Siblings of Children with Special Needs
ARCH Factsheet Number 23, May, 1993
Siblings of Children with Special Health and Developmental Needs
Programs, Services and Considerations
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Is having a sibling with a disability different than
having a sibling who does not have a disability
Yes and no. The relationship between siblings can be a very important
part of any person's life. Siblings often share the same family experiences
and form a special relationship which can last throughout their lives.
Children who grow up together in the same family can form a unique
bond, regardless of a brother or sister having a disability. In fact, the
relationship between siblings and their brother or sister with a disability
can be identical to the relationship between any brother or sister. They
may be close and remain so into adulthood, or they may never develop
a close relationship or grow apart as they get older. Family situations
and circumstances, such as divorce or even cultural differences, can
also affect the way a sibling relationship develops.
It's important to remember that a lot of factors affect how siblings relate
to each other, and not just the fact that one of them has a disability.
However, sometimes having a brother or sister with a disability in the
family creates challenges that other families may not experience. Some
of these challenges can directly affect the siblings.
What are some of the concerns of siblings
of people with disabilities?
In any family, good or unfavorable feelings may develop between siblings
or because of siblings. This is true in both families with and without a
family member with a disability. But many siblings who have a brother or
sister with a disability have reported concerns surrounding having a brother
or sister with a disability. Valdivieso, Ripley and Ambler (1988) discuss
these concerns which include:
Guilt about not having a disability, while the brother or sister
does have one. Some siblings may even feel they are to blame
for their brother's or sister's disability.
Embarrassment of the sibling's behavior or appearance. The
sibling who does not have a disability may avoid contact with
the brother or sister, not invite friends to the home, etc.
Fear that they might develop the disability. Children (and
sometimes even adults) think that disabilities such as mental
retardation are contagious.
Anger or jealousy over the amount of attention the brother or
sister with a disability receives, especially if the child's disability
requires additional care.
Isolation or feeling like no one else has the same feelings or
experiences about having a sibling with a disability.
Pressure to achieve in order to "make up for" a brother or sister's
inabilities. The sibling who does not have a disability may feel that
excelling in school, sports or other ways will compensate for the
fact that a brother or sister with a disability is not able to do as well.
Caregiving, especially if it conflicts with plans with friends or the
responsibility becomes overly burdensome.
Information needed about a brother or sister's disability. Siblings
often are not given thorough information about why a sibling has
a disability, how it affects him or her and what the family can do
to help this family member
Many of these feelings affect children as they are growing up, but siblings
often continue to have concerns even as adults. For example, siblings who
do not have a disability may be concerned about the future of their sibling
with a disability after the parents die, especially if this brother or sister
still lives at home.
Are there any benefits to being the brother or sister
of a person with a disability?
Yes. Research on siblings indicates that there are positive aspects in being
the sibling of a brother or sister with a disability. Researchers have found
that children in families where a sibling has a disability can become more
mature, responsible, self-confident, independent and patient. These siblings
can also become more altruistic (charitable), more sensitive to humanitarian
efforts and have a greater sense of closeness to family
(Lobato, 1990; Powell, 1993).
Growing up with a sibling who has a disability may instill a greater level of
understanding and development in the siblings who are not disabled. They
may develop greater leadership skills, especially in areas where understanding
and sensitivity to human awareness issues are important. Many leaders in
The Arc and other contributors to the field of mental retardation, as well
as other notable people, grew up in families with a brother or sister with
a disability.
What are some positive actions parents can take with
their children when there is a sibling with a disability??
Itzkowitz (1991) discusses some positive actions parents can take with their
children, including:
- Treat the child who does not have a disability as a child, not just as
another adult caretaker. Do not demand or expect a child to take on
responsibilities for which he or she is unprepared.
- Remember that children have feelings too. Take time to ask them how
they feel about having a sibling with a disability. Encourage them to
express their feelings openly.
- Provide siblings with choices and include them in decision-making. Discuss
family matters with your children, especially if it affects them personally.
Ask for and value their opinions.
- Give them information about their brother or sister's disability. Answer their
questions and respond to their concerns in a simple but precise manner.
How does family structure affect siblings?
Some studies have looked at gender and birth order to see if either one
has an affect. In most situations, these factors may make only a slight
difference, except in the case of increased caregiving responsibility.
Research has shown that older daughters who do not have a disability
are typically expected to provide more caregiving to a brother or sister
with a disability. (Lobato, 1990).
What is being done to address concerns that siblings
may have about having a brother or sister with a disability?
Many chapters of The Arc and other organizations are focusing services
and sibling support groups aimed at meeting the needs and concerns of
young children, teen-agers and adult siblings of people with disabilities.
Sibling groups provide a forum where siblings can discuss their experiences,
share ideas and give each other support. Other sibling services include
seminars and meetings that address topics of interest to siblings such as
futures planning (guardianship, alternative living arrangements, etc).
Programs which provide family supports, such as respite care, are also
including the siblings in the planning process or by providing services in
integrated settings where all siblings can participate.
For further information on siblings and family supports, contact:
The Arc's Family Support Project
P.O. Box 1047
Arlington, TX 76004.
Toll-free voice 1- 800-433-5255
Toll-free TTY 1-800-855-115
Other Resources For You, Your Parents:
1. The Sibling Support Project http://www.thearc.org/siblingsupport/
2. Both of these links have excerpt chapters from the books and
information on ordering the book.
"Although the number of books about disabled children has grown steadily,
not many nonfiction books explore the feelings of a disabled child's brother
or sister. These unpretentious, honest snippets, contributed by 45 children
ranging in age from 4 ("My Mommy and Daddy told me that Nicole was born
very early and her brain got hurt") to 18, seek to fill that gap. In talking
about their sibs and their feelings, the writers admit to embarrassment
("I'm sure glad he doesn't go to my schoolif they find out that he's my
brother, they'd laugh"), anger, and jealousy. But at the same time, they
show how protective and loving and surprisingly wise they are when it comes
to getting along in a family that is different. Black-and-white sketches are
scattered through the text, and a glossary of medical conditions and a helpful
list of support sources are appended."
Living with a Brother or Sister with Special Needs:
A Book for Sibs
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.
