Ten Steps to Take

Ten Steps to Take
Right Now,
When Your Child is
Diagnosed with
Down syndrome

This brochure was developed by parents of children with Down syndrome, in the hopes that by sharing our experiences we may help you to see yourselves as the parents of a beautiful, loving baby first, and the parents of a child with Down syndrome second. Please try to remember that despite any special needs your child may have, he or she is still your baby. He will have your looks and in many ways will be like every one else in your family. She will display her own temperament, develop her own sense of humor and will achieve her own talents within her own time.

As the parents of children who experience Down syndrome, we know many of the emotions you are now experiencing and will in the future. We understand the heartache, fears, joys, frustration, laughter and love that go hand in hand when you raise a child with Down syndrome. We developed this brochure as a way to give you 10 steps you can take right now to connect you with the resources and supports available to you. By taking these steps you will discover undreamed of strengths in your child and yourself. Starting here will not change the diagnosis, but it may change the prognosis.

1. Breathe deeply, relax and realize that you
are not alone. The fact that your child
experiences Down syndrome is only one part
of who he or she is and will become as a
person.

2. Read Babies with Down syndrome: A New
Parents Guide by Stray Gunderson. This
book is only a guide and you and your child
may not experience everything discussed
within this book.

3. Connect with the Area Agency that serves
your region of New Hampshire. This is the
agency through which you will connect with
Early Supports and Services (ESS). The
purpose of ESS “is to provide developmental,
therapeutic and support services to children
with delays or disabilities from birth to age
three.” ESS will help you address your
concerns, prioritize your needs, explore your
resources, and set a course of action all
within the comforts of your own home.
ADVOCATE!
It is extremely important you understand
that you are your child’s strongest, most
effective advocate. One parent’s story of
their daily life is much more meaningful
than a hundred professionals.
You know your child best.
You must always be vigilant, and ready to
advocate for their needs.

5. Apply for Medicaid/Healthy Kids Gold. It
is likely that your child may qualify via the
Katie Beckett waiver, which allows Medicaid
to serve children with disabilities. Under this
waiver, Medicaid becomes the secondary insurance
that will cover expenses such as medical equipment,
prescription co-payments and home health
support not covered by primary health
insurance policies. Your contact through ESS
or the person at the Medicaid office who
assists you should know all about this
process.

6. Work with your child on a daily basis by
incorporating the therapies you are learning
about from your ESS provider within your
daily routines. Don’t get discouraged. It
will take some time but your child will learn.
In the meantime, take a lot of pictures, play,
laugh and enjoy!

7. Consider taking a sign language class.
Studies have shown that even typical
children benefit from learning how to
express themselves long before they can tell
us verbally. This will alleviate frustration on
your part and your child’s regarding his/
her needs. Utilizing sign language
will promote language development.

8. If your child is born with
a heart condition, doctors
will first need to
determine what type and
whether or not surgery is
needed. A Pediatric
Cardiologist should be
consulted. You will be
taking in a lot of
information, so write
things down. Don’t be
afraid to ask any questions
at any time, day or night,
to get a second opinion or
to switch cardiologists.
You need to have your
child’s best interest in
mind.

9. Begin annual consultations with an
Audiologist for any hearing issues, an
Ophthalmologist for any vision issues and a
Cardiologist for any heart issues now or later
on. Read Medical & Surgical Care for
Children with Down syndrome by Van Dyke,
Mattheis, Eberly and William.

10. If you have other children include them
in what is going on. Listen to them and be
patient. They are adjusting to this new
person as well.

4. Find other families that have a child with
Down syndrome by connecting with Parent
to Parent through your ESS provider, or
search for your coordinator on-line at
www.p2pnh.org.