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Donald Meyer, Director,
The Sibling Support Project of The Arc of the US, Seattle, Washington
In the United States, over five million children have disabilities or
special health concerns. 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:
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a life-long and ever-changing need for information about the disability or
illness (Lobato, 1990; Schorr-Ribera, 1992; Powell & Gallagher, 1993)
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feelings of isolation when siblings are excluded from information available
to other family members (Bendor, 1990), ignored by service providers
(Doherty, 1992), or denied access to peers who share their often ambivalent
feelings about their siblings (Meyer & Vadasy, 1994);
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feelings of guilt about having caused the illness or disability, or being
spared having the condition (Koch-Hatter, 1986),
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feelings of resentment when the child with special needs becomes the focus
of the family’s attention or when the child with special needs is indulged,
overprotected, or permitted to engage in behaviors unacceptable by other
family members (Podeanu-Czehotsky, 1975; Bendor, 1990);
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a perceived pressure to achieve in academics, sports, or behavior (Coleman,
1990);
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increased caregiving demands, especially for older sisters (Seligman, 1979);
and
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concerns about their role in their sibling’s future (Fish & Fitzgerald,
1980; Powell & Gallagher, 1993).
Increasingly, opportunities experienced by these brothers and sisters are
also being acknowledged (Meyer & Vadasy, 1994; Powell & Gallagher, 1993;
Turnbull & Turnbull, 1993). A short list of opportunities observed by
parents and brothers and sisters could include:
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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)
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the maturity many brothers and 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);
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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)
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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)
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and the appreciation many brothers and sisters have for their good health
and own families. “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,
consequently, 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 brother 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.
Below are suggestions for parents and service providers to minimize
siblings’ concerns and maximize their opportunities:
1. 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.
2. 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 they are not alone with
their unique joys and concerns.
3. 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.
4. 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.
5. Encourage parents and service providers 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.
6. 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.
Adapted from Sibshops: Workshops for brothers and sisters of children
with special needs, 1994, by Donald J. Meyer and Patricai F.Vadasy (Balitmore:
Paul H. Brookes).
Reprinted with permission from the Arc of the United States.
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There is an
energy in us which makes things happen when the paths of other persons touch
ours.
from the Monks of Weston Priory
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