Thursday, March 31, 2016

Maybe if I squint, reality will look different

By Louise Kinross

It must have been because I had just made a mental note that things were going quite smoothly for my son with his post-high school transition and he was quite happy.

It was that same night that I learned from a private physio that he had a curved spine.

I had been trying for months, to no avail, to get someone in the adult system to see him due to concerns that he was walking with a crooked gait.

In the last 24 hours he’s been seen by a specialist and had x-rays taken and I’ve learned that many youth with my son’s syndrome have had surgery for scoliosis and/or have had exostoses—benign bony growths—removed from their spines.

I recall seeing scoliosis listed as one of dozens of potential symptoms associated with my son’s condition. But for some reason I never connected it with my son as he’d had no issues in this area and they typically show up in the teens.

I went onto the Facebook group for parents of kids with this syndrome last night and asked about others’ experiences and was astounded by the number of messages that came back.

So now I’m sitting with the fact that there may well be another surgery or intervention of some kind in my son’s life. His last was last summer.

I took the physio’s suggestions and went online. I ordered lateral supports to try to keep him straight when sitting—at great cost—from the U.S., as well as a special stool. Then we went to Walmart and purchased the table she recommended. Oh, and on the way back, we stopped at Foster’s shoes to ask them to put an additional lift on my son’s shoe.

The lateral supports, which came yesterday, aren’t working that great, but who wants to pay even more money to courier them back to the U.S.? Thankfully, a parent on the Three To Be Facebook group told me about a brand that was cheaper than the original product we looked at. I can’t help wondering why these items aren’t available here? Is it necessary to order from the U.S.? Or are these companies benefitting from my sense of desperation and urgency?

The other thing the specialist said was that my son looked like he was in pain because he’s carrying his body in an awkward position. My son has a very high pain threshold. Recently he’s been asking constantly for back rubs, which he signs as “chop chop.” So we got out the Tylenol last night.

And I almost feel like if I just keep this whole thing to myself, maybe it won’t happen? You know—the magical thinking that Joan Didion talked about in her memoir about her husband's death?


Hugs. I wish I had solutions for you. But I don't. It's just the way it works sometimes in the lottery of life. When someone has certain conditions, the number of "bummer" tickets in the bag are higher. It's as unfair as it can be, but that's the reality.
That you have a job you so love, excel at doing, and can help your son is a triple. What ever comes up, you know that you have the best chances of the best solutions because of who you are and what you do.

I'm hoping this works out.

Scoliosis is no fun. Sophie has a 90 degree curve and, after extensive research, decided to just leave it alone. For someone like her, the surgery would not provide any significant benefit. However, just so you know, there have been some great advances in some areas of spinal surgery (and I must emphasize **some** areas) and maybe your son may be able to benefit from the minimally invasive sort that is out there now. Whatever you decide, I wish you well. Claire

Hi Louise,

The Orthotics Department, at Holland Bloorview, is still available to Ben and you. Ask John about a back brace to aid with sitting and walking. A crutch or cane may also help.

Wishing I could be of more assistance,