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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 9 replies, 5 voices, and was last updated 4 months, 3 weeks ago by Halsey Blocher.

    • Author
      Posts
      • #19875
        Kevin Schaefer
        Keymaster

        Hey everyone! Hope you all are having a great week.

        Check out my latest column here. I wrote more about my experiences at this year’s Cure SMA conference, and some of my biggest takeaways. Brianna wrote about this as well, but the thing I love most about SMA conferences is that “abnormal is normal” with the people there. No one looks awkward or out of place for using a feeding tube, needing help with eating, etc. It’s an extraordinary community to be a part of.

        Who here has been to an SMA conference before? Do you have any stories you’d like to share?

      • #19882
        Ryan Berhar
        Participant

        It’s a fantastic event. Still bummed I couldn’t make it. I agree, the best part is that we actually aren’t abnormal for once.

        • #19890
          Kevin Schaefer
          Keymaster

          Sorry you couldn’t make it this year! Hope we can finally meet in person at a future conference.

      • #19884
        Halsey Blocher
        Participant

        Yes! The normalness of the things that usually make seem strange is awesome! It’s one of the only places where a suction can turn on every five minutes during a seminar, and no one bats an eye!

        • #19891
          Kevin Schaefer
          Keymaster

          Right! What was the last conference you went to?

          • #19901
            Halsey Blocher
            Participant

            The last one we went to was Disney World in 2017.

      • #19888
        DeAnn R
        Keymaster

        Great pictures by the way. I’ve never been to a conference. Guessing it would be like you suggest not as informational but more social. I probably would still feel awkward as I’m not a social butterfly, but I can see how at least the awkwardness of my disability wouldn’t be an issue. Flying is out, so it would have to be relatively close for me to even consider it. Where all have you been to the conferences?

        • #19892
          Kevin Schaefer
          Keymaster

          Thanks!

          I will say that there are plenty of introverts who go to the conference. I think you’d get a lot out of it.

          Regarding location, it used to be in more locations. We’ve had it in Chicago, Kansas City, Philadelphia, Dallas, etc. Now however, the conference is so big that it pretty much just alternates between Disneyland and Disney World. They’re about the only places in the U.S. that can accommodate so many wheelchairs, families, and researchers.

      • #19889
        Mike B
        Participant

        While there is much negativity and divisiveness in the news and our daily lives, for me the SMA conferences display and bring out the positives and best of humanity. A unifying collective spirit towards common goals is something I find uplifting. I was hesitant to attend my first conference back in 2015, but now have attended 3 of the last 4 and plan to attend in Orlando in 2020.

        • #19893
          Kevin Schaefer
          Keymaster

          Totally agree Mike! And yeah, looking forward to seeing you next year!

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