Coaching - Mentoring by Myotonic Dystrophy Expert Ann S Woodbury

40+ years later, after raising 4 children with Myotonic Dystrophy (DM) I can finally say that I understand them. Raising them was very confusing since they had un-diagnosed cognitive issues from their undiagnosed DM. At that point there was no understanding or awareness of this rare disease

I earned a bachelor’s degree in Family and Child Relationships in 1981 so I thought that I was prepared to be a wife and mother. I wasn’t aware of the bias of that time period towards Ableism, discrimination and/or favoritism towards able-bodied people. My education didn’t give me preparation for those with any limitations, much less an entire family. In fact, it seemed to me that the goal in working with others was to coax them towards being Able. There wasn’t any training about how to work with someone from the place that they were functioning at. As my children grew and we faced difficulties I was totally unprepared. My background had taught me to pay attention to typical milestones of “normal” child development. Sometimes my children didn’t fall into these normal milestones but since I could tell that my children were trying their best I decided to not focus on these milestones. In fact, I just ignored my textbooks.

Because I had only been educated about children that were normal I figured that there was something that I was doing wrong. I took parenting classes and read a lot trying to adjust to them. The way that I responded to Warren, never realizing that he would eventually be diagnosed with Aspberger’s was to try to get him to behave “normal”. The Aspberger’s diagnosis didn’t happen until he was an adult.

Now, in hindsight, I can understand why my children had their unique issues. They were all related to the Myotonic Dystrophy (DM) that they would eventually be diagnosed with. Through all of their years I always tried to figure out where I was failing them. I knew who they were and they were good stuff so I figured that it must be my failings.