The Quest for Independence

Dear Friends,

Children just naturally grow up seeking independence. Early childhood skills such as tying one's own shoes are announced with great pride, "Look! I did it all by myself!" I've watched my children grow as they graduate from the high chair to the regular chair, when they become tall enough to reach the counter, and then the sink to get their own cup of water, all the way to getting their drivers' license and beyond. All of these family memories are framed with my childrens' reach for independence, and the sense of satisfaction that each of life's achievements brought them. 

This desire for independence is no less significant to our children with special needs. But this is a huge subject that needs to cover such a tremendous range of disabilities to be fair that I can only touch on a few things briefly in one essay. I believe it is an important subject to discuss.

Over the past few months I've had numerous conversations with young people who have various disabilities, and it comes up very often that they dream of greater independence in their lives. I've talked with many parents about how they dream of greater independence for their children, which is often accompanied by fears of if that is possible, and a reluctance to let go of the protectiveness that they've had over their child.

No one would want to live in a world where every single choice has been predetermined for them, yet that is close to what many individuals with special needs are forced to endure. One young man with a physical disability explained to me that he really wants to have a say for himself in what he will eat each meal, or whether he needs to wear a coat or not. Since he has had to have specialized care all his life, he is used to people deciding what he needs to eat, what he needs to wear, when he is thirsty, and he goes where he is taken. His dreams are simple: to one day be able to make these choices for himself. It is his personal quest for independence. 

As parents of special needs children we are used to being over-protective. In an overwhelming number of instances we have to be. However, that does not diminish the personal need that our children all have to be a more independent individual and to lead a more independent life. So lately I've been trying to explore this concept with a few other parents to discuss how we can facilitate greater levels of independence for our children. 

It's not an easy solution, because each person with special needs is a unique individual, having areas where they can pursue independence, and areas where they cannot. But that being said, enabling greater feelings of independence for our children is part of helping them to lead the most fulfilling life possible. 

The subject is often accompanied by a great deal of frustration. One young man I know who has a physical disability lives on his own, works, drives, and is completely capable of taking care of himself. Yet he endures a constant stream of direction and criticism from family members who do not feel any sense of confidence in his ability to be independent. He feels it isn't fair, and he is right. His family is failing to realize that out of their caring and concern for him they are smothering his sense of pride in being able to make it on his own. 

Another friend is in a wheelchair, and she is unstoppable! She leads a very energetic life that might exhaust some people, taking care of herself and even helping to care for others. Her frustration comes when certain relatives want to put her brakes on, telling her she can't do this or that, or worrying that she will get into a situation and need help. They care for her, they mean well, but they are stifling the joy she feels in the independent life she is clearly capable of leading. 

Being independent doesn't necessarily mean doing everything on your own. It doesn't mean you don't need anyone else, or need your parents or care-givers to do things for you. What it does mean, especially for individuals challenged with special needs, is that you are able to make certain decisions for yourself and you are encouraged toward as much independence as you can handle. It means being allowed to grow, mature, experience, even fail at times. 

Mark E. Smith, author of Growing Up With Cerebral Palsy, credits his mother for not only encouraging him but demanding that he learn to do things on his own. "You can do anything anyone else can do," she would say. "It may just take you longer to do it." He has described the day as a kid she had him take his first bath completely on his own. It was an overwhelming experience for him at first, and it took him several hours, but he got the job done, on his own. Afterward he felt an inner strength and personal power that there were much greater things he could take on. And he has. 

It is important for any of us to realize that the quest for independence is strong in the hearts of our loved ones who are challenged with special needs. In many situations it may take a very creative approach to empower those feelings of independence, yet how exciting to see that effort rewarded in a happier, more fulfilling life for the individual. If you have a personal story or experience to share, I would love to hear from you. 

Among my friends and acquaintances I know seven parents whose special needs children are off to college this fall. A couple of the parents have confided to me how difficult it has been to "let go" knowing they won't be there each day and night for the needs their child may have. They have to trust both their child and those who now share life with them that everything will be ok. But what a great experience! Three of the children have Downs Syndrome, two are in wheelchairs, and three have varying forms of Autism. Those remarkable young people have already come so far against constant challenges and struggles. And now they will experience new things, make new friends, learn skills and make their way in their own personal quest for independence. 

My best,


Brian Wulf