I was a Boy Scout for a short time. I enjoyed the crafts, earning badges
and being with friends. I even liked camping, that is until a January
weekend in Maine where I nearly froze because of inadequate gear and
below zero temperatures led me to "reconsider my participation". The one
thing Scouting emphasized and is still part of the motto is "be
In parenting and bringing up our sons, Alice and I have taken this same
approach. This philosophy has helped us to be ready for the many stages
we encountered after Matthew and Patrick were diagnosed with DMD and as
the disorder progressed. We also have used this concept in raising our
sons knowing life will be very different for them. While it is natural
to think of the worst aspects, we decided to help our sons learn to
advocate for themselves, be involved in school and community activities
and promoted the idea of building supportive friendships. We believe
this will help them avoid being socially isolated. We talked to other
families and learned what worked or didn't work for them. Even today we
rely on the sage advice of families and individuals living with DMD who
share their successes about how they or their sons live well each day.
Realizing our sons will be dependent on others for much of their care
did not mean they need to be helpless. Early on we resisted suggestions
that Matthew or Patrick would need full time aides during the school
day. We liked the idea of them learning to advocate for themselves
appropriately. Why can't other students help them retrieve books or open
their lunches? Our thoughts are that this helps to build understanding
among peers as well as empathy. As long as others realize their efforts
are appreciated we have found many willing to help.
Parents communicate their fears of the future for their sons to me
personally and I find similar messages on various message boards. My
response is to prepare for the worst and hope for the best. Just because
a young man can't lift his arm doesn't mean he needs to be helpless.
With support and preparation there should be no reason someone living
with DMD will be unable to participate in the community. Certainly there
needs to be adequate home and community based supports, but barring this
hurdle, why not? Many of our sons will be going to college, getting
jobs and having their own lives. If we put our heads and "collective
muscle" together as a community we can overcome these obstacles. If we
don't prepare our sons now what good are any therapeutic strategies that
slow or arrest the progression of DMD? We all need to think more
broadly. Yes, having your son lose the ability to walk is upsetting, but
there are greater challenges and we are able to meet the challenge, if
not individually then as a community.
What skills do our sons need? They need to manage money, people and
time. If we raise our expectations for our sons what is the downside? I
think back to when I was in school to my favorite teacher and one theme
remains constant. Each one expected me to do my best. At our home we
have the same expectations. Matthew and Patrick are part of a busy
family and can't expect us to stop regular activities to cater to them.
When they need or want something it is up to them to ask in an
appropriate manner, they need to schedule activities and work within our family's
plans. They need to participate as a member of the family.
Matthew works part time as a volunteer in Senator Collins office. If he
will miss a shift it is his job to e-mail the office. Both Patrick and
Matthew are on student council and active in other clubs. We have one
van. Should they have competing activities they need to manage it. That
is life in the real world and how it works for us.