With a Little Help From Your Friends
by Christina Medvescek
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.
|Members of the MDA Baltimore
teen support group enjoy parties, chatting, hanging out and guest
speakers at their monthly meetings.
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.
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
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.’”
teen group participants and volunteers show off their creative
spirits at a 2003 Halloween party. The late MDA National Goodwill
Ambassador Mattie Stepanek is the whoopie cushion in the front
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.”
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
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,
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
“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
Not All Fun
Sooner or later, a muscular dystrophy teen group will
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
by Chad McCruden and Carmen Coombs
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:
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.
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.
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.
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.
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
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.
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.