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