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I have to remember some aren’t. But often, parenting a child with autism can be a series of irrational arguments:
While reading a book:
“The blue dog is on the yellow tree.”
“I want the blue dog to be on the GREEN tree!”
“Sweetie, I can’t make the dog move.”
“ON THE GREEN TREE! GREEN TREE!”
Turn page.
Getting dressed:
“Lay still so I can change your diaper.”
“I DON’T WANT YOU TO CHANGE MY DIAPER! I WANT TO GO POTTY.” “Great! Let’s go!” Take his hand — try leading him to the bathroom.
“I WANT TO WEAR A DIAPER! I want to be a BABY!!!”
“OK, lay down and I’ll put the diaper on.”
“No! I don’t want to wear a diaper!”
Bucking, screaming. Ten minutes later, finally diapered.
Petting the cat:
“I want to pet the cat.”
“OK. Be gentle. Stoke his back like this, see?”
Smacks cat. Cat runs away.
“I want to hit the cat! Bring the cat back here!”
“But the cat doesn’t like it when you hit him.”
“He DOES like it! I want to hit the cat!”
A three-inch-long object has lifted me out of a pretty dark week.
No, it’s not my phone.
It’s a surgical brush that we run over Simon’s arms, legs and back about every 90 minutes.
It sounds crazy, but it WORKS.
It gives him sensory input, which he really, really needs. There is a noticeable difference in his mood and behavior. He is sitting next to me right now, calmly watching TV without kicking me or trying to grab my phone, which doesn’t sound like a big deal, but IT IS.
So instead of moping around feeling sorry for myself, I’m hopeful. If such a simple thing can make such a huge difference, think what all the things we haven’t yet tried can do.
It’s funny how public places, especially those meant for children, are carefully laid out so those with disabilities can get around easily.
That is, kids with physical disabilities.
For autistic kids, the claustrophobic mazes and tunnels, low-ceilinged playrooms and jumble of screaming children crowded around every feature are basic nightmares.
The children’s museum is a mecca of childhood playtime where everything is meant to be touched and interacted with. Where other children happily flit from feature to feature, forgetting an adult is anywhere nearby.
Other children. Not Simon.
His sweaty little hand grips mine tightly. He offers a throaty scream intermittently — a signal to me that it’s all just too much for his system. He eventually crawls through the tunnels in the ant hill, but only if I’ll come along.
He’s of course drawn to the features where he can drive something — a truck, a car, a boat. But inevitably, there is another child already at the wheel. He is pretty good today about waiting his turn, but refuses to share once he’s seated. Toddlers, especially, tend to violate his personal space bubble.
The other kids like it here, but not as much as the zoo or the blow-up jumpy place, they say. Clare complains that I’m not spending enough time with her. I am not, but she doesn’t need me.
He does.
All in all, it’s a pretty good day with no major meltdowns. But I’m left wondering if Simon really had a good time.
I also wonder if I should, or should not, be exposing him to situations like this.
Most Fridays, our time for Mommy-kids fun, are a few hours to just play and see and do and forget about the rest of the world. But today, all I could think about was the autism. Around every corner was a booby trap set for Simon’s sensory system.
I’m glad the older two weren’t super excited about the place. I don’t think we’ll be back for a while.
So. This. is. the. big. week.
We find out Thursday what the experts say about Simon’s beautiful little brain.
The past few weeks have been excellent, and I’m hopeful that he’s turning a corner. He transitioned to a big boy bed without any trouble at all. He is engaging in imaginative play like crazy. He’s talking up a storm.
But it seems like every time I get hopeful, something smacks me in the face.
So knock on some wood with me. I’ll let you all know Thursday what the verdict is.
