posted Sunday October 4th, 2015
Sophie has been really into groceries lately.
Not eating them. Her four food groups are still rice, noodles, cheddar crackers and chocolate ice cream. I’m talking about groceries in the grocery store.
It began at Trader Joe’s about a year ago, when she developed an interest in scanning all the items in our cart. Not one to take no for an answer, Sophie didn’t even ask — just shoved the clerk aside and began pulling out wedges of cheese and baskets of strawberries, waving them over the censor and reaching for more while I did that Mom-Dance on the other side of the counter: “Is that okay? Are you sure it’s okay? Sophie, you better hurry, the line is getting longer. Let the nice man –”
Oh forget it. I began to seek out particularly cheerful-looking clerks and hoped for the best. Sophie walks out with a handful of stickers and a grin every time.
Last week she upped the ante at Safeway. We were grabbing a few items before a dinner party, so I hustled her through the store and past a million temptations (“Mechanical pencils, can I have those? And I really need a cute binder for choir. How about more cheddar bunnies? Can we go to Starbucks PLEASE?”) and into line, gratefully accepting her help when it came time to unload groceries onto the conveyor belt.
At 12, Sophie can still barely reach, but she was determined, stretching all the way over till it looked like she might actually flip herself into the cart if she wasn’t careful. But she’s always careful.
She couldn’t get around to the clerk’s side to scan items and her braces mean no chewing gum, so Sophie was clearly at a loss for a few moments for something to do or ask for, as she stood at the checkout counter. I was distracted, digging for my debit card, swiping, donating a dollar to the day’s charity because I’m that superstitious, when I noticed Sophie was no longer by my side.
I found her quickly. She’d moved to the end of the check out counter, and was quietly bagging our groceries.
I froze. “NO!” I wanted to yell. “DON’T DO THAT!”
From the beginning, when we first learned she had Down syndrome, I’ve been telling everyone who will listen how determined I am that Sophie never bag groceries.
It’s not that I have anything against grocery baggers. It’s honest work. And over the years, as I’ve discreetly (I hope) observed other people with intellectual disabilities bagging groceries, I’ve come to understand why it’s such a good job for so many. It’s done in a public place with constant supervision, bright lights, a lot of activity. The work is not easy and you’ve got to do it right or the eggs get broken, the bread gets smushed — so it’s valued, and that’s good. There’s conversation, music, community.
I still don’t want that to be Sophie’s only career option. I want her to do — well, anything she wants, right? Isn’t that every parent’s dream, what we whisper to perfect little babies as they sleep? “You can be anything you want to be!”
As far as I’m concerned, that’s a shitty thing to say to Sophie.
Lately I’ve heard a lot of talk about college programs designed for people with intellectual disabilities, and I think it’s awesome. I am confident that Sophie will be able to attend one, or do something else similar. It won’t be the same as what her sister Annabelle gets to do, there won’t be the same range of choices and brink-of-adulthood freedom — and Sophie will understand that.
And then what? What I don’t hear much is stories about people with intellectual disabilities having a lot of job choices once they do finish school. I’ve come to realize that it’s not so much that I don’t want her bagging groceries and more that I don’t want that be her only option.
But you know what else I don’t want? I don’t want anyone telling me that my kid can be whatever she wants. And I don’t want to tell her that, either. Because it’s a fucking lie.
I have a low threshold for inspirational sayings on a good day. On a bad one — keep me away from the Facebook Down syndrome groups and the memes in general. The other day someone posted an image of a cute, chubby boy with Down syndrome holding a sign saying, “I can do anything.”
Look, not to put too fine a point on it but I can’t do anything, either. Who can? I don’t see typical kids holding signs that say that because everyone knows it’s bullshit. About the only place it pops up for the rest of us is on the occasional fortune cookie. But for a little kid with Down syndrome it’s cute, because really, what sort of things will that kid want to do anyway? It’s safe, the kid doesn’t really get it, and the parents feel great. But really, what’s the point of the hyperbole? It might make you feel good as you scroll through your feed but in real life it’s just gonna kick you in the ass when you’re down.
I stood at the check out counter, debit card dangling from my fingers, staring at Sophie as she calmly bagged our paper napkins and instant pudding. How did she even know what to do? Is this, like, her birthright? Is it a genetic thing, that she’s drawn to this? I’ve never seen Annabelle do it. I know I never did.
I shook my head hard, grabbed my receipt, the bags and her hand, and headed out of the store.
Maybe Sophie will bag groceries for a living, I thought as we climbed into the car. Maybe that’s really what she’s suited for, what she’ll want. It’s so hard to know now. Or maybe she’s just a kind and helpful person — and a bit of a control freak.
Twelve is a hard age. Sophie is beginning to show physical signs of adulthood but she’s still such a little girl — twirling her hair, sucking her thumb, watching Peppa Pig. I’m pretty sure she was the only seventh grader who held her mom’s hand at “Take Our Parents to School” day at the junior high this week.
When I was searching for just the right junior high, a special ed teacher at a charter school who bragged that she had 20-plus years of experience with kids with special needs told me with great confidence that kids with Down syndrome stop progressing intellectually at 12. I looked it up and saw how controversial (and unproductive, not to mention hurtful) that comment was and soldiered on, ignoring it — for the most part. Sometimes it creeps back in, on a particularly bad day.
There are fewer and fewer bad days (knock wood) and Sophie keeps learning and growing. She is making friends (sort of), she is keeping up at school, her conversations are getting so mature and so (very slowly) are her television choices. She doesn’t always pitch a fit when I tell her to get in the shower or pick up her clothes (though she might be annoyed in an appropriate tween-y way) and the other day, when she overheard me telling a friend I needed to make a Power Point presentation for a conference I’m attending and admitting I’ve never made one, Sophie called from the backseat, “I’ll help you Mom. First thing you need to do is pick a background.”
So what background do I pick for Sophie? I guess it’s somewhere between “all cognitive growth stops at age 12″ and “you can be anything.” Finding that place is going to be a lot harder than building a Power Point presentation — even with Sophie’s help.