Tuesday, November 18, 2014

This is what Sensory Processing Disorder looks like.

This is what Sensory Processing Disorder looks like. It's probably the least concerning on his long list of diagnoses, but when we can use it to our advantage to help him through his other hurts, we do. I had heard of kids who were so sensitive they couldn't stand seams on their socks or tags on their clothes, but I had never heard of hyposensitive kids — the exact opposite, who crave pressure and touch and sensations. They're the kids who are always crashing into things, always moving, always seeking more input — only his is to the extreme. He no longer bangs his own head (that was frightening to see), but still uses his teeth and fists and open hands to get pressure from other people, and of course hitting, biting and slapping don't go over well in a house full of people.

I was able to pull him out of an epic meltdown last night (Can we still call it epic when there are many in a day?) by using his sensory issues. Sometimes it doesn't work and some of us end up getting hurt. If I can catch him at just the right moment when he is able to signal to me that pressure will help him, it's always worth a try.

His signal last night was headbutting me in the side (while screaming and flailing and gnashing teeth), but I know from experience that it meant he needed pressure. Fortunately, this time none of the other kids were in the house. When you crash into your brother who has serious challenges of his own, it results in a smackdown. Because he had only crashed into me and I was somehow feeling particularly patient, it turned into soothing. This time anyway.

I pushed a big heavy Bumpidoodle pillow down onto him while doing what we call "cleaning your ears." We discovered a couple years ago that he loves getting his ears cleaned. More pressure. So now I ask him if he wants his ears cleaned and even if a Q-tip it is nowhere in sight, if he feels just so he will lay his head on my lap so I can firmly massage his ears. When I say firmly, I mean other kids would be indicating, "Ow! Stop, Mommy, you're hurting me!" But he likes it, and if I am not firm enough, he digs his skull into me to make it firmer. So I alternately squished down on the pillow and rubbed his scalp while "cleaning his ears." It's a delicate balance of giving him the pressure just where he needs it while not letting him feel like his movement is restricted because THAT TICKS HIM OFF. It's picking up his subtle cues to get it just right. If he moves an arm, that means he needs the pillow pushed down harder or heavy blankets stacked on top. If he starts to lift his head, the other ear needs massaging. It worked. This time.

What you can't see in the picture are the other pieces that had to happen just right for this to work. The butterfly movie playing in the DVD player — not too loud, because sounds ramp him up. Not too much action, or his body mirrors the action on TV. It was right at the metamorphosis scenes, which couldn't be more appropriate.

You can't see the sensory items he was hoarding in his arms under the big pillow. If they weren't there, everything else would have fallen apart. I call them sensory items because over his four years of life, we have finally figured out that he needs these items to feel right. Needs them. Like how you and I need air to breathe.

The things he needs all have something in common. He likes the feel of rubbery things, of plastic, of heavy paper, of adhesives. To you, it would look like he's holding onto a bunch of trash. I mean that literally, because he was holding onto a large black trash bag full of goodies pilfered from an afternoon visit to Grandma's and Grandpa's house. They get it, and let him fill his bag.

Inside his black trash bag was a white trash bag, a paper sack, an empty 2-liter of Diet Vernors, a big yellow punch ball covered in stickers and four aluminum pie tins on which his grandmother had obligingly drawn with a Sharpie the characters he requested (demanded?) — a horsie, a butterfly, a flower, another butterfly.

Everything was just so. And holding them under his heavy pillow, watching butterfly metamorphosis, getting his ears rubbed and his scalp massaged, allowed his brain to calm and his body to rest. For a few minutes. Until it was time to start over.

Thursday, May 1, 2014

10 things you wouldn't understand (unless you're also raising a child with classic autism)


  1. That when someone gives your child a book and isn't sure if they'll like it, you think, "It's OK, really. They all taste the same." But you don't say it because it would freak them out.
  2. That when your autism support group decides to hold a social activity for children so they can feel included for once, then plans something that's only appropriate for kids older than yours, you feel like sticking a fork in your eye.
  3. That when you see a mother happily walking alongside the big river with her child, looking at the boats and birds, you can't help but feel sad that you can't walk with your child along the water without a very real fear that his lack of danger awareness will land you in a tragic story on the 6 o'clock news. And you're not exaggerating.
  4.  Poop smears. This is a thing. A common thing.
  5.  That hearing someone complain their little darling is such a picky eater because she won't eat her vegetables is annoying when your kid literally eats three foods.
  6.  That you know it comes from a place of love, but you can't stand to hear someone tell you about one more supplement, diet change or technique that is supposed to help kids with autism. This isn't a virus. There is no cure.
  7.  That when you see your own child hurting an animal, it scares the crap out of you.
  8.  That watching your child put on his own shirt for the first time at the same age as your friends' kids are learning to read is hard. But you are just as proud.
  9. That every little thing is a monumental task. Breakfast. Getting dressed. Getting in the car. Riding in the car. Getting out of the car. Dinner. And sometimes you're just tired of it.
  10. That you long to once, just once, be a normal family for a day.