We do a lot for Angus. More than the average amount that parents do for their eight-year-olds. Angus’s laundry list of diagnoses means that a lot of things are more difficult for him than for other kids his age. He has trouble with executive function, so every task needs to be broken into bite-sized pieces. He requires reminders and oversight. His DCD (developmental coordination disorder) makes anything that necessitates motor skills a challenge.
We do things for Angus because he legitimately needs our help: cutting his food into bite-sized portions, washing his hair, buttoning his shirts, twisting his socks so the heals line up, brushing and flossing his teeth. And sometimes we do things for Angus because it’s easier for us to do them than have him do them himself.
It takes patience to be a parent. Heaps of it. And for those of us with neuro-diverse kids, the patience required is more extreme. Zen-like patience. It’s a learned skill, not an innate one, and sometimes I’m a pretty slow learner.
When it takes two minutes for Angus to stack a book on his bookshelf so it doesn’t fall over when he moves his hand, and when I see that on the floor there are a stack of 20 more books, it is a lot easier for me to pick up the stack and shelve the books myself. Every morning, after a night of kicking and tossing, Angus’s sheets end up in a heap on his floor. Because his bed is pushed against the wall, a lot of bending and climbing is required to remake the bed. Bending and climbing, and tears of frustration, and words like impossible and hopeless. Most mornings I make Angus’s bed myself. In fact, most mornings I come home from dropping Angus off at school, collect the piles of books from around the house and shelve them, then make his bed and straighten his room. And then I berate myself for failing to instill responsibility and independence in my son.
On particularly bad days, I imagine a future in which my adult son is not able to do anything for himself, and I am old and frail and equally incompetent. These imaginings are so bleak that I generally resolve to make Angus do more, much more, for himself. Maybe that night I get him to lather his own hair with shampoo (and then dab at his face with his towel when the soap inevitably gets in his eyes and he begins to howl). The next morning there I am again, shelving books and pulling up his duvet cover.
I talked to Angus’s intervention worker about goals. Chores! I told her. I made a list: dust-busting the stairs, washing the windows, setting the table for dinner. Yesterday, she talked him through washing the living room windows. But after Angus’s tub, I toweled him off, helped him into his pyjamas and blow-dried his hair. Shuffle forward, shuffle back.
Today, when we walked to school I talked to Angus about a new schedule—using photographs of him performing the steps of his morning routine—and plastered, poster-sized, on our wall. Imagining the tower of to-do’s made his chin start to quiver. I sympathized. In my own head I was calculating how much earlier I would need to wake up in order to assist with this stab at independence. But worth it, I tried to convince myself. Soon, this poster will replace my nagging, and soon after that Angus won’t even need to refer to it. I did feel it for a moment: a flicker of hope.
Then I went on the internet and read child responsibilities by age and discovered that four-year-olds should be folding and putting away their own laundry and kids Angus’s age should be able to vacuum, sew loose buttons on their shirts, and write down phone messages. It seemed these articles were written by women who lived in a parallel universe. Or maybe by bots created to discourage me. I, personally, am happy that my child no longer needs to wear noise cancelling headphones when I vacuum near him.
I remind myself: Angus is eight. He has years of learning ahead of him. I remind myself: researching child development on the internet has never once been useful or encouraging. I remind myself: there are so many milestones Angus has reached that at one point felt impossible. I remind myself: my kid just washed the windows!
Shuffle forward, shuffle forward, shuffle forward. Even when it doesn’t feel like we’re getting anywhere, we’ll keep moving.