Journey to Independence

It’s a beautiful vision on the horizon — your special needs child all grown up, a capable and independent adult.

But when children are young, that horizon can seem very far away. How to get there? What could and should be done now?

There’s no crystal ball, of course, but one thing parents can know with certainty is that knowledge and insights in medical science and education will only continue to grow during all the years of a child’s development. Whatever your child’s special needs, in no generation previous has there been a better time to be optimistic.

Preparing your child for adulthood begins long before job-skills training or learning to balance a checkbook. There is no recipe or 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 every child has. 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 he belongs; is connected to others; is valued, capable and needed. Wings — knowing he 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 your child’s relationship with you (and with 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 packet of issues or symptoms. DO emphasize your child’s strengths and use them to build his confidence in himself.
<>DON’T let his special needs drive a wedge between him and the rest of the family. See your special child as a full-fledged member of the family — with needs, yes, but also with responsibilities to others.
DON’T focus 100 percent of your attention on him in a manner that suggests that other members of the family are not equally important. DON’T sacrifice all of yourself for the needs of your child, neglecting siblings who also are “works-in-progress,” not allowing time for grandparents, cousins and friends. This sends a message to the child that he is the hub of the wheel around which everyone else turns. It’s not a message that will serve him 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 multidimensional adult — who enjoys life, is involved in community, takes good care of her own health and allows herself fun, respite and recreation — sets the best kind of example for your child.
DO praise your child’s efforts, not the outcome or the result. Keep the focus on what she can do, rather than what she can’t do. Know that every child has the capacity to achieve more than what she is currently able to do, but that for her, learning a skill requires exponentially more repetition and practice than it might for a typically-developing child.
DO recognize 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 your child learn anything other than that she can’t trust you.
DO realize children learn more eagerly through fun. Your child will learn any skill much more quickly if you make it relevant to her life and interests. There is always more than one way to accomplish a task — find the ones that makes sense to her.
DON’T “therapize” your child, filling his days with rounds of adults who are all trying to fix something. Think about the message this sends to the child.
DO involve yourself and your family in every creative way you can. Interact!
DO what your child loves and do it with him, practicing motor skills, social skills 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 and the sandbox and the puddles.
DO throw out standard measurement assessments, such as growth charts or speech/cognitive/motor milestones, aimed at the general population, and foget using “normal” as a measure of where he should be.
DO respect your child’s unique trajectory.
DO encourage your child to explore, to interact with people, to 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 of learning and pace of learning is accommodated.
DO trust your instincts. You are the authority on your particular child.
DO talk to and listen to other parents, but do not accept their experiences as have-to’s to your child. Regardless of whether every family you encounter is using this diet or that therapy, if your gut and your experiences are telling you it isn’t right for your child, DO listen to that little voice and DO 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. DO 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 it’s a process, and that you can take time to acclimate to new information before acting upon it … or choosing not to.
DO know this: The most important thing parents can do is to help their children laugh, play and build relationships with all the people in their lives. That’s more important than therapy, speech and language, cognition. When a child feels connected, he has the internal motivation he needs to do all those other things.

And amid all you are trying to accomplish, remember you have time. Pace yourself. You have today and tomorrow. You have next week, next month, next year and many years to come.

Finally, never forget that a parent’s attitude toward a 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.

Patti Rawding-Anderson, MA, MS PT, a pediatric physical therapist with 30 years experience supporting children and families, is the director of Program Development/Early Childhood Services with Easter Seals New Hampshire.