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Coaching by Myotonic Dystrophy Expert Ann S Woodbury

Being a coach to our Myotonic Dystrophy (DM) loved ones is new territory for most of us. I know from personal experience, it was very difficult for me. I have a background in Family and Child Relationships from the University of Utah which came from the perspective of Ableism (discrimination in favor of able-bodied people). What I was taught in my schooling was how to work with children through their “normal” milestones. I was never taught how to raise a child and/or mentor someone that wasn’t meeting the “normal” developmental milestones. I was very confused as I raised my children. I knew deep down to my core that my kids were made of “good stuff”. But from the perspective of meeting “normal” developmental milestones they were “failures”. How was I to coach/raise them with such incongruence going on in my mind, were they problem children because they weren’t developing normally? I wasn’t able to put it into words until recently. I was listening to a book that said that our life journey is about growing “souls”. Another way to put it was that I was helping raise my children to “become a person”. If they weren’t performing in the way that my training had taught me that they should then what was I to do, shame them? I quickly put shaming out of my mind because I knew that shaming never helped an individual to become the best person they could be. But what tools should I use to raise/mentor my children? Of course, I didn’t always make the best choices, as my children will attest. I did get angry and frustrated. But the core belief that my children were “good stuff” greatly helped me on my journey. For instance, when Michael, my third child, was in kindergarten he kept bringing home his school papers and they had frownies drawn on them by the teacher, Mrs. Peters. I made an appointment and talked to the teacher to ask her why she was putting frownies on his paper. Bear in mind that he was five and his DM diagnosis came 9 years later. Mrs. Peters had been the teacher of my oldest when he was in kindergarten and she was a great teacher so I was very confused. Mrs. Peters said that she was putting frownies on his paper because he kept coloring outside of the lines. Michael is and was the sweetest, gentlest person. I knew that he wasn’t coloring out of the lines on purpose. I’m sure that I came across as VERY frustrated when I told Mrs. Peters that I didn’t care if she put nothing on Michael’s papers but I NEVER wanted her to put a frownie on his paper, ever again. She stopped putting frownies on his paper. Looking back it is clear that Michael didn’t have the dexterity to control his crayon. But at the time I wasn’t aware of that. I just knew that Michael was trying his hardest and that if he couldn’t stay within the lines it was because he couldn’t help it. I had to throw some of my training out the window. I didn’t even have words to use to ask specialists about my children. It wasn’t clear that my children were disabled. Their appearance was normal. If I had the diagnosis when my children were young I would have had more options. But, because there was no explanation for their “different” behavior I had to treat each issue on it’s own. In other words, I was treating “symptoms” but never aware of the core problem. I had extended family members tell me to ‘Let them fail. They’ll figure it out.” “You’re just overcompensating, a helicopter parent”. In fact, I was told that I enjoyed having my children “need me”. My husband thought, “Just let Ann do her thing. She enjoys it.” I eventually withdrew from most relationships. We moved to a rural setting and eventually even left our religious community. Again, I still had no name for what was going on. I just held on to the belief that my children were “good stuff.” When we did participate in community or family events I always came away doubting myself. Why couldn’t I get my family to events on time? Why did they never want to go to anything? It actually didn’t cross my mind that my children might have a “problem.” I just figured that I wasn’t parenting good enough. Sometimes I wondered if I had a deep psychological problem of needing to be needed. Once we had a diagnosis everything changed. First I was able to stop homeschooling my children. I immediately put the younger ones back in school. The two older ones already had GED’s and/or high school diplomas. With the DM diagnosis the school was obligated to meet the two younger one’s needs. Chad was put in “resource.” He was in 2nd grade. Michael was in 8th grade and was given an IEP (Individualized Education Program). I had tried a few years earlier to put them back in school but without the diagnosis these resource options weren’t available to them. With a diagnosis and with me being their advocate the school options were customized to each of my individual children. It was a process because unless the issue was obvious I would have to name the need. And the issues weren’t always easy to put into words. For example, Michael needed longer to eat his lunch. It wasn’t healthy for him to have to rush and risk choking. The school made it so that Michael was released from his class before the rest of the students so that he could be at the front of the lunch line and therefore he had a longer time to eat his lunch and he could eat more carefully. When my oldest, Warren, was in first grade he really struggled. His teacher, Mrs. Christianson was very authoritarian and he struggled with that. Warren didn’t feel like he mattered because she treated the entire class as a group and didn’t acknowledge the individual learning needs of each child. I didn’t know how to advocate for Warren. I would talk to his teacher but she didn’t acknowledge his needs. I kept “making” him go to school even though he didn’t want to. That was the beginning of my experiencing that my children weren’t “normal”. 15 years later Warren was diagnosed with DM and eventually Asperger’s. Warren’s diagnosis was valid because he had enough symptoms of Asperger’s to warrant the diagnosis but really the symptoms were caused because of the way that DM affects the brain. I am so sad when I think back on Warren’s experience with school. He was so bright but he didn’t fit in the “system,” as is the case with more children than is ever acknowledged. If Warren hadn’t been so smart and would have qualified for resource he would have gotten more individual help. But because he didn’t struggle with learning the material he didn’t get any personalized help, which I now realize that he needed. Remember that you are the one that knows your child the best. Keep believing in them. You are the best and only coach that has their best interest at heart.

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