Autism Acceptance

After a week of disrupted routines, travel, and bathroom schedules, I should have known that Good Friday wasn’t going to be so good. But it started out fine. We loaded up in the truck to go out for a short ride to run some errands. Matthew was sitting beside me, holding Woody-our constant companion-and watching the Wiggles on his iPad. Everything was fine.

Until I turned right instead of our usual left.

Traffic was heavy. We weren’t in a hurry, so I thought we’d go a different way.

And then it started.

Often times there’s a build up to full-on meltdown mode. I can sense it coming. Matthew starts repeating things he hears a bit more loudly than normal. If Woody is around, Woody’s hands find their way into Matthew’s mouth, biting down to relieve the stress of whatever is troubling him. And there’s bouncing to shake the truck.

There wasn’t any build up this time. No warning.

Woody’s hands did make their way to Matthew’s mouth, but this was mostly so Woody would still be close. The iPad hit the floor. There was bouncing, but Matthew’s hands started alternating between rubbing his nose so hard he started a nose bleed and pounding his head.

All while we were navigating traffic.

There wasn’t anything good about this Friday.

While I rarely think it’s possible when he really gets going, it escalated on the drive back home. He wasn’t ready to go home, but I didn’t have much of a choice. We needed the comfort, safety, and privacy of home, with a garage door that could shut out the world.

We got home, somehow.

And I grabbed a wash cloth to help clean him up and give Woody’s hands a break from the biting.

It usually doesn’t last this long. We’re coming up on 30 minutes now, and he’s still going strong.

He hits me while I’m trying to clean him. He doesn’t mean to, but it happens. He pounds my chest to the rhythm of his racing heart. He’s hurting. He’s panicked. And he can’t stop it.

So I let him.

I want him to know that I’m here for him.

I want him to know that I’m hurting with him. And after the first one, the blows don’t hurt. He’s just showing me what’s happening. He’s communicating. (There will be time to redirect him to something less physical in a bit.)

But the screaming and self-injurious behavior continues. So I protect his head with my hands and let him scream.

I hear the doorbell ringing. A neighbor has heard, and the dog goes even crazier. I can’t answer now; he needs my full attention until the worst can pass. I hope they see the sign on our front door announcing autism to the world and that they understand. I’m sure it sounds like I’m hurting him.

But I’m not. I cannot imagine how anyone ever could hurt someone. His screams are killing me.

After about another 20 minutes that feels like 20 hours, the hitting stops. His nose is stopped up now with the mucus from crying, and he’s rubbing it hard again, but the wet wash cloth is helping blunt that a little. And he’s calming a bit, so I step back to give him his room. To let him know that I trust him to work through this on his own.

I go inside to check on the door and the dog, but whomever it was has left. The screaming continues through the walls, but there’s a calming quality to it. It’s slightly less intense, so I get him some water to take out to him in the truck.

He won’t take it from me, so I just leave it on the seat beside him and give him some space again. He’s losing his voice from the screaming. He’s going to want the water soon.

And I stand inside the house by the door, close enough that if it escalates again, I can reach him, but out of his sight.

I don’t want to hurt him by seeing daddy cry.

And we cry together.

After another 40 minutes or so, he’s quietly watching the Wiggles, still sniffling, still upset, but quiet. Calming down, drinking his water.

I can breathe again.

About 15 minutes later, he comes inside and walks up to me. He isn’t making eye contact, and I’m not making him. Eye contact is too intense after the last couple of hours. Probably for both of us.

He reaches out to me though and takes my hand in his small but growing one. He pulls my hand to him, and I take him into my arms. And we stand together recovering. He whispers to me in his hoarse voice, “Go for a ride, please?”

So I refill his water, and we leave. And it’s good. The storm has passed. My boy is his happy, loving self again. And he’s singing with the Wiggles, so I act out the words with him on our way to the car wash.

Where we have a moment like this:

His flushed cheeks the only sign of the pain from an hour earlier, but this moment, this love, this is a moment I keep. That I accept

Autism Acceptance

April is Autism Awareness/Acceptance month. Autism Acceptance is hard. Even for me. It’s hard because it hurts. Sometimes his autism hurts him, and that just kills me.

And yet, his autism is part of him. And I accept him. Completely.

I accept you, Matthew.

I accept your happy, joyous laughter.

I accept your love of Woody and Buzz.

I accept your desire to wear the same shirt and shorts even when it’s cold outside.

I accept your tears and your biting Woody.

I accept how sometimes the stress just builds up, and I accept you when you’re just not strong enough to keep it from exploding.

You’ve gotten so much stronger, so very much stronger, at handling the warring emotions inside you. I’m so very proud of you and the young man you’re growing into.

But when you’re not strong enough, don’t worry. I’m strong enough for both of us. And I’ll help you through it.

And I’ll fight for you everyday to have what you need to find your path in this world. This is why I fight for your teachers and aides to have the resources they need to help you.

This is why I fight for smaller classrooms cause while you might be okay 90% of the time, during that 10%, you need more. And the administrators who aren’t in the classroom every day have to know that.

Cost be damned, they have to know.

I accept you, buddy. And I’m here. Especially when it’s hard.

It’s you and me working together to help the world become aware. To help them understand. To find acceptance.

Because you’re worth it, and I love you.

And I can see and feel your love everyday.

 
Russell
"Children see magic because they look for it." --Christopher Moore, Lamb: The Gospel according to Biff, Jesus' childhood pal.

10 Comments

  1. I have helped on special needs buses before and seen a child do this to there self until their noise bleeds hitting their head and it just makes you want to cry but you just have to try and help them. I pray our Lord will be there for you both . J. W. H

  2. thank you for sharing as always russ.. you are such a wonderful daddy and i hope other dad’s take notice and follow suit. prayers for y’all..

  3. Wow!! Such a similar journey…but now on the other side!! Wouldn’t change it for the world….soooo much LOVE!!!

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