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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 contains 6 replies, has 4 voices, and was last updated by  Kevin Schaefer 8 months, 4 weeks ago.

    • Author
    • #17191
       Kevin Schaefer 

      Good morning everyone. Hope you all are having a great week!

      I really enjoyed Alyssa’s latest column: https://smanewstoday.com/2019/02/08/on-hiring-new-caregivers/

      This one is very relatable, as I have similar experiences when it comes to hiring and managing caregivers. I especially like when Alyssa writes about the nuances of training a caregiver to position her hands on her wheelchair’s joystick. The whole “a little to the left/no you’re not hurting me!” is so poignant and relatable.

      What did you think of this column? Could you relate to Alyssa’s experiences? What questions do you have about hiring caregivers?

    • #17226
       Halsey Blocher 

      I can very much relate to being guarded with new caregivers! It is always strange to have to trust someone new with so many aspects of your life! And I can also relate to new caregivers being terrified of hurting me. It always takes a few weeks – sometimes months – for a new caregiver to fully realize that I am not a china doll, and they will in fact have to tug a bit to get my arm through the sleeve.

      • #17243
         Kevin Schaefer 

        Right?! It’s like our muscles are sensitive, but we can still be moved without breaking something lol.

    • #17232
       Ryan Berhar 

      Kevin, how much did you pay for the shoutout? Haha

      • #17244
         Kevin Schaefer 

        Shhh. I was hoping someone wouldn’t notice.

    • #17239
       DeAnn R 

      What I really resonated with is the relief of the other caregivers when you finally find someone.  Like with Alyssa’s parents my other PCA’s and even my Mom are more than willing to fill in the gaps, but it gets to be a lot.  I’m sure they’re glad to get back to their normal schedules as I’m very happy to be back to my routine even if I have to go through it step by step.

      • #17245
         Kevin Schaefer 

        Absolutely. I had been without a Saturday morning caregiver for a while, and I always felt guilty when my dad had to get me up and ready. It’s a huge relief now that this is taken care of.

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