Dear mom of a typically developing child,
When your son outgrows his sneakers, and maybe he’s ready for rollerblades, you scan Amazon for ten minutes while the noodles boil, click a few buttons, and you’re done. Worst case scenario you actually have to take him to Walmart to try things on.
And I know this sucks – we are all overwhelmed and have too much to do already. We work all the time, we have no time for ourselves. We all have sleepless nights. We worry about our kids’ health, and futures, and educations. I want for my kids what you want for yours: to thrive within our warm and close-knit Jewish community, to learn and grow and find their place. But there are differences in our experiences too, and I want to share them with you.
When my son outgrows his shoes, his $2,500 custom orthotics, it takes multiple visits with a physiotherapist, and with an orthotics maker. And then there’s also the paperwork – long checklists and signatures and copies and “keep the receipts”. And rollerblades? His wheels? Forget it. So many meetings, trial runs, stacks of paperwork, and poof! EIGHT MONTHS LATER his wheelchair arrives!
Was your Amazon order next day delivery?
Okay, something harder than shoes: register for summer camp. Maybe you talk to the director, maybe you choose a few different camps. It takes time you don’t have, but still, it’s all online and relatively straightforward. It’s expensive, but it’s the cost of being a working parent.
I register my kid online too, which might actually be easier for me than for you because he has fewer options. Really only one, the JCC camp, the only camp where I feel he is known and loved and will be safe and cared for.
And then I have to apply to another Jewish community agency to fund a support person so he can be included with his age group at JCC camp. (All my kid wants is what your kid wants. To go to camp. That’s all. He just wants to go to camp.) And thank God there is that agency, it’s a mechayeh! But to get a decent support person I have to top up their salary, which is covered by a different program, but read on…
Next challenge: You’re going out! It’s date night or work night. You text a babysitter, a teenager you trust whose family you know, $14 an hour. I have to hire someone who understands feeding tubes and behaviours and toileting routines, $31 an hour.
But there’s government cheese for that! You get some no-strings attached cash for your kids from the government too: the CCB (Canada Child Benefit). It shows up in your account every month, and you can do whatever you want with it. Amen.
I get the CCB too. And I get other things, but they require accountability. You can only use them for certain things, and you have to submit receipts in order to get the money back, which notoriously takes months, or you have to account for the money after the fact – you should see the Excel files I have to maintain.
Curious? Here’s what my son gets (I’ll just use the initials, hamayvin yavin, those who know, will know): OAP, ADP, ACSD, SSAH, ERF, ISGP, CA, LHIN, FMHC. (There are moms reading this right now who know exactly what all these letters mean, and are remembering the receipts they are late in submitting.) It adds up to a lot of money, and a lot of time and meetings and arrangements, and a lot of paperwork. Did you know that in addition to being a full-time rabbi and mom, I’m also a part-time accountant?
So true, you pay for your babysitter out of pocket, and mine is covered. But it’s still not enough.
As your child grows up, he becomes more independent (10 years from now he won’t need a babysitter anymore) and you are liberated to grow in your career outside of the home. As my child grows up, he needs more support, and everyone knows that what is available is not enough, and that “the system” is designed to leave me no choice but to quit my job and become my child’s full-time caregiver. Just look around, that’s what happens to everyone, isn’t it? Maybe you don’t see it, but I know a lot of these moms. What if that’s not what I want? I am ambitious, just like you. There are things I want to do. You don’t retire as Rabbi Emerita and become a Canadian senator after a long illustrious career as your child’s caregiver.
So, can you spare a little compassion? Can you walk a mile in my shoes? Can you allow yourself to imagine all this, just because I want my kid to do the things that you want your kid to do?
And these are the successes. Summer camp works out! It shows that when we work hard, and a community is committed to inclusion, we can pull it off.
But there are lots of places in our community where your son goes that my son still can’t. It will take a lot of work to support him walking hand-in-hand with your son throughout every opportunity in our Jewish community. This is the work of “inclusion” that our community is committed to. And sister – I’m tired. Can you carry the water a little? Can you advocate? Can you push for change? For my kid? He’s just a kid, just like yours.
February is Jewish Disability Awareness and Inclusion Month.
Deborah Zuker is the associate rabbi of Kehillat Beth Israel in Ottawa and the cofounder of JOIN: Jewish Ottawa Inclusion Network.