Understanding Mental Handicaps in Children

Despite all the benefits of modern medicine, children are still born with genetic defects or mental disorders that will affect them throughout their lives, and may even shorten them. Luckily, our society is much better equipped to help handicapped children, and the families who raise them, instead of just institutionalizing or hiding them like warts. In this article, we will show you to cope with a handicapped child, including:

  • Warning Signs of a Child's Mental Handicap Even though we pray for our little one's health, babies can be born with genetic defects that affect the body's systems, like muscular dystrophy or Down syndrome, or certain mental disorders. More disorders include phenylketonuria, cystic fibrosis, Tay-Sachs disease, sickle cell anemia, hemophilia and thalassemia. Sometimes the fetus was altered during development. Other times the problem occurred later on. Children can also contract a serious illness within the first few years of life that adversely affects them later on. Parents who suspect a problem are encouraged to write down their concerns and list as many examples as possible to relay to their doctor.
  • How to Cope With a Handicapped Child Confronting the reality that a child has a disability can be a jarring and depressing experience. The feelings of hurt or loss can lead to anger at the physician who breaks the news, anger at the medical profession that seemingly let the parents down, and even guilt that something could have been done during pregnancy to prevent the handicap. Absorbing all the medical information coming their way can be difficult for parents, who may already be doubled over with grief. They should seek out support from a trusted source: a religious leader, a psychologist, a psychiatrist, or another trained counselor. Many parents find the greatest relief and comfort in talking to other parents who have lived through similar experiences.

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.

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Warning Signs of a Child's Mental Handicap

Babies can suffer from a range of genetic defects or mental disorders.
Babies can suffer from a range of genetic defects or mental disorders.
Publications International, Ltd.

We all want our babies to be healthy, to grow and develop to their full potential as children and adults. But sometimes a baby is not healthy.

Some children are born with genetic defects that affect one or more of the body's systems, such as muscular dystrophy (the progressive wasting away of muscles), certain mental disorders, and color blindness. Down syndrome is a genetic birth defect that often involves many of the body's systems, leading to physical problems and mental retardation.

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Other children are born with genetic body chemistry disorders, such as phenylketonuria (PKU), which affects metabolism; cystic fibrosis, which affects the mucus-producing glands in the body; and Tay-Sachs disease, which leads to progressive neurologic deterioration and death at an early age. Some genetic disorders, such as sickle cell anemia, hemophilia, and thalassemia, affect the ability of the blood cells to perform their natural functions.

Sometimes an event within the cells when the fetus was forming altered the way the baby developed in the womb. A child may have genetic defects that affect the size or shape of the body or of various organs, such as dwarfism, spina bifida (in which part of the spinal cord and its coverings are exposed through a gap in the backbone), hydrocephalus (enlargement of the head as a result of the abnormal accumulation of cerebrospinal fluid), clubfoot, cleft lip or palate, and some congenital heart defects.

In other cases, the baby's genes may be perfectly normal but something caused damage while the fetus was developing in the womb. Perhaps the mother contracted rubella (German measles), which affected the baby's hearing or vision. Some babies are born too soon, before their bodies are completely developed. Sometimes an event in the womb or at birth causes brain damage leading to mental retardation or cerebral palsy (which affects movement and posture). Cerebral palsy, however, does not always involve mental retardation.

Some children contract a serious illness, such as meningitis (an infection or inflammation of the membranes covering the brain and spinal cord), within their first few years of life that causes hearing loss or brain damage leading to disabilities. Many defects show up immediately or shortly after birth or following an illness, but some problems may not be obvious until the child is several months or even several years old.

Severe disabling conditions, when not treated, may result in stunted emotional and mental development as well as physical problems.

What to Do If You Suspect a Problem

If this is your first baby, you may not wish to seem overanxious about your baby's development. Yet you may have some concerns based on what you've read about normal development or what you've seen other babies of your child's age accomplishing.

You spend many hours with your child, while your doctor spends only a few minutes at each visit. If you express your concern about your child as a general worry, your doctor may be apt to simply reassure you that the range of normal development is quite broad and that different babies develop at different rates.

When parents suspect a problem, they should write down their concerns. Try to think of as many examples as possible that illustrate a potential problem. It may help to keep a diary for a few weeks, in which you record the day and time when your baby is doing (or not doing) the things you are most concerned about. Also record what your baby is eating during this time. This may help you and your doctor detect important patterns.

Today, many people use digital cameras and video recorders to capture a visual image of the abnormal behavior. Your doctor can review this list, diary, or visual record and begin thinking about specific causes for the behavior you observe. Your doctor may first recommend that you wait and see if any changes take place. If your doctor suspects a genetic or disease-related problem, he or she may recommend that you see a specialist at the nearest children's hospital.

If your baby's overall development seems to be delayed, your doctor may recommend that he undergo an examination by a developmental pediatrician who specializes in infant development. If your doctor suspects that your child may have a neurologic disorder (a problem with the functioning of the nervous system), he or she may refer you to a pediatric neurologist.

If your doctor suspects seizure disorders, he or she may order an electroencephalogram (EEG), which records the brain-wave pattern for analysis. If hearing loss is suspected, an audiologist (a specialist in the field of hearing) may perform a brain-stem response study.

An ophthalmologist (a doctor who specializes in the diagnosis and treatment of eye diseases) may examine your child's eyes for visual function and for abnormalities. A physical therapist may evaluate such features as muscle strength and control, flexibility, balance, and agility. A psychologist may assess your child's personality and intellectual functioning, while a speech pathologist may look at how your child communicates to identify factors responsible for communication disorders.

If you have a question before or during the course of any testing or special evaluations your child is undergoing, be sure to ask for clarification. If you do not understand something that a specialist tells you, ask the specialist for clarification. If you still don't understand the answer, write it down and discuss it with your child's doctor. Do not be afraid to ask doctors to explain, and never sign a consent form without feeling sure that you understand what is to be done to your child and why it is necessary.

It can be a terrifying time when your baby is being evaluated for a long-term condition. Your doctor should understand that you might be feeling frightened, angry, or guilty or have other negative feelings. Don't be afraid to tell your doctor that you are feeling this way, so that your doctor may be attentive to providing you with information in a way that you can understand and accept. You may find that seeing a therapist or counselor -- either alone or with your partner or family -- can help you during this difficult time.

If your doctor has diagnosed your child with a handicap it can be a harsh reality to accept. In the next section, we will offer you some tips to help you reconnect with your child and adjust to your feelings.

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.

How to Cope With a Handicapped Child

Children with disabilities grow up in a kinder society than in the past.
Children with disabilities grow up in a kinder society than in the past.
Publications International, Ltd.

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.

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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.

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