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.
DM affects as many or more systems in the body than any other disease. The effects that are usually the most compromising for the individual with DM are the fatigue and the GI system. Usually the severity of these effects relates to the age of onset of DM but not always, meaning the age that symptoms first started. For instance, my third child Michael has severe GI issues and his age of onset is childhood. But, my second child Andrea also has severe GI issues and her age of onset wasn’t until around the age of 17. However, for the caregiver, me, the effects that are the most difficult are the way that DM affects the brain. Through observation and MRI research has shown that DM creates white matter in the frontal lobe.
It never crossed my mind that my children had a disability or that I was living in a culture of Ableism. Understanding Ableism is new for me. But by understanding it, I have more information that helps me as I interact in the world around me and it gives me a whole new way to look at my family, in hindsight.
In fact, working with my DM family for 40+ years has taught me to see the authenticity in each of them. It is no longer my goal to coax them towards ableism but to meet them where they are and to be fascinated with them right where they are. I also try to help each of my family members be fascinated with their own uniqueness.
“I’ve found the best caregivers are the ones who give themselves permission to enter into the world of the person they’re caring for.” writes columnist Molly Carpenter at EverydayHealth.com. 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 its own. In other words, I was treating “symptoms” but never aware of the core problem.
By treating others like they are not normal or typical we separate them from the norm which creates margins. If you feel like you are outside of the margins then you are marginalized. When you are marginalized you don’t get to be treated like everyone else because you are different. Therefore those doing the marginalizing assume that you don’t have the same needs and feelings as everyone else. The only person that accepted me unconditionally was my mother Lavon. She has such a cool name, Love – on. Thank God for her. Whenever I felt less than or unacceptable I would call her. She ALWAYS believed in me. My mother could always see my intent and the goodness in me. It was her role model that helped me believe in my children even when there was no name for their unique issues. And even when it looked like my children weren’t fitting into society I knew in my heart that they were made of “Good Stuff.” Knowing this about my children was my compass and it always guided me to figure out how to empower my children. I am very proud of who they are and the decisions that they make. (Even though they do need help making their decisions).
As I have interacted with many of you, I try to share the tools that I have learned and used.
I have broken down my many years of experience with raising a family DM and cognitive issues into 6+ workshops. Please stay posted for these. I can work with you one-on-one and/or I can work with you as a group.