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Here's what the National
Down Syndrome Society has to say about Parent Support Groups:
What is a Down Syndrome Parent Support Group?
A Down syndrome parent
support group is usually comprised of parents whose children
have Down syndrome. Parent support groups provide information,
resources and emotional support to new parents looking for
answers and solutions to rearing a child with a disability and,
in particular, Down syndrome. The group may also include
relatives, friends, siblings, foster parents, professionals and
interested members of the community.
What is the Purpose of a
Down Syndrome Parent Support Group?
A parent support group can be
organized to do whatever the members agree their mission or
purpose will be. Some groups are informally organized and hold
occasional meetings over coffee in a parent's living room. They
might discuss and compare the developmental changes in their
children, or help one another locate a good pediatrician. They
might share information on medical or educational services,
programs and other resources available within the community, state
or nation.
Another group may want to invite
guest speakers who are experts on topics related to Down syndrome.
Parent support groups that have a membership program often develop
a newsletter to keep their members informed and up-to-date on
relevant issues. Some groups evolve into non-profit organizations
and operate programs and services for the wider community.
What are the Benefits
of a Down Syndrome Parent Support Groups?
Ideally, a Down syndrome parent
support group benefits each and every member. The primary benefit
of parent support groups is that they serve as a forum for
discussing common fears and concerns. There is a therapeutic value
in knowing that other families experience similar situations, and
participation in group meetings helps to alleviate feelings of
isolation and helplessness. By sharing their concerns and problems
with one another, parents are able to garner valuable insights and
advice. Lessons learned, especially from more experienced parents,
can help to build successful coping skills that will make life
easier for parent and child.
Another key benefit of parent
support groups is coalition-building. When parents and other
members of a support group are united, their combined voice is
more often heard by school administrators, legislators and
community leaders. This goes a long way in providing for the needs
and rights of children with Down syndrome. Parent support groups
can be instrumental in educating teachers, medical professionals
and the community at large about the facts and issues concerning
Down syndrome.
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