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Breathing Lessons

by David Wetherow

I wanted to share an exchange on one of the parent mailing lists.

A mom wrote:

Today, I signed [my son] up on the waiting list for MR Waiver and group home or supportive living placement. The wait is about 10 years or so. I'm hoping that by the time he finishes with high school, he can transition into adulthood and become more independent. Too many parents wait and wait and when they seek these services, then they have to wait years and become very frustrated. Too often, young adults will regress if they are left home with nothing to do. For some reason, I thought of the clients I once served and got the urge to do it today. It's done :) A few of these clients had elderly parents in poor physical health who were trying to scramble to make arrangements only to be told of the waiting lists.

As a regular correspondent on the list, I wanted to address the notion that 'group home' might be a desirable direction to 'sign up for', so I responded:

Dear M., I'm about to take some liberties with your story, but my experience has been that the way we create great solutions is to create great stories and then 'move into them'. I hope you receive this in the spirit in which I'm writing, with respect and admiration.  You wrote:

Today, I signed [my son] up on the waiting list for MR Waiver and group home or supportive living placement. The wait is about 10 years or so.

The important thing to remember (if I'm reading this correctly) is that what M. has done is to begin the process of establishing her son's entitlement to draw upon public resources when he comes 'of age'. She hasn't made any pre-determination about the shape of the specific services that she might purchase/engage with those resources (group home, supported living, etc.) - she's just set the wheels in motion for dollars to flow at the right time. (I would personally strongly encourage her to pursue the direction of supported interdependent living over a group home 'solution', but that's my own experience and value base speaking.)

I'm hoping that by the time he finishes with high school, he can transition into adulthood and become more independent.

One of the things I'm sure that M. knows is that her son's 'independence' will be a blend of interdependence and self-determination. It will only be partially based on skills that he might acquire between now and the time he finishes high school. The real quality of his life will be anchored in established relationships with family, friends, allies, champions - the heart of a living personal support network. Her work over the next five, ten years will be to seek out, invite and support those relationships.

Too many parents wait and wait and when they seek these services, then they have to wait years and become very frustrated. Too often, young adults will regress if they are left home with nothing to do.

M. understands that the service system has a very limited capacity to create good futures for our sons and daughters. At best, it can support and complement the work of community and family. At worst, it may neglect or abandon people, or provide stop-gap solutions that are uninspiring and unsatisfying.

On the other hand, if M. does a good job of engaging her son's community 'way ahead of time, friends, extended family members, church partners, colleagues from work, etc. can work creatively to offer employment opportunities (beginning with after-school and summer jobs), learn about his interests and gifts, and make sustaining commitments to her son's employment and contribution to the community (read 14,000 Islands: Navigating the Boundary with Community).

For some reason, I thought of the clients I once served and got the urge to do it today. It's done :) A few of these clients had elderly parents in poor physical health who were trying to scramble to make arrangements only to be told of the waiting lists.

M. is absolutely on target here. It is ESSENTIAL for families to gather their community around them and, in a spirit of companionship, begin to create plans, invite commitments, and take action. The amazing thing is how strongly the community will respond when we share our story, share our dreams.

By far, the best guide for doing this work is Al Etmanski's book, A Good Life, available at http://www.agoodlife.org . Instead of spending the next $40 on a night at the movies, this is the best investment a family can make, whether their child is 10, or 20, or 40. If a family can't afford the book, the local ARC or Down Syndrome society can - and we can always encourage them to add it to their family support library.

M. said, "I did it..." - and she's done the right thing. There's a lot of creative work ahead, but she's putting the foundation pieces into place. Fair winds!

Cheers,

David

p.s. we've been up for six nights trying to keep Amber breathing, so I'm sorry if this is a bit rough around the edges.

================================

One of the other list members was kind enough to respond:

Dave, I hope Amber is better. I will be keeping you and your daughter in my thoughts. Take care and all your posts are wonderful and give me much to think about. Please let us know if your daughter is breathing better.

Thanks P. (and others who took the time to express the same hope).

We'll get there. Actually, this is the first time in 14 years that Amber has had a serious lung infection, which is a little miracle considering how much she struggles with aspiration and what a trial it is for her to eat and drink. Faye does this amazing 'slow dance' with her every mealtime ... positioning every spoonful of food, managing textures, etc.

Recently, it's taken two of us to help her through most meals, one feeding her and helping her position her mouth and chin, the other holding her arms up and gently trying to overcome the reflex extensions. Sometimes just tipping her wrist forwards a bit allows her hand/arm/shoulder to relax for a few seconds ... enough for one swallow.

All of this keeps me reminded that 'quality' is in the moments, that companionship is paramount, and that what we're looking for as we begin to think about expanding the family circle is the possibility of inviting other people in who will see our kids the way we do, operate with the same integrity and resourcefulness, and find their part in the 'slow dance'.

We've done some thinking about this over the last several years, and last month, when we were doing a workshop, Faye was talking about these qualities and I was scrambling to create a graphic that portrayed what she was talking about. For twenty years, we've been working on supports that were based on the idea of 'moving forward from (actually with) the family model', as opposed to 'moving backwards from the institutional model'.

If you want to see what this looks like at the moment, visit http://www.communityworks.info/familypattern.htm . The pattern is an initial attempt at depicting what families really do for their kids - all of their kids. At the moment, the one big omission in that collection of words and phrases is 'life-sharing'.

We share our lives, submit our lives, to our children. What we really yearn for is to find other people who we can draw into the family circle who might share this journey with us and with our kids. This is what I'm talking about when I mention the idea of 'interdependent living' - moving forward from (and with) the family.

I've been around the service system for longer than I care to think about. I've been involved in over a hundred formal evaluations of services of all kinds. The reality is that 'services' will not and cannot do these things for our kids. But the great possibility is that, as families, we can invite and support relationships that will offer these things and will deliver them over the long haul.

In this pattern, the role of the State changes from that of service provider to one of financing the solutions that families and friends create together. In this pattern, the organizations that we think of as 'agencies' play a very different role; they move from 'service delivery' (where your child's life is no longer your own, or his own) to encouraging and supporting the work that the young person, the family and faithful companions are doing together.

This isn't a fantasy. In British Columbia, seven hundred friends and family members are involved in creating and sustaining individualized solutions for a hundred and fifty men and women with disabilities (some of whom have extremely challenging disabilities indeed). The State's role is to provide financing, not 'services'. There's a great small agency that helps those families and friends get organized and stay on track. This work has been going on for over ten years. Currently, Faye and I are supporting the emergence of similar projects in Tennessee and Ontario.

When M. says "I really hope supportive living will work for him", I want to point out to her that supportive living is working for him now! Living with your family is supportive living.

What works in M's son's life, what allows his life to 'work', what allows him to be successful right now, is that he is living in a context of relationship, devotion, love, admiration, and a constantly evolving 'slow dance'. Now the work is to expand the number of people who are involved in that dance, to invite commitment, to practice together, so that if and when [her son] leaves his family home, what he experiences is just 'changing partners' and continuing the dance with people in whom he already has confidence and who have confidence in him. M. and her husband can continue their dance, and watch with delight as their son continues his.

If you put it together right, it literally cannot fail. Because it's not built on 'skills'; it's built on companionship and devotion and continuous adaptation. It's not a 'program' that somebody can 'fail'; it's a dance.

Very early in our work, we helped Nicola and Ted Schaefer create a home for their daughter Catherine that was very much like her original family home. Kate went from living with her parents and brothers to living with housemates who Nicola recruited, trained and supported (with the long-run assistance of a small cooperative agency that we built together, with Kate and her mom as the first members). Over the following fifteen years, there have been a lot of changes - new housemates, the family sometimes dancing close, sometimes farther away, big swings in Catherine's health, changes in thinking about what 'daytime' should look like - new steps in the dance.

This is supported living at its best. When Catherine's health changed, it did not fail ... something about the dance changed. When Kate became dismally unhappy with what was going on during the day, it did not fail ... something about the dance changed. When a partner forgot what s/he was there for, it did not fail ... another partner entered the dance. Now the thing that I haven't told you yet is that Catherine is massively disabled ... the whole nine yards. But this young woman with a list of disabilities as long as your arm has been living in her own home for over fifteen years ... because it was built on the right premise.

The premise was simply moving forward from (and with) the family. Asking, "What Catherine has now is great! What would this look like in the next phase of her life?" Being brave and creative about inviting people in. Being innovative about re-working the relationships between Catherine, and family, and government, and 'agency', and life-sharing companions.

Has it always been smooth? Well, as Charles Shultz's Charlie Brown reminds us, "Grief is a Constant". Look at what the last two weeks has been like for Amber and us. This week's dance has us awake at three in the morning. This week's dance even had some scary moments. But look! There's a little bit of light coming back into her eyes. A trace of humour flickering across her face. And as I left her room a few minutes ago to continue writing this letter, she turned and said, "Welcome!" (actually, 'wo-cum', which we know really means 'thank you').

Yes, she's breathing better, just a little bit at a time. And so are we.

Love,

David

 
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