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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 6 replies, 4 voices, and was last updated 1 year, 11 months ago by Ryan Berhar.

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    • #13727
      Ryan Berhar
      Keymaster

      When I was younger—grades K-3 to be exact—I was social, and, for the only time in my life, felt like a normal person. Long story short, I switched schools after third grade, and this change devastated my long-term social well being. I was put into a “life skills room”.  This is a classroom that provides support for students with special needs. While that’s a fantastic thing, I didn’t belong there. My experience with the life skills room spanned nine years in three different schools, and throughout all this time, I was literally the only person who was disabled physically, but not mentally. The reason I was there is because it was the only place that provided the accommodations I needed. I still attended regular classes, but life skills was where I spent all my downtime. Think of it as my headquarters. I’m an introvert, so the life skills room provided me with the isolation I desired, but it was terrible for me from a social development standpoint. Of course I wasn’t mature enough to recognize any of this at the time, but now I can see the negative effects. Do any of you have similar experiences?

    • #13742
      DeAnn R
      Keymaster

      Although I went to the “Special Ed” area to get assistance from time to time, I was mainstream for 95% of the school day I would say.  For my district I was probably among the highest degree of disability to do this, but I was glad for it.  You’re a lot younger than I am, so I’m surprised that was your experience.  For me it took so much time to get from class to class, and since I had to rush to the bus I didn’t have a lot of time for social interaction between classes and after school.  Not to mention the stigma of riding the “short bus.”  Over time I think that’s changed, or at least I hope it has.  Did you participate in any after school activities?

      • #13771
        Ryan Berhar
        Keymaster

        Not really. Especially not in high school. I should have done more.

    • #13746
      Michael Morale
      Keymaster

      Regarding the whole “short bus” issue, I went to one of the largest high schools in the world, Skyline High School in Dallas, and I too had to use the short bus. I made friends with the rodeo team members on our high school rodeo team. The majority of these boys were beef fed country boys with an average weight of over 230 pounds. They made it perfectly clear to the majority of the students in the high school that if they had any problems or comments about me using the short bus, they could bring these concerns to one of the members of the rodeo team and they would take care of it for me. Suffice it to say, I never really heard any comments or ridicule about riding the short bus.

      • #13772
        Ryan Berhar
        Keymaster

        Yeah it wasn’t that I was ridiculed or anything. It was more of a lifestyle that had social consequences

    • #13749
      Kevin Schaefer
      Keymaster

      It was interesting talking with you about this class. Honestly I’d be frustrated with the people who put you in it. I hate when people try to pack everyone with physical and mental disabilities together. Mental disabilities are very different. I’m glad you still had some good experiences there though.

      In terms of social skills however, my advice would be that it’s never too late to create new social opportunities. High school can be an awkward time for anyone, so don’t feel too bad. Think about what you can do now to meet new people and engage in a community. I know I’ve asked you before, but is there a group at your church you could join? That could be a good place to start.

      • #13758
        Kevin Schaefer
        Keymaster

        Like you said, it’s great that something like this exists, but it wasn’t the right place for you. I can imagine that was frustrating.

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