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    Celebrating “Inchstones” in SMA

    A mother’s perspective: How our family measures progress since treatment

    You couldn’t picture a happier or more beautiful little boy than the one who came into our lives on January 4, 2019. Little did we know, this bundle of joy we named Slade was just starting a journey that was going to change our family’s life.

    About 2 weeks after Slade was born we started to notice that he appeared to be a bit floppy. Our pediatrician chalked it up to him being a calm baby and told us he’d eventually grow out of it. With my husband being a chiropractor and my background in early childhood development, we knew something was wrong–we could just feel it.

  • This topic has 1 reply, 1 voice, and was last updated 2 months, 2 weeks ago by DeAnn R.

    • Author
      • #21943
        Kevin Schaefer

        Hey everyone! Hope you all had a great weekend. For today’s Motivation Monday topic, check out my latest column here.

        Often, we spend a lot of time in disability communities talking about the more frustrating conversations and interactions we have with people. It’s important that we discuss these scenarios, and especially that we educate others about ableism, so that they know to treat us normally.

        At the same time, I think it helps to reflect on the more humorous interactions as well. I wrote about some of mine in this piece, and it was fun. Getting mixed up with Kevan Chandler was especially entertaining. I emailed him about it.

        I’m sure you all have stories too, and I’d love to hear them! Anyone have any favorite funny SMA stories? People with SMA and parents/caregivers are welcome to share.

      • #21958
        DeAnn R

        Oh yes, you know the dog must be guiding us in our chairs. I’ve gotten that one too. As well as being confused with other individuals in wheelchairs. I chalk it up to folks being naive. As they get more exposure to situations they can learn. It sure can be funny though.

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