To learn how others handle situations commonly experienced by siblings of children with special needs.
Brothers and sisters of children with special health and developmental needs routinely face problems that are not experienced
by other children. Defending a brother or sister from name-calling, responding to questions from friends and strangers, and
coping with a lack of attention or exceedingly high expectations from parents are only a few of the problems siblings may
experience. Special events for siblings can offer a sibling a broad array of solutions from which to choose.
To learn more about
the implications of their brothers' and sisters' special needs.
Brothers and sisters need information to answer their own questions as well as the
questions of friends, classmates and strangers. Siblings want to know how the disability or illness may affect their brother
or sister's life, schooling and future.
To give parents and service providers opportunities to learn
more about the common concerns of the siblings.
Because parents and service providers often are unaware of the range of sibling issues,
activities can be conducted to try to help them better understand "life as a sib." For example, a panel of young adult and
adult siblings might relate what they appreciated in their parents' treatment of the children in their families and also what
they wish their parents had done differently.
A National Model Format
One model that has been used successfully throughout the U.S. offers brothers and
sisters of children with special health and developmental needs peer support and education through workshops as brief as two
hours and as long as a weekend. Typical workshops in this model are approximately four hours long, usually from 10 A.M. until
2 P.M. on Saturdays. Generally they are held monthly or bimonthly. During these workshops, information and discussion activities
are mixed with lively recreational activities. These might include "New Games" designed to be unique, slightly off-beat, and
appealing to a wide range of abilities; cooking; and special guests, who may teach participants mime or juggling. A workshop
schedule might look something like this:
Trickle-in activity: Group Juggling
Warm up activity: Human Bingo
Discussion #1: Strengths and Weaknesses
Game: Stand Up!
Game: Sightless Sculpture
Lunch: Supernachos
Game: Push-pin Soccer
Discussion #2: Dear Aunt Blabby
Game: Triangle Tag
Guest : Physical Therapist
Closing activity: Sound Off
Sibling support programs in this model were designed originally for children eight
to thirteen years old, but they can be adapted easily for younger or older children. Originally begun for siblings of children
with developmental disabilities, these workshops have expanded to include brothers and sisters of children with other special
needs, such as cancer, hearing impairments, epilepsy, emotional disturbances and HIV+ status, and for children who have lost
a family member.
Here are a few considerations to facilitate the inclusion of siblings in planning
and implementing family support services.
Including Brothers and Sisters: a Checklist for Agencies
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
organization is not for them. With siblings and primary-caregiver grandparents assuming increasingly active roles in the lives
of people with disabilities and health impairments, 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, and transition planning meetings and clinic visits. Siblings frequently have
legitimate questions that can be answered by service providers. Brothers and sister also have informed opinions and perspectives
and can make significant contributions to the child's team.
Does the agency educate staff about issues facing young and
adult brothers and sisters?
A sibling panel is a valuable way for staff members to learn more about life as a
brother or sister of a person with a disability or chronic illness. Guidelines for panel discussions can be prepared in advance
to help facilitate a meaningful discussion. Other methods to help educate agency staff include videotapes, books, and newsletters.
Does the agency have a program specifically for brothers and
sisters?
Programs for siblings--preschoolers, school-age children, teens, and adults--are
growing in number across the United States. Determine the needs of families served in your local community and develop sibling
support programs to meet identified needs.
Does the agency have brothers and sisters on the advisory board
and policies reflecting the importance of including siblings?
Reserving board seats for siblings will give the board a unique and important perspective
and indicate the agency's concern for siblings. 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.
Summary
Acknowledging the contributions of the siblings of children with disabilities or
chronic illnesses is an important step toward recognizing the valuable role they play in families. In addition to recognition,
siblings need information, support, and the opportunity to be children and to form relationships with other
children who have similar experiences. Many crisis nurseries and respite care programs serve all family members and may benefit
from understanding sibling issues.
