Some time ago I wrote a blog concerning people in my life who intuitively understand how to be friends to families like yours and mine dealing with Duchenne. We can all find someone who knows the right thing to say or do among
the many who do not. I describe them as people who "get
it". I've also written how we have raised our sons to be their own
Advocate. Recently we had a situation where none of the stars had aligned
and this situation is particularly troubling due to some of the people
involved.

This issue involves my son Matthew who is a junior in high school. He is
very active in school, participating in Student Council, Mock Trial Club and
sings in the Chamber Chorus. He also is a member of the school's Natural
Helpers club. This group of students work together to support their
peers. Other students connect with this group and ask for help dealing
with day to day problems. The group makes recommendations on how to deal
with these problems including recommending getting the advisers or another
teacher's help. Last year Matthew applied and was denied as the adviser
suggested he was too quiet, yet he persisted and this year is part of the club.

What would appear unrelated to this is Matthew has friends who help him daily
set up his lunch so he is able to feed himself. Alice and I believe it
better for him to ask for the help of his peers rather than have an adult hover
close by. Boys with DMD face social isolation and we all know having an
adult in earshot at lunch has never been seen as cool to teenagers. This
arrangement has worked well for Matthew since elementary school. There
are times students tire of helping, yet Matthew simply finds someone else to
help. Recently two students, also members of the Natural Helpers,
complained to the club adviser they no longer wanted to help Matthew. I
guess if you plan to stop helping a friend getting a teacher to intervene is
now in vogue.

What is more curious is the adviser called Matthew's case worker who in turn called home to let us know of this
situation. No sense in going to the source when beating around the bush
will work. Alice talked to Matthew and he told her he wanted to work this
out on his own. He spoke to the Natural Helper's adviser who told
him that having students help him was an impediment to their being
friends. Matthew asked her to have them speak to him so he could get to
the bottom of this, yet was told what was easiest for him might not be easiest
for them. I guess that means if you help someone with their lunch you can't be their friend? Matthew left upset, discouraged and not helped, naturally or
otherwise.

This has led to Alice and me becoming involved. What I find most
frustrating is Matthew's attempts to handle this like an adult is railroaded by
the adviser for a club that is supposed to foster students helping one
another. Apparently this person just "doesn't get it". We
met with Matthew and his case worker after school as she was our contact for
the situation. We discussed the circumstances and she offered to
intervene on Matthew's behalf to get this ironed out. Alice thinks the
Natural Helpers adviser wants an adult to help Matthew. I think the
adviser is simply the wrong person for the Natural Helpers as she i doesn't put
into practice the advice she is offering students.

This is one of the reasons I have participated on school committees. I have
no problem going up the chain to get his resolved. I am optimistic we can
work this out quickly, yet changing attitude takes time.

As I wrote in my previous blog, the people you least expect to are the ones who
"get it". This situation confirms that belief and the corollary
that those who should understand may not. I wonder if the adviser still considers Matthew "too quiet".
There are days I wish it was easier.

Brian Denger

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Comment by Ann Avery on March 27, 2010 at 5:17pm
Thank you for sharing this Brian. Life never goes smoothly anyway, but add a teen with DMD and it seems the road is even rockier for them. It sounds lke you and your wife have fostered a mature beyond- his-years son, and that he is going to be just fine. My son did have the same wonderful aide all through school--one that knew how to stand back. When he began working, the company made it clear that other employees were NOT to help him so he had an aide come in and feed him lunch. ("liability issues")
Some will be oblivious and never get it so this is either your son's opportunity to educate those people, or to move on unaffected by their actions or words. We all know the world is not fair and will have to develope our own ways of keeping on despite it. You sound like great parents!

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