Even I can stumble in autism parenting

My kiddo when he was doing homework

Raising a child with autism is a series of challenges. Parents get flustered and we are no exception. Yes, I've been an advocate for education on autism but that doesn't make me more than human or immune to stress and frustration.

It's easier to give advice on someone else's child because you can almost do it with a clearer head and a different point of view. But that's why we have a community isn't it? So let me bring up to date.

Last week my son was grounded from his DS games for three days because of lying. He accepted that up front but got up in the middle of the night and stole his DS back from our bedroom. For that, he lost it until the 1st of July (with a vacation right around the corner). I warned him if he did that again, he couldn't take his DS on vacation. We spent the day talking about it and doing what is right. That very night, he stole it again.

I hid the DS in a new place that truly confounded him. We woke up at 2 am with him in our closet looking for it.

To stop that behavior we removed the DS from the house, but a new situation came up. It was 10:30 or so at night and we were in the opposite end of the house watching television when I got a phone call. It was the stepfather of one of my son's friends (not keep in mind my son's 10 years old). My son was standing in his friend's driveway on the opposite side of the block from us. I couldn't believe it. I went straight to his room and sure enough, he wasn't there. He had climbed out his bedroom window and left. We didn't hear a thing and no one saw anything either. I went and picked him up.

How did he manage a window with a six foot drop? His bed was how he reached the window and pushed out the screen. My mountain bike was parked under the outside of the window and that's how he got down. He was lucky, way too lucky to describe. The following morning we went into protocol mode. Call the therapists office and report to his psych dr, get his counselor and a police officer to come over and talk to him about how dangerous it was for a child in his pajamas to run off at night.

He hasn't run off again, but he's still getting up at night and getting into mischief. He snuck his laptop into his room and has gotten candy. The candy is no big deal but we are worried for his safety so there are rounds of us playing guard duty. His bedroom has been completely rearranged so there's no more reaching that window. I need to be taking his shoes and sandals at night. And I've set up a table in the living room so I can be right in sight of him while working at my computer instead of being in the office.

We've already received lots of wonderful advice. Good friend Neil from facebook suggested that his DS may have become his special interest and therefore as powerful as a stim behavior for him. Taking it away makes him too unbalanced. I missed that thought and thank Neil for pointing it out. So a new schedule is under way. He's saying he needs more of us. He's not throwing violent tantrums or anything like that.

But even an advocate can get flustered and need advice. No one is perfect.

Shifting tics and drifting minds

This morning, the car needed gas. The poor thing had to be running on fumes as I took my wife to work. Unfortunately, as so often happens, my mind drifted off elsewhere and I drove right on by the gas station. I got all the way to her work and she handed me her bank card.

"What's this for?" I asked.

"To get the gas for the car."

Then it struck me what happened. I know what you're thinking; "Hey man, that happens all the time. It's normal."

Well I have two things to say to that:

1: It doesn't feel normal to me.
2: I could understand this and research shows it's normal to a point.

I hate it when my brain does its drift away thing. It can make it very hard to get where I'm going and finish what I'm doing. It makes me space off important things like current tasks, making dinner, making important phone calls and more.

I've taken the trash out to the can outside and wound up staring at the trash container, wondering why I was there. It may be normal at a certain point, but in my case, I find it terrifying. In any case, my next MRI will be of full spinal and brain so we can try to get a further look at what's going on. So far, concussion causes permanent brain damage cannot be ruled out and is highly likely. Even so, it wouldn't cause me to progressively get worse, so my doctors are concerned on that point.

Finally on me, for a long time there wasn't much of pain involved, but now there is. It's in my calves, knees, elbows, neck and back. The other night, my wife was rubbing the back of my hand gently with her fingers and I was surprised to find that this actually hurt. It felt like my hand was severely bruised, but nothing showed. Now it seems fine. I've experienced the same pain in my scalp on occassion now.

So what about the tics I mention? Well, that brings me to my son who's tics and stims have shifted. They will do that many times as he gets older. All we can do is try to help him work through them and concentrate on what's happening. Some say you can't stop your autistic child from stims or tics, but some have to be addressed. Like forcing a hacking cough that sounds like a cat gagging on a furball. He's developed some new obsessive traits as well that we are trying to help him with.

He's obsessed with the idea that his fingers stink and that he's stepped in something with his shoes. He stepped on a giant slug the other day that kind of sealed the deal for his feelings. Now he does strange tip-toed walks around the back yard that worry us. Maybe I need to step in something gross and handle it like it's no problem just to show him? We really aren't sure. I try to reassure him that something on the bottom of his shoe is why he wears shoes in the first place. I can see it will take consistent application. At times like this I have to remember that he's overcome worse, like being a "poopie picasso". When he was a toddler he would smear feces (it's a texture issue) and nothing tops that, absolutely nothing.

So we carry on and that's all for the update, for now.

What does stimming feel like?

I found this to be a very good question. While a couple of readers took time to answer it on my wall at Facebook, I wanted to make sure that I answered it here too.

Stimming is generally a repetitive behavior that persons with autism may engage in. It may include rocking, hand flapping or gesturing in the air. It could be foot tapping, leg bouncing, or even something vocal. It could be clapping too.

Why the stimming? Sometimes, and I think most of the time, it's a calming way of directing energy or dealing with stress. It can also be totally unconscious in it's application and therefore much like a "tic". The difference being, once you notice you are doing it, you can stop it. Tics are harder to do that with. I have a tic in my neck that makes my head jerk to one side at times. I can't stop it if I want to. It just happens.

Stimming can have almost meditative effect on many of us. It allows us to either escape or cope with a given situation. But how does it feel? I think it feels like anything feels. Take something that feels good to you and calms you and consider that.

Lets consider a stimming of rubbing ones hands together. Try it. Rubbing your hands together makes them feel warm. It may not calm you, but to someone with a sensory disorder it could feel as good as a Sunday back rub. It could bring calm to their mind and be relaxing to them. It's hard to say how anything feels with clarity because everyone "feels" differently.

It's best to remember that it's usually a positive thing and helpful to someone with autism in dealing with the world around them. It's usually rooted in the sensory of the person as well.

Are there negative aspects to stimming? Yes, if the stimming is disruptive, considered gross or unhealthy, or could put someone in danger, it would be a stim to try and work out of. Stimming is very hard to correct and can be a powerful habit. Can these habits change? Yes, in our children who are growing up with autism, their stims can change as they age.

Unless it's proving to be dangerous or hazardous to health, stimming should not be punished or heavily discouraged. Punishing the behavior will have very negative results and be extremely frustrating for all involved. Can you imagine punishing someone for rubbing their hands together? Who are they hurting? And it's a powerful impulse. You may as well punish them for breathing.

So I hope this brings some stim understanding to you. Feel free to post examples of stimming as you know it in comments.