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  • ryan-berhar

    February 19, 2019 at 9:52 pm

    Good column. Achieving a delicate balance of protection and freedom is imperative. I can only imagine how difficult it must be for parents to find that balance. It’s important to remember the two aren’t mutually exclusive. You can look out for your child’s health, while still encouraging them to pursue their dreams.

    • kevin-schaefer

      February 20, 2019 at 2:39 pm

      Absolutely. It’s a tough balance for sure, but I think those of us with SMA learn how to maintain that balance as we get older. It’s hard for parents to let go at first, but I think they’ll see their kids grow when they take that step.

  • kelly-miller

    February 21, 2019 at 1:57 pm

    I came from a family that allowed me to be as independent as I could be. In fact, my parents pushed me both academically and socially to be as outgoing as my able-bodied brother. I am very thankful that they chose to raise me in this manner, without fear of germs or illness.

    While I knew it was bad to get sick because any kind of cold often developed into pneumonia, I didn’t live my life avoiding things that would potentially make me sick. I still went swimming in the lake with the other kids, I still got caught in the rain at the neighborhood pickup baseball game, I still sat in the mud in our backyard to make all sorts of imaginary meals for my little clique of friends. I lived what appeared to be a relatively normal childhood.

    I think I became completely aware of the advantage my parents gave me by letting me be independent when I went away to college. The school had a rule that any disabled students coming in as freshmen had to go to summer school immediately following their high school graduation. I had to take 2 classes and live in the dorms. I was told this rule was in place because too many 18-year-olds washed out because they had never been away from home and couldn’t handle it. I had experience with this having gone to summer camp (sometimes 2 every summer) for 2 weeks at a time since I was 7. I was angry with my new college that they had taken my last summer vacation before adulthood from me. I was going to be there for 8 weeks and when I got home before freshman year started, all my friends were busy getting ready to go to their schools. This whole set up ruined my plans for fun that summer!

    Or so I thought was going to happen. What ended up happening was I met some amazing upperclassman who took me under their wings, invited me to all their parties, and taught me how to make sure I got my homework done before those parties. I also learned that more than 50% of the kids who came in with me for that summer session who were disabled in some way failed the requirements for coming back in Sep. They either weren’t able to keep up with the heightened academic structure or, more often than not, they weren’t able to take care of themselves (and I don’t mean physically – that was all provided by the school) because they had never been taught by their parents to be independent. It was very sad to know that they were not going to get to come back, to fulfill their dreams of being “normal” in society. And it was all because their parents had been too afraid to let them out of their sight for any length of time.

    • kevin-schaefer

      February 21, 2019 at 3:20 pm

      Kelly, I totally agree. It’s important that parents instill these values in their kids early on, and I’m glad mine did as well. Thanks for sharing.

      That’s also really interesting about how your university handled students with disabilities. I’ve never heard of a requirement like that, but I’m glad it worked out, and that you were able to have the independence that you wanted.

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