two young boys sitting side-by-side, hugging while wearing superhero capes.
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Commitment, Creativity, and Courage

Looking ahead to our future accessibility needs

I often hear in the news that homes, buildings and public spaces lack proper accommodations for people with reduced mobility. Yet, when it comes to movement, the addition of something as simple as an access ramp at a business entrance can make all the difference. Is it merely a lack of vision or awareness? I don’t know.

Jasmin is still very young and physical access isn’t an issue—for our family. He can be carried around just like any other young child. For outings, I use an outdoor stroller as I did at the same age with Ethan, my eldest son. Jasmin will continue to grow and our environment will have to adjust to the needs intrinsic to SMA.

I have the sense that, in general, people ignore the financial burden of having a child with unique needs. Our environment will have to change as Jasmin grows. Our house, with only one bedroom on the ground level, is not suited to meet our child’s needs. Nor is there an access ramp to the steps inside and outside our house. As for the family car, it isn’t built to accommodate a wheelchair, which we will need in the near future.

While the challenges of physical accessibility may not yet be an issue, there is a lesser-known accessibility problem that relates to the outside environment. We cannot walk around in places that are overly polluted or have too much traffic.

We cannot, unfortunately, control what happens on the outside; the inside, however, is on us. By nature, I am an anxious person and I can tell you that our house will pose a challenge in the future.

“We are very conscious that we will have to make adjustments to our living space if we want to keep our child at home with us. We will need to be committed and seek assistance from governmental programs to support us in our endeavours.”

So yes, we will greatly feel the effects of physical accessibility on our lives. But when I see my child smile, I tell myself that, with help, these challenges are not insurmountable. We need only adjust to them slowly, one step at a time…one smile at a time.