Letter to a Young Parent:
searching for community
mother whose son is four years old wrote to one of the Internet
mailing lists: Are there any residential homes or "communities" in
California like those in the East?
my niece was born with Apert's Syndrome, I had to do some quick
thinking about what was the 'bottom line'. I knew that her
parents were in a state of shock, and would only be able to
hear one or two things. One of the things I told
my brother and his wife was this: "The thing that will contribute
the most to her quality of life, both now and in the future, is if
she is surrounded by people who know her, who love her, who aren't afraid
to touch her and be touched by her, and who understand that they will
be part of her life and that she will be part of their lives,
was sixteen years ago, and it's still true. It meant that when making
decisions about things like therapy, school, housing, etc., one of
the most important considerations should be, "Will this take
her away from that circle of support, commitment and
understanding?" Regardless of the type, nature or
severity of 'the disability'.
It means that one of the major creative roles
one can play as a
young parent is to be an 'on purpose' bridge-builder, inviter, and
circle-maker for your son or daughter. Regardless of the
type, nature or severity of the disability.
It means that you need to be expressing your dreams for him and
your family to people who care about you, and eventually, helping
your son express his own dreams.
means finding powerful ways of giving expression to your vision.
We happen to like Jack Pearpoint, Marsha Forest and John O'Brien's
PATH process, because it's a great planning tool and also a
powerful tool for invitation and
means embedding yourselves in a community that you love,
building your lives there, and building his life there. If
you move, that circle is broken, at least for while - but
you have the capacity to rebuild it. If he moves without you,
that circle is shattered, probably forever, because he may not be
able to rebuild it alone, and most of the 'residential services'
I've seen in 30 years in this business don't have a clue.
means helping him learn to feel safe, loved, loving and engaged
with many people, and helping them feel safe, loved, loving and
engaged with him. John McGee's work on Gentle Teaching offers an
essential 'pattern language' for thinking about this. Visit
the Gentle Teaching
website for a free download of John's latest book.
means expanding the family circle, inviting more people in, in
contrast to focusing on trying to figure out ways for him to survive 'outside'.
You might want to read the article we wrote on 'navigating
the boundary with community'.
means finding the 'sweet places' in his community (your
community) where the threads of his interest - his delights, his
gifts - can be woven into a fabric of companionship and
contribution. You might want to read the article we wrote on 'moving
from activity to connection'.
means staying available to him as a family. This can take many
forms as he gets older, including the possibility of figuring out
ways to continue to live together with increasing amounts of
autonomy in all of your lives.
have a friend who turned part of their home into a great separate
apartment where their daughter lives with caregiver/companions.
Another friend created a small cooperative household in
a nearby neighbourhood where her daughter lives with support from
a service co-op.
We have a number of friends who have established
'microboards' for their children (something that we invented in
the 80's) and continue to play a major role in directing their
supports. Read the articles on housing
One of the things that this means coming to terms with the
limitations of the service system. You'll discover that the
biggest limitation is that we inevitably end up in competition with
other people for diminishing resources (we call this 'competitive
misery') - you may be
already seeing it in the 'waiting lists'.
means taking steps towards financial security, sharing your
vision, building a network of support, working on alternatives to
formal guardianship, etc. One of the very best resources for all
of this work is PLAN's book, A Good Life, which can be found at http://www.agoodlife.org.
The good news is that you're a young family, and this is a good
time to start on these things. You've got lots of time, and the
time to start is now. I can tell you this as an older dad of a
child with major challenges.
You have the vision, the love, the commitment, the creativity, the
power of definition and the power of invitation. It's true that
none of us can do this alone, but it's also true that you have the
capacity to invite and engage friends.
this all comes down to is that the answer to your question is to build
the future you want for him, bit by bit. This means finding
allies who understand all this, or maybe creating the place where
this shared learning starts.
answer to "Where is the best community?" is that the
best community is one that you create.
answer to "Where can he live?" lies in what you know in
your heart - that he needs to live in companionship, with people
who are loving, creative, and connected. We can almost never
'find' that - but we can build it. 'Housing' is the last
piece of the puzzle. When I talk about 'building it', I'm not talking about
building it for 'the handicapped'. I'm talking about building it
for your son. If what you build is good, it will grow by
example, rather than by 'administration'.
Berry says that in the long run, "[what we need to do is] ...to
love each other, trust each other, and help each other. That is
hard. All of us know that no community is going to do these things
easily or perfectly, and yet we know there is more hope in that
difficulty and imperfection than in all the neat instructions for
getting big and getting rich that have come out of the
universities and ... corporations in the past fifty years."
faith is that if we pay enough attention to our children and
reflect on what is in our own hearts, we will discover what we
need to discover, invite who we need to invite, and invent what we
need to invent. It turns out to be an exciting journey.
© 2003 David and Faye Wetherow !