Stepping Stones: A New Hampshire guidebook for people with disabilities, their families and the professionals that support them

From Past Editions

Start young to guide your special-needs child to adulthood

By ELLEN NOTBOHM with PATTI RAWDING-ANDERSON

Published: Tuesday, February 27, 2007

It’s a beautiful vision - your special needs-child all grown up, a capable and independent adult. We all want to create and hold that vision, but, when your child is young and still unfolding, it can seem very far away indeed. How will we get there? What should we be doing now? Is it even possible?

There is no crystal ball, of course. Would you want one? Although “fortune-teller” is not one of the services provided in a typical Individualized Education Program (IEP), you can know with certainty that medical science and education will only continue to grow during all the years of your child’s development. Whatever the special needs may be, in no previous generation has there been a better time for optimism.

Preparing a child for adulthood begins long, long before job skills training or learning to balance a checkbook or navigate a grocery store. The good news/bad news is that there is no recipe, no how-to manual that will have all the answers for your unique child. But the seeds of preparation lie in just that - the special abilities, strengths, interests and motivations that every child has, regardless of ability. The most important brick in your child’s road to adulthood is recognizing those special components and using them to develop your parent-child relationship in a way that gives him both roots and wings. Roots - knowing that she belongs, is connected to others, is valued and capable and needed. Wings - knowing that she has the inner resources to learn and do and, with practice and patience, succeed.Today is a great day to start that journey! Here are some do’s and don’ts to watch for along the way:

DO recognize that your child’s relationship with you and all the members of your family will be the single strongest determinant of his success as an adult. See your child as a whole child, not a set of issues or a packet of symptoms.

DO emphasize your child’s strengths and use them to build her confidence in herself as a member of the family and a citizen of the world.

DON'T let his special needs drive a wedge between him and the rest of the family and community. See your special child as a full-fledged member of your family - with needs, yes, but also with responsibilities to the other members.

DON'T focus 100% of your attention on your special child in a manner that suggests that other members of the family are not equally important. Thinking you need to sacrifice all of yourself for the needs of your child, neglecting the needs of siblings who are also “works-in-progress,” not allowing time for extended family - all of this sends a message to the child that she is the hub of the wheel around which everyone else turns. It is not a message that will serve her well in adulthood.

DON'T neglect yourself! Taking time to nurture yourself is not selfish; in fact, it’s just the opposite. Letting your child see you as a multi-dimensional adult who enjoys life, is involved in the community, pursues hobbies, takes care of her own health, allows himself fun and respite - sets the best kind of example for your child.

DO praise and reward your child’s efforts - not the outcome or the result. Keep the focus on what he can do, rather than what he can’t. Know that every child has the capacity to achieve more than what he is currently able to do, but understand that, for the challenged child, learning a skill requires exponentially more repetition and practice than it might for a typically developing child.

DO recognize that it is your responsibility to provide not only the opportunities for practice - but also to maintain patience throughout the learning process. Impatience, exasperation or “letting her learn the hard way” through humiliation or embarrassment will not help her learn anything other than that she can’t trust you.Clearly, finding the fine line, the “just right” amount of challenge for your child, can be tricky. If you set the expectation too high, the child feels defeated before even starting. “Why try?” he thinks. If we set the expectation too low, we promote dependency and instill lack of faith. “Why try?”

DO realize that children learn more eagerly through fun, that fun is the doorway to exploration, that exploration is the doorway to motivation and that motivation is the key to learning.

DO remember that your child will learn any skill faster if you make it relevant to his life and interests. Rid his life of “busywork” that has no relevance to him. There is always more than one way to accomplish a task - find the ones that make sense to him.

DO involve yourself and your family in every creative way you can. Interact! Therapy shouldn’t be limited to the clinic; skills learned in therapy will be valuable only when applied to real life.

DO what your child loves and do it with him - practice motor, social and language skills by getting in the pool or the ball pit with him. Go to the zoo and the library and the park; play in the snow, the sandbox and the puddles.

DON'T use ‘normal’ as a measure of where she ‘should’ be. Respect her unique trajectory.

DO encourage your child to explore, interact with people, laugh and be curious, and do it with the understanding that, regardless of ability or disability, he is going to grow and develop and flourish if his way and pace of learning are celebrated.

DO trust your instincts. You know more than you think you know, and you are the authority on your particular child.

DO talk to and listen to other parents, but DON’T accept their experiences as have-to’s for your child, If your gut and your experiences tell you that a popular diet or therapy isn’t right for your child, listen to that little voice and keep looking for the best “fit” for your child and family.

DO think of your therapists and professionals as guides, not “bosses,” on your child’s journey to adulthood and be willing to listen to the information they give you, even if you are not quite ready to hear some of it.

DON'T feel obligated to react to everything you hear at the same moment you hear it. Remember that it’s a process, and that you can take time to acclimate to new information before acting upon it - or choosing not to. Remember that your therapists, teachers and professionals do what they do because they truly care about children and families, but it’s your child, your decision, your journey.

The most important thing a parent can DO is help his child laugh, play and build relationships with all of the people in their lives. That’s more important than therapy, more important than speech and language and more important than cognition. When a child feels connected, he has the internal motivation he needs to do all those other things.

Amid the bustle and the stress of all you are trying to accomplish, remember that you have time. Pace yourself. You have today, tomorrow, next week, next month, next year and many years to come.

And finally, never forget that a parent’s attitude toward the child is going to be that child’s attitude toward himself. If helping create a sound social-emotional sense of self is not the primary focus of what you are providing to your child, no amount of “therapy” or “education” you layer on top is going to matter. See her and celebrate her as the capable, interesting, productive and valuable adult you have every reason to believe she can be. And hold that vision, because, through your eyes, she sees it too. Seeing is believing, and believing makes it happen.© 2006 Ellen NotbohmEllen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew, a ForeWord 2005 Book of the Year finalist, and Ten Things Your Student with Autism Wishes You Knew, a 2006 iParenting Media Award winner. For article reprint permission, to learn more or to contact Ellen, please visit www.ellennotbohm.com.

Patti Rawding-Anderson MA, MS PT, a pediatric physical therapist with 30 years experience supporting children and families in a wide variety of settings, is Director of Program Development, Early Childhood Services, Easter Seals New Hampshire. Contact her at pedipt@comcast.net.