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Parenting plus: raising children with special health needs.

PARENTING PLUS: Raising Children with Special Health Needs by Peggy Finston, M.D., E.P. Dutton, A Division of Penguin USA, 375 Hudson St., New York, N.Y 10014, (202) 366-2000. 320 pages, @ 1 990 $18.95.

The following excerpt from Chapter 2: Identify the Problem and Learn How to Live with It has been reprinted with permission from the publisher. TALK TO YOUR CHILD ABOUT HIS DIFFERENCES

While you don't want to brand your youngster in his own eyes or instill the expectation that he will be rejected by others, you do need to equip him for what he faces. Parental love can not possibly encapsulate him from either the reality of his body or the response of the rest of the world. Saying nothing leaves him defenseless in both areas.

Start talking to him early, using simple words. How early? Janet's two-and-a-half-year-old-son points to his zipper scar and explains, "My heart was fixed." Try to mention this difference matter-of-factly when the consequences of it come up. A doctor's appointment, an injection, a pill are opportunities to begin what should become an ongoing discussion. Your child does not have to grasp your words intellectually to understand that you are there to help him deal with this.

What you want to avoid is his asking you because he has already heard about his condition elsewhere. This experience can be shattering. After all, if children can't count on their parent to tell it like it is, what can they expect? And you don't want to communicate through silence that either you or he is too fragile to talk about the truth.

Also, use words he is likely to hear from others. Kay's son, Ted, is an albino and visually impaired. She uses the word albino and took her three children to a farm that had white rabbits to enhance their understanding.

Many parents would like to reach for euphemisms when the usual labels have frightening implications. Again, if you don't even mention the words cancer, cystic fibrosis, or epilepsy, your child may hear them first from someone else. After managing six years with a tracheotomy, Keough is entering "regular" first grade. Her mother, Susan Duffy, says, "We were on a local television show and one of the school aides came up to me the next day and said she didn't know that Keough was a Down's child. My daughter has an animated face and it's not immediately obvious. Now I'm worried that some kid will walk up to her and call her a "retard". I wonder about telling her that she is a Down's."

What to do? Inform your child about these labels without using them in daily life. For example, "You have a seizure disorder, but some people call this epilepsy." You can soften the impact by explaining how the severity of diseases varies, which is the truth. Some people with cystic fibrosis live much longer than others. Also, tell your child that how he cares for himself will improve his chances for better health. Even when a label is misleading, it's advisable to mention the term so that he doesn't hear it elsewhere first. For example, different cancers are really different diseases. Martha struggled against using the word cancer because Heather's grandfather had died from that the year before. Eventually, she told her daughter that leukemia was a cancer, but it was not the kind Grandpa had.

Familiar comparisons may enhance a younger child's understanding. Epilepsy can be like a thunder-and-lightning storm through the brain, a cardiac defect is a pump with an ouch, cancer like a garden with too many weeds. Adelle, whose son lacked a certain white cell, told him that his blood was missing one kind of soldier that fights the germs. Nurses, other parents, and educational pamphlets can be fruitful, like an orchard, if your mind is barren when it comes to these metaphors.

However, expect misunderstandings, even with the most informed and/or colorful explanations. Don't be fooled by the logic of older children, either. They can be reacting irrationally while being able to recite all the "right" facts. Therefore, you need to do more than speak to his intellectual understanding of his medical condition, although this is essential. You also need to reassure him about unrealistic fears that may be either lurking behind what he says or openly expressed.

One fear is that "I have caused it." Six-year-old Charlie explained his illness with: "When you do something bad and your Dad doesn't punish you, God will. That's why I have this kidney tumor." Tell your child that many things that happen have no cause, as we know it. The illness or disability is no one's fault.

You can also reinforce this no-fault understanding when this question comes up about other people. My son, after meeting Ted, who has albinism, asked me what was wrong with him. "Why didn't God give him enough color?" I told him that certain things happen for no good reason, just like our food allergies.

A second common worry is that the condition is contagious. Mary Jo's four-year-old son learned that when someone coughs on him he gets a cold, which can often progress to an asthmatic attack. He concluded that when he coughs on someone else, he can also give them asthma. His mother corrected his misunderstanding. She knew it would lead to guilt and isolation.

Another irrational fear is that "I am going to die" or "the worst will happen to me." Alice's nine-year-old daughter had already learned about diabetes from television when she was diagnosed as having the disease. Her immediate concern was that it was going to kill her or she would lose her legs. She said, "What's the good in taking insulin, anyway?"

Children can be quite sophisticated in their information and yet interpret it in an emotional, black-and-white fashion. Alice worked on modifying her daughter's initial misconceptions. This mother pointed out how people with diabetes do much better today because of improved care. "If you make certain sacrifices and are honest about what you eat, you should do well."


Some conditions are obvious: the hair loss from cancer treatment, the barrel chest of cystic fibrosis, the joint deformities from arthritis, among others. These children must deal with the consequences of this recognition: the staring, the questions, and the avoidance by peers. However, they are relieved of others expectations that they be normal.

But other diseases - epilepsy, food allergies, or mild hemophilia are essentially invisible. These children look normal, even though functionally they do things their peers don't do: avoid certain foods, take pills, or get occasional transfusions. These youngsters must choose whether to expose their difference. They also have the additional worry about whether their difference is already known. Pat Covelli looks back to when he was ten and the diagnosis of diabetes was made.

"On this particular morning the dread was intense. I was going to school; my classmates would know I was different.

"At school, I sat at the polished desk, my head down, my eyes on the childish grafitti in the wood. I could not look the other kids in the face, I could only shoot glances at the blackboard in front of the room. Was everyone staring, or was my shame a product of my imagination?

"Doctors often soothe the diabetic by saying that people have no way to knowing he has the disease. Comforting to an adult, perhaps, but to a child, surface appearances mean nothing. I believed that my classmates could see through-me."

In other words, an invisible difference does not grant a child immunity from feeling defective.


Reinforce the positive and let him blow off steam about the negative.

Children may vacillate between feeling special and feeling defective about their difference. An illness or disability brings a certain extra attention that, in moderation, is not going to hurt anyone and, in fact, may help. One mother was devastated when her son was found to be hearing impaired. "But he was thrilled to be like his dad and get a hearing aid." Eleven-year-old Jennifer was diagnosed as having rheumatoid arthritis. Her mother recalls, "All the kids lined up to try her crutches, and she loved being in the limelight. The teacher sent one boy to the office and when Jennifer looked out the window she saw that he was using them to get there. Todd's friends visited him in the hospital when he was first identified as having diabetes. The twelve-year-old was proud to demonstrate his bravery during blood tests and insulin shots. The boys then offered their forearms to test their mettle with the needle. Some children instinctively admire the courage it takes to cope with either the medical condition or the treatment. Use these opportunities to point out to your youngster how his illness or disability is not necessarily a turnoff to other people.

Of course, this does not take away from the times when he will feel bad about his difference. The mother of the hearing-impaired boy reported that her son purposely left his hearing aids at K-Mart and occasionally tries not to use them. Jennifer's mother accompanied her to school the first day because her daughter was anxious about what her classmates would say. Todd ripped off his first identification bracelet because it meant something was wrong with him.

These are the times when our children need us as listeners, not as advisers. Try to stifle well-meaning reassurances - such as, "It won't hurt your life," or "Nobody can see it anyway" - that might inadvertently close off conversations. Why would we want to do that? Because much of what our children say may be the hardcore truth. We are unable to help them about many things, and this is a painful truth to hear.


People react with a range of emotions, from fear to hostility or just discomfort. Your child is going to notice. Making sense of what she observes will help her deal with it next time. Renee can no longer breathe on her own power due to her degenerative muscle disease. Linda took her shopping with her suction and ventilator equipment. "Renee would say, `Mom, those kids are staring at me,' and I'd explain that they aren't used to seeing people with tubes. Now we have to allow two hours when we go out because she talks to everyone and you hear the kids say, `Hey, here's that girl again.' "

Copies of the book may be purchased through the EXCEPTIONAL PARENT Library, 1170 Commonwealth Ave., Boston, Mass. 02134, (617) 730-5800. See page 73 for ordering information.
COPYRIGHT 1990 EP Global Communications, Inc.
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Copyright 1990 Gale, Cengage Learning. All rights reserved.

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Title Annotation:excerpt
Author:Finston, Peggy
Publication:The Exceptional Parent
Article Type:Bibliography
Date:Jul 1, 1990
Previous Article:Consumer responsiveness: knowing it when you see it.
Next Article:Reach out and teach parent handbook/reachbook: meeting the training needs of parents of visually and multiple handicapped young children.

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