Parent to Parent
Support
Sandra and Bruce's
Story
Sandra and Bruce had been
married five years when their son Peter was born. He was a simply
beautiful baby and changed their lives forever.
It took awhile for Sandra and
Bruce to realize that Peter wasn't developing at the same rate as
other children. He talked and played, but he didn't walk until he
was almost two years old. He fell a lot, even when he was four and
then five. When Peter was six, Sandra and Bruce took him to a
specialist to see what was causing the problem. That was when they
learned that Peter has muscular dystrophy.
The news came as a tremendous
shock. They started reading everything they could get their hands on
about muscular dystrophy. The information helped them address
Peter's needs, but they felt terribly alone and unsure of
themselves. They didn't know if they were really doing the right
things for Peter. There wasn't enough time in any one doctor's
appointment to get all their questions answered'or even asked!
A nurse told them about a
program called Parent to Parent. She said that Parent to Parent
could put them in touch with other parents like themselves, people
who had a child with muscular dystrophy. Sandra and Bruce called
Parent to Parent that week. Two days later they were put in touch
with a nearby mom and dad. This couple, Joan and Richard, had a
teenager named Sam with muscular dystrophy. And the
conversations'and an unexpected friendship'began!
What's Parent to Parent?
Parent to Parent is a program
that provides information and one-to-one emotional support to
parents of children who have special needs. The program operates
very simply. Trained and experienced parents are carefully matched
in one-to-one relationships with parents who are new to the program.
The matches are based upon similarities in disability and family
issues. That's what happened in Sandra and Bruce's case. They were
put in touch with Joan and Richard, who had an older child with the
same disability. Joan and Richard have "been there," as the saying
goes. And because of their experience, they have a lot of wisdom and
caring to share.
Parent to Parent matches are
usually made very quickly, often within 24 hours of the referral. At
the time of the match, parents contacting the program may have just
learned that their child has a disability. Or the parents may be
dealing with a new stage in their child's life.
What Happens After Parents Are Matched
Up?
Once parent matches are made,
each relationship develops on its own. A lot depends on what the
parents seeking support need and want. Some parents are just looking
for information'information about resources in the community, for
example, or more in-depth information about the disability. These
matches are usually short term. The parents get the information they
need and use it to improve their daily life or address whatever
concerns they have.
For other parents, the match
lasts for years and develops into a lifelong friendship. The
experienced parents can share a lot of "tips" that make daily living
easier. Other things get shared, too, like laughter and worries,
stories about the children and the rest of the family, resources
that might be helpful, strategies for dealing with issues the
families have in common, how to deal with school systems and
doctors, and the incredible joy and stress of parenting.
Since the parents share so
many common experiences, the Parent to Parent match offers a unique
form of support. This support is different from the support that
professionals provide. And, because the relationship between the
parents is one to one, the support is different from that found in
larger parent groups.
Can Parent to Parent Really Help
Me?
Yes, it most likely can! While
professionals can be very helpful to you and your child, you may
feel like many parents do'wishing you could talk to another parent
who has had similar experiences! When asked who is best able to
support them emotionally, families often say their first choice is
other parents who can share their experiences (Boukydis, 1984;
Singer et al., 1999; Summers et al., 1990).
There are many benefits to
sharing with other parents. A lot of useful information can be
exchanged. For example, you might contact Parent to Parent if you
want to:
- talk to someone about the impact of disability on your family
and friends;
- discuss the stress of dealing with multiple doctors, learning
a whole new vocabulary, and dealing with the financial aspects of
disability;
- find support and advice about special classes and services,
talking to special educators about your child's difficulties, and
trying to remain optimistic;
- find playmates and friends for your child who may not play the
same way as other children or with the same kind of toys;
- learn about keeping your family happy and healthy while making
major changes in your daily life and activities; or
- learn how to have confidence in your own impressions and your
own ideas for what your child needs and wants.
These are just some of the reasons that parents get in touch with
Parent to Parent. Probably one of the most powerful reasons, though,
is that the veteran parent is seen as a "reliable ally"'someone who
can provide emotional support and information in especially
meaningful ways because of the shared experiences. Many parents find
it's very helpful to learn how other families have managed similar
situations.
Sometimes having a child with a disability can make you feel very
alone and isolated. Parent to Parent can connect you with others who
know a lot about your daily issues and joys and challenges, because
they have had those issues, joys, and challenges in their own lives.
Experienced families will not tell you what to do'they will quite
simply be there for you and truly understand what you are going
through. Sharing coping techniques and other useful tips can make
life run more smoothly. Being able to discuss concerns with others
who are in the same situation can bring about realistic, practical
solutions. This is often exactly what parents newer to the
disability experience need. The purpose of Parent to Parent is to
help parents'you'make these vitally important connections.
My Child Has a Rare Disability. Can
Parent to Parent Still Help Me?
Parent to Parent programs reach into their network to find
matches for parents contacting the program. This network begins
within the local community. As was said above, parent matches are
made based on similarities in disability and family issues. If your
child has a rare disability or your family issues are unusual, or if
you live in a rural area, it may be hard to find a match for you in
your community. In this case, the program will reach beyond your
community, looking within the state. If necessary, the program may
consult with other programs in other areas or even other states in
order to match you with parents in similar circumstances. But they
will do the best they can to match you with parents who share your
unique experience.
Is There a Parent to Parent Program in
Every State?
Yes. Parent to Parent programs exist in every region of the
country. They range in size from very small ones serving just a few
parents to very large ones serving several hundred families. Some
are brand new programs, and some have been around for 25 years.
Today, close to 700 Parent to Parent programs offer services to
families through the one-to-one Parent to Parent match. In 32
states, there are local Parent to Parent programs and statewide
Parent to Parent programs. The statewide programs often provide
training and technical assistance to the local programs. They also
match parents statewide when a local match isn't available. Over
100,000 parents are participating in Parent to Parent programs in
the U.S. today.
How Do I Find a Parent to Parent Program
in My Area?
Parent to Parent programs are listed on the NICHCY State
Resource Sheets. For a copy of the resource sheet for your
state, you can either:
You can also go to the Web site of the Beach Center on Disability
to identify programs in your state. Visit the Beach Center at: www.beachcenter.org.
Will I Be Charged a Fee for the
Match?
No. Parent to Parent programs do not charge parents for matching
them with other parents. Experienced parents volunteer their time to
be matched with parents who are looking for support and information
from another parent. Because Parent to Parent programs are gifts
from parents who believe in the benefit of offering one-to-one
support to parents new to the program, many programs provide their
services with minimal funding for the program as a whole. It's no
exaggeration to say that programs operate on the dedication and
commitment of a core group of experienced parents who offer their
support for free.
There's No Parent to Parent in My Area.
Could I Start A Program?
Yes, you certainly could. A Parent to Parent program can be
established by any number of people'a parent of a child with a
disability, a core group of parents, a staff member of a service
provider agency, and/or parents and professionals working together.
At its core is a belief in the value of parents helping other
parents.
If you are really interested in starting your own local program,
be aware that existing Parent to Parent groups have a wealth of
"how-to" help and advice. Many have excellent information and
training materials available. Be sure to contact the programs in
your state. Let them know your plan, and see if they have any
materials they'd be willing to share. We've also listed some useful
materials under "Resources" below. Starting up and operating a
Parent to Parent program involves a lot of work, but as
participating parents can tell you, it's worth it!
References
Boukydis, C. F. (1984). The importance of parenting
networks. Paper presented at Parent Care Conference, Salt Lake
City, UT.
Singer, G.H.S., Marquis, J., Powers, L., Blanchard, L., DiVenere,
N., Santelli, B., & Sharp, M. (1999). A multi-site evaluation of
Parent to Parent programs for parents of children with disabilities.
Journal of Early Intervention, 22(3), 217-229.
Summers, J.A., Dell'Oliver, C., Turnbull, A., Benson, H.,
Santelli, E., Campbell, M., & Siegel Causey, E. (1990).
Examining the individualized family service plan process: What are
family and practitioner preferences? Early Childhood Special
Education, 10(l), 78-99.
Resources
Beach Center on Disability. (1998). How to begin your own
Parent to Parent program. Lawrence, KS: Author.
Santelli, B., Poyadue, F.S., & Young, L.Y. (2001). The
Parent to Parent handbook: Connecting families of children with
special needs. Baltimore, MD: Paul H. Brookes. (Available from
Paul H. Brookes Publishing, P.O. Box 10624, Baltimore, MD
21285-0624. Telephone: 1-800-638-3775. Web: www.brookespublishing.com)
This information
is copyright free. Readers are encouraged to
copy and share it, but please credit the National
Dissemination Center for Children with Disabilities (NICHCY).
Please share your ideas
and feedback with our staff. |
| Publication of this document is made possible
through a Cooperative Agreement between the Academy for
Educational Development and the Office of Special Education
Programs of the U.S. Department of Education. The contents of
this document do not necessarily reflect the views or policies
of the Department of Education, nor does mention of trade
names, commercial products, or organizations imply endorsement
by the U.S. Government. |
NICHCY
P.O. Box 1492
Washington, DC
20013
(800) 695-0285 · v/tty
(202) 884-8441 ·
fax
email: nichcy@aed.org
Web: www.nichcy.org |
| NICHCY would like to thank Betsy Santelli, the
author of this Basics for Parents, for sharing her
expertise about Parent to Parent with us and with our readers.
Betsy coordinated the Parent to Parent research at the Beach
Center on Disability. It is with great regret that we report
that Betsy passed away in 2002 after a brief illness. She
wrote this paper shortly before her death. |
