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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 4 replies, 3 voices, and was last updated 4 months, 1 week ago by Ryan Berhar.

    • Author
      • #20017
        Rachel Markley

        I’d like to talk RULM. I hate this assessment (yes, I know hate is a strong word). My biggest issue with it is reach – I can perform a lot of the tasks if the item is in reach but because I’m not allowed to elevate my chair high enough, most of it isn’t in reach. After speaking with my new OT she thinks it’s unfair for adults because of contractures, etc. Thoughts? Suggestions?

      • #20019
        Kevin Schaefer

        Rachel, I know exactly what you mean. This particular test is by far the most frustrating part of my Spinraza evaluations. My OT is great, but it’s very difficult to meet the expectations of this assessment.

        I usually just try to score high on everything else. Do you do the pencil test where you have to draw a line through a maze? I’ve been doing well on that one.

      • #20020
        Rachel Markley

        Kevin, I have that too but struggle to use the average #2 pencil. Do they allow you to move your paper?

        • #20021
          Kevin Schaefer

          Yeah, I can move the paper, which helps a lot.

      • #20023
        Ryan Berhar

        I’m not even sure what that is, but frankly anything involving OTs has always annoyed me to death. I hate to say it, I know there are good ones, but they’re kind of out of touch in my experience.

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