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Spinal muscular atrophy Caregiver

Dany S.

Mom

Adapting to life outside our home

I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think most other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled. Now, before we head to someone’s house for a play date or out to dinner, my first thoughts are:

  • Are there stairs?
  • What’s the seating situation like?
  • Do they have high chairs or some kind of seating that is more supportive?
  • Is there carpeting or smooth flooring which would make it easier for the kids to move their wheels?

You get the point. It goes on and on. I know that there are just going to be some things that we can’t do with the kids, and some places that we just won’t go because they will not be much fun for them (hello, bounce houses!). But there are some strategies that we’ve put in place to help prevent some of the inaccessibility problems from arising.

First, this may go without saying, but we get as much information as we can about where we’re going. We ask the questions above (and more) until we feel we have a good handle on what we might be walking into. The Internet is our best friend and one can find a review or blog written about practically every topic. We’ve found priceless information this way. For example, whether a restaurant really is accessible, the best ways to navigate an amusement park, and special accommodations that a venue may offer─if you know what to ask for.

Second, I always have an empty notebook, stickers, pens, or markers on me─as well as random fun toys. Lots of times we will be at an event that primarily involves physical activity (see above, bounce houses!), so it helps to have an alternative fun activity to do.

What is it about bubbles that kids find so fascinating? I don’t know either, but my kids have thoroughly enjoyed them on numerous occasions when they couldn’t participate in some physical activity that was going on. Providing a fun alternative also helps me to feel like we have some control over an otherwise bummer-of-a-situation, and teaches our kids to make the best out of every opportunity.

And lastly, we purchased slim, collapsible, height-adjustable tables (think: slender, plastic TV trays) that we can take anywhere and set up in seconds. With these tables, we don’t need to worry that the picnic table benches at our campsite provide absolutely no back or side support whatsoever. We can set up the tables anywhere and the kids can stay in their chairs and eat or play on them.

The hard truth about SMA is that it throws our lives and our plans for a loop. There’s so much that we can’t control. But in our family, we try to approach every obstacle as an opportunity to learn and become better than we were yesterday. Hopefully, some of these ideas will help you, or someone you love, have a little more fun while navigating the world around us.

Other posts by Dany

Enter SMA

When we had our daughter, Ruby, like many first-time parents, we had so many dreams for her. And they all involved her exploring the world, finding what she loves to do, and learning all she can about it. Enter SMA.

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Growing our family after SMA

I can barely remember life before I worried about SMA. But perhaps what has been even more difficult for me has been the loss of the option to be able to just up and decide one day that we want to add to our family without fear or hesitation.

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