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UPSIDE! Ramblings

Short vignettes on topics of interest to us all:

Beautiful Faces Calendars

If you've been looking for a special gift that shows the warmth and joy of Down Syndrome children, take a peek at Cynthia Kidder's Beautiful Faces Calendars (and Cards) web page. For the past two years we've purchased the calendars as Christmas presents for our family and Jennifer's teachers. For those who might tend to forget, they're a gentle reminder that DS kids are fun-loving children just like everyone else.

Ordering information is available on the web page.

As an alternative, the Barnes and Noble bookstores carry a different, but also very nice calendar featuring DS kids. In either case, they're elegant products.

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Respite Providers


Would you consider becoming a Respite Provider for the Division of Developmental Disabilities? Being a Respite Provider means working on a one-to-one basis with a person with a developmental disability. The work is usually done in the person's home, although respite providers sometimes work in their own homes. No special background is necessary, just a genuine caring for people. Training is provided.

For information call the Division of Developmental Disabilities, (206)593-2812 or 1-800-248-0949 and talk with Noel Hagens or Vickkey Downey.

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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

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 look more like their families than they do one another, 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.

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.

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.

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

A printed version of The Down Syndrome Health Checklist is available for free from the National Down Syndrome Congress. Call, or write NDSC, 1605 Chantilly Drive, Suite 250, Atlanta, GA 30324-3269.

Resources for families outside the USA, and the DS Preventative Medical Check list are available at the WWW page http://www.nas.com/downsyn/ and are available via email to those who do not have WWW access from bb053@scn.org

Open Window online newsletter, WBwDS DS Online Support, pmwilson@aol.com

Down Syn list serv, wtm@sheldev.shel.isc-br.com To subscribe, send message to LISTSERV@VM1.NODAK.EDU with a Subject of No Subject and a message of subscribe down-syn You may leave the list at any time by sending a "SIGNOFF DOWN-SYN" command to LISTSERV@VM1.NODAK.EDU Once subscribed you may change your method of reading the list by sending a message 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

World Wide Web: Down Syndrome WWW Home Page http://www.nas.com/downsyn/ >From this page there are links to other DS WWW pages, with information in several languages

National DS Congress email NDSC@charitiesusa.com The NDSC will have a WWW page in late 1995

Tidewater Down Syndrome Association, Virginia http://www.infi.net/~jwheaton/dsnet.html

CHASER (Congenital Heart Anomalies Support, Education & Resources) http://www.csu.edu/~hfmth006/sheri/heart.html myer106@wonder.em.cdc.gov, 75050.2742@compuserve.com

Breastfeeding Advocacy WWW page http://www.clark.net/pub/activist/bfpage/bfpage.html

Japanese DS Group in Japanese or English.
The English version is http://ss.niah.affrc.go.jp/~momotani/dowj1-e.html
The Japanese version is ttp://ss.niah.affrc.go.jp/~momotani/dowj1.html

THE ARC'S HOME PAGE
http://fohnix.metronet.com/~thearc/welcome.html

OurKids WWW Archive: former postings of the Our-Kids listserv (diverse diagnoses)
http://wonder.mit.edu/our-kids.html

Also, the Parents Helping Parents page is
http://www.portal.com/~cbntmkr/php.html

TASH email: tash@tash.org
Executive Director Nancy Weiss nweiss@tash.org

The National Down Syndrome Society will have a WWW page in early 1996.

Dixie Lawrence of Tri-21 is available at DiLeLa@aol.com
Trisomy 21 http://www.downsyndrome.com/trisomy.htm
Nutrichem, makers of msb+: Nutrichem@aol.com
http://fox.nstn.ca/~biddle/Nutri-Chem.html

Your Baby has Down Syndrome video $18 The Mackenzie Sara Noca Charitable Trust 1510 Greendale Drive Pittsburgh, PA 15239 (412) 798-0794

"Count Us In" by Jason Kingsley and Mitchell Levitz. 1994.
ISBN 0-15-622660-x
Harcourt Brace, 465 S. Lincoln Drive, Troy, MO 63379
Phone 1-800-543-1918

BOOK: 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

BOOK: 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

The following books recommended with thanks to LLeshin@aol.com:

_Babies With Down Syndrome, A New Parents' Guide_, ed. by Karen Stray-Gundersen, Woodbine House, ISBN 0-933149-64-6

_Medical & Surgical Care for Children With Down Syndrome, A Guide for Parents_, ed. by D.C. Van Dyke, and P. Mattheis, Woodbine House, ISBN 0-933149-54-9

_Medical Care in Down Syndrome: A Preventative Medicine Approach_, by P.T. Rogers and Mary Coleman, Marcel Dekker, Inc., ISBN 0-8247-8648-X

_Biomedical Concerns in Persons With Down Syndrome_, by S.M. Pueschel and J.K. Pueschel, Paul Brookes Publishing Co., ISBN 1-55766-089-1

_Advances in Down Syndrome_, ed. by Valentine Dmitriev and Patricia Oelwein, Special Child Publications, ISBN 0-87562-092-2

_The Psychobiology of Down Syndrome_, ed. by Lynn Nadel, MIT Press, ISBN 0-262-14043-8

_Teaching the Child with Down Syndrome: A Guide for Parents and Professionals_, by M.J. Hanson, Pro-Ed, ISBN 0-89079-103-1

Recommended by Liz Steele

The Language of Toys: Teaching Communication Skills to Special-Needs Children. A Guide for Parents and Teachers. Sue Schwartz and Joen E. Heller Miller. 1988. Woodbine House, 6510 Bells Mill Road, Bethesda, Maryland 20817. Toll Free USA 1-800-843-7323.

It Takes Two to Talk: A Parent's Guide to Helping Children Communicate. A. Manolson. The Hanen Program. 1992. The Hanen Centre, 252 Bloor Street West, Room 390, Toronto, Ontario, Canada M5S 1V5. ISBN 0-921145-02-0. Ph 416-921-1073.

Teaching Strategies for Children with Down Syndrome: A Resouce Guide (K-6). B. Tien and C. Hall, Editors. Jointly prepared by the PREP Program and the Ups & Downs Assoc. of Calgary, Alberta. Ups & Downs, Calgary Down Syndrome Association, 1001 - 17 Street NW, Calgary, Alberta, Canada T2N 2E5. Ph 403-289-4394. Cost is $15 Canadian.

Stimulating speech and encouraging communication via the use of computers:
Laura Meyers, PhD, 8505 Gulana,
#4103, Playa Del Ray, CA 90293

Love and Learning
Joe and Sue Kotlinski,
P.O. Box 4088, Dearborn, MI 48126-4088
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.

Congenital Heart Anomalies Support, Education & Resources, Inc.
(CHASER)
2112 N. Wilkins Rd
Swanton, OH 43558
(419) 825-5575
myer106@wonder.em.cdc.gov

Peak Parent Center
6055 Lehman Drive
Colorado Springs CO 80918
719- 531-9400
Support and information for parents whose children with DS are integrated in neighborhood and parks department programs for babies and toddlers, neighborhood schools in regular classes; as teens and young adults participate in secondary education programs; and as adults have interesting jobs and commute from their own apartments or supported living arrangements.

Janet Marchese, Director of the National Down Syndrome Adoption Exchange, 914-428-1236

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.

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