Notes from Diane Cohen, MSW
Presentation to Yesodot, 2002
1. Parents should share information and feelings with the
sibling:
Discuss the disability with the sibling: Kids have 'radar'
and even if a parent doesn't discuss the disability in front
of them they 'know' about it.
Give siblings clear explanations of the disability, because
if children don't have this kind of information they will
invent something on their own. Give siblings a label for
the disability where possible.
Where possible, bring them to doctor's appointments, therapy
appointments, to see the disabled child's school, etc. It's
ok for a parent to tell a sibling "We don't know" in answer
to a question. Parents' message to siblings should be: "We're
in this together as a family."
Tell the sibling any time their routine will be interrupted
or changed by something having to do with the disabled child.
Share feelings: The sibling needs to share feelings with
the parent and vice versa. This may be hard for parents
to do because the discussion may stir up uncomfortable feelings
for the parent or may feel disloyal to the disabled child.
The more a parent is aware of their own feelings the more
they can help the sibling deal with his or her feelings.
2. Feelings siblings may have:
Anger--that sister
or brother is not a "normal buddy", that outings and other
family events need to be modified for them, anger at G-d,
anger at doctors or others
Guilt--about being angry,
about being the cause of the disability (even though there
is no basis in fact for this), guilt they don't have a disability.
Jealously--that attention is being taken away from them,
that there are different parental expectations of the disabled
child and the sibling (Diane recommends that disabled children
be given a household chore to perform if possible to equalize
things even a little bit), that the disabled child gets
more teaching time, that parents make a big deal about it
when the disabled child does something seemingly simple.
Siblings need special time alone with parents; parents need
to recognize siblings' achievements and talents.
Wanting to be perfect--Siblings may want to be "perfect"
to make up for the disabled child's "imperfections". Parents
should let siblings know that it is ok to just be themselves.
Embarrassment--Siblings may be embarrassed in public because
people stare or comment, because of teasing (which often
comes from lack of understanding or discomfort with the
disability), or when friends come to visit. Teasing and
strategies to deal with it should be discussed as a family.
Worry, sadness--Siblings may want to try to make everything
ok and may worry that they can't. Older siblings may worry
about having to take care of the disabled child when parents
can't, they may worry that they will have a child with a
disability, they may worry that someone won't want to date
them because of the disabled child. The bottom line for
parents about siblings is communication.
3. Positives:
Siblings develop a maturity and responsibility which others
don't have. They develop an understanding of individual
differences and problem solving skills that others don't
have.
