“My Brother
is Disabled”
When being the “well” sibling
hurts.
Eleanore Rothenberg, Ph.D., LCSW, CGP
PARENTGUIDE News April 2005
Parents of children who are disabled always
seem to be creative and successful in finding
ways to meet the disabled child’s special
needs. The normally developing children in
such families, whose needs are also very real
and urgent, may sometimes feel that their
needs are being overlooked, in part because
the sister or brother who is medically, mentally
and/or physically challenged requires so much
of the family’s time and energy.
Children who have siblings with special needs
often have to deal with a confusing mixture
of emotions— embarrassment, sadness
and anger mixed with love and compassion.
They may resent the way the sibling with special
needs gets the lion’s share of the family’s
financial and emotional resources and then
feel guilty about having these feelings. These
children can feel isolated and often don’t
know whom to talk to or what to say when given
the chance to say anything.
These “well” children may ask
for very little since they understand, from
an early age, that their parents already have
their hands full. Nonetheless, they have deep,
often confusing feelings toward family members
(parents as well as the disabled sibling).
Feelings of love and compassion may be mixed
with resentment and jealousy about getting
less attention.
A Time of His/Her Own
Siblings of children with disabilities generally
accept the fact that their sister or brother
needs a great deal of attention. Still, they
may long for a parent’s undivided attention
themselves, at least sometimes. One of the
ways to help solve this problem is for the
parent to set up a “playdate”
with this sibling.
This playdate should be scheduled for the
same day of the week (or every other week)
at the same time and in the same place for
every session. The space should be only for
the parent and this child. The phones should
be turned off to minimize disruptions. The
toys, games and art supplies that are used
should remain in the space and not be used
by the child, or anyone else, between playdates.
It is further recommended that these playdates
not be cancelled except in a case of great
urgency.
The amount of time should be the same whenever
parent and child get together and should be
agreed to in advance (45 minutes seems to
work best). The amount of time is less important
than the fact that it is this child’s
time to be alone with the parent. If it is
kept as a cherished time and is respected
by parent and child, it may provide an opportunity
for real quality time for both.
Another approach to helping siblings cope
with their feelings, and to assure them that
they are not alone, is to enroll them in a
sibling support group.
Support groups, which rely heavily on the
healing power of a shared group experience,
offer children in similar circumstances a
chance to talk about their feelings, hear
other perspectives and know they’re
not alone.
For example, in one game called “In
the Bottle,” each child writes a feeling
word on each of three separate pieces of paper,
then folds and stuffs the papers into the
empty, narrow-necked milk bottle. When everyone
has stuffed the bottle, including the group
leader, it gets passed around and each child
in the circle must remove a “bottled
up” feeling from the bottle. Then they
act out the feeling and others in the group
guess what it is. The three most frequent
feelings the children write about are anger,
sadness and guilt.
The children in the sibling support group
are angry because their lives are so different
from those of their friends and classmates.
They often don’t feel that their family
life is “normal” and are too embarrassed
about their disabled sibling to even think
about having playdates at home. They’re
sad that their sister or brother is suffering,
unable to do the things they can do. They
may be sad because they feel helpless and
unable to change things. They are often sad
that their parents are worried or even devastated
by their sibling’s disability.
These children sometimes feel guilty because
they aren’t disabled like their sibling.
Other feelings that the children write about
are: fatigue, because sleeping through the
night may not be typical; bravery, because
they often take care of the disabled siblings;
and pride, because they serve as surrogate
parent and are recognized and appreciated
for being so helpful and grown up.
By attending a sibling support group, these
children benefit from the healing power of
the group experience, learn that they are
not alone and find friends who “get
it.” They give themselves permission
to express themselves in words and in art,
to be creative and to have fun. Finally, they
become more tolerant, not only towards their
brother or sister who is different but also
towards diversity in the community at large.
Eleanore Rothenberg, Ph.D., LCSW, CGP,
is founder and executive director of The Sibling
Center for Sisters & Brothers of People
with Disabilities, a non-profit organization
based in Manhattan and serving the metropolitan
area. For more information, call (212)831-5586
or visit www.sibcenter.org.
The sibling support program offered by The
Sibling Center is designed to promote the
emotional health and well-being of typically
developing children in families where there
is a child with special needs. This is a substantial
population of children who may feel they are
being overlooked, whose own needs for support
and understanding are very real and urgent,
yet may be unmet. The sibling support group
offers the opportunity for children to express
their thoughts and feelings in a safe environment
through art and in words, with their peers,
under professional guidance. The Sibling Center
for Sisters & Brothers of People with
Disabilities is located at 525 E. 89th St.
