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Supporting Juvenile Onset Adults: Parents Learn From Each Other

By Leslie Krongold, Ed.D.
Outreach Director, Myotonic Dystrophy Foundation

I've been facilitating support groups for 17 years, and I've witnessed many a parent experience an epiphany as they hear others share their stories about caring for Juvenile Onset Adults (JOAs) in our monthly MDF Caregiver Virtual Meetings or at an MDF community-led panel session. Many people don't realize that JOAs deal with very specific issues that the adult onset population does not have to contend with. It took me years of working with families to fully understand this myself.

Families new to the DM community are relieved to learn that they are not alone. They have been worrying in isolation about an adult son or daughter who struggles with school and social connections and seems "lazy." I assure them they are not alone. I have heard these anecdotes repeatedly since I began working at MDF.

The first step, of course, is education. The children are not lazy; it's just a different manifestation of the disease. The next step is learning through the wisdom of the caregiver community how parents are making the best of a difficult situation.

Suzette Ison in Indiana struggled to understand her son, Billy Dean, for years. His development was similar to his older sisters’ until he entered the first grade. He would sit and stare, he was resistant to almost everything - school, eating, and practicing personal hygiene. All questions to Billy Dean elicited the same response, “I don’t care.” 

It took several years before there was a diagnosis, but post-diagnosis, doctors could offer little solace. Suzette traveled to California and met several other families with juvenile-onset DM. From these families she learned how to cope. She learned that she didn’t need to figure out about the next ten years right now; everything was fine in the moment. She also learned some crucial strategies for supporting and motivating Billy Dean.

“One of the best decisions I made,” said Suzette, “was getting Billy Dean a service dog.” 

The dog is a real motivator for her 21-year-old son. Billy Dean gets up in the morning to let the dog out. Taking the dog for a walk motivates him to take care of his own personal hygiene. Horse therapy is another motivator for Billy Dean. Of course, Billy Dean doesn’t view this as therapy. To him it’s just an opportunity to realize his cowboy identity. He feels important around the horses, and the experience fills him with energy and happiness.

Clare, a support group facilitator in Portland, Oregon advises other parents to adjust their expectations and appreciate the joy their children experience. That’s why Clare’s support group meetings always include elements of fun and levity.

Chuck in Atlanta, GA is a grade school teacher caring for his 26-year-old JOA daughter. It helps him to remember his daughter is more like a teenager cognitively than an adult woman.

Many JOAs hold part-time jobs or get involved in volunteer work. Larry in Atlanta, GA has been successful engaging both his sons, Hunter and Ashby, in local activities. Both sons live at home and work part time for organizations Larry is affiliated with. In this way, they have been able to help cultivate an environment conducive for Hunter and Ashby to prosper in.

​Denise in Maryland found that her son Chuckie’s desire to please has helped him find success in different work situations, including a factory assembly line and a grocery store.

Chuckie received training through Maryland's Department of Rehabilitation, where he was initially tested for his affinities and capabilities to help find the best job placement for him. Denise still manages Chuckie’s money and is on guard to make sure he is never taken advantage of.  Chuckie’s life is enriched through his work but also his play; he is on two bowling teams. One team includes others with physical and/or cognitive challenges and the other team includes Denise. 

“He’s taught me a lot because of his stick-to-it-ness. His work habits are exemplary,” says his proud mother.

Diane lives with her three adult children in Washington. House rules and individual chores help maintain their household. One son has been unable to work due to fatigue and social skill disruptions, but another son has succeeded at “sheltered work” in a family-run business. He can nap when necessary and move at a slower pace. Christine, Diane’s daughter, has not been able to find paid work, but she does infant and childcare a couple of times each week.

Diane feels parents must have durable power of attorney for their JOA children. Some parents seek a guardianship, which Chuck says, “allows a parent to control outside relationships, prevents marriage contracts, and the ability to rent a home." The goal is to construct a safe place for them. 

Suzette says, “A lot of other parents helped me to learn to live with the journey; you can’t control it. Now, every day, I just try to make sure Billy Dean gets cleaned up, eats and has something to do to get out of bed – a purpose or plan for the day.”



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