The following is an excerpt from Reflections from a Different Journey, edited by Stanley D. Klein, Ph.D., and John D. Kemp. Copyright © 2004 by Stanley D. Klein and John D. Kemp. Reprinted by permission of The McGraw-Hill Companies Inc. All rights reserved.
I wish my parents had known that I would grow up to have a satisfying life — a life enriched by independence, fulfilling work, a loving partner, and good friends.
I know my parents worried about me. When I was young there were no laws guaranteeing people with disabilities the right to equal education, community access, and protection against discrimination. My parents had to fight hard to instill in me the capacity to thrive. While much has improved, raising a child with a disability can still be difficult. Reflecting on my own childhood, I have some ideas to share.
I believe that human beings have two basic needs: the need to feel competent and independent and the need to belong and be cared about. Having a full life depends on satisfying these needs. But some children with disabilities have difficulty doing that.
My physical weakness prevented me from achieving the milestones of independence that I saw other children celebrating — learning to walk, dress themselves, ride a bike, swing a baseball bat, and venture off on their own. I remained as dependent as an infant because I needed my parents to do almost everything for me, from dressing and toileting to cutting my food.
It was also difficult for me to feel that I belonged in the world. The physical environment excluded me with steps, curbs, and narrow doors, and I couldn't go to the inaccessible neighborhood schools, where most children find friends. When I was able to venture out with my parents' help, people treated me with rude stares or condescension. For me, the normal pathways to independence and belonging were blocked.
Parents can help by guiding their children toward alternative pathways. One most important way my parents guided me was encouraging my artistic creativity. I had a talent for the visual arts, which they nurtured by getting me art lessons, taking me to museums, buying me materials, and engaging in a variety of arts themselves. Drawing, painting, and sculpting gave me a sense of independence and competence because I could do them well and by myself. They also increased my sense of belonging.
Through my artwork, I could communicate my feelings and, therefore, felt less alone. The admiration and praise I received from my parents and others made me more confident and outgoing. Sitting at our kitchen table with my paints, crayons, and clay, I felt that I was part of a world of artists where I was valued and accepted, unlike the playground world, where all that seemed to matter was how hard you could hit a ball or throw a punch.
The ability to create has continued to be an important part of my identity. A sense of identity is formed over time. It is a process of challenge and growth for all children, but children with disabilities often struggle harder.
The first stage of identity development is the recognition of being a separate individual. Children with disabilities can find this more difficult if they are overprotected and never cut the proverbial cord. Like me, some may be afraid to assert their individuality because they don't want to upset their parents.
My brother, who had the same disability as I in an even more severe form, died when he was nine and I was six. As the survivor, I felt responsible for making up for my parents' loss by being very good and never complaining about the frustrations of being disabled. Denying my anger, I denied who I was.
Parents can help with this stage of identity development by being attentive, but not obsessed. When parents have their own interests and social lives, they and their children are both better off. When children are a parent's whole world, they find it harder to separate and become individuals. I remember hating when my parents left me with a sitter and went out to a movie or to visit friends. Now, I'm grateful that they had their lives and tried to let me have mine.
Parents can also help by being respectful of children's feelings. Looking back, I wish my parents had done a better job of helping me cope with my survivor's guilt. But, given their own profound grief, I can understand how overwhelming it might have been for them to pay attention to mine.
The second stage of identity development concerns the beginnings of initiative and independence. Children can have difficulty at this stage if they are unable to become more in control of their bodies, are too tightly supervised, and are not allowed to take some risks.
Parents can help in two ways at this stage. First, encourage children to express preferences and make choices. A relatively minor choice, such as letting them decide what clothes they want to wear, can be important. If my mother had taken me shopping, I would have matured by having to practice making decisions and I would have felt that the way I dressed was an expression of my individuality and taste, not hers.
Second, encourage children to take as much responsibility as possible. I can still remember the intense satisfaction I got when my father let me help him with household tasks such as painting the trim on the storm windows. If children are supposed to do certain therapies or take certain medications, let them start trying to remember these routines. In this way, they can develop pride and self-confidence, and, in the long run, they will be safer.
In the third stage, older children and adolescents must develop an optimistic sense of what their lives as adults will be like. Children with disabilities can have difficulty envisioning a good life if they don't see a way of becoming independent and don't feel attractive and able to form intimate relationships. When I became a young adult, because there were no personal care attendant programs, I had no idea how I would ever break my dependence on my parents. And, being acutely conscious of how different I was from the conventional standards of attractiveness, I had no sexual self-confidence.
Parents can help at this stage by connecting children with successful adult role models who can demonstrate the real possibilities for the future. Parents can also teach about human sexuality. Discussing this subject openly conveys the message that intimacy can and should be part of everyone's life.
This is also the time to begin making realistic plans for the future when mom and dad won't be around anymore. If children can foresee how they will continue to thrive when that happens, they will face the future with more confidence. For my family, this meant finding a public school system that would accept and accommodate me and prepare me for college and ultimately moving into the community.
As I reflect on my life, I want to emphasize (probably because it was difficult for me) the importance of expressing feelings, especially feelings of anger and loss. Sometimes, parents can feel guilty for giving birth to a child with a disability or "allowing" a disabling accident to happen. They feel helpless to ease their child's emotional pain. To avoid their own feelings of guilt and helplessness, they may stifle their child's expression of feelings.
But, experience has led me to appreciate uncomfortable feelings. They are signs of vitality that connect us to each other. Parents can best respond to a child's feelings by listening with empathy and respect. I strongly advise against saying things like: "Be a brave boy and don't cry" or "Other children are worse off than you." Such statements can make children feel humiliated and rejected. Parents also need to avoid unloading their feelings on their children. As I did, children can feel responsible for making their parents happy and can feel frightened and guilty, if they see their parents suffering.
Parents' feelings are important, too. From time to time, you will probably feel some sorrow and may ask: "Why me?" or "Can I cope with this?" But, at the same time, you will experience and relish the usual blessings of parenthood, and you may well discover within yourself personal strength and a capacity for growth that you never would have thought possible. For example, my parents became activists and spearheaded the passage of a state law that created the first of its kind day camp for children like me.
I am very proud of my parents. They weren't perfect, and neither is my life. Living with a severe disability remains a constant challenge that entails managing caregivers, maneuvering through service systems, and taking care of my health. I have been able to meet that challenge because my parents gave me their love and made me feel worthwhile. I strongly believe that the most important task of parenting is giving your children a foundation of self-respect. Everything else — your happiness and theirs — flows from that.
Paul Kahn, 58, has myotubular (centronuclear) myopathy.
For more than 20 years, he's been a writer, editor, psychological counselor and disability rights advocate. He has published more than 20 articles in national publications and written, co-authored or contributed to several books. Kahn is also a published poet and produced playwright.
Among other honors, he received MDA's Personal Achievement Award for Massachusetts in 1998. Kahn and his wife, Ruth, live in Newton, Mass.
Reflections from a Different Journey: What Adults with Disabilities Wish All Parents Knew, edited by Stanley D. Klein, Ph.D., and John D. Kemp, 223 pages, 2004, $18.95, McGraw-Hill.
At best, parenting is a vital and difficult job. To raise a child with a strong sense of identity, self-confidence and self-respect is no easy matter.
In this book, adults with a variety of disabilities and special needs have written essays on many parenting subjects — things the writers wished their own parents had read or been told when the authors were growing up.
These essays represent perspectives of people with a wide range of disabilities, including several neuromuscular diseases, from around the world, but with a common theme: the humanity of people with disabilities. The editors have successfully illustrated that people with disabilities are just like everyone else, each with his or her own strengths and limitations, simply looking for a decent quality of life.
Parents are reminded to accept their children as they are; and that as parents they're the most important experts on the child's life. From the wisdom of those who've been there come tips on topics such as setting expectations, educating the child and others about the disability, and dealing with sexuality.
No matter where you are in the parenting process, from struggling with a new diagnosis to raising an adolescent facing special issues or preparing for adulthood, this book has something to offer.
— Nancy Jones