MomRN.com - Parenting a child with special needs article

Parenting a Child with "Special Needs"

There have been many labels used over the years to describe children who are not "normal"; such as, "handicapped", "physically-challenged", "disabled", "retarded", "developmentally delayed", and the latest label, "special needs". Personally, I think that every child is special and all children have needs. But "special" children have a few extra "needs" that their parents and caregivers must fulfill in order for those children to thrive. My own parents did a wonderful job of fulfilling these needs for me after I was born with a birth defect that resulted in my having to use an artificial leg. By fulfilling these needs, they gave me the ability to survive and thrive in this world. I hope that by sharing what I have experienced and learned, both as a child growing up with a disability and as a mother whose oldest child was born with clubbed feet, I can help parents of children with these "special needs."

One of the most important needs that these children have is the need to be treated "normal". They may require specialized medical care but they don't require "special treatment" from their parents. Simply put, these children need to be treated like any other child as much as possible. How do you do this? By forgetting the disability and remembering the child. Look beyond the physical and/or mental disability and recognize that behind it is a child just as "normal" as any other and wants to be treated that way. My parents always treated me as a fully capable person and never considered me to be "handicapped" but as a typical kid who just happens to have one leg. I am no better than and no worse than anyone else. My disability does not define who I am, it is simply a part of me. Your child, no matter what his or her disability, is still a child and should have every opportunity possible to enjoy being a child.

Although my parents were able to treat me as a normal child, they still had to deal with people who did not. They didn't attempt to hide my disability or try to shelter me from the stares, whispers, and name-calling that sometimes came from other people. They taught me not to be ashamed or embarrassed about my leg but to answer questions about it so people could understand. I soon learned that once people understood my disability they usually treated me as a normal kid too. I also learned that not everyone had bad intentions for treating me differently. Quite often they had good intentions. For example, one gym teacher in elementary school was worried about letting me try the balance beam until my mother told him that he didn't need to be so protective. He was afraid that I would get hurt but she explained that I would be hurt more by having to sit out than I would if I fell off the balance beam. After that, he wasn't afraid to let me try the balance beam or any of the other physical activities that I wanted to participate in (which was everything that the rest of my class got to do).

My parents understood how much I wanted to be allowed to participate in the same activities as my peers. This is another important need but one that some parents have a difficult time with because of fear. As parents, we want to protect our children and it can be hard to let them risk failure or even injury. This is especially hard when your child has a disability. It hurts me when my daughter comes home from school upset about losing a race in gym class because of her feet. Part of me wants to protect her from the pain of losing, but that would do more harm than good because children need to experience both failure and success. So, I encourage her to keep trying and to remember that doing one's best is more important than winning or losing. Now I understand how hard it must have been for my parents. I never won a race, never made a homerun, and wasn't very good on the balance beam but I am grateful that they didn't stop me from trying. They were able to set aside their fears and let me participate in sports and other physical activities (as long as my doctor agreed). If you are unsure if an activity or sport is appropriate for your child, talk with your child's doctor. There are many children with disabilities who do all kinds of sports (just look at all the sports in the Special Olympics). Many sports and physical activities can be tailored to accommodate a disability so if your child is interested in a particular one, find out if there is a way that he can participate. Taking part in sports and activities is a great way to help a disabled child feel "normal". It had a big impact upon my life.

When I was seven, I expressed an interest in baton twirling during the half-time of a football game. My mom immediately set about finding a baton twirling instructor. We found a wonderful teacher, Doris, who was willing to teach me and allow me to participate in group routines even if she had to adapt some of the dance steps to accommodate my leg. Doris let me march in parades with my class even though in the early days I could only make it about halfway then had to be carried for the rest of the parade, (usually on her husband's shoulders). Eventually, I was able to march the whole parade route. One year I even marched in three Christmas parades in a single day. My mother was concerned that my leg would hurt after so much marching but she knew how important it was to me so she reluctantly let me. The pain afterwards lasted only a few days but the feeling of success has never gone away. By giving me the freedom to participate in sports, my parents and teachers helped me to achieve successes and to experience failures. They instilled in me the belief that I could do just about anything I set my mind to as long as I was willing to work a little harder for it than everyone else.

My parents also recognized that children need responsibilities, even disabled children. Responsibility teaches a child self-discipline and helps him develop a sense of self-worth. My parents expected me to help with chores around the house, to clean up after myself, and to help take care of my younger siblings. Because they never treated me as "helpless", I never saw myself that way. Instead of feeling like a burden to my family, I felt like they needed me as much as I needed them. Almost any child can be given tasks tailored to that child's abilities. Assess your child's strengths and abilities, then give him responsibilities to fit them. Even if the child needs assistance to carry out his responsibilities, he will still benefit because he will learn to see himself as a contributing member of his family and eventually, of society. It doesn't matter how big or how small the task, the benefit is the same.

Another need that disabled children have is the need for discipline. All children misbehave or disobey at least once in awhile. Children with disabilities do too and they need to be disciplined just like any other kid. It's natural for children to "test their limits" to learn right from wrong. Parents need to set those limits and enforce them so kids can learn. This is one of the most difficult tasks of parenting. So it's no surprise that it can be even harder when your child has a disability. Some parents may feel guilty about disciplining because they feel sorry for their child. So they make allowances and excuses for inappropriate behavior. That is a great disservice to the child. It teaches him to use his disability to get his way. It also makes it very difficult for these children when they grow up and have to live in the real world which isn't as forgiving and understanding. You can love and accept your child unconditionally without accepting bad behavior. I was never allowed to use my leg as an excuse for bad behavior and was taught that the world did not "owe" me anything. I was taught to take responsibility for my actions and accept the consequences; a valuable lesson that every child should learn, disabled or not.

Finally, a child with a disability needs help to accept the disability in a positive way. Sure, there are plenty of negatives that come with any disability but if you look closer, there are positive things to be found as well. For me, any complaints I have about living with an artificial leg pale in comparison to the good things that have resulted. Having an artificial leg has brought me into contact with many wonderful people that I probably would not have met otherwise. It has given me the opportunity to help others faced with a disability to see that it is possible to live life fully. It gave me the chance to be on television, on the radio, and in the newspaper as a role model for other children with disabilities and to bring awareness to organizations such as the Shriner's Hospitals for Crippled Children, Easter Seals, and the March of Dimes. Because of my leg, I dealt with doctors, nurses, and hospitals on a regular basis which heavily influenced my decision to become a registered nurse. (Not to mention all the great practical jokes I've been able to play over the years!) All of these things have enriched my life far more than my leg has hindered it. What some may call a curse or tragedy, I choose to call a blessing. I sincerely hope that somehow you and your special child can find a way to look upon his or her disability in the same way.

Whether your child has a minor disability, a severe disability, or even multiple disabilities, he or she needs your loving support, acceptance, and guidance more than anything else. You also need support and guidance to help you deal with raising a special needs child. Seek out resources for parents in your situation. There are numerous support groups, web sites, books, and other resources available to assist you in raising your child and fulfilling your child's "special needs".