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by Kate Moss, Family Training Coordinator, Texas School for the Blind & Visually Impaired, Outreach Department
When time nears for a child to leave the nest, most parents feel both joy and dread. Many parents make that transition gracefully with the child who is not disabled. However, parents of children with dual sensory impairments or other severe disabilities are often confronted with issues they have never before considered. Although this can be a very stressful time, there are way to help make transition smoother. Even when a child is very young there are things that families can begin to do to plan for the future. What follows is a list of twelve things you may want to think about doing now to help prepare you for the time when your child leaves the educational settings where services are mandated and enters the world of adult services where services are based on eligibility.
Most people, when they reach a certain age or when they begin to acquire property and other assets know that they should have a will drawn up. Although we all plan to live to a ripe old age, there are no guarantees. It is doubly important for families who have a child with disabilities to plan for the distribution of their estate since many of the services the child will depend on as an adult can be impacted by the financial assets left to him or her. Many parents can find help in developing an Estate Plan from organizations such as Estate Planning for the Disabled, The Prudential, or lawyers well versed in the rules governing eligibility to services such as Supplemental Security Income, Medicaid, low-income housing, etc. Another important part of long-term planning for your child is developing a Letter of Intent. This is a document that outlines your wishes and provides important information about your child life that can be accessed by a court or those left to support and advocate for your child after you are no longer able to do so. Information on all of these services and documents is available through the Outreach Department by calling (512) 454-8631, extension 156.
The dreams that you weave for your non-disabled child from infancy help you to get ready for the time when that child is on his own. Parents of children with disabilities also need to begin early to generate dreams even though you may not be able to imagine a time when that child will live without your support. Given that most children do out live their parents, that time will come sooner or later. Imagine your child as the adult he or she will become. Think about what they will look like, where they might live, who will be their friends, what will they do to contribute to their community. Begin to share these dreams with family, friends, and educational staff. Parents may also want to consider learning more about Personal Futures Planning as a way to help generate a new vision for the future. Document your wishes in a Letter of Intent. Don't be afraid to dream big.
Many parents have difficulty imagining their child as an adult because they do not know adults with severe disabilities. This often hinders their ability to dream. This obstacle can be overcome in a number of ways. Attending workshops and conferences generally offers opportunities to meet parents whose children are older. Many parent organizations such as the Deaf-Blind Multihandicapped Association of Texas, the Association for Retarded Citizens, P.A.T.H. or other such groups will assist in making these parent-to-parent connections. There are also a number of consumer organizations such as the Texas Deaf-Blind Association, the Coalition of Texans with Disabilities, the Texas Association for Retinitis Pigmentosa which may help you meet adults with deaf-blindness or severe disabilities. Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) may also be a good resource for connecting with adults who would be willing to meet you and your child or share some of their stories.
It is also important to be familiar with the different support options for people with disabilities which are available in your community. This would include agencies and organizations involved in supported living, work, and recreation programs. Your local Mental Retardation Authority can generally supply information on groups homes, supported living programs, Medicare Waiver programs, supported work programs, etc. Your special education department, Education Service Center, and Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) may also have information on these programs.
Contacting other families through such parent support groups as The Deaf-Blind Multihandicapped Association of Texas, Partners Assisting Texans with Handicaps, or the Association for Retarded Citizens can also be helpful in learning about services. These organizations can help you learn how to advocate for services that do not currently exist. Remember, unlike educational services which are mandated for your child; adult services are based on eligibility. You need to help educate those service providers and the legislature about your child's needs, so services can be available when he needs them. Many of these organizations produce newsletters which can keep you up to date on changes occurring through legislation which will impact you and your child.
Many of the opportunities you seek for your child may come through your own community connections. For that reason it is important that you give yourself permission to take time away from the care of your child to keep or build your own community connections. Of course, finding a sitter may seem impossible. Forming sitter co-ops with other parents who have children with disabilities maybe one solution. Parents can take turns keeping each others kids so that each of them have an occasional time out. There are also respite care services and Mom's-day-out programs in many communities which are available for children with disabilities. Too often parents feel incredibly guilty if they send time on activities that are not directly related to caring for or educating their child. Keeping those community contacts and connections strong may be the most important thing you can do for your child's future. People who come to know and care about you can be strong allies in advocating for services for your child.
Help your child to develop a circle of friends from his community. The more people, both non-disabled and disabled, who know and value your child, the better that child's life will be when you are no longer around. Make sure your child's IEP goals include goals to develop a network of friends. See that he has opportunities everyday to interact with his non-disabled peers. Plan opportunities for your child to get to know people such as the neighborhood grocer, the post man, the waiter at the ice cream store, the kids that play at the park. Help other children to interact socially with your child by identifying things they can do together such as playing a computer game, shopping together, helping you make cookies, etc.
Although the services and supports provided by disability focused organizations and the educational system are important, it is also important to help your child make connections to individuals without disabilities. Learn more about the church groups, social organizations, recreational clubs and programs, as well as businesses in your community. Can your child access these groups and have opportunities to participate in activities in these settings?
Work activities can be as diverse as putting a napkin by a plate, picking up toys, helping sort items for recycling, or doing the laundry. Consider helping your child to become involved in service organization or volunteer programs. This could include things such as helping to pick up litter on the highways or play grounds, participating in programs that bring pets into nursing homes, scout service activities, helping to decorate the gym for the school dance, or carrying the paper to the porch of a neighbor who is elderly. Often times these types of activities can happen as a part of the school experience. Your child and those around him will benefit from the contributions he can make. These contributions, however small, also help to focus on his abilities rather than his disabilities.
One way to facilitate the development of friendships is through recreation and leisure activities. Include time for your child to learn a variety of activities that he can do alone and with others just for fun. Individuals with severe disabilities are capable of participating in a variety of recreational activities such as skating, bowling, arcade games, walking, swimming, etc. These activities will bring him into contact with individuals who also enjoy this activity, building in a common interest which can be a basis for a friendship to grow. Your child will also be happier (and so will his caregivers) if he has several things he enjoys doing on his own for fun. It may include starting a collection, listening to tapes, watering the garden, drawing, rocking in a rocking chair, or any activity that helps him relax or entertain himself.
Be sure to share key information about your child with individuals who will be involved in his life. Again, you might want to write a Letter of Intent which will include this type of information. You might also make a videotape to show examples of things that work or things that cause problems for your child. This might include information about the important relationships and events in your child's life, a mini personal history. You know your child better than anyone. The history you have can be invaluable to those individuals who come into your child's life.
Does your child have a way to communicate his basic needs to another individual, i.e., hunger, pain, fatigue, etc.? That communication may come through spoken language or sign language, pictures, objects, gestures, or signals. The form is not as important as its effectiveness. He also needs to be able to get assistance. For some individuals it may imply learning to use a TDD; for others it might mean vocalizing in a way that has been identified as their distress signal. Perhaps most importantly, does your child use his communication skills to interact socially with others? Seek opportunities to have conversations with your child at whatever level he is able to communicate. Teach him the joy of interacting with another human being.
TEA's Transitions Project and Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) can assist you and your child in planning for the transition from school to post-educational environments. Your school and your Education Service Center should also have staff who are knowledgeable about adult services. Discuss your need for information with them and ask for their help in planning. Remember, it is never too early to look to the future. Discuss the future with those involved in developing your child's IEP; make sure they are in tune with your vision. Of course, you may also contact TSBVI Outreach Department for assistance or if you need a sounding board for your concerns and ideas.
You may feel overwhelmed by this list of suggestions, but you don't have to begin to do all of them at once. Pick out one or two of these suggestions and start to focus on them. Let me suggest that drawing up a will or writing a Letter of Intent may be a good place to begin.
If you are the parent of a young child, it may be hard to feel the urgency of looking into his adult future. However, the sooner you begin to think in terms of preparing him to be an adult who is as independent as possible and connected to his community, the better off he will be when the transition is actually made. If you are the parent of an older child, you are probably aware of how quickly time moves on. Share your knowledge with others who are just beginning to look at the future. If you have not begun to plan, do so now.
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