On Saturday, September 9, 1995. there was a statewide conference entitled Aging with Down Syndrome held at the University of Washington. The purpose of the conference was to address medical and social concerns of adults who have Down syndrome; provide an opportunity for adults with Down syndrome to meet together, receive information, and discuss adult living issues; provide an opportunity for those who care about people with Down syndrome to discuss issues of adult living and aging; and, provide information about the Aging with Down Syndrome Clinic and other resources.
Approximately 250 people, 53 of whom were adults with Down syndrome, attended the one day information conference for personal growth. Some of the general topics and pre-senters included:
The Down Syndrome Community infant and toddler group got its start in August, 1994, when several families attended the University of Washington conference on Down syndrome hoping to connect with other parents of newborns. Realizing our babies were all born within a few weeks of each other, we decided to start meeting to give each other support and encouragement during those early months. It's hard to believe that was a year ago. Through referrals from Amy Jahn and many other sources, the group has continued to grow as a special focus group within the larger context of the DSC. The mailing list now contains approximately twenty interested families.
The group had several social events during the summer. Anyone who plays a role in the life and care of a young child with Down syndrome such as siblings, extended families and friends, is welcome. We continue to plan informal get-togethers, usually every other month, and would enjoy hearing from others who would like to be involved. Please call Ramona Gillett at 487-9648 or JoAnne Thelin at 431-9777 for information on future events.
The next scheduled get-together is at Charles and Diane Mumma's on October 13. Call the Mummas at 523-3804 for information and directions.
Many families enjoyed our yearly outing at Camp Prime Time again this year. We'd like to thank all the volunteers who donate their time and energy to provide this lovely respite for us. Thanks to Jeff Raefield and Sheila Westphal for organizing again. Thank you, also, to Irene Stanford and Sheila Westphal who put together a collage of photographs of our kids enjoying the activities at Camp Prime Time over the years to be left at the camp.
Camp Prime Time has several fund-raisers throughout the year to help fund the 12-15 weekends throughout the summer. They will be holding a Prime Time Banquet and Auction at the Red Lion in Yakima on October 21, 1995. If anyone has an item they might be able to donate for the auction or would like more information, please contact George or Maggie Justice (509/697-3122) or the Camp Director, Norman Anderson (509/452-5391).
Every year we have a pot luck to celebrate the holiday season. This is our biggest event of the year. Santa visits with presents, our children decorate the tree and we all eat too much. It is a great time to meet with each other, compare stories about our kids and have fun. This year, Ed Dirkes, one of the guitarists from Camp Prime Time has offered to play carols for the party. What a treat !!
We need a Holiday Party Chairperson to help organize the event with the help of six volunteers. The group will pick a date and a place (the Good Neighbor Center in Renton for the last few years) and plan event activities. It will probably involve approximately five (5) hours of your time plus the day of the party.
We need (6) Holiday Party Volunteers to help the chair-person with planning, plus help out on the day of the party.
Any one interested in helping out please call Jane Hall at 881-6143. Jane and Jeff Hall have chaired this event the last two years. They'll be happy to assist someone in organizing this year's.
Sibshops give brothers and sisters a chance to meet each other, talk, learn and have fun. Directed by Don Meyer, it is sponsored by the Sibling Support Project at Children's Hospital, Arc of King County, UW's EEU and Seattle Public schools. For more information about Sibshops, call 368-4911.
James May founded a local support group which has grown into the National Father's Network. An estimated 90 fathers of children with disabilities are involved. It is coordinated through the Kindering Center in Bellevue (206/747-4004).
I agreed to take on the newsletter when Amy resigned. It's some-thing I really enjoy doing but without a computer to work on at home it puts a real strain on my time. If there is anyone else who might be able to assist, either by writing articles, researching or in any other capacity, I would welcome the assistance, OR I will gladly turn over this job, along with my sample disk, to a willing volunteer. Please give me a call at 241-0353. -- Linda Michael
Aging with Down Syndrome Clinic
By late last year, a clinic designed specifically for older patients with Down syndrome was offered through the CDMRC at the University of Washington. Approx-imately 60 families who are potential participants in the clinic have been contacted through the CDMRC's Down Syndrome Program, which maintains a data base of people interested in participating in research related to aging and Down syndrome. Patients who are oldest and exhibit the most severe Alzheimer's symptoms will be seen first.
Patients will undergo a variety of tests designed to rule out other health conditions that can mimic Alzheimer's disease. Testing for Alzheimer's symptoms will involve creating new evaluation methods specifically geared to the Down syndrome population.
For information about the new clinic, call Doug Cook, Principal Investigator, Aging with Down Syndrome Clinic, at 685-1280.
(Excerpted from an article in the Fall 1994 CDMRC Outlook)
Feeding Clinic at CDMRC
The Feeding Clinic was begun in 1991 to provide comprehensive evaluations of infants and children with developmental delays whose feeding, nutrition, or mealtime behaviors are a concern to parents or caregivers. Most families who come to the clinic have had long-term concerns about feeding, says Betty Lucas, a CDMRC nutritionist and head of the Feeding Clinic.
The clinic team includes a nutritionist, occupational therapist, clinical nurse specialist and developmental pediatrician. Lucas says the team is committed to working closely with parents, teachers, and others already involved with the child.
The clinic is conducted once a month. The process usually involves a pediatric exam, a pre-clinic discussion by the team, a team observation of the child and family during a feeding, an interview with parents or other caregivers, and a parent conference. For more information, contact Betty Lucas at 685-1289.
(Excerpted from an article in the Fall 1994 CDMRC Outlook)
Several members of the Down Syndrome Community were featured on a recent Northwest Afternoon. Those interviewed included Julie Hauf and her son, Daniel; Amy Jahn and son, Michael; Jeff and Jane Hall and son, Matthew. There were also short interviews with Linda Kappes and her son, William, as well as others.
Jody Reimer of Federal Way and her son, Kellen were highlighted on KOMO News Television, Channel 4. Linda Michael was interviewed by KIRO News Radio.
The Down Syndrome Community has been warmly welcomed by the nursing staff at Swedish, Northwest and Valley Hospitals. Our presentation, "Parent's Perspectives of the Birth of Children with Special Needs" includes a video, a ten page hand-out and discussion. We have all been learning a lot. Many thanks to those of you who helped with your time and energy: Sheila Westphal, Jane Hall, Ramona Gilllett, Marsha McAllister, Kathy Hilde and Muff Hefernan.
The March of Dimes provided a $500 grant to help us finance the Hospital Outreach Program. A BIG THANK YOU to them for their support!
UNCOMMON FATHERS: Reflections on Raising a Child with a Disability edited by Don Meyer, Woodbine House (6510 Bells Mills Rd., Bethesda, MD 20817; 800/843-7323)
The editor, Don Meyer, invited fathers to share their deepest feelings in an effort to connect with other fathers of children with disabilities. The essays include several by fathers whose children have Down syndrome. According to a review in the April 1995 Down Syndrome News and also one in good GROWING, the Children's Hospital newsletter, this book deserves to be read by a wide audience of family members and professionals.
Request for Stories
Hello Siblings!
I'm writing a book and I could use your input. It is a collection of positive, inspiring stories about an experience, situation, memory, etc., you and your handicapped sibling have shared. It can be comical or poignant, just as long as it is positive.
My hope is that this will illustrate to families that when a child is born with Down syndrome or another handicapping condition, it is not a time to grieve. Rather, it is a time to bond together with family and friends, a time of hope, a time to learn that every individual has value and a unique contribution to make to both the family and society in general.
Please send your story and a picture of you and your sibling together to : Julie Picatti, 5314 Bitterroot Way, Yakima, WA 98909.
Thanks!
ESpecial Update
eSpecial is a clothing company committed to supplying clothing to individuals with Down syndrome and others with similar clothing needs. The clothing is specially proportioned and includes features that make them easier to wear. They have recently expanded their line of blue jeans to include casual slacks, shirts and blouses, shorts and dresses. Call them at 415/ 924-7690 for a brochure and ordering information.
(Reprinted from Down Syndrome Association of San Diego newsletter, Summer 1995.)
Inclusion Study
Volunteer families are being sought by the National Down Syndrome Society for participation in a study of children with Down syndrome in regular classrooms. The study is being conducted by Gloria Wolpert, Ed.D. for the National Down Syndrome Society. Dr. Wolpert has a background in early and special education and a long-term interest in the education of children with Down syndrome. For more information contact Laura Wagman, N.D.S.S. 1-800-221-4602.
(Reprinted from Down Syndrome Association of San Diego newsletter, Summer 1995.)
Beautiful Faces 1996
The calendar, Beautiful Faces, which features close-up photos of fourteen children with Down syndrome is available again this year. The 1996 edition shows the children "in the joyous activities of childhood and adolescence." Calendars are $9.95 each and are available through Beautiful Faces, 134 W. University, Suite 310, Rochester, MI 48307 or can be ordered by credit card at 1-800-96FACES, (1-800-963-2237) or FAX (810) 377-0206.
October - National Down Syndrome Awareness Month
Don't forget that October is National Down Syndrome Awareness Month. Do something in your community. Be creative.
President Amy Jahn 206/228-2385
Vice President Jane Hall 206/881-6143
Vice President Linda Michael 206/241-0353
Treasurer Kirk Gillett 206/487-9648
Telephone Tree Chair Rajeev Lonkar 206/362-5963
Camp Prime Time Jeff Raefield 206/547-6191
Membership Jane Hall 206/881-6143
Hospital Outreach Amy Jahn 206/228-2385
Newsletter Editor Linda Michael 206/241-0353
New Parents Network Ramona Gillett 206/487-9648
New Parents Network JoAnne Thelin 206/431-9777
Board Members Nick & Linda Kappes 206/527-2496
Board Member Paula Haines 206/524-0844
Board Members Rajeev & Mongala Lonkar 206/362-5963
Board Member Jeff Hall 206/881-6143
Board Member Dick Jahn 206/228-2385
Having just been introduced to the Internet thanks to a co-worker who generously shares his link, I'd like to share a few of the items of interest I've discovered.
There are several different ways to use the Internet. One of these is to subscribe to a list service such as the one dedicated to the issue of Down syndrome.
To send a message TO the subscribers to the list, send your message to DOWN-SYN@vm1.nodak.edu
So far all I've done is to read the messages and discussions which others have posted to the list. A variety of subjects are brought up for discussion. Some may draw a large response, others none at all. Sometimes it feels like a big family gathering with lots of dialogue, and just like in a family it is not always pleasant. When you sign on you can post a message to the group (the list) or respond to individuals.
If you have a web browser (provides access to the World Wide Web), the following addresses may be of interest:
DS WWW HOME PAGE
THE ARC'S HOME PAGE
DS FAMILY EMPOWERMENT
SAN FRANCISCO BAY AREA DS PAGE
CENTRAL FLORIDA DS ASSOCIATION
GOLD COAST DOWN SYNDROME HOME PAGE
TIDEWATER DS ASSOCIATION
ASSOCIATION FOR CHILDREN WITH DS
INTERNATIONAL DS PAGES, JAPAN DS NETWORK
PACIFIC NORTHWEST UPSIDE! SOCIETY WEB PAGE
These addresses were broadcast on the Down syndrome list. There are additional sites which do not pertain to Down syndrome but look like they are good sites nonetheless. Please contact me if you'd like their addresses.
October 13 - Moms and Babies Night - Diane Mumma's House - Call 523-3804
October 14 - Board Meeting - Nick and Linda Kappes - 527-2496
November ? - Someone needs to plan a social event. Call Amy Jahn 228-2385 if you can host an event.
December 10 - Holiday Party - 3:00 p.m. - 6:00 p.m. - Good Neighbor Center - 305 S 43rd, Renton
If you have any ideas for events you'd like to see in the coming year, please contact Amy Jahn at 228-2385, jane Hall at 881-6143 or Linda Michael at 241-0353.
The Down Syndrome Community membership year is from September to August. It is time to renew your membership for 1995/96. All membership fees are used to help defray the cost of publishing the newsletter and sponsoring social events. Please send your dues to The Down SyndromeCommunity, c/o Kirk Gillett, 10415 180th St. SE, Snohomish, WA 98290.
YES, I want to be a member of the Down Syndrome Community. (Your check helps defray the cost of publishing the newsletter and sponsoring social events.)
Enclosed is my check for ______ $15.00 ______ Other
I cannot help financially, but keep me on the mailing list.
Name: ____________________
Cut out and send to Kirk Gillett, 10415 180th St. SE, Snohomish, WA 98290
Make checks payable to Down Syndrome Community.
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To subscribe, send the message: SUBSCRIBE DOWN-SYN
http://www.nas.com/downsyn
http://www.metronet.com/~thearc/welcome.html
http://wvlink.mpl.com/users/casten_t/downsyn1.html
Includes a link to the NDSS
http://ptolemy.eecs.berkeley.edu/~pino/DS/index.html
Includes links to a large number of DS informational sites.
http://www.sundial.net/~mwinwood/cfdsa/cfdsa.htm
http://www.gate.net/~sbonsett/gcds/gcds_hme.htm
http:/www.infi.net/~jwheaton/tdsahome.html
http://www.macroserve.com/acds/acdshome.htm
http://ss.niah.affrc.go.jp/~momotani/dowj1-e.html
http://www.telebyte.com/upside/upside.html
CALENDAR OF EVENTS
MEMBERSHIP DRIVE
Address: ____________________
Phone: ____________________
Child with DS & birth date: ____________________