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In the United States, there are over six million people who have special
health, developmental, and mental health concerns. Most of these people have
typically-developing brothers and sisters. Brothers and sisters are too
important to ignore, if for only these reasons:
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These brothers and sisters will be in the lives of family members with
special needs longer than anyone. Brothers and sisters will be there after
parents are gone and special education services are a distant memory. If
they are provided with support and information, they can help their sibs
live dignified lives from childhood to their senior years.
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Throughout their lives, brothers and sisters share many of the concerns that
parents of children with special needs experience, including isolation, a
need for information, guilt, concerns about the future, and caregiving
demands. Brothers and sisters also face issues that are uniquely theirs
including resentment, peer issues, embarrassment, and pressure to achieve.
Despite the important and life-long roles they will play in the lives of
their siblings who have special needs, even the most family-friendly
agencies often overlook brothers and sisters. Brothers and sisters, often
left in the literal and figurative waiting rooms of service delivery
systems, deserve better. True “family-centered” care and services will
arrive when siblings are actively included in agencies’ functional
definition of “family.”
The Sibling Support Project facilitated a discussion on SibNet, its listserv
for adult siblings of people with disabilities, regarding the considerations
that siblings want from parents, other family members, and service
providers. Below is a discussion of themes discussed by SibNet members and
recommendations from the Sibling Support Project:
1. The Right to One’s Own Life. Throughout their lives, brothers and
sisters may play many different roles in the lives of their siblings who
have special needs. Regardless of the contributions they may make, the basic
right of siblings to their own lives must always be remembered. Parents and
service providers should not make assumptions about responsibilities
typically-developing siblings may assume without a frank and open
discussion. “Nothing about us without us” – a phrase popular with
self-advocates who have disabilities – applies to siblings as well.
Self-determination, after all, is for everyone – including brothers and
sisters.
2. Acknowledging Siblings’ Concerns. Like parents, brothers and
sisters will experience a wide array of often ambivalent emotions regarding
the impact of their siblings’ special needs. These feelings should be both
expected and acknowledged by parents and other family members and service
providers. Because most siblings will have the longest-lasting relationship
with the family member who has a disability, these concerns will change over
time. Parents and providers would be wise to learn more about siblings’
life-long and ever-changing concerns.
3. Expectations for Typically-Developing Siblings. Families need to
set high expectations for all their children. However, some
typically-developing brothers and sisters react to their siblings’
disability by setting unrealistically high expectations for themselves – and
some feel they must somehow compensate for their siblings’ special needs.
Parents can help their typically-developing children by conveying clear
expectations and unconditional support.
4. Expect Typical Behavior From Typically-Developing Siblings.
Although difficult for parents to watch, teasing, name-calling, arguing and
other forms of conflict are common among most brothers and sisters – even
when one has special needs. While parents may be appalled at siblings’
harshness toward one another, much of this conflict can be a beneficial part
of normal social development. A child with Down syndrome who grows up with
siblings with whom he sometimes fights will likely be better prepared to
face life in the community as an adult than a child with Down syndrome who
grows up as an only child. Regardless of how adaptive or developmentally
appropriate it might be, typical sibling conflict is more likely to result
in feelings of guilt when one sibling has special health or developmental
needs. When conflict arises, the message sent to many brothers and sisters
is, “Leave your sibling alone. You are bigger, you are stronger, you should
know better. It is your job to compromise.” Typically-developing siblings
deserve a life where they, like other children, sometimes misbehave, get
angry, and fight with their siblings.
5. Expectation for the Family Member with Special Needs. When
families have high expectations for their children who have special needs,
everyone will benefit. As adults, typically-developing brothers and sisters
will likely play important roles in the lives of their siblings who have
disabilities. Parent can help sibling now by helping their children who have
special needs acquire skills that will allow them to be as independent as
possible as adults. To the extent possible, parents should have the same
expectations for the child with special needs regarding chores and personal
responsibility as they do for their typically-developing children. Not only
will similar expectations foster independence, it will also minimize the
resentment expressed by siblings when there are two sets of rules – one for
them, and another for their sibs who have special needs.
6. The Right to a Safe Environment. Some siblings live with brothers
and sisters who have challenging behaviors. Other siblings assume
responsibilities for themselves and their siblings that go beyond their age
level and place all parties in vulnerable situations. Siblings deserve to
have their own personal safety given as much importance as the family member
who has special needs.
7. Opportunities to Meet Peers. For most parents, the thought of
“going it alone,” raising a child with special needs, without the benefit of
knowing another parent in a similar situation would be unthinkable. Yet,
this routinely happens to brothers and sisters. Sibshops, listservs such as
SibNet and SibKids, and similar efforts offer siblings the common-sense
support and validation that parents get from Parent-to-Parent programs and
similar programs. Brothers and sisters – like parents – like to know that
they are not alone with their unique joys and concerns.
8. Opportunities to Obtain Information. Throughout their lives,
brothers and sisters have an ever-changing need for information about their
sibling’s disability, and its treatment and implications. Parents and
service providers have an obligation to proactively provide siblings with
helpful information. Any agency that represents a specific disability or
illness and prepares materials for parents and other adults should prepare
materials for siblings and young readers as well.
9. Sibs’ Concerns about the Future. Early in life, many brothers and
sisters worry about what obligations they will have toward their sibling in
the days to come. Ways parents can reassure their typically-developing
children are to make plans for the future of their children with special
needs, involve and listen to their typically-developing children as they
make these plans, consider backup plans, and know that siblings’ attitude
toward the extent of their involvement as adults may change over time. When
brothers and sisters are “brought into the loop” and given the message early
that they have their parents’ blessing to pursue their dreams, their future
involvement with their sibling will be a choice instead of an obligation.
For their own good and for the good of their siblings who have disabilities,
brothers and sisters should be afforded the right to their own lives. This
includes having a say in whether and how they will be involved in the lives
of their siblings who have disabilities as adults, and the level, type, and
duration of involvement.
10. Including Both Sons and Daughters. Just as daughters are usually
the family members who care for aging parents, adult sisters are usually the
family members who look after the family member with special needs when
parents no longer can. Serious exploration of sharing responsibilities among
siblings – including brothers – should be considered.
11. Communication. While good communication between parents and
children is always important, it is especially important in families where
there is a child who has specials needs. An evening course in active
listening can help improve communication among all family members, and
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 communication with children.
12. One-on-One time with Parents. 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 their typically-developing
children, it conveys a message that parent “are there” for them as well and
provides an excellent opportunity to talk about a wide range of topics.
13. Celebrate Every Child’s Achievements and Milestones. Over the
years, we’ve met siblings whose parents did not attend their high school
graduation – even when their children were valedictorians – because the
parents were unable to leave their child with special needs. We’ve also met
siblings whose wedding plans were dictated by the needs of their sibling who
had a disability. One child’s special needs should not overshadow another’s
achievements and milestones. Families who seek respite resources, strive for
flexibility, and seek creative solutions can help assure that the
accomplishments of all family members are celebrated.
14. Parents’ Perspective is More Important than the Actual Disability.
Parents would be wise to remember that the parents’ interpretation of their
child’s disability will be a greater influence on the adaptation of their
typically developing sibling than the actual disability itself. When parents
seek support, information, and respite for themselves, they model resilience
and healthy attitudes and behaviors for their typically-developing children.
15. Include Siblings in the Definition of “Family.” Many educational,
health care, and social service agencies profess a desire to offer
family-centered services but continue to overlook the family members who
will have the longest-lasting relationship with the person who has the
special needs – the sisters and brothers. When brothers and sisters receive
the considerations and services they deserve, agencies can claim to offer
“family-centered” – instead of “parent-centered” – services.
16. Actively Reach Out to Brothers and Sisters. Parents and agency
personnel should consider inviting (but not requiring) brothers and sisters
to attend informational, IEP, IFSP, and 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.
17. Learn More About Life as a Sibling. Anyone interested in families
ought to be interested in siblings and their concerns. Parents and providers
can learn more about “life as a sib” by facilitating a Sibshop, hosting a
sibling panel, or reading books by and about brothers and sisters.
Guidelines for conducting a sibling panel are available from the Sibling
Support Project and in the Sibshop curriculum. Visit the Sibling Support
Project’s website for a bibliography of sibling-related books.
18. Create Local Programs Specifically for Brothers and Sisters. If
your community has a Parent-to-Parent Program or similar parent support
effort, a fair question to ask is: why isn’t there a similar effort for the
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. The Sibling
Support Project, which maintains a database of over 200 Sibshops and other
sibling programs, provides training and technical assistance on how to
create local programs for siblings.
19. Include Brothers and Sisters on Advisory Boards and in Policies
Regarding Families. 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 policies 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.
20. Fund Services for Brothers and Sisters. No classmate in an
inclusive classroom will have a greater impact on the social development of
a child with a disability than brothers and sisters will. They will be their
siblings’ life-long “typically developing role models.” As noted earlier,
brothers and sisters will likely be in the lies of their siblings longer
than anyone – longer than their parents and certainly longer than any
service provider. For most brothers and sisters, their future and the future
of their siblings with special needs are inexorably entwined. Despite this,
there is a little funding to support projects that will help brothers and
sisters get the information, skills and support they will need throughout
their lives. Governmental agencies would be wise to invest in the family
members who will take a personal interest in the well-being of people with
disabilities and advocate for them when their parents no longer can. As one
sister wrote: “We will become caregivers for our siblings when our parents
no longer can. Anyone interested in the welfare of people with disabilities
ought to be interested in us.”
Reprinted with permission from The Sibling Support Project of 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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