A
guide for New Parents of children with Down syndrome (from NDSS.org)
Congratulations
Congratulations on the birth, or expected birth, of your baby! We
understand that your baby may have Down syndrome. You probably have
a million questions, concerns and fears right now. That's okay. The
most important thing to keep in mind is that this diagnosis is not
as life-changing as the fact that you have a new baby. And in most
ways, your baby will be just like other infants. Every baby needs to
be fed, held and most of all, loved.
There will be challenges in raising your child, but there will also
be many, many joys. It's normal to be nervous about what lies ahead,
but remember that Down syndrome is a condition your baby has, it is
not who your baby is. Now is the time to begin learning all you can
about Down syndrome and this brochure is a great place to start.
What is Down syndrome?
Down syndrome is the genetic condition resulting when a baby is born
with three, rather than the usual two, copies of chromosome 21.
Because there are three copies of chromosome 21, Down syndrome is
also called trisomy 21. In a small percentage of cases, there is
only an additional part of chromosome 21. This is called partial
trisomy 21. The cause of the extra chromosome (or part) is still
unknown. This extra genetic material will affect your child's
development but it is not a blueprint that determines his or her
potential.
Although there are physical indicators of Down syndrome in a
newborn, a definitive diagnosis can only be made with a karyotype, a
visual display of the chromosomes. Make sure to obtain a copy of
your child's karyotype.
Getting Support and Information
In the first few months, your best resource will be other parents.
Families who have children with Down syndrome can help you look
beyond your baby's diagnosis and delight in the joys of parenthood.
They can also help you understand the new terminology, services and
organizations that will help your baby develop successfully. NDSS is
affiliated with parent support groups across the country and can
refer you to a group in your area.,
NDSS can also provide information on all aspects of Down syndrome.
Contact us for a free New Parent Packet that contains general
information, inspirational material and a list of resources for new
parents. When you visit NDSS online at www.ndss.org, you can find
local and national resources, connect with other parents through
message boards, purchase helpful products and more.
A Healthy Start
You can ensure your newborn's optimal development through informed
health care. The Health Care Guidelines for Individuals with Down
Syndrome are compiled by the Down Syndrome Medical Interest Group, a
national affiliation of health care providers who care for
individuals with Down syndrome. The guidelines, which follow an
individual's development from birth through adulthood, will alert
your primary care physician to potential health concerns for your
child. For instance, during the first three months, babies should be
screened for cardiac problems, cataracts and hearing loss. While the
guidelines highlight areas in which babies with Down syndrome may be
at risk, this doesn't mean that your baby will have all or any of
the conditions listed. Remember that each baby is an individual with
a unique medical history.
Because children with Down syndrome are generally shorter than
typically developing children, Down Syndrome Growth Charts have been
created by physicians and researchers to help track your child's
development. Both the Down Syndrome Health Care Guidelines and
Growth Charts are available free of charge through the NDSS Web site
or by calling our Information and Referral Center.
For optimal health care, locate a developmental pediatrician,
specialists knowledgeable about Down syndrome or a Down syndrome
clinic if one is available near your home. These specialists can
work with your primary care physician. Local parent groups are an
excellent resource for learning of health care professionals who
have experience with Down syndrome.
Therapies & Treatments
As you research Down syndrome, you will likely come across
information on alternative therapies that are promoted for children
with Down syndrome. Through the years there have been many popular
therapies, but none have been scientifically proven and many are not
documented to be safe or effective. Understandably, parents want to
try anything they feel will help their child, but be sure to discuss
all potential therapies or treatments with your pediatrician and
consider these important questions:
Is the therapy documented to be safe and effective? Ask for copies
of current research studies that support the therapy's claims.
Will the person promoting the therapy benefit from its use?
Proponents may have financial interests in sales of the therapy.
Is the therapy expensive or overly demanding of the new family's
time?
What are the risks or side effects? Most therapies have both effects
and side effects. These side effects should be weighed against the
benefits.
Early Intervention & Preschool
Your child is entitled to intervention and education that will
assist in maximizing his or her potential. Early intervention should
begin as soon as possible after birth and should be targeted to your
child's needs. Early intervention may include physical, speech and
occupational therapy. The evaluation to determine whether your child
is eligible for early intervention is free of charge if performed by
a state-authorized service provider. Check with your state's early
intervention center for these providers. No child may be denied
services based on ability to pay, but each state has its own process
to administer these services. A complete listing of early
intervention centers by state is available on the NDSS Web site.
Federal law PL 105-17, the Individuals with Disabilities Education
Act (IDEA), mandates that local school districts provide free
preschool services for children with disabilities starting at the
age of three. A local parent group can help you access these
services and, if necessary, advocate for your child's needs.
Kindergarten
As your baby grows and prepares for kindergarten, you will need to
learn more about your child's educational rights, protected by the
Individuals with Disabilities Education Act (IDEA). Under IDEA, your
child is entitled to "a free and appropriate education in the least
restrictive environment." The "least restrictive environment" may
include placement in your neighborhood school. For many children
with Down syndrome, the least restrictive environment is a classroom
with typical students of all abilities, supported by teacher's
assistants and therapists when necessary. This arrangement is called
"inclusion."
Inclusion has become more common in recent years, primarily because
parents have advocated for it. Inclusion is beneficial to both the
child with Down syndrome and the other students in the class. Learn
your local school district's educational philosophy and begin
advocating for change if necessary. Inclusion should be an option
for all students, but there is no "one-size-fits-all" approach to
educating students with Down syndrome.
Expectations
When a child with Down syndrome is born, many people - from experts
to family members - will tell you they "know" what your child will
accomplish in life. While there are guidelines regarding physical
and cognitive development, it is impossible to predict the future of
a child with Down syndrome - just as it is for any other child. No
professional can look at a child and tell you how intelligent,
successful or independent he or she will be in 20, 30 or 50 years.
Don't lower your expectations because your baby has Down syndrome.
You will never know what your child is capable of if you don't give
him or her the chance to succeed. Today, individuals with Down
syndrome are achieving more than we ever thought possible - due in
part to a higher expectations and more opportunities. They are
living independently and semi-independently, working and
volunteering in the community, graduating high school and attending
post-secondary education programs. People with Down syndrome have
meaningful relationships and some marry. Whether or not your child
accomplishes these things, it is never wrong to challenge children
to do their best.
While it's important to encourage children with Down syndrome to
follow their dreams, remember to balance your positive expectations
with reality. Avoid placing unrealistically high expectations on
your child. Failure to meet parental expectations can negatively
affect a child's self-esteem. In any case, it is important to enjoy
this time with your baby and celebrate each milestone as it happens.
Your Entire Family
When a baby is born, especially one with Down syndrome, the family's
attention is often focused on its newest member. It will be
difficult, but don't lose sight of the needs of your spouse and
other children. Build time into the day for each member of the
family. All members of your family are special in their own way -
not just your child with Down syndrome. Encourage your whole family
to focus on the baby as an individual and a member of the family,
not only on his or her diagnosis.
What the Future Holds
Your child has been, or is about to be, born into a world of
opportunities never before imagined for people with Down syndrome.
NDSS has worked since 1979 to ensure that all people with Down
syndrome have the opportunity to achieve their full potential. We
have celebrated many advancements through the years, but there is
still far to go. We envision a future in which your baby realizes
dreams that today we cannot even imagine.
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