With a Little Help from Your Friends

At a recent MDA picnic in Shawnee Mission, Kan., Mary Millet looked around for her teenage son Patrick, who has Duchenne muscular dystrophy (DMD). She found him sitting away from the crowd, hanging out with a small group of teens.

The normalcy of this event — teens gathering to talk and laugh privately — struck a familiar chord in Millet’s heart. She knew that teens don’t want to hang out with their parents. They want to be off on their own. But the realities of life with muscular dystrophy don’t always allow it.

Members of the MDA Baltimore teen support group enjoy parties, chatting, hanging out and guest speakers at their monthly meetings.

So Millet suggested to Julie Ham, the local MDA health care services coordinator (HCSC), that they start a support group for teens, “not only to talk about things, but just to get together.”

'Coming into their own'

Teen support groups serve a variety of purposes. They reconnect MDA summer camp friends and spark new friendships. They allow teens with muscle diseases to share experiences with peers who deeply understand their lives in ways nondisabled peers can’t. And to top it off, teen groups provide mentoring and role modeling at a critical stage of adolescent development.

All of these reasons — and requests from kids and parents — convinced MDA Indianapolis HCSC Jodi Wolff to start a teen group last summer.

Beginning around junior high, Wolff says, physical disabilities can make it harder for teens to hang out with friends or blend into anonymity.

At the same time, adolescents start “coming into their own and understanding their disabilities better and how they affect their lives,” Wolff says.

Support groups provide the comfort of knowing other kids are surviving the same thing, as well as the tools to manage their disabilities, Wolff says.

Although teen support groups often grow out of close-knit summer camp friendships, group is different from camp.

“At camp, we focus away from the disability. We try not to talk about what’s bothering them — we try to make it fun,” Ham says. “But sometimes we need to address fears, frustrations and misunderstandings. Everybody needs that, but kids who are learning that they’re not fitting in exactly, really need it.”

Typical group

Chad McCruden calls an MDA teen support group “a cumulative thing.” McCruden, a 32-year-old disability advocate with Friedreich’s ataxia, has helped run a Baltimore-area teen group since 2002. (See “How to Start a Teen Group.”)

He observes, “You just can’t turn on the switch and make magic happen. But as teens meet other teens or older people with MD that have jobs, cars, live independently and what not, eventually there’s a cumulative toll and a light goes on: ‘If he can do it, I can do it.’”

Groups may hear guest speakers on topics like dating, driving, medical research, careers and college. Most also have occasional special activities and outings.

But for the most part, “we just pretty much talk about normal stuff,” says Peter Tachney, 19, of Elk River, Minn. (For more teen perspectives, see “From Where I Sit.”)

Tachney, who has DMD, has been in a youth support group since he was 8 years old, when his mother Lynda helped start a parents’ group. A school physical therapist with a counseling degree offered to meet with the children while the parents met, and after 11 years, a core group of five to six boys still meets once a month.

Mostly, they talk about video games, movies, handling parents, “normal guy stuff.” Sometimes they play board games. When someone gets weaker, “the older guys just kind of say what their experiences have been, share tips,” Tachney says. “We tell each other not to worry about it, it will get better.”

Mentors/role models

Just having someone to talk to is the best part of group, Tachney says. But if a teen group isn’t available, a mentor might be.

Allison Foss

Allison Foss, 25, of Overland Park, Kan., volunteered to mentor a teenage girl with muscular dystrophy “because I knew what it was like growing up having a disability.”

Foss, who works placing special needs children into foster homes, has congenital myasthenic syndrome (although growing up her diagnosis was myasthenia gravis, or MG).

“I have speech that can be difficult to understand. I was on prednisone for a long time and I was humongous. Kids looked at me and wondered why I was obese and talked funny,” she recalls.

“It’s a very emotional time. That’s why I wanted to reach out to another individual with muscular dystrophy, because I know what it’s like. It’s a hard road and you want somebody to know you understand and accept them.”

Last November, Foss was matched with JennyRay McGee, a 16-year-old with MG. Although the two haven’t done a lot together, they’re slowly building a relationship, Foss says. JennyRay is very busy, “but that makes me happy because if she is busy doing her own thing, you know things are going well.”

Foss advises would-be mentors to “embrace [the teen] as your friend and have a friendly relationship. Once you build up trust, then when they have issues or things they want to talk about, they will.”

Growing leaders

Christopher Bilinski

On a broader scale, mentoring and peer support also can be found at gatherings for youth with disabilities. For example, last summer Christopher Bilinski, 17, of Lincoln Park, Mich., attended the Michigan Youth Leadership Forum for Students with Disabilities.

Bilinski, who has a muscle disease resembling Charcot-Marie-Tooth (CMT), was among 34 students selected from across the state with a wide range of disabilities. Students bunked in university dorm rooms during the five-day event, which taught disability legal rights and the political process.

“The closest thing I’d done to it was MDA camp,” Bilinski says. “I would highly recommend it. You learn a lot, make new friends, and become more self-motivated and active in your community.” Bilinski hopes to mentor students at future conferences.

Not all fun

Sooner or later, a muscular dystrophy teen group will confront death.

The Baltimore group has lost three members in two years, including Mattie Stepanek, MDA National Goodwill Ambassador, who died last summer. Grief counselors met with the group after Mattie’s death, and his absence still is keenly felt. When another member died unexpectedly several months later, the group went to the funeral together, held hands and cried.

“They handled it well,” McCruden says. “They’re there for each other. They’re becoming more conscious of their mortality, and that’s always hard for teens and even adults.

“But the good thing about teen group is that they get so much joy out of coming. So they’re also living in the moment, living life to the fullest.”

How to Start a Teen Group

The concept for a teen support group arose from our experiences at MDA summer camp. Working with the campers made it easy to see how important it is for disabled adolescents to enjoy being regular teenagers, form friendships and spend time away from hospitals.

In 2002, we teamed up with Baltimore MDA Health Care Services Coordinator Katie McGuire and began a teen group that’s been meeting regularly ever since. Here’s some advice for getting started:

Chad McCruden, 32, works for the Commission on Disabilities in Baltimore, and has Friedreich’s ataxia. Carmen Coombs, 27, is a first-year resident at Johns Hopkins Medical Center and a former MDA summer camp volunteer.

1. Gauge interest. Send a letter to area teens registered with MDA asking about their interest in various topics, and the best day and time to meet.




2. Find meeting facilitators. Identify “youngish” adults — possibilities include former camp volunteers, siblings of teens with muscular dystrophy, social workers or young adults with MD. In our experience, organizing a meeting takes about seven to 10 hours a month, in addition to the actual meeting time.




3. Choose a format. We alternate between topic meetings, when we have guest speakers talk about teen issues (relationships, peer pressure, etc.), and social meetings, such as casino nights or theme parties. There’s time for socializing in every meeting.




4. Select a meeting time and place. Our group meets for three hours the first Saturday night of the month, giving teens something to look forward to on the weekend and us plenty of preparation time during the day. We meet in an apartment complex community room that’s wheelchair accessible and provides a friendly, casual environment (not a hospital). It also easily accommodates nurses and parents who need to accompany certain teens, but allows them to be out of sight during the activities.




5. Establish funding. Funds are needed to rent a room, pay speaker fees (although usually they’re free), provide refreshments and pay for activities and supplies. In addition to help from MDA, our group was partially funded by a community service grant from the Johns Hopkins Alumni Association.




6. Recruit volunteers. We rely on six to eight volunteers, all in their 20s, to help with physical needs during meetings, such as eating and the bathroom, and to help draw shy kids into activities. Most of our volunteers are medical students or counselors from summer camp.




7. Keep in touch. Initially we sent out a lot of e-mails between meetings, and called each teen the week before. This helped maintain interest and build relationships. As the group evolves, try to let teens plan and run it themselves. It prevents us from planning something kids don’t really want to do, and gives teens responsibilities they can list on their college applications.