THE VIRGINIAN-PILOT
Copyright (c) 1996, Landmark Communications, Inc.
DATE: Friday, October 11, 1996 TAG: 9610100155
SECTION: VIRGINIA BEACH BEACON PAGE: 10 EDITION: FINAL
TYPE: COVER STORY
SOURCE: BY PAM STARR, STAFF WRITER
LENGTH: 160 lines
ONE EVENING last year, a group of parents sat around Joan Blind's kitchen table, brainstorming ideas for a poster project.
The parents, who all have children with Down syndrome, were trying to come up with something that would capture people's attention about the chromosomal disorder in a positive light.
What they eventually came up with not only caught the eye of local folks but also the board of the National Down Syndrome Congress. The congress, an informational clearinghouse on Down syndrome and political advocate for those affected with the disorder, recently singled out the Tidewater Down Syndrome Association as National Parent Group of the Year.
Dru Barbee, a staff member with the national congress, said the local association was chosen out of more than 500 other parent groups across the country because it is an ``extremely active'' parent group.
``They are on the cutting edge of everything,'' said Barbee. ``They have a wonderful newsletter, are very much on the ball and in there politically.
``They published some wonderful posters, some of the best we've ever seen,'' she added. ``We do recommend that poster to a lot of people who are looking for one.''
The poster project was especially gratifying for the local group. An advertising agency had been contacted about creating a poster beforehand, but wanted too much money. It was up to the parents, who only had their time and personal experiences.
As it turned out, that was enough.
When they first sat down, the parents decided they absolutely did not want something overly sentimental or pitying.
They wanted it to show their kids as children first, their disability second. They wanted to show their children as doing everything other kids do, only a little slower, perhaps, and a little differently.
That evening, after several phrases had been considered and tossed out, THE sentence suddenly popped into Mary Wilt's head: ``Friends Don't Count Chromosomes.''
Everyone loved it. They discussed a few more details and within the hour had their poster. Two local boys, one with Down syndrome and one without, sit together on a pier, fishing. The caption underneath describes how both boys like and do the same things.
The poster, and a similar one for this year featuring two local girls standing in front of their lockers, became an instant success. People from every state and several countries have ordered them. Blind (pronounced ``blend''), president of the local association, is thrilled by the response. Walk into most schools in the area and you can find one of the posters.
``We've had calls from Australia, Nova Scotia, Iceland and Russia,'' she said. ``Everybody loves the `Friends' theme. It's a very simple poster, but effective.
``Next year we hope to have adults featured in the workplace.''
Each step brings the parents closer to one of their goals - getting their message out into public places and increasing the public's awareness of Down syndrome.
The Tidewater Down Syndrome Association has grown from its inception in 1980 from a handful to more than 60 active members. Seven hundred people receive its monthly newsletter. Nancy McCullough and Lynnette Regan founded the group after both gave birth that year to boys with Down syndrome and found nothing available for support or education.
So they started the Tidewater chapter.
``The purpose was to get together and talk about specific problems and concerns,'' Regan said. Her son, Jeff, now 16, is a 10th-grader in regular classes at Kempsville High School. ``The group has grown tremendously. It's really exciting to see the things that are being done.''
The poster project is but a small piece of the association's pie. Described by Blind as a support, education and advocacy group, it acts as a lifeline for parents who are often devastated by a doctor's diagnosis of Down syndrome.
Blind, a remedial reading teacher at St. Matthews School, said that parents are often overwhelmed by their feelings. She and her husband, Ed, have an 8-year-old daughter with Down syndrome and two older children.
``I remember thinking in the hospital, `I'll never be happy again,' '' said Blind, a dynamic leader who is so excited about the group that she rarely pauses while speaking. ``You feel this loss of control. I kind of plunged right in, but I was very sad. It took about six weeks for me to accept (the diagnosis).''
Pam and Joe Rhea have a 2 1/2-year-old, Rachel, with Down syndrome and two older children, Jessica, 12, and Adam, 10. Pam Rhea said that she never dreamed she would have a child with Down syndrome but the advantages outweigh the disadvantages.
``The other two do real good with her,'' said Rhea. ``In fact, Jessica is the girl in the poster with Page (Powell, who has Down syndrome). She's a friend of Page's.''
Since every parent in the group has a story to tell, they decided to cull them all together in a booklet called ``Stories from the Heart.'' Published this year, the booklet is included in the new baby packets given to other parents and has been very well-received, said Blind.
`` `Stories from the Heart' validates the feelings that new parents have,'' she said.
Another project that surely helped the local association garner votes for the award is ``To Russia With Love,'' a new parents video the group translated into Russian and sends along with other translated materials on Down syndrome to Russia.
``They still think of people with Down syndrome as damaged genetic material,'' Blind said grimly. ``And that's hard to hear.''
The association also holds a new moms get-together five times a year, which serves as an informal support group. It publishes a monthly newsletter, an ``umbilical cord'' for some 700 parents. Regular meetings are held the third Thursday of every month and attract about 45 members.
Dr. Thomas Montgomery, director of developmental disabilities at Eastern Virginia Medical School and Children's Hospital of The King's Daughters, is on the medical advisory board of the association and speaks at the meetings. He also won the President's Award this year from the national congress for his advocacy of people with disabilities.
``This group has taught me a lot - they've really been amazing,'' said Montgomery, who has been dealing with Down syndrome as a subspecialist for 16 years. ``I think it's pretty phenomenal that they won this award. They put on a medical symposium last year which was incredibly successful. Joan has done just a tremendous job as president.''
Blind brushed off the compliment. Everyone in the group works together and deserves just as much credit for the award, she said. She's looking ahead to next year and the future for the local group. Blind will be speaking on disability awareness at an area elementary school on Oct. 18.
``One of our goals is to have a paid staff member, which would really help,'' said Blind. ``And I would like to have a disability awareness program in every school. It makes children more sensitive to children with differences and focuses on the likenesses.''
Lynnette Regan is in a different situation than many other members. As her son ages, his needs have changed. Regan doesn't feel comfortable taking Jeff to a pediatrician anymore.
``I'm very interested in getting a clinic for young people and adults with Down syndrome,'' she said. ``I don't want my son to go to a pediatrician when he's 30 years old. I'm hoping to get someone who specializes in it.''
Blind unrolled the two posters at a recent get-together at her Kempsville home and spoke enthusiastically about the children pictured. The one boy with Down syndrome has moved away from the area but the girl, Page Powell, still lives here.
``Our children are so much more normal than not normal,'' she said. ``In general, our children have qualities that the world can use more of.'' MEMO: The Tidewater Down Syndrome Association meets on the third
Thursday of every month at the Children's Neuro-Muscular Developmental
Center at The Children's Hospital of The King's Daughters. For more
information, call the Tidewater Down Syndrome Association at 479-3713 or
Joan Blind at 479-1756. ILLUSTRATION: Staff photos including color cover by CHARLIE MEADS
Rachel Rhea, a 2 1\2-year-old child with Down syndrome, is the
daughter of Pam and Joe Rhea, who are members of the Tidewater Down
Syndrome Association.
Such members of the Tidewater Down Syndrome Association as (from
left): Mary Wilt; Lynnette Regan, founder; Joan Blind, President;
and Jamie Todd gathered at Blind's home to celebrate the group's
recognition as the National Parent Group of the Year. The poster
project was especially gratifying for the local group.
Dru Barbee, a staff member with the National Down Syndrome Congress,
called the posters ``some of the best we've ever seen.'' She said
the local group is ``on the cutting edge of everything.''
Katie Blind, left, 8, and Emily Wilt, 6, watch cartoons at Katie's
house. The parents' group says their children do everything other
kids do, only a little slower, perhaps, and a little differently. by CNB