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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 7 replies, has 4 voices, and was last updated by  Halsey Blocher 2 months, 3 weeks ago.

    • Author
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    • #20306
       DeAnn R 
      Keymaster

      We’ve touched on this topic before, but today I have a different spin on it. A college friend of mine is coming for my upcoming birthday party. She lived in the dorm across the hall. She happens to have Cerebral Palsy. Not sure if the college just sticks all the people with disabilities in one wing or what, but that’s a topic for a different day. I credit her for rescuing me when I was stuck in bed as my PCA was a no show and my phone had died. She called the less than stellar agency for me and we’ve been friends ever since.

      After college we both moved back to our parents. Within a year I moved out on my own, but she still lives with her parents to this day. She’s ambulatory and perfectly capable of taking care of herself. From my perspective her parents don’t have that same confidence in her abilities. Honestly I’m not sure how she got to college in the first place. I know she has the desire to move out, but I think her parents do so much for her she’s gotten comfortable. Without being too pushy I’ve tried to nudge her to do a few more things on her own. Unfortunately I can’t see the parental grip loosening anytime soon. It doesn’t help she’s fallen a couple times reinforcing the idea she’s destined for failure on her own.

      Originally, since she doesn’t drive, her parents planned to bring her. They’d drop her off at the hotel. We’d pick her up for the festivities and to hang out. Recent development, her Mom is staying. Not a huge deal, but she was looking forward to doing this on her own. It’ll be difficult not to say something. Chime in or butt out?

    • #20354
       Ryan Berhar 
      Member

      Short of telling the mom she’s not welcome at the party, I don’t see what you can do about it. I guess that’s your prerogative, but I think any resistance probably needs to come from your friend. Maybe you could suggest to her that she just sort of puts her foot down on this one.

      • #20359
         DeAnn R 
        Keymaster

        I know her mom has her best interest at heart, but I don’t think she gives her daughter enough credit. I told her that her Mom was more than welcome. I’m hoping she’ll see that she could’ve done better things with her time than tag along.

    • #20356
       Halsey Blocher 
      Participant

      My recommendation would be that she/both of you gently tell her mom that while she’s welcome to stay in the area, you two would really like to spend some time without parents and you’d appreciate if she gave you guys some space. Maybe it’ll be enough for her to be close by even if she’s not right there. Hope you get it sorted out and enjoy your party!

      • #20360
         DeAnn R 
        Keymaster

        Halsey, that’s exactly my plan. I made an appointment for Mom’s to get pedicures and us gals to do manicures On the Saturday before the Sunday party. Then I’m going to see if my friend wants to do pizza and a movie at my place while parental figures go do whatever. I’m hoping to lead by example and show them there can be a balance of support and independence.

        • #20391
           Halsey Blocher 
          Participant

          The nail salon is a great idea! Hope it goes well!

    • #20358
       Adnan Hafizovic 
      Participant

      The best caregivers are our parents, but of course they sometimes overdo it. No matter what your friend can take care of herself, her mother must be afraid, maybe someone will inadvertently push her or something. I would love for each of us to do an experiment, to tell our parents that we found someone and that we want to get married . I would love to know how ours parents would react.

      • #20361
         DeAnn R 
        Keymaster

        I agree Adnan, my parents have always been great caregivers and very supportive. Sometimes I think it’s hard for them to take a step back. Honestly I think in some instances it would be difficult for them to see us with a significant other, but as with everything they would adjust.

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