By Donald Meyer, director, The Sibling Support Project, The Arc of the United
States
In the United States, over 5.8 million children have disabilities. Most have
brothers and sisters. Throughout their lives, these brothers and sisters will
share many—if not most—of the same concerns that parents of children
with special needs experience, as well as issues that are uniquely theirs.
These concerns are well known to their parents and have been documented in
the research and clinical literature. Among the concerns mentioned by authors,
parents, and siblings themselves include:
the insights a sibling will have on the human condition as a result of growing
up with a brother or sister with special needs:
“
She taught me how to love without reservation; without expectation of returned
love. She taught me that everyone has strengths and weaknesses. Martha is no
exception. She taught me that human value is not measured with IQ tests.” (Westra,
1992, p.4)
the maturity many brothers or sisters develop as a result of successfully
coping with a sibling’s special needs:
“
I have a different outlook on life than many other people my age. I understand
that you can’t take anything for granted. And you have to be able to
look at the positives...With Jennifer, there are negatives, but there’s
so much more that is good.” (Andrea, age 19, in Binkard et al., 1987,
p. 19);
the pride brothers and sisters report in their sibling’s abilities:
“
Jennifer has probably achieved more than I have. She’s been through so
much. She couldn’t even talk when she started school; now she can, and
she can understand others. She’s really fulfilling her potential. I’m
not sure the rest of us are.” (Cassie, age 18, in Binkard et al., 1987,
p. 17)
the loyalty brothers and sisters display toward their siblings and families:
“
I’m used to being kind to my brother and sister, so I’m kind to
everybody else. But, if someone starts a fight, I will fight. I won’t
put up with anyone teasing Wade or Jolene.” (Morrow, 1992, p.4)
and the appreciation many brothers and sisters have for their good health and
own families.
“
People tend to think in simplistic terms, not in reality. My mother, for example,
is not a saint. In some ways she has still not come to terms with my sister’s
disability. Yet I see her as a tower of strength. I don’t know if I would
have that much strength.” (Julie, in Remsberg, 1989, p. 3)
“
Living with Melissa’s handicaps makes me so much more cognizant of my
own blessings. She provides a constant reminder of what life could have been
like for me if I had been my parents’ oldest daughter. This encourages
me to take advantage of my mental capacities and to take care of my healthy
body.” (Watson, 1991, p. 108)
Acknowledging siblings’ many unique opportunities is not to view their
experience from Pollyanna’s perspective—many of these benefits
are hard-earned. In short, siblings’ experiences closely parallel their
parents’ experiences.
Within the family, siblings will likely spend more time with the child with
special needs than any other person, with the exception of the child’s
mother. And, because the sibling relationship is generally the longest-lasting
relationship in the family, brothers and sisters are likely to experience these
concerns for a long period of time. Sibling issues are lifespan issues: preschool
age siblings will grapple with issues not faced by their peers in the community;
so will siblings who are senior citizens. Yet, many brothers and sisters grow
up without resources—such as access to support programs and sources of
information—that would help them in their roles, and that many parents
may take for granted.
Provide brothers and sisters with age-appropriate information. Most brothers
and sisters have a life-long, and ever-changing need for information. Parents
and service providers have an obligation to proactively provide siblings with
helpful information. Agencies representing specific disabilities and illnesses
should be challenged to prepare materials specifically for young readers.
Provide siblings with opportunities to meet other siblings of children
with special needs. For most parents, the thought of “going it alone,” without
the benefit of knowing another parent in a similar situation is unthinkable.
Yet, this happens routinely to brothers and sisters. Sibshops and similar efforts
offer siblings the same common-sense support that parents value. They let brothers
and sisters know that they are not alone with their unique joys and concerns.
Encourage good communication with typically developing children. While good
communication between parent and child is important, it is especially important
in families where there is a child with special needs. An evening course in
active listening can help improve communication among all family members. Also,
books, such as How to Talk So Kids Will Listen and Listen So Kids Will Talk
and Siblings Without Rivalry (both by Adele Faber and Elaine Mazlich) provide
helpful tips on communicating with children.
Encourage parents to set aside special time to spend with the typically
developing children. Children need to know from their parents’ deeds and words that
their parents care about them as individuals. When parents carve time out of
a busy schedule to grab a bite at a local burger joint or window shop at the
mall with the typically developing child, it conveys a message that parents “are
there” for them as well.
Parents and service providers need to learn more about siblings’ experiences. Sibling panels, books, newsletters and videos are all excellent means of learning
more about sibling issues. A bibliography is available from the Sibling Support
Project.
Encourage parents to reassure their typically developing children by planning
for the future of the child with special needs. Early in life, brothers and
sisters worry about what obligations they will have toward their sibling in
the days to come. Parents should be encouraged to plan for the future and share
these plans with their children. When brothers and sisters are “brought
into the loop” and given the message that they have their parents’ blessing
to pursue their dreams, their future involvement with their sibling will be
a choice instead of an obligation.
Are siblings included in the definition of “family?”
Many educational and health care agencies have begun to embrace an expansive
definition of families (e.g., IFSPs, family-centered care). However, providers
may still need to be reminded that there is more to a family than the child
with special needs and his or her parents. Organizations that use the word “parent” when “family” or “family
member” is more appropriate send a message to brothers and sisters, grandparents
and other family members that the program is not for them. With siblings and
grandparents assuming increasingly active roles in the lives of people with
disabilities, we cannot afford to exclude anyone.
Does the agency reach out to brothers and sisters?
Parents and agency personnel should consider inviting (but not requiring) brothers
and sisters to attend informational, IEP, IFSP, transition planning meetings,
and clinic visits. Siblings frequently have legitimate questions that can be
answered by service providers. Brothers and sisters also have informed opinions
and perspectives and can make positive contributions to the child’s team.
Does the agency educate staff about issues facing brothers and sisters?
A sibling panel is a valuable way for staff to learn more about life as a brother
or sister of a person with a disability or chronic illness. Guidelines for
conducting a sibling panel are available from the Sibling Support Project.
Other methods to help educate agency staff include videotapes, books, and newsletters.
A bibliography is available from the Sibling Support Project.
Does the agency have a program specifically for brothers and sisters?
Like their parents, brothers and sisters benefit from talking with others who “get
it.” Sibshops and other programs for preschool, school-age, teen, and
adult siblings are growing in number. Children’s Sibling Support Project,
which maintains a database of over 200 Sibshops and other sibling programs,
provides technical assistance on creating local programs for siblings.
Does the agency have brothers and sisters on an advisory board and policies
reflecting the importance of including siblings?
Reserving board seats for siblings will give the board a unique, important
perspective and reflect the agency’s concern for the well-being of brothers
and sisters. Developing policy based on the important roles played by brothers
and sisters will help assure that their concerns and contributions are a part
of the agency’s commitment to families.
This article was adapted from Sibshops: Workshops For Siblings Of Children
With Special Needs by Donald Meyer and Patricia Vadasy, 1994, Paul H. Brookes
Publishing Company.
Reprinted with permission from The Sibling Support Project website at http://www.thearc.org/siblingsupport.
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