The most profound shock in a parent's life may be learning that his or her child has a disability. All the hopes and dreams for the future of that child suddenly seem hollow and empty.
Parents are often depressed and grief-stricken. It is as if the child they knew had died and a strange child had been left in his place. Sometimes parents blame themselves for the disability. They feel it is a result of something they did or did not do, or they feel they should have recognized the problem sooner. They feel they have somehow failed as parents.
Often, parents feel angry with their physician or the professionals who tell them the diagnosis. They may feel that the medical profession, which they had put such faith in, has failed them. Parents may also discover they have negative feelings about disabilities in general or their child's disability in particular.
All these feelings are normal. But they are hard to deal with and hard to live with. As parents struggle with their own reactions of shock and disappointment, they may find that their normal support systems fail because friends and family are also struggling to cope with their feelings. Parents may find themselves vulnerable to and resentful of advice and comments offered by friends, relatives, and self-styled experts. Parents often find themselves overwhelmed by information they are trying to understand and by decisions they believe must be made immediately.
Initially, parents may not be able to absorb all the information given to them. They may be worried about the effect of the disability on other children in the family and deeply concerned about their ability to relate to the child with a disability.
It may be helpful to talk to someone with experience in dealing with these emotions, someone who can help you sort out your feelings and recognize your responsibilities. Your religious leader, a psychologist, a psychiatrist, or another trained counselor may be helpful. Many parents find the greatest relief and comfort in talking to other parents who have lived through similar experiences. Parents should not try to hide or ignore their grief. In time, the pain lessens.
For some parents, the best method to cope with depression is taking action on behalf of their child, whether it is enrolling her in a therapy program or a school, talking to a specialist about prosthetic devices (an artificial limb, a wheelchair, or a hearing aid), or contacting a national organization for more information.
You may look at your child with new eyes, and in the beginning that can be difficult and painful. You will establish a new relationship with this child, different from what you may have planned and expected. But it can be a relationship that is fulfilling and rewarding as you work with your child to discover his full potential.
A generation ago, children with severe disabilities often died of complications, if not of the disability itself. Children with disabilities were consigned to institutions, where most had little chance of developing. Disabilities were hidden away, not discussed.
Today, attitudes are changing. Parents are now encouraged to keep all but children with the most profound disabilities at home. Fewer full-time residential institutions are available, and state and local agencies provide more technical and financial support services directly to families. In most states, foster care is available for families who do not feel they can cope with the burden of a child with a disability. Parents may also want to consider "respite care" from time to time. Respite care is designed to give parents an occasional day, evening, or even longer, to attend to themselves. Programs that offer respite care recognize the effort and frustration of caring for a child with a disability. Most pediatricians, pediatric nurses, and home health nurses can refer parents to a respite care program.
Technological advances in medicine have enabled doctors to surgically correct many problems that afflict children with Down syndrome, spina bifida, clubfoot, cleft lip and palate, and heart malformations so these children can be more easily cared for at home. Many formerly fatal conditions, such as hemophilia, can be treated.
Even with support services, the burdens -- physical, emotional, and financial -- fall heavily on families with children with disabilites. Treatment may not cure a child with a disability, although procedures that today are somewhat controversial for children, such as cochlear implants, may prove to be near-cures of the future. Parents must take time to ask questions and become informed. One of the best sources of information are other parents of children with similar disabilities.
If no parent-support group exists in your area, consider starting one. Names of other parents who are in similar situations can often be provided by national organizations, medical specialists, professionals in the field, and state and local health departments. Contact with other parents, even parents in different locations, gives you a chance to gather and exchange helpful coping tips and practical information and to discuss some problems relating to discipline at home and to relationships with peers and with family. Contact with other families also gives your child an opportunity to see other children like himself and gives you a chance to see what other children with similar disabilities can accomplish.
Your local library may have the names and addresses of national organizations that are concerned with specific disabilities. Medical services and assistance are provided by state and local health and welfare departments (look in the telephone pages under your state agencies). Departments of children and family services and services for children with disabilities may also provide information about funding, special programs, and institutions in your area. Local service organizations, such as the Variety Clubs, Lions, Elks, Shriners, and Jaycees often provide scholarships and help to support hospitals and other programs that serve children with disabilities.
Remember that your child's handicap is not your fault, and no one can cope with it alone. Embrace your child for who they are, avoid feelings of guilt or anger, and seek out help from others who have cleared these same hurdles.
To learn more information about caring for handicapped children and other disabilities, check out the links on the next page.
ABOUT THE CONSULTANTS
Alvin Eden, M.D. serves as a Clinical Professor of Pediatrics at the Weil Medical College of Cornell University in New York, New York. He is Chairman of the Department of Pediatrics at the Wyckoff Heights Medical Center in Brooklyn. Dr. Eden is also the author of a number of child care book, including Positive Parenting and Growing Up Thin.
Dr. Elizabeth Eden, M.D. is a practicing obstetrician with her own private practice in New York City. She serves as an attending physician at the Tisch Hospital of the New York University Medical Center, as well as a Clinical Assistant Professor at the New York University School of Medicine.
This information is solely for informational purposes. IT IS NOT INTENDED TO PROVIDE MEDICAL ADVICE. Neither the Editors of Consumer Guide (R), Publications International, Ltd., the author nor publisher take responsibility for any possible consequences from any treatment, procedure, exercise, dietary modification, action or application of medication which results from reading or following the information contained in this information. The publication of this information does not constitute the practice of medicine, and this information does not replace the advice of your physician or other health care provider. Before undertaking any course of treatment, the reader must seek the advice of their physician or other health care provider.