, maybe all I want is for that someone to be there with me and not run away, to stand there in the chaos for the time when I need them. I realized how much more I value the knowing presence of someone rather than any words at all.
We had our first meeting of the parents and teachers of the autistic kids at our elementary school a couple of days ago. Most of them were complete strangers to me, but I felt completely comfortable there with them. They weren’t strangers at all, really. The more we talked, the more we acknowledged the vastness of our shared experience, that not much really needed to be said. It was already understood.
Recently a young cashier at the bookstore said, “I’m sorry” to me when I told them J-Man is autistic. I told them, “Don’t be; I’m not.” I know she meant well, and I felt bad for wanting to jump on the counter and yell. It’s just that I feel like driving an exclamation point into the ground when people say that and respond with, “Damn it, there’s nothing wrong with him!” To me that’s not some statement of wishful thinking; it’s the truth.
I realized I don’t want sympathy; I want empathy. And I wonder if that’s what other parents of autistic children want. I want people around us who can be strong when we are not. I want people around us who know and understand without us having to explain everything. I want people who will stand in the center of the chaos with us and be there for us when we need their aid. I want people around who don’t judge me because I feel desperate or afraid or frantic. I want people around who will respect the beauty and wonder of my child, and still see that beauty no matter what happens at any given moment.
And I want those people who judge us or feel sorry for us because they think our children are broken to go get bent. But that’s another story.
So maybe instead of “I’m sorry” I’ll try to think of something else. Perhaps “what do you need me to do?” or “I’m right here; how can I help?” or, well, I don’t know. Maybe it’s just best to stand there quietly with them in solidarity and with understanding. We are the only people who really understand at all what the other parents are going through.
I saw this on an old West Wing rerun last night, and it seems so fitting right now.
Leo McGarry – “This guy’s walking down the street when he falls in a hole. The walls are so steep he can’t get out. A doctor passes by and the guy shouts up, ‘Hey, can you help me out?’ The doctor writes a prescription, throws it down the hole and moves on.
Then a priest comes along and the guy shouts up, ‘Father! I’m down in his hole. Can you help me out?’. The priest writes out a prayer, throws it down in the hole and moves on.
Then a friend walks by. ‘Hey Joe! It’s me. Can you help me out?’ And the friend jumps in the hole. Our guy says ‘Are you stupid? Now we’re both down here’. The friend says ‘Yeah, but I’ve been down here before and I know the way out.’”
May we all be the kind of friends who are willing to jump down in the holes with each other.
Posts that hopefully are similar:
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- Pre-Game Speech for Parents Just Receiving an Autism Diagnosis
- The Subject We Avoid Talking About – The Physical Toll of Parenting
- Letter to a Struggling Parent
- If ignorance is wisdom, we’re all gods here
- Musings from the Weekend
- Recognizing Your Own