DMD Expert Advises Parents: ‘How to Talk to School, Family and Kids About Duchenne’

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by Larry Luxner |

Clinical psychologist James Poysky advises parents how to talk about Duchenne at school, with family and with children. Poysky spoke at PPMD’s June 2019 conference in Orlando. (Photo by Larry Luxner)

If there’s anyone who knows a thing or two about how to discuss Duchenne muscular dystrophy (DMD) with your son, his siblings, his teachers and his friends, it’s James Poysky.

A clinical psychologist in Katy, Texas, Poysky teaches at Houston’s Baylor College of Medicine and chairs a muscular dystrophy expert panel coordinated by the Centers for Disease Control and Prevention. He’s also the father of a 16-year-old with the disease.

Clinical psychologist James Poysky advises parents how to talk about Duchenne at school, with family and with children. Poysky spoke at PPMD’s June 2019 conference in Orlando. (Photo by Larry Luxner)

“When it comes to talking about this topic, a lot of times the discomfort is from the adult,” Poysky told 850 delegates attending Parent Project Muscular Dystrophy’s 2019 Annual Conference, held recently in Orlando, Fla. “But it’s really important to talk about Duchenne with the people who have Duchenne. For one thing, it’s pretty difficult to keep it a secret.”

In his lecture, Poysky said parents and even professionals may avoid talking to children about Duchenne for several reasons. Among them:

      • They want to protect the child from distress. (“I just want him to be happy.”)
  • They don’t want to ruin the child’s vision of the future. (“I want him to have the same goals as other children.”)
  • They don’t know what to say, or how to start. (“I’m afraid I’ll say the wrong thing, or make things worse.”)
  • They’re waiting for a better time to do it. (“I want to wait until he is older and can deal with things better.”)
  • They don’t think the child will understand. (“He has a developmental delay and it would only confuse him.”)
  • They don’t want the child to see them become emotional or upset. (“I’m afraid I won’t be able to talk to him about it without crying.”)

Don’t delay the conversation

It’s naive to assume that children being treated at muscular dystrophy clinics don’t know they have MD, Poysky said.

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“Some people hold really tightly onto this perception that they don’t want the child to know — and it really wears the family down,” he said. “It is very important that you don’t keep secrets, because it’s going to bite you down the road.”

Mosaic of Duchenne patients created by Sarepta Therapeutics is displayed at PPMD’s June 2019 conference in Orlando. (Photo by Larry Luxner)

In most cases, Poysky said, these difficult conversations are a much bigger deal to the parents than to the boys who actually have Duchenne. In fact, these kids “actually cope pretty well with their condition, far better than we give them credit for.”

It’s also OK for parents to get emotional, or realize they don’t have all the answers. But that shouldn’t stop them from having the conversation to begin with, Poysky said.

“There’s never a good time to talk about Duchenne. If you leave it up to the child, it might not happen. So earlier is better. The longer you wait, the more difficult and awkward it becomes,” he said, adding that most children will understand the basics by the time their mental development is at the 3- or 4-year-old level.

A good starting point, Poysky advised, is asking your son what he knows about the disease — which gives parents the perfect opportunity to correct any misunderstandings.

“Among key points: he did not get DMD because he’s bad, or because he did something wrong. You are not mad at him. He can’t spread it to anyone, like spreading a cold at school. His DMD won’t go away, and the family will work hard to keep him healthy as long as possible.”

And then, Poysky advised, “ask him to explain back to you what you said. You never want to ask, ‘Do you understand?’ because the answer will always be ‘Yes.’ Use the correct name of the disorder from the start. Avoid using negative descriptions such as ‘crippled’ or ‘suffers from’ or ‘disease’ because that implies it could be contagious.”

What to say at school

Because no one really knows what treatments for Duchenne may become available in coming years, it’s not a good idea to dwell on your son’s long-term prognosis with him.

“Don’t be quick to minimize his concerns. Validate his feelings and provide emotional support,” Poysky said. “Remind him that you are a team and will work together to solve problems. Acknowledge the challenges of Duchenne, but balance this with hope and a positive message.”

Three brothers — only one of who has Duchenne — play video games during PPMD’s June 2019 conference in Orlando. (Photo by Larry Luxner)

It’s also important to talk to your son’s classmates about his disease — even if he doesn’t want you to do so.

“When other kids do not understand a medical condition, they’re much more likely to tease, reject or ostracize the child, or ask annoying or intrusive questions, things like ‘You’re short, how can you be in third grade?’” he said. “But when kids are educated about a classmate’s medical condition, they’re much less likely to tease, and more likely to protect and stick up for the child.”

He added: “For every kid who is mean, you’ll have 10 other kids who reject the child because they just don’t understand.”

Poysky recommended giving other children examples of how DMD affects your son’s daily activities. It’s also good to explain that he was born with Duchenne — it’s not his fault — and that other kids can’t catch it.

Teachers are another issue. It may be a good idea, Poysky said, to give teachers a one-page student profile about your son without focusing on DMD. Include a photo of him as well as more broad information, such as favorite activities or hobbies. Throwing in a gift card or other forms of “bribery” doesn’t hurt either.

“Teachers also sometimes don’t know what to say about Duchenne,” he told parents. “Give them permission to share basic information — and ask them to defer more serious or long-term questions to you.”