Will at 14 months, January 1995WELCOMING CHILDREN WITH DOWN SYNDROME:
[The reason for the following post is found here]
This post contains several long lists of resources. If you do a "find on this page" text search for something specific that you're looking for in this post, it might help (e.g., "Australia" or "Japan" to find DS resources in those countries). If a link is "broken" (doesn't find the right website), copy the URL link, go to http://web.archive.org and paste it into their "WAYBACK MACHINE" search box near the top of the page and click the "Take Me Back" button" to see if it can be viewed in an archived original form, such as this one was for a Japan link.
1. Janet Marchese, Director of A Kids Exchange (formerly the National Down Syndrome Adoption Exchange), 914-428-1236; 56 Midchester, White Plains, NY 10606, and also Pam Wilson, pmwilson@aol.com .
2. "Recommended Down Syndrome Sites on the Internet," Compiled by Len Leshin, MD, FAAP appears to be a good source for winnowing down the thousands of sites offering help/advice on parenting Down Syndrome children.
3. "Chosen People" article by Earl Appleby, who wrote me that, "In the article, Janet Marchese, director of the Down Syndrome Adoption Exchange, which has found loving homes for more than 2,000 such infants, says, 'We have a family for every Down Syndrome child.'
"Another potential resource, mentioned in the article, is Lori Weigle, president of Parents of Children with Down Syndrome, who observes, 'Everyone needs to be accepted for what he is, and if the biological family can't do that, I'm happy to find a home for the child.'" Can't seem to find this group on the web now though there is a local chapter in Virginia, I think.
4. Association for Children with Down Syndrome (ACDS) is a parent-founded early intervention program whose basic premise is that early intervention is critical in the lives of children with Down syndrome.
5. National Association For Down Syndrome (NADS), a not-for-profit organization, was founded in Chicago in 1961 by parents of children with Down syndrome who felt a need to create a better environment and bring about understanding and acceptance of people with Down syndrome.
6. National Down Syndrome Society (NDSS). Telephone: 800-221-4602. A comprehensive, on-line information source about Down syndrome. Through education, research and advocacy, the National Down Syndrome Society works to ensure that all people with Down syndrome have the opportunity to achieve their fullest potential.
7. The ARC of the U.S is the nation's leading national organization on mental retardation. The Arc represents over seven million children and adults with mental retardation and their families. The ARC has over 120,000 members within approximately 1,000 state and local chapters nationwide. The ARC provides organizational support to affiliated chapters, and represents the membership on advocacy and programmatic issues pertaining to mental retardation.
8. By accident, I found this helpful site on Menstuff.
9. Even Google has lists of articles on support groups around the country for parents of Down Syndrome children, although nowadays many articles involve Palin and her family.
10. THIS IS THE ORIGINAL "WELCOMING BABIES WITH DOWN SYNDROME" offering many state, national and international resources to contact. The author, Tracey Finch, appears to also have guest-posted another version of this page here.
Although some links and email addies displayed are no longer valid, there is still much that is of great help. Two examples are www.inclusion.com and Seattle's SibShops, "for Siblings of Kids with Special Health Needs and/or Special Developmental and Learning Needs, including but not limited to: diabetes, cancer, cystic fibrosis, muscular dystrophy and heart, kidney, liver, gastrointestinal or lung disease, autism, cerebral palsy, Down's syndrome, ADHD, and spina bifida":
Children's Sibshops are lively, pedal-to-the-metal, award-winning celebrations of the many contributions made by brothers and sisters of kids with special needs.
Sibshops acknowledge that being the brother or sister of a person with special needs is for some a good thing, others a not-so-good thing, and for many, somewhere in between.
They reflect a belief that brothers and sisters have much to offer one another — if they are given a chance.
That "now-gone "WELCOMING BABIES WITH DS" page has so much information, that I'm just going to reproduce it below as it appears in the last web.archive.org snapshot of it. Please email me with corrections, broken links or new ones to add, and I will make the changes here and also link to this post in our sidebars here and at Abortion Pundit blog:
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WELCOMING BABIES WITH DOWN SYNDROME
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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.
What is 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 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, gardening and travel to baseball, 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.
Types of Down Syndrome
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.
Care of Children with Down Syndrome
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 (see resources section below) for individuals with DS that you may wish to pass on to your child's physician.
Future for Children with Down Syndrome
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.
A Final Note
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.
Down Syndrome Resources
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
The newly updated Health Care Guidelines for Individuals with Down Syndrome (DS Preventive Medical Check list) is also available at the Down Syndrome WWW page, at URL dshm.html
and at the Down Syndrome Quarterly WWW page at URL
http://www.denison.edu/dsq/health96.html
For the Open Window online newsletter, Welcoming Babies with Down Syndrome and/or DS Online Support contact:pmwilson@aol.com
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 Firstname Lastname
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
It is also available as the newsgroup:
bit.listserv.down-syn
World Wide Web: Down Syndrome WWW Home Page
This page has information (translations of several articles into Spanish) and worldwide resources as well as links to other DS WWW pages.
Down Syndrome Health Issues/Dr. Len Leshin's Corner on the SF Bay Area Down Syndrome page
http://ptolemy.eecs.berkeley.edu/~pino/DS/health/index.html
National DS Congress: email to NDSC@charitiesusa.com
http://www.carol.net/~ndsc/
USA telephone 1-800-232-6372
The National Down Syndrome Society
http://www.pcsltd.com/ndss/
USA telephone 1-800-221-4602
The Sibling Support Project's Web site
(with good general references and resources)
http://www.chmc.org/departmt/sibsupp
dmeyer@chmc.org
Tidewater Down Syndrome Association, Virginia
http://www.infi.net/~jwheaton/
COUNT US IN : GROWING UP WITH DOWN SYNDROME
(by Jason Kingsley & Mitchell Levitz)
http://brugold.com/count.html
Disability Solutions (free newsletter)
http://www.teleport.com/~dsolns
9220 SW Barbur Blvd 119-179
Portland Oregon 97219
503/244-7662
email: dsolns@teleport.com
Down Syndrome Quarterly
Denison University, Granville, OH 43023
Subscriptions $24/year (4 issues)
http://www.denison.edu/dsq/
The NADS web page:
http://www.nads.org
Dan's Page
http://members.aol.com/karenl2888/dan.html
Other family WWW pages are
http://www2.pcix.com/~kehler/What'sUp.html
http://www.lanline.com/~rdill/jan1.html
http://w3.one.net/~djgeiser
http://members.aol.com/decummings/private/album/cummings.html
http://www.csun.edu/%7Ehfmth006/chaser/
CHASER (Congenital Heart Anomalies Support, Education & Resources)
myer106@wonder.em.cdc.gov, 75050.2742@compuserve.com
Australian breastfeeding tips page
http://www.vicnet.net.au/vicnet/nmaa/downsynd.htm
Breastfeeding Advocacy WWW page
http://www.clark.net/pub/activist/bfpage/bfpage.html
The Sarah Duffen Centre, University of Portsmouth, UK
http://www.sci.port.ac.uk/~psycwww/sarah.html
Rebecca Stores (sleep disturbance research)
stores@sci2.sci.port.ac.uk
Japanese DS Group in Japanese or English
New URL (English) is:
http://infofarm.cc.affrc.go.jp/~momotani/dowj1-e.html
The Japanese version is
http://ss.niah.affrc.go.jp/~momotani/dowj1.html
German DS WWW pages
http://ourworld.compuserve.com/homepages/B_Schnell
http://www.uni-bremen.de/www.bremen.de/soziales/down1.html
(Information in German language).
French language WWW page
http://ourworld.compuserve.com/homepages/b_schnell
Andrea Friedman article Life Goes On's Amanda
http://www.abilitymagazine.com/ability/text/andreais.htm
Janet Marchese adoption article
http://ptolemy.eecs.berkeley.edu/~pino/DS/news/sjmercury/adoption31596.html
THE ARC'S HOME PAGE
http://TheArc.org/welcome.html
Family Village Project (diverse diagnoses)
http://www.familyvillage.wisc.edu/
Linda Rowley, Family Village Project Coordinator, rowley@waisman.wisc.edu
Alliance for Technology Access (ATA) web site
http://marin.org/npo/ata/
OurKids WWW Archive: former postings of the Our-Kids listserv (diverse diagnoses)
http://wonder.mit.edu/our-kids.html
NICHCY (National Information Center for Children and Youth with Disabilities)
web site: http://www.aed.org/nichcy/
Also, the Parents Helping Parents page is http://www.portal.com/~cbntmkr/php.html
The Inclusion Home Page
http://www.inclusion.com
Institute on Community Integration
http://www.coled.umn.edu/iciwww/
Axis Consultation & Training
http://www.almanac.bc.ca/~axis/
Norman Kunc & Emma Van der Klift
normemma@port.island.net
TASH email: tash@tash.org
Executive Director Nancy Weiss nweiss@tash.org
Your Baby has Down Syndrome video $18 http://www.nb.net/mall/d/MSNCT_order.html 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 *(She has an excellent Newsletter: Communicating Together; PO Box 6395; Columbia, MD 21045-6395 Phone: 410-995-0722; or Fax 410-997-8735) *Before the First Word; by Libby Kumin; Audiotape from the 1995 NDSC convention: $7 per tape plus $4 s/h; from Professional Sound Images, PO Box 920552, Norcross, Georgia; 30092; 1-800-808-8273
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
Down Syndrome Quarterly Editor: Samuel J Thios, PhD, thios@denison.edu 614-587-6338 Fax 614-587-6417 Denison University; Granville, OH 43023
Hope for the Families: New Directions for Parents by Robert Perske; illustrated by Martha Perske ISBN 0-687-17380 Abingdon Press
Down Syndrome: Living and Learning in the Community; edited by Lynn Nadel and Donna Rosenthal; NDSS; Proceedings of the Fifth International DS Conference held in Orlando FL in 1993; C 1995 Wiley-Lisss Inc ISBN 0-471-02201 pbk; 0471-02192-x hardback
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 Resource 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 (313-581-8436) 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. They have community education resources for building inclusive programs.
Janet Marchese, Director of A Kids Exchange (formerly the National Down Syndrome Adoption Exchange), 914-428-1236; 56 Midchester White Plains , NY 10606 (914) 428-1236; Pam Wilson, pmwilson@aol.com
ABOUT THE "WELCOMING BABIES WITH DOWN SYNDROME" SITE:
Beginnings of the DS WWW PageMOST OF THE ABOVE IS THE COPYRIGHT 1995-2008 OF TRACEY FINCH. All Rights Reserved. tjf 20021125.
This is the original World Wide Web site composed of contributions from experienced professionals and knowledgeable parents who are subscribers to the Down Syndrome listserv and newsgroup, by the parents of a wonderful son who was diagnosed with Down Syndrome at birth in 1993.
They researched the best information available at that time and discovered that it was difficult to find the most up to date resources, support and information available even with internet connections. Discovering the veteran parents and knowledgeable professionals on the Down Syndrome listserv made a significant difference in the opportunities and support they provided for their charming little boy.
They felt it would be worthwhile to create a Down Syndrome WWW page for others who want all the best for loved ones born with Down Syndrome around the world. The response to this suggestion on the Down-Syn listserv/newsgroup was very positive and the Down Syndrome WWW page was created in February of 1995.
The Down Syndrome newsgroup is read by people from around the world, although the majority of subscribers to the listserv reside within the United States. For this reason, American and world-wide resources and links are available from the Down Syndrome WWW page. Translations of some articles are available in the following languages (as of 2/97): Spanish, Chinese and French.
Will at 14 months, January 1995
In Europe the term (in English) that is used for the condition is Down's Syndrome, in America the correct term is Down Syndrome. This is reflected in the writings from family members and concerned professionals who have been working with individuals with Down Syndrome throughout the world. Multi-cultural perspectives from families and professionals of diverse ethnic and cultural backgrounds are welcome and respected.
The dignity of individuals with Down Syndrome is important, so people first language is encouraged. We assume that people with Down Syndrome will read the articles and information on this site and especially welcome their comments, contributions, and insights.
Subscribers to the Down Syndrome list serv are sensitive to the families raising children who have health problems and additional diagnoses that create greater challenges than Down Syndrome alone creates for most of our sons and daughters.
Some babies and children with Down Syndrome struggle throughout early childhood and later seem to bloom almost effortlessly; others blossom early and continue to make great strides throughout their lifetimes; some struggle their whole lives in certain areas no matter how hard they work or how diligently we encourage them. We believe each person with Downs Syndrome will contribute to the general good of society as a valuable member of their family and community.
We are dedicated to spreading accurate and up-to-date research information and educating the general public about the accomplishments of children and adults with Down Syndrome who have had access to the opportunities and small accommodations they need to reach their potential.
Often parents, siblings, extended family members, friends and neighbors may be surprised and confused upon hearing a newborn has been diagnosed with Down Syndrome, but then come to terms with both their own misinformation and outdated ideas while they get to know the person growing up. In similar ways, mainstream educators, peewee sports league coaches, scout leaders and recreation instructors may be surprised to discover a child enrolled in their program has Down Syndrome and seeks information and resources to help them welcome and support every child they serve.
We would like to assist in diminishing the time it takes to get past the diagnosis and into understanding that Down Syndrome is a small (though significant) part of who that individual is and can be.
Thousands of others around the world share in the initial surprise and uncertainty that often accompanies hearing the diagnosis of Down Syndrome and have overcome the obstacles we face in creating an inclusive community that will support people with developmental disabilities as well as nda (not diagnosed with anything) folks who want to enjoy the best we have to offer one another. It has been a joyful, difficult, funny and very interesting journey for all of us who travel this road, and we welcome every person who is just beginning with a first step.
We want this site to be welcoming, helpful, and enlightening to the entire diverse online community browsing the World Wide Web.
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A somewhat updated version of that list follows:
For information on Mosaic DS (where only some cells have Trisomy 21), contact:
Dr. Colleen Jackson-Cook
Department of Human Genetics
Virginia Commonwealth University
P.O. Box 980033
Richmond, VA 23298-0033
Telephone: 804-828-9632
Fax: 804-828-3760
Email: JACKSON@GEMS.VCU.EDU
For more information, resources, and support, you may wish to consult the following resources:
Publications and Tapes
Disability Solutions. A free newsletter about Down Syndrome available in print as well as online.
URL: http://www.teleport.com/~dsolns/
Email: dsolns@teleport.com
Your Baby Has Down Syndrome video. $15 per video plus $3.00 shipping /handling.
Down Syndrome Center
Children's Hospital of Pittsburgh
3705 Fifth Ave.
Pittsburgh, PA 15213
Telephone: 412-692-7963
Fax: 412-692-7428
Email: cannons@chplink.chp.edu
Babies with Down Syndrome, A New Parents' Guide, edited by Karen Stray-Gundersen
Woodbine House. ISBN 0-933149-64-6.
Understanding Down Syndrome: An Introduction for Parents, by Cliff Cunningham. American Edition. 1996. ISBN 1-57129-009-5.
Brookline Books
Telephone: 800-666-2665
Email: BROOKLINEBKS@delphi.com
Communication Skills in Children with Down Syndrome: A Guide for Parents, by Libby Kumin. ISBN 0-933149-53-0.
Woodbine House
Telephone: 800-843-7323
Communicating Together Newsletter, edited by Libby Kumin.
Telephone: 410-995-0722
Fax: 410-997-8735
Before the First Word, by Libby Kumin. Audiotape from the 1995 NDSC convention: $7 per tape plus $4 s/h.
Professional Sound Images
Telephone: 800-808-8273
Teaching Reading to Children with Down Syndrome, A Guide for Parents and Teachers, by Patricia Logan Oelwein. ISBN 0-933149-55-7.
Down Syndrome Quarterly Newsletter, edited by Samuel J Thios, PhD. Subscriptions: $24/year (4 issues).
Telephone: 614-587-6338
Fax: 614-587-6417
URL: http://www.denison.edu/dsq/
Email: thios@denison.edu
Count Us In, by Jason Kingsley and Mitchell Levitz. 1994. Harcourt Brace. ISBN 0-15-622660-x.
Hope for the Families: New Directions for Parents, by Robert Perske; illustrated by Martha Perske. Abingdon Press. ISBN 0-687-17380.
Down Syndrome: Living and Learning in the Community, edited by Lynn Nadel and Donna Rosenthal; NDSS; Proceedings of the Fifth International DS Conference held in Orlando, FL, in 1993; copyright 1995 by Wiley-Lisss Inc. ISBN 0-471-02201.
Teaching Strategies for Children with Down Syndrome: A Resource Guide (K-6), edited by B. Tien and C. Hall. Jointly prepared by the PREP Program and the Ups & Downs Association of Calgary, Alberta. Calgary Down Syndrome Association.
Teaching the Child with Down Syndrome: A Guide for Parents and Professionals, by M.J. Hanson. Pro-Ed. ISBN 0-89079-103-1.
The Language of Toys: Teaching Communication Skills to Special-Needs Children. A Guide for Parents and Teachers, by Sue Schwartz and Joen E. Heller Miller. 1988. Woodbine House.
It Takes Two to Talk: A Parent's Guide to Helping Children Communicate, by A. Manolson. 1992. The Hanen Program.
Medical and Surgical Care for Children with Down Syndrome, A Guide for Parents, edited 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, edited by Valentine Dmitriev and Patricia Oelwein. Special Child Publications. ISBN 0-87562-092-2.
The Psychobiology of Down Syndrome, edited by Lynn Nadel. MIT Press. ISBN 0-262-14043-8.
The Development of Language and Reading Skills in Children with Down Syndrome, by Susan Buckley. 1986. Portsmouth Polytechnic.
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Internet Resources
The Sibling Support Project
URL: http://www.chmc.org/departmt/sibsupp/
Email: dmeyer@chmc.org
National Down Syndrome Congress
URL: http://members.carol.net/~ndsc/
Email: NDSC@charitiesusa.com
The National Down Syndrome Society
URL: http://www.ndss.org/
Email: info@ndss.org
National Association for Down Syndrome (NADS)
URL: http://www.nads.org/
What's Up with Down Syndrome
URL: http://idt.net/~kehler/What'sUp.html
Down Syndrome Quarterly
URL: http://www.denison.edu/dsq/
Includes the newly updated Health Care Guidelines for Individuals with Down Syndrome
(DS Preventive Medical Check List)
URL: http://www.denison.edu/dsq/health96.html
Down Syndrome Health Issues
URL: http://www.davlin.net/users/lleshin/
Down Syn On-Line Magazine
URL: http://www.epix.net/~mcross/down-syn.html
Down Syndrome associations in Western Australia
URL: http://www.museum.wa.gov.au/downs/
Email: gothard@socs.murdoch.edu.au
Email: dsawa@upnaway.com
Down Syndrome Home Page
URL: http://www.nas.com/downsyn/
Welcoming Babies with Down Syndrome
URL: http://www.nas.com/downsyn/welcome.html
Also available in:
Spanish: Bienvenidos Bebes con Sindrome de Down
URL: http://www.nas.com/downsyn/wbsp.html
French: Accueillir les bebe trisomiques
URL: http://www.nas.com/downsyn/frwds.html
Japanese:
URL: http://infofarm.cc.affrc.go.jp/~momotani/welbaby.html
Down Syndrome Information for the United Kingdom
URL: http://ep.open.ac.uk/wgma/Chris/UKDSinfo.html
What's Up with Down's -- Home Page of a teenage boy with Down Syndrome
URL: http://members.aol.com/karenl2888/dan.html
Down Syndrome Health Issues
URL: http://www.davlin.net/users/lleshin/
Down Syndrome: Teaching Reading and Language
URL: http://www.concentric.net/~Lovlearn/
Australian breastfeeding tips page
URL: http://avoca.vicnet.net.au/~nmaa/bfinfo/down.html
Breastfeeding Advocacy Web page
URL: http://www.clark.net/pub/activist/bfpage/bfpage.html
Family Village Project
URL: http://www.familyvillage.wisc.edu:8000/lib_down.htm
Thoughts from the Middle of the Night
URL: http://rdz.stjohns.edu/lists/our-kids/Archives/TFtMotN.html
Children with Diabetes Web page (DS)
URL: http://www.castleweb.com/diabetes/d_03_193.htm
Dusty Dutton--Home Page of a young woman with Down Syndrome
URL: http://www.microweb.com/ddutton/dustyd.html
Down Syndrome Association of Metropolitan Toronto
URL: http://www.dsamt.toronto.on.ca/
OurKids Web Archive: former postings of the Our-Kids listserv (diverse diagnoses)
URL: http://maelstrom.stjohns.edu/archives/our-kids.html
National Information Center for Children and Youth with Disabilities (NICHCY) Web site:
URL: http://www.nichcy.org/
PREP Resource Center (Calgary, Alberta, Canada)
URL: http://www.cadvision.com/prepprog/
Email: winklerj@cadvision.com
San Francisco Bay Area Down Syndrome page
URL: http://ptolemy.eecs.berkeley.edu/~pino/DS/
Inclusion Press International Home Page
URL: http://www.inclusion.com
Institute on Community Integration -- University of Minnesota
URL: http://www.ici.coled.umn.edu/ici/
TASH: Working in Partnership with Disability Advocates Worldwide
URL: http://www.tash.org/
The Alliance for Technology Access
URL: http://www.ataccess.org
Center for Studies on Inclusive Education -- United Kingdom
URL: http://inclusion.uwe.ac.uk/csie/csiehome.htm
Family Village School Inclusive Education Resources
URL: http://laran.waisman.wisc.edu/fv/www/education/inclusion.html
Agassiz Elementary School -- Chicago, Illinois
Inclusion Digest
URL: http://members.aol.com/AInclusion/index.html
Down Syndrome Educational Trust (DownsEd) -- United Kingdom
URL: http://www.downsnet.org/downsed/
Dolls with Down Syndrome -- USA
URL: http://www.dollsbyjerri.com/dolls.htm
Dolls with Down Syndrome -- Germany
URL: http://uni-bremen.de/~downsyn/down23e.html
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Online Discussion List
Down-Syn listserv. To subscribe, send an email message to LISTSERV@LISTSERV.NODAK.EDU with no subject in the subject line and the message "subscribe down-syn." Respond OK to the confirmation message.
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Credits
Special thanks to Dr. Len Leshin and Liz Steele for suggestions of book titles.
Published monthly by the ERIC Clearinghouse on Elementary and Early Childhood Education, University of Illinois at Urbana-Champaign, Children's Research Center, 51 Gerty Drive, Champaign, IL 61820-7469. This publication was funded by the Office of Educational Research and Improvement, U.S. Department of Education, under contract no. DERR93002007. Opinions expressed in this magazine do not necessarily reflect the positions or policies of the Department of Education.
NPIN Coordinator and Parent News Editor: Anne Robertson
Production Editor: Emily S. Van Hyning
Other HT: Earl Appleby, Director of Citizens United Resisting Euthanasia (CURE).
posted by Annie at 7:06 AM
