Professional Documents
Culture Documents
NEWS DIGEST
A publication of the National Information Center for Children and Youth with Disabilities
I
Parenting a Child
with Special
Needs
C
When parents learn that their In the first
child has a disability or a chronic article, “You Are
illness, they begin a journey that Not Alone,”
takes them into a life that is often Patricia McGill
filled with strong emotion, difficult Smith speaks
choices, interactions with many candidly to parents
H
different professionals and special- about the emotions
ists, and an ongoing need for that many parents of
information and services. Initially, exceptional children experience and
parents may feel isolated and alone, offers a perspective for living and coping
and not know where to begin their with the impact of disability upon the
search for information, assistance, family. The second article, “The
understanding, and support. This Unplanned Journey,” delves into the
News Digest has been developed areas in which parents and families
expressly to respond to the informa- often need information and offers
tion needs of parents—those who suggestions about potential resources.
C
have just learned their child has Included in this article are discussions of
special needs and those who have such issues as: adjusting to this new life,
lived with this reality for some time accessing information and services,
but who have reached a transition supporting the needs of the family,
point where they need new infor- finding child care, and working with
mation or renewed support. This professionals.
issue provides a starting point for
families in their search for informa-
tion and resources. We hope that it
will also be useful to professionals Table of Contents
Y
who work with families who have a
You Are Not Alone / 2
child with a disability, helping them
to understand how having a child The Unplanned Journey / 7
with a disability can affect the family References / 15
and providing them with a ready Publishers / 16
resource to share with the parents
with whom they work.
You Ar
Aree Not Alone
For Parents When They Learn Their Child Has a Disability
by Patricia McGill Smith
My first recommendation is to If there are other children, talk Take One Day at a Time
Time
try to find another parent of a with them, too. Be aware of their
child with a disability, preferably needs. If you are not emotionally Fears of the future can immobi-
one who has chosen to be a parent capable of talking with your lize one. Living with the reality of
helper, and seek his or her assis- children or seeing to their emo- the day which is at hand is made
tance. All over the United States tional needs at this time, identify more manageable if we throw out
and over the world, there are others within your family structure the “what if’s” and “what then’s”
Parent to Parent Programs. The who can establish a special com- of the future. Even though it may
National Information Center for municative bond with them. Talk not seem possible, good things
Children and Youth with Disabili- with significant others in your will continue to happen each day.
ties (NICHCY) has listings of life—your best friend, your own Worrying about the future will
parent groups that will reach out parents. For many people, the only deplete your limited re-
and help you. If you cannot find temptation to close up emotion- sources. You have enough to focus
your local parent organization, ally is great at this point, but it can on; get through each day, one step
write to NICHCY to get that local be so beneficial to have reliable at a time.
information. friends and relatives who can help
to carry the emotional burden. Learn the Terminolo
Terminology
erminology
Talk with YYour
our Mate, FFamily
amily
amily,, When you are introduced to
and Significant Others Rely on Positive Sources new terminology, you should not
in YYour
our Life be hesitant to ask what it means.
Over the years, I have discov-
ered that many parents don’t One positive source of strength Whenever someone uses a word
communicate their feelings regard- and wisdom might be your minis- that you don’t understand, stop
ing the problems their children ter, priest, or rabbi. Another may the conversation for a minute and
have. One spouse is often con- be a good friend or a counselor. ask the person to explain the
cerned about not being a source of Go to those who have been a word.
strength for the other mate. The strength before in your life. Find
more couples can communicate at the new sources that you need
difficult times like these, the now.
greater their collective strength.
Understand that you each ap- A very fine counselor once gave
proach your roles as parents me a recipe for living through a
differently. How you will feel and crisis: “Each morning, when you
respond to this new challenge may arise, recognize your powerlessness
not the same. Try to explain to over the situation at hand, turn
each other how you feel; try to this problem over to God, as you
understand when you don’t see understand Him, and begin your
things the same way. day.”
Parents, too, can benefit from Questions Often Asked by Parents about Special Education Services*
early intervention services. As full Questions and Answers about IDEA*
members of the team developing
the program for their child, they Related Services*
can learn skills that may be useful And much more! * Also available in Spanish.
for a long time—skills in helping
Publishers
Berkley Books, Penguin Putnam Little, Brown: The resource listing Paul H. Brookes Publishing,
Publishing Group, 405 Murray Hill “Little, Brown” as publisher is available P.O. Box 10624, Baltimore, MD 21285-
Parkway, East Rutherford, NJ 07073. through your local booksellers or 0624. Telephone: 1-800-638-3775.
Telephone: 1-800-788-6262. booksellers on-line such as amazon.com. Email: custserv@brookespublishing.com
Web: www.penguinputnam.com To help readers identify either a local or Web: www.brookespublishing.com
on-line bookseller, Little, Brown
Communication Skill Builders, Attn: (through Time Warner) provides this Woodbine House, 6510 Bells Mill Road,
Customer Care, 19500 Bulverde Road, address: www.twbookmark.com/ Bethesda, MD 20817. Telephone: 1-800-
San Antonio, TX 78259. where_to_buy.html. 843-7323; (301) 897-3570.
Telephone: 1-800-872-1726. Web: www.woodbinehouse.com
Email: customer_care@harcourt.com NICHCY, P.O. Box 1492, Washington,
Web: www.psychcorp.com DC 20013. Telephone: 1-800-695-0285
(V/TTY). Email: nichcy@aed.org
Web: www.nichcy.org
NICHCY News Digest is published in response to questions from individuals and organizations. NICHCY also disseminates
other materials and can respond to individual requests for information. For further information or assistance, or to receive a
NICHCY Publications Catalog, contact NICHCY, P.O. Box 1492, Washington, DC 20013. Telephone: 1-800-695-0285 (Voice/
TTY) and (202) 884-8200 (Voice/TTY). You can e-mail us (nichcy@aed.org) or visit our Web site (www.nichcy.org), where
you will find all of our publications.
NICHCY thanks our Project Officer, Dr. Peggy Cvach, at the Office of Special Education Programs (OSEP), U.S. Department
of Education, for her review and many helpful suggestions.
This information is copyright free. Readers are encouraged to copy and share it, but please credit the National Information
Center for Children and Youth with Disabilities (NICHCY).
NICHCY
National Information Center
for Children and Youth with Disabilities
P.O. Box 1492 • Washington, DC 20013
(800) 695-0285 (V/TTY) • (202) 884-8200 (V/TTY)
Email: nichcy@aed.org • Web: www.nichcy.org