Parents make decisions all the time—from what diapers to use, to where to send their kids to school, to how their children get disciplined. That is something we all have in common.
When you have a child with special needs you make even more challenging decisions—like what therapies your child should try. The list goes on (and on, and on, as they get older and their needs get more complex).
Last week, I had the opportunity to discuss Syona's Botox injections on Canada AM. The focus of the segment was about the use of Botox to help kids who have spastic muscles from cerebral palsy. I spoke from the parent perspective and Dr. Darcy Fehlings from Holland Bloorview Kids Rehabilitation Hospital spoke about the clinical and medical side of things. Dr. Fehlings is one of the most family-centred physicians I’ve ever met and she truly cares about the kids she works with.
I’ve written about our experience with Botox over the past year—from the impact it makes, to how difficult it is when it starts to wear off , to the emotional ups and downs that come from a temporary procedure. In addition to Botox, we’ve made a number of other decisions about Syona’s care, including what medications she has, what types of therapy we undertake, the frequency of said therapy, etc. We research, we discuss, we weigh the pros and cons, we ask Syona and then we make a decision based on what’s best for us at this point in time.
Despite being terribly nervous—and not being a fan of the camera—I immediately said yes to the opportunity to appear on Canada AM. There are three reasons why I continue to share our story so openly. The first is personal. When Syona gets older, I want her to grow up knowing how proud I am of her. The second is because I want to do my part to ensure that parents of kids with special needs realize they are not alone—that there are families in similar situations out there. The third reason is that I think it is so important that issues relating to special needs are covered in the mainstream media. Sure, this particular opportunity was about a somewhat controversial treatment for spasticity, but I'm hoping that we continue talking publicly about the variety of issues relating to disability. I think it helps bring issues relating to disability into the spotlight, and makes even those who don’t have a personal connection more comfortable. And this only results in more inclusivity.
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