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by Ellen Notbohm Helping your child become a capable, independent and self-confident adult starts now. It’s a beautiful vision on the horizon - our special needs child all grown up, a capable and independent adult. We all want to create and hold that vision. When our children are young and still unfolding, that horizon can seem very far away indeed. We have no crystal ball, of course. And would we want one? Difficult as it is, to miss the richness of the journey and the discovery within it is not something we should wish away lightly. And although ’fortune-teller’ is not one of the services provided on a typical IEP, we can know with certainty that knowledge and insights in medical science and education will only continue to grow during all the years of your child’s development. Whatever your child’s special needs, in no generation previous has there has been a better time to be optimistic. Preparing your child for adulthood begins long, long before job skills training, 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 he belongs, is connected to others, is valued and capable and needed. Wings - knowing that 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 that 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 set of issues or a packet of symptoms. DO emphasize your child’s strengths, and use them to build his confidence in himself 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 of the family. 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 grandparents, cousins and friends - all of 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 multi-dimensional adult who enjoys life, is involved in community, pursues crafts and sports, takes good care of her own physical and spiritual health, allows herself 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 she can do, rather than what she can’t do. 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 him learn the hard way” through humiliation or embarrassment will not help your child learn anything other than that he can’t trust you. Finding the fine line, the “just right” amount of challenge for your child can be tricky, no doubt about it. If we 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 much more quickly if you make it relevant to his life and his 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 makes sense to him. 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! Therapy shouldn’t be limited to the clinic; skills learned in therapy will be valuable only when applied to real life. From the time your child is wee, let him know that your family is there to be part of his life. DO what your child loves and do it with him - practice motor skills, social skills, 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. DON’T use ’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 or she going to grow and develop and flourish if his or her way of learning and pace of learning is 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 to your child. Regardless of whether every single family you encounter is using this diet or that therapy, if your gut and your experiences are telling you that 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 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 decisions, your journey. The most important thing a parent can DO is help their child laugh, to play, to build relationships with all of the people in their lives. That’s more important that 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. And amid the bustle and the stress of all you are trying to accomplish, DO remember that you have time. Pace yourself. You have today, and tomorrow. You have next week, next month, next year and many years to come. And finally - never forget that a parent’s attitude towards the child is going to be that child’s attitude towards 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 him and celebrate him as the capable, interesting, productive and valuable adult you have every reason to believe he can be. And hold that vision, because through your eyes, he sees it too. Seeing is believing, and believing makes it happen. Two-time ForeWord Book of the Year finalist Ellen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew and Ten Things Your Student with Autism Wishes You Knew. She is also co-author of the award-winning 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, a columnist for Autism Asperger’s Digest and Children’s Voice, and a contributor to numerous publications and websites around the world. Her latest book is The Autism Trail Guide: Postcards from the Road Less Traveled. To contact Ellen or explore her work, 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.
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