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Time Is Motor Neurons

A father’s perspective: Our journey to finding a treatment

When Quinn, our soon-to-be-born daughter, didn’t make as much movement in the womb as our other 3 children, my wife, Annie, and I thought we had the “chillest” baby in the world. We joked that she was saving up all her energy for when she entered this world kicking and screaming. Quinn was born in August 2018, and she was the most beautiful little girl. Over the first few months, nothing seemed out of the ordinary. In fact, she appeared healthy and had strong upper body strength. But by the time Quinn’s 9-month check-up came around in June, her physical condition started to change.


This topic has 4 replies, 3 voices, and was last updated 10 months, 2 weeks ago by Kevin Schaefer.

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    • #17897
      Kevin Schaefer
      Keymaster

      My next column is about how having aides with me in school prepared me for caregivers as an adult. I thought about how I learned to communicate with my assistants from an early age and to advocate for myself, and these skills definitely came in handy when I started the process of hiring caregivers when I was in college.

      Can anyone else relate? I’ll go into more detail about this in my column, but I was just curious if anyone else thought about this subject.

    • #17930
      Ryan Berhar
      Participant

      I trained dozens of nurses/aides throughout school. It definitely does help prepare you, but for whatever reason training actual caregivers is much more stressful.

    • #19756
      Krystal
      Participant

      How did you get aides for school? I would like to enroll my daughter into an early start program when she turns 3 (assuming that this is an option for her), and I wonder how to get an aide to help her with the physical disabilities. I have heard of some families having a hard time convincing the school that their child is not mentally disabled and did not want them to be in a special needs classroom. I have also heard that since my child is only physically disabled, she will probably be placed in a regular classroom with the other “normal” kiddos. I have time to think and plan about this, as I will be tackling this issue in the next year or so, and would like to know if anything should be done sooner rather than later.

      • #19779
        Ryan Berhar
        Participant

        Hey Krystal, I can only speak for myself, but I’ll tell you what my experience was like. Aides were hired by the school district to assist me from preschool through third grade. It was a great system. I fit right in with everyone else. I enjoyed school K-3. Fourth grade was when things changed for the worse. Due to complications from my spinal fusion surgery which took place the summer after third grade, the district essentially forced me to change schools. (They’re not allowed to do this, but my family decided not to fight it.) Basically, the powers that be were in a constant state of panic that I’d choke to death, because I sort of had to relearn how to swallow after my surgery. This was not a danger at all, but I moved to the school where the nurses and special needs kids were as a result. This was absolutely horrible for me in so many ways. School felt like prison. Not only was I not allowed to eat pretty much anything, they literally wouldn’t let me drink water. Mind you, they weren’t following rules set by my parents. They made their own rules. My family sent lunch for me, and the school wouldn’t let me eat/drink it. I couldn’t go outside and play, because the nurses had to monitor the life skills room. I still went to normal classes, but I was heavily confined to the life skills room from fourth grade all the way through my senior year of high school. This was where the special needs students were. Mind you, I didn’t fit in there, but when you’re strictly disabled physically and not mentally, you don’t fit in, because there’s no one else like you. Even when I was older and could have chosen to spend more time elsewhere, I didn’t, because at a young age, I was conditioned that I was a life skills student. I don’t mean to say that nurses were the problem. I should have been given a nurse at my K-3 school, and all would’ve been well. I don’t know exactly what your daughter’s needs are. They’re undoubtedly different than mine, and you should make decisions accordingly. My point in telling you all this is never stop fighting for her. Don’t cave to the system.

      • #19918
        Kevin Schaefer
        Keymaster

        I agree with Ryan that you have to fight the system, pretty often. My preschool tried putting me in the special needs class as well, and my Mom wouldn’t allow it. Unfortunately, you’ll probably encounter a lot of this bureaucracy. Just practice advocating for your daughter early on.

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