Tuesday, August 19, 2014

Let him do it his own way


A toy dog arrived in the mail the other day, sent by Hasbro—a FurReal Friends Get Up & Gogo My Walkin' Pup. Max was curious at first but by yesterday afternoon, infatuation had set in and he was walking Maxina (Sabrina's name chose) around the house on a leash. She wags her tail as she walks, sits on command and makes little dog noises. This is both very cute and a welcome diversion from his firefighter obsession. 

Max had been spending quality time with Maxina in his room last night as I worked my computer when he walked into my room carrying a little green bag. It was one of those crinkly diaper bags, a holdover from his days of dirty diapers. I couldn't wait to toss the box of them because it would mean Max was fully potty trained, but now that he's holding out through the night I keep forgetting to throw them away because, life. 

Anyway, in strolled Max with a crinkly bag. He pointed to his butt and said something, and I realized he was telling me that Maxina had made doodie. I started laughing and couldn't stop, and then Max began giggling which always makes me laugh even more. 

"What's so funny?" Sabrina wanted to know, and when I told her she cracked up, too. 

"Max! Let me show you how to pick up the poop!" she said, snatching the bag out of his hand and running into his room. 

"Sabrina," I said, "let Max pick up the poop his own way." Because these are the seemingly ridiculous statements you utter when you are the parent of a kid with special needs but, really, Max needs to figure out how to do stuff on his terms. 

Ignoring me, Sabrina opened the bag. "You want to pick up the poop like this," she explained, making a grabbing motion at the floor, "then turn the bag inside out so you don't touch the poop!"

"Sabrina," I said, "please, let him do this his own way. He has to make it work for him."

I so love that she wants to teach him. Often, Max does need a helping hand, like when it comes to opening boxes, jars or packages, getting something off a shelf or any number of other tasks that require fine- or gross-motor feats that exceed his muscle capacity. When possible, we use adaptive equipment like a special spoon (you might recall my rant about that), foam tubing for pens and a holder that attaches to a cordless phone.

But there are things Max needs to figure out for himself, because his muscles work differently than ours do and showing him the "right" way to do things typically doesn't work for him. Like handling those green little bags, the kind that can be tricky to open even for people who don't have issues with fine-motor skills 

Max walks up the stairs his own way. Max grasps toys his own way. Max holds his fireman hat and puts it on his head in his own way. This is going to be the story for the rest of his life; his cerebral palsy isn't going away and he will forever have to figure out how to best manipulate his hands and limbs. 
This is why it's so important right now to encourage independence, not codependence—which he will happily fall into if we don't push him, as we've seen with his eating. 

Years ago, when Max was about six, I visited his school for a meeting, stopped by his class during lunch time and literally gasped when I saw him sitting at his desk, contentedly spooning rice and beans into his mouth. 

"When did he start feeding himself?" I asked the teacher, because at home me, Dave and our babysitter were feeding him all his meals.

"Oh, he's been doing that for months now," she said. And just like that, we were on to him. 

So, yeah: I wanted Max to figure out a comfortable way to handle a poop bag. 

"Okaaaaaaaay," Sabrina said, reluctantly, and handed the bag back to him.

Max grasped the bag and swiped, effectively pretend smearing the pretend poop all over the floor but, hey, it was a start.  

"It smells!" he said, and I nodded, holding my nose for good effect. 

Max walked over to his garbage can and tossed the bag in. Heck if I was going to notify him that it was going to stink up his whole room. 

Later, I brought him a drink of water and he insisted I give some to Maxina. Then he wanted to make sure Maxina, positioned next to his pillow, had blanket covering her. He evidently wasn't concerned she'd pee on his bed at night.

Pure sweetness. Yet tomorrow will bring more challenges, ones I want Max to rise to. Maybe we'll be giving Maxina some pretend food, and Max will have to figure out a way to handle holding a scoop of pretend food and dump it into a bowl. I don't just want solutions handed to him on a silver platter. I don't always want for to us to be the solution. 

He needs to do it his way.