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Summer 2005 Table of Contents
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Transition Matters: My Own Transition Story

By Rosemary Alexander, Texas Parent to Parent Volunteer, Austin, Texas

Abstract: One parent shares her experiences in creating a meaningful life for her adult son with special needs.

Keywords: parenting, transition, futures planning, personal experience

At my house we are through the first year of PG—post graduation. My son Will graduated from public school last May, soon after his 22nd birthday, and this past April he turned 23. It’s not been an easy year, even though we in Will’s life planned and worked hard for PG, but I have learned a lot about what’s working well and what is not, and I feel hopeful about the future! Hope is a rare commodity in this transition experience, so I’d like to share our story to give you some hope—and some ideas.

First I’ll tell you about Will. He has a great smile, an infectious laugh, and a slapstick sense of humor. He walks, though he falls easily. He learns routines over time and likes to be active. He enjoys riding an adapted 3-wheel bike, scribbling with paints and pens, and doing chores with another person’s help. He likes to give you something and get lots of praise in exchange. He loves to feel included and hates feeling excluded. He “gets” situations, quickly figuring out what’s going on and who might prove to be a friend. Assets in his pocket are a caring family and a funding source (one of those community supports that you have to wait 10 years to get). He does need lots of help—he doesn’t read, write or talk. He has had a terrible seizure disorder and must get his medications 3 times a day. He is not safe alone and needs help with eating, dressing and toileting.

When Will was a young teenager, I began to wonder what he would do “down the road.” At first, I pictured him in a group home, but absolutely not an institution. Those were the only 2 choices I knew about. Then I heard an Austin Travis County MHMR speaker say that group homes, as we have known them, are being phased out. I felt shocked and very angry with the system. Does that mean Will should live with us forever? I love Will and enjoy his company, yet I knew that I couldn’t provide his care forever. I also knew that I couldn’t let him live without high-quality care and people around him who enjoyed his company. I was feeling very pessimistic.

The year Will turned 18 was busy: we got guardianship for him, we signed him up for SSI/Medicaid, and we realized that “down the road” was nearly here. As I worried, I happened on a book called A Good Life, by Al Etmanski, and for the first time I could see a way through transition. The author of this book, with his wife Vickie Cammack, started an organization around 1990 in Vancouver, Canada, that helps parents answer the question, what happens after we die? How can we provide on-going support for my child with a disability after we’re gone? The first chapter talks about facing your own death. The second is about building a personal network for your child. The remaining chapters each focus on one major area of life: a home, work, financial planning, and guardianship. The book is full of stories about people who, with PLAN’s help, created personal networks for their family members with a disability and worked creatively on other issues for adulthood. I was hooked.

I gained from this book a sense of higher expectations that we don’t have to merely take what the government system provides but can dream of a life that suits Will. Then I had to think about what that life would look like, a realization that led me to person-centered planning. I found a facilitator in my school district to facilitate our planning sessions and invited 8 people to help us plan, my brother and his wife, an OT who had worked with Will, his job coach from school, some family friends, and our own family, myself and Bill and our son Randall. We met 3 times over 6 months, going through a series of questions about Will’s interests and strengths and then formulating our goals for him. Then we created an action plan for each goal and worked on each action plan.

One of our goals emerging from these sessions was to create a personal network, as described in A Good Life, so before long we had turned the planning group into a long-term network. Networks are for anyone who is at risk of isolation. You invite a group to meet regularly and become friends with one another and the person with a disability. The group stays involved, taking on various roles for the focus person, working to enrich and protect the life of the person with a disability. When a member has to leave the network, the group finds someone else to replace that person, thus ensuring longevity. Our network has met now about 4 times over a year. We meet at our house and eat together, talk about Will’s issues and celebrate our shared lives. I think of this group as the keepers of his person-centered plan, responsible for seeing that he gets to do what he likes best and can avoid the things he doesn’t like, that his dreams will continue to be our focus, that we base our decisions about Will’s life on his dreams, his joys and strengths. It is a remarkable feeling to know others are willing to become involved in Will’s life and care about his well-being. And the biggest fan of Will’s network is, of course, his brother!

One other step I have taken is to write down what I know about Will—his medical history, how hecommunicates, how to work with his behaviors, what food he likes, what shoe size he wears, where I buy his shoes, and much more. I have given a copy of—“Welcome to Will’s Life” to his network members. The notebook continues to grow and change as Will changes.

Now at age 23 Will works a few hours each week, delivering mail at a seminary and delivering sandwiches at two schools. (Remember that he likes to give you something and get lots of praise in exchange?) He goes swimming once a week, attends a few activities and classes and does all these things with an attendant paid by CLASS. He seems to have moved from school to life beyond school pretty well. There are times when an activity hasn’t worked out, sometimes he misses an activity because the attendant is ill, and perhaps he doesn’t have enough to do. It’s not easy to put together his life and I still feel that my system for him is fragile—there is no backup plan. I meet regularly with a group of parents who are trying to create a home together for our children, where we would share resources and costs and (I hope) create a more stable system for our children. But today Will has fun, seems healthy and stays active. It’s a work in progress. And I have hope that we can continue this journey and build a secure, quality life for Will.

One more step that I’ve taken was going to Vancouver in March of this year to attend a PLAN institute. I’ve come back to Austin eager to start a PLAN-like organization here and I’ve been welcomed into Texas Parent to Parent to create a center here focused on a quality life for our family members with disabilities. Good luck in writing your own transition story.

Editor’s note: The book Rosemary used as a road map for writing her own son’s transition story, A Good Life, is available at <www.plan.ca>. Rosemary will continue to write for the Texas Parent to Parent newsletter on transition issues, which can be found <www.main.org/txp2p/>. If you are interested in learning more or wish to start some of the PLAN’s ideas in your area, please contact Rosemary by calling Texas Parent to Parent at (866) 896-6001.

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