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Living with a Brother or Sister with Special Needs

A Book for Sibs
Second Edition, Revised and Expanded (1996)

livingwithbook

by Donald Meyer and Patricia Vadasy
Drawings by R. Scott Vance
University of Washington Press
16.95/paperback
ISBN 0-295975-47-4

Living with a Brother or Sister with Special Needs may be purchased from the Sibling Support Project Amazon Associate Astore

Description

Living with a Brother or Sister with Special Needs focuses on the intensity of emotions that brothers and sisters experience when they have a sibling with special needs, and the hard questions they ask. Written for young readers, the book discusses specific disabilities in easy to understand terms. It talks about the good and the not-so-good parts of having a sibling who has special needs, and offers suggestions for how to make life easier for everyone in the family.

This revised and updated edition includes new sections on attention deficit hyperactivity disorder, fetal alcohol syndrome, fragile X syndrome, traumatic brain injuries, ultrasound, speech therapy, recent legislation on disabilities, and an extensive bibliography.

Comments

"This book has been long awaited! [It] can be highly recommended to families, support groups, professionals, and libraries." School Social Work Journal

"Good writing for children is relatively ageless and it is a tribute to the authors that most grown-ups would find it tolerable, even pleasurable to read. The tone is marvelous; there is nothing patronizing about the style. This is a gem of a book." JASH, the Journal of the Association for Persons with Severe Handicaps


Table of Contents

Note to Brothers and Sisters
Note to Parents and Other Grown-ups Who Read This Book
Foreword
Acknowledgments

Chapter 1: What It's Like to Have a Brother or Sister with Special Needs

Friends
Unselfishness
Anger
Accepting Differences
Guilt
Jealousy
Overinvolvement
Understanding
Embarrassment
Pride
Loss
Maturity
Worry
Loneliness

Chapter 2: Mental Retardation

What causes mental retardation?
Mental retardation affects some people more than others
People needing intermittent support
People needing limited or extensive support
People needing pervasive support
Developmental disability

Chapter 3: Disabilities That Affect How People See, Hear, Speak, Learn, and Behave

Vision Problems
Hearing Problems
Speech and Language Problems
Learning Disabilities
Attention Deficit Hyperactivity Disorder
Behavior Problems
Positive reinforcement
Ignoring
Autism

Chapter 4: Disabilities that Children are Born With

Birth Defects
Ultrasound
Maternal serum alphafetaprotien
Amniocentesis
Birth defects caused by chromosome changes
Birth defects caused by things in the environment
Fetal alcohol syndrome
Common birth defects
Hydrocephalus
Spina bifida
Cleft lip and cleft palate
Cystic fibrosis
Down syndrome or trisomy 21
Prader-Willi syndrome
Fragile x syndrome

Chapter 5: Other Causes of Disabilities

Anoxia
Brain damage
PKU
Meningitis
Traumatic brain injury
Child abuse

Chapter 6: Neurological Problems: Cerebral Palsy and Epilepsy

Spastic, athetoid, and ataxic cerebral palsy
Epilepsy
Seizures

Chapter 7: Laws, Programs and Services for Persons with Disabilities and Their Families

The Americans with Disabilities Act
IDEA--The Individuals with Disabilities Education Act
Physical therapy
Occupational therapy
Speech and language therapy
Early intervention programs
Respite care

Chapter 8: The Future

When sibs with disabilities grow up
Family care
Adult family homes
Group homes
Supported living
Sheltered employment
Supported employment
Competitive employment
Caring for a grown-up sibling
Worries about your own future
Conclusion
Appendix 1: Books for Young Readers about Disabilities and Illnesses
Appendix 2: Organizations and Other Resources on Specific Disabilities and Illnesses

Index
Sibling Feedback Form


Selections

Jealousy

"Sometimes you probably feel like saying 'Hey, you have other kids in this family too!'"

I know this sounds crazy, Emma thought to herself, but sometimes I wish I had cerebral palsy! Lately Emma has been feeling jealous of her sister, Amy, who has cerebral palsy. It seems to Emma that Amy gets all the attention. Emma's soccer games never seem as important to her mother as meetings at Amy's school or at the Cerebral Palsy Center. If Emma brings home a paper with a B grade, her mother says, jealousy"Well, you'll have to try harder next time." But she makes a big fuss about anything Amy brings home, no matter how sloppy it is. When Amy was the state cerebral palsy poster child, Emma stayed with her aunt while Amy got to meet the governor at the TV station. It's just not fair, Emma thought. If you have a brother or sister with special needs, chances are that sometimes you feel neglected. You might feel ignored by you parents. It may seem that they don't notice you unless you do something wrong or get into trouble. They may spend so much of their time on your special sib that you feel left out, as though you're not very important. Sometimes you probably feel like saying,

"Hey, you have other kids in this family too!" You want to let your parents know your sib isn't the only person in the family. Like Emma, you might sometimes wish that you had a disability, just so you would get as much attention as your sib.

Parents usually have to spend more time with a child with special needs than with the other kids in the family. The special sib often needs medical care or help to do things that you can do for yourself. Some special sibs need lots and lots of attention. Others need extra help only in certain areas. But just because your brother or sister needs extra attention doesn't mean that you don't need some attention too. You still need to spend some time with your parents, talking about your problems and doing the things that your friends do with their parents. You need to spend an afternoon at the movies together, or go out for ice cream, or go to the swimming pool. When parents have a special child, they sometimes forget that all of their children need some of their time and attention.

If, like Emma, you feel that your parents are ignoring you, try telling them just how you feel. If it's hard for you to tell your parents how you feel, try practicing with a good friend. Some people like to practice in front of a mirror. Tell them you understand that your special sib needs a lot of their time. But remind them that there are times when you need attention too. Tell them that you would like to spend some special time together, and do things you both enjoy. When you're done, let them know how good it feels to know that they are there for you when you really need them.


Pride

"You're proud of your sib's special qualities even if other people only see his special needs."

"C'mon Tony! C'mon Tony!" shouted Charlie and Mike from the stands at the Special Olympics. On the field is their brother Tony, who has Down syndrome. Tony is short and round, but he was biting his lip and swinging his arms furiously as he raced toward the finish line.

"Yay! All right! Wa-hooie!" screamed Charlie and Mike as Tony crossed the finish line in second place. As soon as Tony stopped, he pushed up his glasses on his nose. He looked at his brothers in the stands, smiled, and flashed a "V for victory" sign with his fingers.

On their way down to the field to congratulate him, Mike thought about what a neat kid Tony is. Sure, he could be a royal pain sometimes, but look what he did today! He couldn't remember ever being so proud of his little brother.

People who don't know someone who has a disability often don't realize that people with special needs also have special qualities, just like anyone else. You often don't find out aboutpride these special qualities until you get to know a person. But, because you know your sister so well, you know her special qualities--maybe better than anyone else in the world. These qualities make you proud. You feel proud of how good your sib is at some things, like swimming, or running, or playing wheelchair basketball, or sayingthings that make you laugh. And you also feel proud because you know how hard it is for your sib to learn to do some of these things.

Other people may only see what your brother or sister can't do. They see, for example, that your sister isn't as smart as her classmates, that she can't see, or can't walk without crutches. And that's all they see. But if they took the time to get to know her, they would understand why you and your family often feel like bragging.

For example, John's brother Dave has a learning disability. Dave has a very hard time spelling, reading, and writing. He often stays inside and works on his homework when his friends are outside playing. Even though it took him longer than his classmates, Dave is learning to read, and he can now read some easy books all by himself. John knows how hard it was for Dave to learn to read. John feels very proud of Dave because he tries so hard.

Or there is Susan's sister Jennifer, who has mental retardation. At first, some of Susan's friends thought it was funny when Susan bragged about Jennifer. They knew that Jennifer was in a special class. They thought, what could be good about having a sister who has all those problems? Jennifer is a lot slower than other kids her age, and she can't do things like multiply, count money, or even play video games. She looks different, too. But now that they know Jennifer, they understand why Susan is so proud of her. Susan is proud of the way Jennifer has learned to take care of her room, fix a simple meal, and swim. Susan knows that these things are harder for Jennifer than for other girls her age. Knowing this makes her even prouder when Jennifer learns something new.

Gary has cerebral palsy. People often stare at him and feel sorry for him because he can't walk or talk. But his sister Sara knows that Gary can do some wonderful things, like operate the special computer that is attached to his wheelchair. Gary takes his computer to school and to the store. He can order a milkshake with it or do his homework on it. He can even play games on it. Sara knows that Gary has a great sense of humor and he often writes jokes on his computer. People who don't know Gary may feel sorry for him. But Sara has watched Gary learn to communicate, and she can think of many reasons to feel very proud of him.

Brothers and sisters are often proud of their siblings who have special needs. They know that what someone can do is more important than what they can't do.


Down-syndrome or trisomy (try'-so-mee) 21

Down syndrome is named after the doctor who first wrote about it in medical books, Dr. J. Langdon Down. It is the most common known cause of mental retardation that is identified at birth. Over 7,000 children are born each year with Down syndrome.

A "syndrome" is a group of signs that are commonly found together in a particular condition. There are over fifty signs that may lead a doctor to suspect that a baby has Down syndrome. Some of these signs are: floppy muscles, slanted eyes, a single crease across the baby's palm, a nose with a very flat bridge, and very flexible joints. Not all children with Down syndrome will have all of these signs. But they will all have the most important sign: 47 chromosomes.

If you want to understand what causes Down syndrome, you must learn a little about chromosomes. People usually have 46 chromosomes in every cell of their body, except for the male's sperm cells and the female's egg cells. Egg and sperm cells each have 23 chromosomes. Usually, at conception, the 23 chromosomes from the father's sperm cell join with the 23 chromosomes from the mother's egg cell. The fertilized egg, which now contains 46 chromosomes, will divide and grow and eventually become a baby.

normal


Sometimes, for reasons we do not understand, sperm or egg cells divide the wrong way. When they do, the egg or sperm cells end up with 24 chromosomes instead of 23. At conception, then, one parent's 23 chromosomes will combine with the other parent's 24 chromosomes. The fertilized egg will then have a total of 47 instead of 46 chromosomes. The fertilized egg with 47 chromosomes may divide and grow like any other fertilized egg with one big difference: it will have one extra chromosome.

To study chromosomes, scientists have numbered pairs from 1 to 23. Most people have two of each chromosome (two number 1 chromosomes, two number 2 chromosomes, and so on). A person with Down syndrome has three number 21 chromosomes. That's why Down syndrome is also called trisomy (for three) 21. The extra 21st chromosome is responsible for the characteristics seen inchildren with Down syndrome.

In most cases Down syndrome happens when the sperm or egg cells do not divide properly. In very rare cases a child with Down syndrome will inherit the extra chromosome from a parent who does not have Down syndrome but who is a carrier. This is the translocation type of Down syndrome and is responsible for about 4 percent of all cases of Down syndrome.
Down syndrome causes some mental retardation. Children with Down syndrome may also have heart and lung problems. They may have hearing and vision problems. Some may have to wea glasses. They may have little tubes inserted into their ears so that fluid does not collect inside their ears and prevent them from hearing. < very long. they ask us if that means their brother won't live to grow up and be an adult. in the past, many children with down syndrome did not live long because of their heart and breathing problems. today, a child with down syndrome can have open-heart surgery to repair a heart defect. children with down syndrome can take medicine to control infections such as pneumonia (new-mo'-nee-ya) that once were the cause of death.


Sibs often ask us about the special programs and classes their baby brother or sister with Down syndrome attends. In the past, people thought that children with Down syndrome would not be able to learn. Parents of children with Down syndrome were often told to put their babies in institutions--places where the children were raised away from their families. Special education programs for babies, called early intervention programs (see page 106), have helped children with Down syndrome. Because of these programs these babies have learned more than anyone would have thought possible thirty years ago.

Children with Down syndrome learn many of the things other children learn. It just takes them longer. Everyone in the child's family can share in helping the child with Down syndrome learn to walk, talk, and read. When they are older, persons with Down syndrome may learn to work and live in the community (see Chapter 8, pages 112-16). Adults with Down syndrome may live with other people with special needs or even by themselves if they have help when they need it.

Ordering Information

Living with a Brother or Sister with Special Needs may be purchased from the Sibling Support Project Amazon Associate Astore


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