Are there any residential homes or "communities" in our area? (answered by David Wetherow)
When my neice was born with Apert's Syndrome, one of the things I told my brother and his wife was, "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, love her, aren't afraid to touch her and be touched by her, who understand that they will be part of her life, and that she will be part of their lives, forever."
That was 15 years ago. It's still true. It means 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 and commitment and understanding?"
It also means that one of the major creative roles you can play as a young parent is to be a conscious bridge-builder, inviter, and circle-maker for your son. It absolutely 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.
It 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 a long time - but you have the capacity to rebuild it). If he moves without you, that circle is shattered, probably forever, because he won't 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.
It 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 (see http://www.gentleteaching.com for a free download of his latest book).
It means expanding the family circle, inviting more people in, rather than trying to figure out ways for him to survive 'outside'. It means finding powerful ways of giving expression to your vision. We happen to like PATH because it's also a powerful tool for invitation and commitment-building.
I means finding the 'sweet places' in her 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 something we wrote on 'navigating the boundary with community' at http://www.community-works.net/Articles/14,000_islands.htm.
It 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. We have a friend who turned part of their home into a great separate apartment where their daughter lives with caregiver/companions.
With our help, 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 article on housing, cooperatives and microboards at http://www.community-works.net/articles.htm.
It 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 (I can tell you this as an older dad of a child with major challenges) the time to start is now.
The psychiatrist Thomas Szaz says, "In the animal world, it's eat or be eaten. In the human world, it's define or be defined." 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.
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 you always end up in competition with other people for diminishing resources (we call this 'competitive misery') - you're already seeing it in the 'waiting lists'.
What 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 being the place where this shared learning starts.
The answer to "Where is the best community?" is that the best community is one that you _create_.
The 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.
By the way, when I talk about 'building it', I'm not talking about building it for 'the handicapped' - I'm talking about buiding it for your son. If what you build is good, it should grow by example, rather than by 'administration'.
Wendell Berry says that in the long run, "....[we] need 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."
The 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.
Top of Page  Back to Home