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Welcoming Babies with Down Syndrome ~ A
brochure published with permission from its author, Pam Wilson, bb053@scn.org,
pmwilson@aol.com
Welcoming Babies with Down
Syndrome may be edited and printed to distribute to hospital nurseries,
medical professionals, the media, family and friends, to benefit
individuals with DS and their families where local parent groups do not
have information packets available. (Resources follow the narrative below)
Welcoming Babies with Down Syndrome
If you are welcoming a new baby with Down Syndrome into your family, you
probably have many questions and concerns, as do your extended family,
friends, and neighbors. We have written this information keeping in mind
our own diverse
experiences when our children were born with DS.
Congratulations on the birth of your baby. We wish you all the best.
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 the usual 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 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 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 sometime mask 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.
There are three major types of Down Syndrome. Your baby is most likely to
have Trisomy 21, meaning 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.
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
multi-dimensional 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 learn in regular classrooms in
their neighborhood schools
with the children who will one day be their coworkers, neighbors and adult
friends. Young adults hold diverse and meaningful jobs, maintain their own
households, and make significant contributions to their communities every
day.
Allow your family, friends and neighbors some time to learn about Down
Syndrome, reminding them if necessary that DS is just a small part of who
your child is and will become. It is a small part of your child’s
genetic makeup. 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 good
cooks among your family and friends bring over their best meals.
Take time to welcome and enjoy your baby. They grow up
fast.
These national organizations will send free,
accurate information about Down Syndrome to you and 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. In the USA contact:
The National Down Syndrome Congress: 1-800-232-6372
The National Down Syndrome Society 1-800-221-4602
Health Care Guidelines for Individuals with
Down Syndrome (DS Preventive Medical Check list) is
available at the Down Syndrome Quarterly WWW page
http://www.denison.edu/dsq/health99.shtml
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Welcoming Babies with Down Syndrome may be edited and printed to
distribute to hospital nurseries, medical professionals, the media, family
and friends, to benefit individuals with DS and their families where local
parent groups do not have information packets available.
**** Information, Resources and Support ****
Down Syndrome Home Page
http://www.nas.com/downsyn/
Articles by professionals; essays by family members
Snapshots of the kids in the Brag Book; Links and Resources;
Information on the Down-Syn internet list serv and archives
DS
Listserv
http://www.nas.com/downsyn/dslistserv.html
Down
Syndrome: Beginnings
http://www.nas.com/downsyn/start.html
Welcoming Babies with Down Syndrome
http://www.nas.com/downsyn/welcome.html
Spanish Bienvenidos Bebes con Sindrome de Down
http://www.nas.com/downsyn/wbsp.html
French Accueillir les bebe trisomiques
http://www.nas.com/downsyn/frwds.html
Japanese Characters
http://infofarm.cc.affrc.go.jp/~momotani/welbaby.html
Disability Solutions
An excellent free newsletter about Down Syndrome
available in print as well as online at
http://www.disabilitysolutions.org
9220 SW Barbur Blvd 119-179
Portland Oregon 97219
503/244-7662
email: Joan@disabilitysolutions.org
Down Syndrome Health Issues
http://www.ds-health.com
dr.len@ds-health.com
Also includes listing of Down Syndrome Clinics in the US;
DS topic WWW sites
Your Baby has Down Syndrome video
Down Syndrome Center; Children's Hospital of Pittsburgh
3705 Fifth Avenue; Pittsburgh, PA 15213
Phone: 412-692-7963; FAX: 412-692-7428
_Babies With Down Syndrome, A New Parents' Guide_, ed.
by Karen Stray-Gundersen, Woodbine House, ISBN 0-933149-64-6
_Understanding Down Syndrome; An Introduction For Parents_
by Cliff Cunningham; Brookline Books, 1996; ISBN No.
1-57129-009-5
BROOKLINEBKS@delphi.com; 800-666-2665 American Edition
Welcome to Holland (English, Spanish, Chinese)
http://www.nas.com/downsyn/donations.html
Thoughts from the Middle of the Night
http://www.our-kids.org/Archives/TFtMotN.html
_Communication Skills in Children
with Down Syndrome: A Guide for Parents_
Libby Kumin; ISBN Number: 0-933149-53-0
Woodbine House, 1-800-843-7323
6510 Bells Mill Road
Bethesda, MD 20817
(301) 897-3570
http://www.woodbinehouse.com/
Enhancing Language Development
http://www.nads.org/speech.html
_Teaching Reading to Children with Down Syndrome,
A Guide for Parents and Teachers_
Patricia Logan Oelwein; ISBN Number 0-933149-55-7
Woodbine House, 1-800-843-7323 http://www.woodbinehouse.com/
Activities to promote reading from infancy through adulthood
Down Syndrome Quarterly - newsletter
http://www.denison.edu/dsq/
Editor: Samuel J Thios, PhD, thios@denison.edu
614-587-6338 Fax 614-587-6417
Denison University; Granville, OH 43023
Newsletter with articles of interest to the Down Syndrome
Medical Special Interest group on diverse topics
Mother's Day
A Father's Letter to New Parents
An Open Letter From My Heart To Educators
http://www.nas.com/downsyn/donations.html
My Sister has Down Syndrome
"Dare to be Different"
Siblings
http://www.nas.com/downsyn/donations.html
National DS Congress:
NDSCcenter@aol.com
http://www.carol.net/~ndsc/
USA telephone 1-800-232-6372
404-633-1555
The National Down Syndrome Society
info@ndss.org
http://www.ndss.org
USA telephone 1-800-221-4602
212-460-9330
NADS (USA)
http://www.nads.org
Fax: 630-325-8842
Dan's Page - Teenager with Down Syndrome
http://members.aol.com/karenl2888/dan.html
KarenL2888@aol.com (Inclusion Chat host)
Video: A Promising Future Together:
A Guide for New Parents of Children with Down Syndrome.
National DS Society
666 Broadway, 8th Floor
New York, NY 10012-2317
Fax: 212-979-2873
Risk and Recurrence Risk of Down Syndrome
An Extra Chromosome for Freddie
Open Window, Issue 3
Preparing for Surgery
http://www.nas.com/downsyn/donations.html
Love and Learning
http://www.concentric.net/~Lovlearn/
lovlearn@concentric.net
Parents of a child with Down Syndrome have developed a
teaching technique which enabled their daughter to read over
1000 words by age 5. This method utilizes videos, audio tapes,
and books to help develop language, reading, and
comprehension skills.
What's Up with Down Syndrome
http://members.ttlc.net/~kehler/What'sUp.html
List of DS clinics
http://www.ds-health.com/clinics.htm
Beautiful Faces Calendars and Cards
http://www.bandofangels.com/
http://www.bandofangels.com/
_Infant Massage : A Handbook for Loving Parents_ by
Vimala Schneider McClure; Bantam Doubleday Dell; 1989
ISBN: 0553346326
With more than 90,000 copies of the first edition in print, Infant
Massage has been completely revised and updated to reflect fascinating
new research about the effects of touch on parent-child bonding, infant
stress, sensory development, and the care of special-needs babies.
Synopsis found at http://www.amazon.com
Australian breastfeeding tips page
http://www.vicnet.net.au/vicnet/nmaa/downsynd.htm
Enhancing Feeding Skills
http://www.nads.org/speech.html
Breastfeeding Advocacy WWW page
http://www.clark.net/pub/activist/bfpage/bfpage.html
Family Village Project
http://www.familyvillage.wisc.edu:8000/lib_down.htm
Linda Rowley, Family Village Project Coordinator
rowley@waisman.wisc.edu
Diverse diagnoses and related conditions; click on LIBRARY at
http://www.familyvillage.wisc.edu/
Text Only (quick to read, no graphics)
http://www.familyvillage.wisc.edu/tindex.htm
The Development of Language and Reading Skills in Children With Down
Syndrome, by Susan Buckley. Portsmouth Polytechnic, 1986.
She has had success in teaching children with DS as young as 2 to read.
http://www.downsnet.org
Growth
Charts for Children with Down Syndrome
http://www.growthcharts.com/
Pat Oelwein's DS in a Nutshell
http://www.angelfire.com/wa/reimeroo
_Teaching the Child with Down Syndrome: A Guide for Parents
and Professionals_, by M.J. Hanson, Pro-Ed, ISBN 0-89079-103-1
Tech Aides and Educational Supports
http://www.ashleysmom.com
Sign language class online (for parents)
http://www.lifeprint.com/outline.htm
Down Syndrome Mailing Lists and ListServs
DS
Sites on the Internet
http://www.ds-health.com/ds_sites.htm
Riverbend Down Syndrome Parent Support Group
Speech & Communication, Early Intervention, Many other topics of
interest
Riverbend Down Syndrome Parent Support Group Site Menu
http://www.altonweb.com/cs/downsyndrome/index3.html
DS & Hirschsprung Disease Section
http://www.altonweb.com/cs/downsyndrome/hirschin.html
Learning to Talk
http://www.altonweb.com/cs/downsyndrome/comtalk.html
The Effectiveness of Early Intervention
http://www.altonweb.com/cs/downsyndrome/eieffective.html
COUNT US IN : GROWING UP WITH DOWN SYNDROME
(by Jason Kingsley & Mitchell Levitz)
http://brugold.com/count.html
Information on Mosaic DS
Disability Solutions
http://www.teleport.com/~dsolns/mosds.html
http://www.childrensheart.org
Downs Heart Group
http://www.downs-heart.downsnet.org/table_of_contents.htm
http://www.downs-heart.downsnet.org/
e-mail : Downs_Heart_Group@msn.com
THE ARC'S HOME PAGE
http://www.thearc.org/
thearc@metronet.com
Your Baby has Down Syndrome
http://www.flash.net/~nxtmedia/tdsa/index.html
TNI, Piracetam, Vitamin/Amino Acid Supplementation
What's Up with Down Syndrome
http://members.ttlc.net/~kehler/What'sUp/Home/Home.html
Down Syndrome Quarterly
http://www.denison.edu/dsq/
Down Syndrome Health Issues
http://www.ds-health.com
To report adverse effects of supplementation, email to
Dr. Phil Mattheis at mattheis@SELWAY.UMT.EDU
Down-Syn list serv
To subscribe, send message to
LISTSERV@LISTSERV.NODAK.EDU
with a Subject of No Subject
and a message of
subscribe down-syn <put your first and last name here>
Respond OK to the confirmation message
You may leave the list at any time by sending a
"SIGNOFF DOWN-SYN" command to
LISTSERV@LISTSERV.NODAK.EDU
Once subscribed you may change your method of reading
the list by sending a message <set down-syn digest> to
the list serv address, and all the posts will arrive in one
piece of email once a day. To unsubscribe from the digest,
the message would read <signoff down-syn digest>
To send a message to other parents and concerned professionals,
write to DOWN-SYN@LISTSERV.NODAK.EDU (the message address)
It is also available as a newsgroup:
bit.listserv.down-syn
DS
Listserv
http://www.nas.com/downsyn/dslistserv.html
Down-syn archives and direct subscription/sign off
http://listserv.nodak.edu/archives/down-syn.html
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