Parents of children with disabilities face "back to school" with a particular kind of terror. That's because we know everything can be pulled out from beneath us. All the things that went right last year -- the learning gains, the tiny buds of confidence, our child's peace of mind -- can be erased by a change in teacher or principal, a new bus route, a missing piece of technology, a program that doesn't fit.
Like a wooden tower in the game of Jenga, our kids need just the right balance of supports to stand. Pull out a block without care and the whole structure comes crashing down.
So as the summer ended my chest knotted up in anticipation of the first week of school.
Two weeks in we're still standing, and I feel touched by grace.
"He seems much calmer, is paying attention more to when people speak to him, and he's walking sooooo much better!" wrote his assistant. "I also see that his right ear is healed -- wow! What a success!"
Most important, Ben's in quite good spirits. He seems happy.
He's able to communicate with me in his own unique code.
Example: He wants a hard-cover Avengers book we saw at the book store once, but have been unable to find on recent trips. So he'll bring me the Avengers book he has, sign "other," then sign "where?"
He likes an old education software called Cluefinders. He found it while surfing Youtube.
I just got him one about Volcanoes that's for Grade 5. But he wants a different one. So out of the blue he signs "4," then gets the Cluefinder game case.
Grade 4? I ask.
I look it up online and find the Grade 4 game is called Puzzle of the Pyramids. He'd found it earlier on Youtube and was most interested in that one. Now as soon as he signs 4, I know he's talking about Cluefinders Puzzle of the Pyramids. Cool eh?
He's more independent. At night he'll get changed in his room, throw his clothes in his basket, put his hearing aids and glasses in the drawer, put on a dressing gown and do up the belt (yeah! He has the fine motor skills to do up a belt!). Then he can get in the bath with the help of a bath bench.
He went on three roller coasters at the Ex.
He can add numbers up to 7. He just brought home the first book of adding 8 and he's so thrilled when he gets it right. After his last session the owner called us in to tell us how well he was doing. It's hard for him to get started, but once he does he goes through the books quickly. A staff person has been sitting with him but the owner feels he can sit amidst the other kids now.
These are all little things that would barely register when parenting a typical child. But as Anchel Krishna writes in her Today's Parent blog, one of the gifts of parenting a child on his or her own unique timetable is that you notice every development. You celebrate it. You don't take it for granted.
"Mom." "Mom." "Mom."
Instead of yelling for me Ben's using the Proloquo voice on his iPad to call me while he's doing his Kumon. No matter what I'm doing, I leap into the air and race over so that he knows it's worth it.
When we visited one of my brothers at a restaurant on Saturday he was relatively well behaved -- even though I know it's hard for him to hear in a noisy restaurant.
He wants a new PC laptop because our Macs don't play some of the games he likes. He's eager to make some money for said laptop but not thrilled with the housework options proposed.
I asked our contractor, working on our basement reno, if there was something small Ben could do. The next day he appeared with a small power screwdriver and drill -- to fit Ben's tiny hands -- and pre-cut pieces of wood tacked up together for a bird house. Ben was very interested in the tools, but not so interested in the sanding which was the next stage of the project. D'Arcy and I conferred and recognized that Ben loves screwing in nails, so perhaps we need to pull apart the pieces of wood so he can do that step first. He'll also have a role filling in nail holes in our basement floor boards and trim.
Last night we picked up a pair of safety goggles (see photo) for Ben's construction technology class at school.
On the way out of Home Depot, he insisted that he needed a coke. Then some wine gums. And finally an expensive hard-cover recipe book for creating decadent, icing-laden cupcakes. Despite his protests he put the items back when told to.
Ben is excited about his grandmother's 90th birthday party and his friend Sasha's bowling party as well. He never misses an opportunity to celebrate.
For the first time in two years, his right ear doesn't have a bandaid on it. A mosquito bite from a couple of summers ago that he wouldn't let heal has finally closed over. We still have trouble with him picking at other scabs, but it's an improvement.
Ben still loves Jessie, the cowgirl in Toy Story -- and any other female movie character with red hair (like Katniss in the Hunger Games).
If Ben could change the world, I'm sure he'd make it more Toy Story-like. People of all shapes, sizes and abilities would be included. No one would grow up and throw away their childish pursuits, sense of adventure or, most important, friends.
No, friends would always stick together. Ben would reverse Jessie's lament about being discarded -- "When somebody loved me, everything was beautiful..." -- into a way of making sure everyone belonged.
Recently I was listing off my latest worries about Ben to Marjorie. "He has his own Cinderella stories," she said.
And he does.
For a person who has experienced so many losses, Ben is one of the happiest, most forgiving and genuine people I know.