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    Adapting to Life Outside Our Home With SMA

    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 many 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.

  • This topic has 3 replies, 3 voices, and was last updated 1 year, 3 months ago by DeAnn R.

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      • #12714
        Kevin Schaefer
        Keymaster

        Columnist Brianna Albers wrote a great piece this week about the struggles of doing a class presentation when you have SMA (https://smanewstoday.com/2018/06/25/sma-moving-forward-graduate-school-time-break/?amp). She goes into detail about how SMA makes it hard for her to speak and articulate, which is something I’m sure many of us can relate to. Ultimately though she shares a success story about a recent presentation she did for grad school.

        Even though I’ve always had a loud voice and am able to project well, I’ve still had plenty of times when my speech was slurred and people had trouble understanding me. Spinraza has helped with this, but still it’s an issue for a lot of people with SMA.

        For those of you who are in college, do you have this problem? Do you have to request any kind of accommodations when you are required to do a class presentation? Share your tips and experiences.

      • #12715
        Ryan Berhar
        Keymaster

        I was always able to speak well enough to do presentations, but it was still not enjoyable for me by any means. If you can’t speak well, I’d suggest requesting an alternative assignment. In my experience, teachers are pretty accommodating.

        • #12727
          Kevin Schaefer
          Keymaster

          Yeah that’s been my experience as well. It requires self-advocacy, but most teachers and professors are willing to make those accommodations if you ask.

      • #13618
        DeAnn R
        Keymaster

        This topic reminded me of the time in college when I had to give a big presentation and my foot pedal fell off as I was about to go to class.  My shoe then proceeded to fall off as I was crossing the street.  Nobody noticed my foot dangling, or at least didn’t say anything, but I was so self conscious during the entire presentation.

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