When the invite came from Stacey to make another contribution to her blog, my answer was absolutely. No hesitation. No clue what I would write or what I had to say, but I knew something would surface.
Then came Ashley Bristowe’s My Own Blood and I knew what I wanted to write. WANTED TO – but could I? Could I publicly declare how crummy I’d been?
This memoir cracked me wide open in a way I couldn’t anticipate. I am deeply curious about people’s lives and experiences, it’s a handy trait for a therapist. Ashley throws the doors wide open and invites us, not only into the inner workings of her family, but also the struggles she faces internally.
If you have a child with a disability – read it. If you have a child – read it. If you love a child – read it. If you used to BE a child – read it.
I would love to see this book as mandatory reading, not only for every professional who works with kids, but for EVERYONE. Because here’s the thing: for centuries we have been expecting people with disabilities to integrate and conform (or be hidden away). But it’s high time (well PAST high time) the REST of society begins to not just tolerate, but EMBRACE people with disabilities, and their families. Make space. Make room. Experience what they (and their families) have to teach us, about relationships, about sheltering one another, about our broken systems, and about how we need to Show Up for others collectively bring some desperately needed respite.
What I learned from Ashley was that I had been shitty. Not in an active, mean way. But in a neglectful way. I didn’t show up for Stace and she was too gracious (and maybe too exhausted and depleted) to say, you are LETTING ME DOWN. Oh, I had the excuses all right; I had three young kids, I was working, we were renovating our house on a shoestring (by ourselves, no tradespeople), I was stretched. I was hanging by a thread some days. What I didn’t know was that Stace was hanging by a thin gossamer spider web filament. If I paused to think about it, for even a second I would have realized that. But I didn’t pause. I didn’t think about her. I didn’t show up.
Then we lived in different provinces and the distance between Toronto and Calgary seemed too big to bridge. I couldn’t drop in or drop things off (i.e. meals), my financial situation raising a young family in an expensive city meant I couldn’t send money. The news I had of Stace was via my Gram (our grandmothers are sisters). We hadn’t really discovered each other yet. But I knew she had twins (babies number two and three for her) just a week before I had my first. Although this is all true, it doesn’t excuse my ignorance.
I could have texted.
I could have sent letters.
I could have called and said “how are you” and listened and been there.
And I didn’t. I thought, “what’s the point, I can’t actually help or change anything?”. But I could have offered. I could have reached out. In the wise words of Richard Wagamese I could have said, “Fuck, eh?”. I could have held space for Stacey to vent or rage or sob. Now I will do better.
Reading Ashley’s account was in some ways like a manual of WHAT I could do better – what we could ALL do better because it highlighted the struggles that we don’t experience if we have healthy, neurotypical kids. My Own Blood opened my eyes to the cost – the overwhelming, ever-present, relentless and enduring cost of kids (who become teens, then adults) with special needs. Way beyond diapers and bum cream and formula, we’re talking about special foods, aids, therapies, services, specialists, medications, home repairs and accommodations, specialised (child/teen/adult) care that never ends and not just for a parent’s respite, but just so that they can work, or shop or go to an appointment and require a helper. Let’s not forget planning for the child’s future: housing and care. The list goes on and on. We’re talking HUNDREDS of thousands of dollars for many kids with disabilities.
Money can’t buy happiness. But it can buy the security of knowing you can pay your basic bills, your rent or mortgage, childcare, and the things your children require to have their needs met in a society with governments that don’t recognize this. The relentless strain of bills piling up adds a pressure to an already overtaxed nervous system. For many parents of disabled kids, PTSD is real and for some, it may be more accurate to call it continuous traumatic stress.
So how do we show up? How do we do better?
“What do you need?” in and of itself can be a hard question. It asks parents who are already stretched to the brink to a) ask for help and b) THINK some more when they are almost too exhausted and overwhelmed to think straight.
So instead, throw it out there and see what sticks, offer a few options, or make a regular schedule (I’ll drop off a meal every second Sunday; I’ll shovel your sidewalk each time it snows) that you follow through on.
Here’s a short list of opportunities to contribute to our families that need it most:
- yard work
- home repairs
- dog walking
- car maintenance
- overnight relief
- come use my pool/hot tub/cottage/trampoline
- accompany the family on an outing or appointment (an extra set of hands would be A+)
- lastly: hold space, check in, call, text, really listen without trying to cheer or fix or optimise or look-on-the-bright-side
We need to do better as a society for families with disabled kids. We need to show up.
Jennie is a Toronto based Clinical Social Worker in private practice. She enjoys working collaboratively with clients to help them gain clarity, insight, and meaning in their lives. When not at work, Jennie recharges through wandering the woods, devouring books, or backcountry canoe camping with her family.