Care of Children with Down Syndrome
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What is Down Syndrome
Care of Children with Down Syndrome |
Down syndrome is a chromosomal anomaly that occurs in 1.3 per 1000 births.
For some unexplained reason, an error in cell development results in
47 chromosomes rather than 46. The extra gene material slightly
changes
the orderly development of the body and brain. About 5000 babies
with
Down Syndrome are born in the United States every year. The national
population of individuals with Down Syndrome is estimated to be 250,000.
About 80% of babies with Down Syndrome are born to mothers under the
age of 35. About 1 in 400 babies born to women over 35 have Down
Syndrome.
People with Down Syndrome are more like typically developing individuals
than
they are different. There is a great diversity within the population
in terms of
personality, learning styles, intelligence, appearance, compliance,
humor, compassion,
congeniality, and attitude. Favorite pastimes vary from person
to person and range
from reading and gardening to baseball and music, and beyond.
Children with Down Syndrome look more like their families than they
do one another.
They have a full complement of emotions and attitudes, are creative
and imaginative
in play and pranks, and grow up to live independent lives with varying
degrees of
support and accommodations needed. Down Syndrome will not be
the most interesting
thing about your son or daughter as they grow up. Remember that
raising any child fills
your life with unimaginable delight and difficulties. We can
no longer predict how far
our children will go.
Care of Children with Down Syndrome Top of Page
Children with Down Syndrome benefit from the same care, attention, and
inclusion
in community life that help every child grow. As with all children,
quality education
in neighborhood schools and preschools or at home is important to provide
the child
with Down syndrome the opportunities that are needed to develop strong
academic skills.
On standard IQ tests, our sons and daughters with Down Syndrome most
often score
in the mild to moderate range of mental retardation. These tests
do not measure many
important areas of intelligence, and you will often be surprised by
the memory, insight,
creativity and cleverness of your child. The high rate of learning
disabilities in students
with Down Syndrome sometimes masks a range of abilities and talents.
Although babies and children with Down Syndrome are early customers
for extensive
health evaluations, infant stimulation, physical therapy, communication
enhancement,
developmental evaluations, and other professional intervention, it
is important to keep
in mind that every child deserves to be surrounded by people who love,
respect and
admire all children.
Individuals with Down syndrome may be identified by numerous physical
attributes
which may or may not present themselves in any one individual.
Some characteristics
are the beautiful almond shaped eyes, with striking Brushfield spots
on the irises, a
single palmar crease on one or both hands, small features, and exceptional
social
intelligence. Individuals with DS have a high rate of congenital
heart defects
(35 to 50%) and should have an echocardiogram within the first two
months of life.
National organizations provide medical checklists for individuals with
DS that you
may wish to pass on to your child's physician.
Types of Down Syndrome Top of Page
There are three major types of Down Syndrome. Your baby is most
likely to have
Trisomy 21, meaning the presence of extra genetic material on the 21st
pair of
chromosomes resulting from an anomaly in cell division during development
of the
egg or sperm, or during fertilization. About 95% of people with
DS have Trisomy
21. About 4% have Translocation, where the extra
chromosome 21 broke off and became attached to another chromosome.
About 1% have mosaicism, where only some cells have Trisomy 21.
Future for Children with Down Syndrome Top of Page
Your child will have more opportunities than a child born with Down
Syndrome five
years ago. As young people with DS show what they can do with
the support of their
communities as they integrate mainstream programs, more doors open
for others.
We have seen a TV series starring a talented actor and actress with
DS enlighten the
general public about the potential of all our children.
Two young men have authored a book, Count Us In, Growing Up with Down
Syndrome,
and impressed audiences across the country at book signings and on
talk shows.
A fast-paced mystery, Honor Thy Son, by Lou Shaw, features two characters
with
Down Syndrome who are faithfully portrayed as multidimensional young
adults.
A young man with Down Syndrome is the winner of the 1996 Best Actor
honor at Cannes.
Thousands of young people with Down Syndrome across the country are
quietly going on
with their lives without fame or fanfare and transforming their communities
by just being
there. They have dreams and the determination to reach their
goals. They will learn in
regular classrooms in their neighborhood schools with children who
will one day be their co-workers, neighbors and adult friends. Young
adults hold diverse and meaningful jobs,
maintain their own households, and make significant contributions to
their communities
every day.
Down Syndrome Resources Top of Page
These national organizations will send free, accurate information about
Down Syndrome to
you, and to other family members. They have yearly conferences,
newsletters, and lists
of local parent groups who you may wish to contact for local resources
and information.
Organizations
Top of Page
The National Down Syndrome Congress: 1-800-232-6372
The National Down Syndrome Society: 1-800-221-4602
Internet
Top of Page
The newly updated Health Care Guidelines for Individuals with Down
Syndrome
(DS Preventive Medical Checklist) is available at the Down Syndrome
WWW page, at http://www.nas.com/downsyn/dshm.html
and at the
Down Syndrome Quarterly page at http://www.denison.edu/dsq/health96.html.
*By searching using the key words “Down Syndrome” you can find numerous
web pages, etc. on the internet.
Tulsa
Area Contacts
Top of Page
Tulsa Advocates for the Rights of Citizens with
Developmental Disabilities (Tulsa ARC)
582-8272
Knowledgeable in all disabilities, they can help you find other resources.
Sooner Start 835-8691
Oklahoma's early intervention program, they can assist you in getting
therapeutic services.
Parent
Contacts
Top of Page
To talk to a parent in the Tulsa area or ask specific questions please
call:
Kimberly Wofford 622-6906
Andrea Eden 224-8171
They are officers of the Down Syndrome Association of Tulsa (DSAT) and
can give
you an extensive new parent packet upon request as well as add you
to the DSAT
mailing list to inform you of meeting times and places.
Acknowledgments Top of Page
The Down Syndrome Association of Tulsa Would like to thank Pam Wilson for the use of her materials. Reprinted with permission.
DSAT would also like to thank the Tulsa ARC for the paper and printing
of our pamphlet.
A Final Note Top of Page
Allow your family, friends and neighbors some time to learn about Down
Syndrome,
reminding them if necessary that Down Syndrome is just a small part
of who your child
is and will become. It is a small part of your child's genetic
make-up. Staying integrated
in your mainstream community is important to your child's development
and your peace
of mind.
Try to get some rest. You are allowed to feel however you feel,
and so are others who
love you and your baby. Childbirth is hard work; many of your
emotions stem from a
new life coming into your family. You deserve congratulations
and wonderful gifts.
Have the best cooks among your family and friends bring over their
best meals.
Take time to welcome and enjoy your baby. They grow up fast!