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Summer 2005 Table of Contents
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Transition Matters: Yikes! Consider Life Without School! Planning Now for a Good Life for Your Child With a Disability

By Rosemary Alexander, Texas Parent to Parent Volunteer and Mom to Will, Austin, Texas

Abstract: A parent shares helpful strategies families can use to create a meaningful life after their child with special needs graduates from school.

Keyword: parenting, transition, futures planning

Think of the benefits your child receives from the school system: a safe place to be all day, with opportunities for learning, enrichment activities, behavioral supports, exercise, nursing support, contact with caring adults besides yourself, structure and routine, job training and experience, and friendship. And it’s free. And a law mandates school services, based on a plan created with your input.

Now picture your child’s life devoid of these opportunities. That’s life after graduation—nowhere to go, nothing to do, no friends, no assistance, no plan, no voice, no free activities! Wow! Get scared now.

How can you and your family work now to create opportunities for work, friends, and meaningful activities for your child after graduation?

  1. Start now, whatever the age of your family member with a disability. Get over your fears, denial, inertia, ignorance, or whatever is keeping you from facing this issue. Focus on what your child needs.
  2. Get your child’s name on the waiting lists for community supports; these lists have an 8 to 10 years’ wait.
  3. Learn about other community supports and services for adults in your community, such as Resource Centers for Independent Living, MHMR, DARS (TCB), The Arc, SSI/Medicaid. Find out what your child is eligible for and how to access these services and supports. Become knowledgeable about other important transition issues: guardianship and power of attorney, estate planning, the school-based transition process. Be prepared for each step.
  4. Realize that public funding does not guarantee a good life. Do not depend on these services for everything; here’s where bold thinking, planning, creativity and collaboration come in.
  5. Create a plan: sit down with your child, other family members, friends, anyone who knows your child, and brainstorm together about the future. There are several planning tools out there, such as Person Centered Planning. Using this approach, ask your son or daughter: what do you like? What do you dislike? What are you good at? What are your talents and strengths? What supports do you need for living and working? What are your dreams for the future? Write down his or her responses and include the comments of the other participants. Then write an action plan for one of the dreams or goals the group has identified. These goals could be anything, lose 20 pounds, get a job, find a friend, move into an apartment, learn to read. It doesn’t matter as much what the goal is as the process of gathering a group together and talking about the future. Most goals lead back to the basics and will move you along toward the future. Remember to encourage your child to participate as much as he can; if he is nonverbal, the group must speak on his behalf, as you imagine he would speak if he could. Siblings are often great at this and everyone enjoys being asked to speak up.
  6. Teach your child to speak up for herself, to be a self-advocate. IEP meetings are a great place to practice advocacy skills: your child might start by introducing the people around the table and eventually become able to discuss goals and services. These skills will assist her to get the help she needs when you are not around to speak for her.
  7. Be sure that your child is learning social skills wherever opportunities arise
  8. Be sure that your child is learning job skills. Give her chores to do at home; as she gets older, perhaps she can volunteer in the community. Be sure the school is providing vocational training and experience in secondary school. Help your child learn to take responsibility, show up on time, get along with the boss, acquire the skills needed to get and keep a job. Even people with the most profound disabilities can work in some capacity. And work is another way to add meaning to life and find friendships.
  9. Build networks for your child. Find people to involve who might be willing to take on some of the roles that you now fill in your child’s life. Remember, no school services! What will your child do and with whom?

    And build networks for yourself. The transition process is hard emotionally, as you face your fears about a time when there are no school supports and even the time when there’s no you! Letting go of these children whom we have worked so hard to raise, protect, and figure out is not easy; we have invested so much emotionally by going through grief, shattered hopes, trial and error, that sometimes it’s hard to stop doing it all for them. Find other parents going through this transition and build supports for each other. Perhaps together you can build a good life for your children!

  10. Picture a life for your family member with a disability that you yourself would enjoy living. Our dreams help us to keep our children from empty lives. So imagine your child as an adult living a “good life:” living in a place you would like to live, working, participating in the community, with opportunities for friends, fun, fitness, surrounded by people who care about him. Then start to work to make this a reality!

Now you are probably feeling quite overwhelmed. So take a deep breath and prioritize. You don’t have to do it all at once. Start by getting your child’s name on the waiting lists, then start educating yourself. Consider what needs doing now, what’s most important for now. And keep reading this column for more concrete advice on planning for the future.

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Last Revision: September 1, 2010