July 2002 Issue

Our group will start meeting every other month. Our next meeting will be at Alfonzo's Pizzeria, 288-5701, #2 Schiber Court in Maryville, on 159 (North Center Street), turn east on Vadalabene Drive, the restaurant is on the right, before Anderson Hospital, on Saturday August 3^rd at 2:00 p.m.

The following meetings will be October 4^th and December 6^th at 6:30 p.m. at the Saint Anthony's Wellness Center in the Alton Square Mall. For driving directions call the Wellness Center at 462-2222.
We encourage all members to attend the DSAGSL 2002 Buddy Walk on Sunday, September 22^nd.

We extend our deep gratitude to Trish Vaughn and the William M. BeDell Achievement and Resource Center who have underwritten the postage, photocopying and distribution of our newsletter, since it's inception four years ago, but are unable to continue due to state of Illinois Early Intervention budget cuts.

Donna Biffar, of Smithton, IL has published a book of poetry "Down: Poems and Other Syndromes." Reprinted is an article from the Belleville News-Democrat Sunday Magazine and the following review by Sam Smith, editor of the British magazine, The Journal:
Throughout this pamphlet, starting with the dedication — 'for Mike/a boy born with Down Syndrome' — Donna Biffar takes care that we see beyond the condition to the person. Where a lesser poet might depend on sentiment to win our sympathy, Donna Biffar relies on language alone to tell how it is/was to be Mike and Mike's mother. '...He struggles, groping for his words, as I do in poetry, unfamiliar/ with the language, the customs of the natives.'

This pamphlet, though, is no disguised apologia for being who they are, rather it is an examination/celebration of their conjoined existence, of both their battles, not only for his life, but to make meaning of all life, and of their struggles to express both their limited understandings. She recounts the difficulties and pitfalls of trying to explain the obvious to her son, and tells of his poetic understandings. There are poems of social reactions — some, as expected in redneck country — despicable. Let not your response of appalled sympathy, however, have you reaching into your pocket to show solidarity with the great diverse. No, if you're going to buy this pamphlet, get it for the outstanding poetry.

Enclosed is the brochure Dental Care for Children with Special Needs from the Alhambra Grotto of North America. The program is designed to provide the necessary funds toward improvement in the oral health status of special needs children under the age of 18 year. The parents select a dentist of their choice and the program, which is always the secondary carrier, works directly with the dental office to process the claim and issue payment. For additional information contact: Frank J. Buchholz, Jr., Office: (314) 553-4246. Home: (314) 921-3737. E-mail: fbucholz@seistl.com.

STARNet Region IV

July 23, 9:00 a.m. - 3:00 p.m. Multi-Sensory Activities for Pre-School Children. This workshop will present the collaborative experience and work a pre-school teacher and a physical therapist in the development of multi-sensory activities for inclusive pre-school classrooms. Through videotapes, slides and hands-on materials, participants will discover the rich variety of media that can be utilized to enhance and challenge the learning of both children who are typically developing and children with special needs. Participants will have opportunities to make materials for classroom/home activities. Presenters: Sandy Crowell and Georgia Phillips. Location: Rend Lake Resort Conference Center, Whittington, IL. Contact: Gary Dozier, 397-8930, ext. 171, E-mail: gdozier@stclair.k12.il.us.

moonlight is the newsletter of the Riverbend Down Syndrome Association.

Editor: Victor Bishop
Web Site: http://www.riverbendds.org/

Regional Events

September 22. Buddy Walk 2002. Pre-game party begins at 10:30 a.m. Walk at 12:00 p.m. Cardinals versus Astros game at 1:10 p.m.
The Buddy Walk Party (pre-game) will be held on the south lot of Busch Stadium. Some guests will include Cardinal's D.J., and Fredbird. Food, souvenirs and a great time for all.
This year everyone will have the opportunity to collect sponsorship donations for our walk, to register sponsors contact DSAGSL - Buddy Walk Sponsors, 14974 Lake Manor Court, Chesterfield, MO 63017. (314) 961-2504.

Down Syndrome Articles
Down Syndrome is Contagious by Wendy Holden. Posted on the Internet, May 30, 2002. Reprinted with the permission of the author.

Wendy Holden, Kittitas County Parent to Parent Coordinator, lives in Ellensburg, WA. Eli, born December 30, 2000, is her sixth child.

Down syndrome is a genetic disorder characterized by a triplication of the genetic material on the 21^st chromosome. This trisomy occurs with the first division of the developing zygote, as a result there is extra genetic material present in every cell of the individual. Recently, science has discovered that this cellular abnormality is highly contagious. As result, family members (and even friends) of individuals with Down syndrome often find themselves exhibiting dramatic changes due to this "something extra" permeating their bodies at the cellular level. These changes manifest themselves in a number of ways.

Eli Holden. 14 months old.

Something extra in the visual cortex results in parents who view the world differently. In addition to seeing things in an entirely new light, these parents also report having an increased ability to focus on what is important. Spontaneous appearance of tears of joy have also been confirmed.

The section of the brain used in logical thought undergoes dramatic changes. Parents suddenly find themselves able to comprehend and discuss complex medical procedures. The ability to decipher long strings of acronyms appears almost immediately and it is not uncommon for affected parents of newborns to be able to differentiate between ASD, VSD and PDA. Familiarity with G-tubes, Pic lines and the NICU is another side effect.

Over time, the entire nervous system is transformed, enabling parents to perform tasks previously thought impossible. These changes result in individuals finding the nerve to advocate before large crowds, speak to classroom of medical students and educate the population at large about issues they are passionate about.

These changes are closely tied in to dysfunctions in the verbal abilities, which makes it virtually impossible for parents to bite their tongue. Often, individuals who previously considered themselves reserved will find themselves outspoken and effective communicators.

The pulmonary system is altered to a dramatic extent. Parents report having their breath taken away at the slightest prompting. The cardiovascular system develops similar vulnerabilities and reports of hearts pounding loudly and swelling unexpectedly are not uncommon. One mother reported that her heart skipped a beat when her son smiled at her for the first time. The extremities are also altered. Arms reach out to strangers for support, and in turn, hands comfort and nurture those in need. Legs strengthen and balance improves, allowing parents to stand firm in their convictions and walk without faltering, even when shouldering a heavy load. Scientists are baffled by the widespread scope of these symptoms. Equally perplexing is the response of those afflicted. Parents readily acknowledge fundamental changes in their being, however, almost universally declare a preference for their new, altered level of functioning. "I wouldn't change a thing" is a common refrain. Apparently, the presence of a little "something extra" enhances the lives of individual fortunate enough to be infected.

The doctor said he has a transverse crease,
a fat pad neck and a moon-shaped face.
The doctor said if he lives he might be good at art.
from "Hundred Acre Woods" by Donna Biffar

'I count his chromosomes like sheep and wonder what the full moon brings'

     So began Donna Biffar's life with her wondrous son Mike Stroh, a boy born with Down syndrome — and a poet mother who loves him more than words.
     "I started writing poetry about 10 years ago," recalled called Donna, 37, of Smithton, whose new chapbook of poetry "Down: Poems and Other Syndromes," is dedicated to her son. I write about whatever happens to be there. I write about family. I write about laundry.
     She writes about Mike, now 15.
     Each birthday. Each tiny milestone. In other words, every chance she gets. Over the last decade, the poet — who has two published books of poetry — has explored Mike's life in 22 emotional poems
     I certainly had no idea of putting out a chapbook of them," she said. "But there they were. The first publisher I submitted them to took it."
     In the poem "Hundred Acre Woods," the poet recalls how she felt when she learned of Mike's condition. Just 22 when her son was born, she had no idea what to expect.
     Five years later, she was still finding out.

He sings of London Bridge at night hits high
strange notes and merrily rows his boat
on down the stream. I count his chromosomes
like sheep and wonder what the full moon brings.

     In another poem, "The Son of a Woman," she recalls how Mike, then in seventh grade, declared he wasn't her son. He wasn't kidding. He really believed it. Small for his age with little round glasses and an infectious smile, Mike refused to call the poet Mom for almost two years.
     "I don't think he called me anything during that time. Maybe "Hey you..." she said, shaking her head.
     He may be cute but he can be stubborn sometimes.

His teacher tells him, and his father
and me, but this boy, near man,
at thirteen is learning
to read street signs and carry numbers
and says he is not my son...

     It wasn't the first time Mike had given Donna cause for concern. Mike's younger sister, Becca, 12, glided through early childhood with nary a problem. Her big brother, on the other hand, almost didn't survive to age 3.
     "He had health complications at first," Donna remembered. "Infections. Asthma. For that reason, most of these early poems have 'air' in them-something about breathing. I realized that this morning, while I was looking over them. I had no idea how much that affected me."
     Once, when Mike was a toddler, Donna climbed inside a hospital bed with him, fearing he might not make it though the night. She recalls the traumatic experience in a poem called "The Race."

He sucks in hard like he did when he was a baby
those sterile nights in the veil
of an oxygen tent when the doctor said
this might be it, when the doctor said
if he lived he might be good
at art. Red monitors mirrored
the silver crib. I climbed in
past the wires and tubes anchoring
his life. The white room was black.
When the nurse came in on a sliver
of light, her pale dress a polyester
whisper, I'd already unsnapped
his sleeper and placed my palm
on his purplish chest. Monsignor said
watch for the light. He said listen
for the thrum of angel's wings.
What he meant was
air. . .

     "It's something when one chromosome splits and so many things go wrong - or right, some things go right," the poet said. For example, Mike is loving and trusting and blessed with a strong personality. Life is never dull with him around.
     "One of the games we play with Mike is we call him Bob," his mother said. "For a long time, he would tell you his name is Mike. Don't call him Mikey. Don't call him Michael. He wouldn't answer to them."
     To convince Mike to loosen up, the family started calling him Bob. At first, the teenager was furious. But pretty soon, he grew fond of the name.
     "Then we started calling him Annabelle to tease him," his mother said. "Now he calls himself Bobbabelle."
     Among Bobbabelle's many fascinations: an invisible bear who lives in the basement.
     "Any trouble that happens, we say the bear did it," Donna said. "If somebody was supposed to take out the trash and didn't the wouldn't let them."
     Sometimes the bear turns off the hot water while Mike's sister is taking a shower. He also has been known to put Mike's socks in the wrong drawer. A creature of habit, Mike hates it when that happens.
     Unlike her son, Donna is fond of trying new things.
     "I didn't start writing till I was 28," she said. "I took a creative writing class at Belleville Area College. I wanted to learn how to write short stories. The first part of the semester was about short stories and the second part was about poetry. I thought, 'I'm going to get out of the second part of the semester, but as soon as the instructor started reading poetry it blew me away."
     That same teacher, a published poet named Wayne Lanter, accused Donna of copying her first class assignment out of a book. It took her a while to convince him the poem was hers - but the pair eventually struck up a friendship.
     "I kept showing him new poems even after the class was over," she remembered. "I kept pinning my poems to his door. He just couldn't get away from me."
     At the time, both Donna and Wayne were married to other people. When both poets found themselves divorced, their friendship took a different turn.
     "Now Wayne is Mike's 'Good Daddy,' Donna said of her live-in mentor.
     He also is Donna's devoted editor.
     "I only write on weekends," said Donna, whose poems, articles and reviews have appeared in several periodicals. "When the kids were younger I'd get up at 4 in the morning and write. Now that they're older, I can wake up at 6."
     So from 6 till 9 a.m. on Saturdays, she pens her poetry. Then she does her homework — she's working on her bachelor's degree at Southern Illinois University at Edwardsville — and then she does her housework.
     The poet also finds time to edit River King Poetry Supplement and Southwestern Illinois College's award winning literary magazine, "Head to Hand."

Mike, a freshman at Masoutah High School, practices soccer at Sheve Park in Mascoutah with his Special Olympics team.

     One of her top priorities is chauffeuring Mike, a freshman at Mascoutah High School, to his Special Olympics practices. On a recent Thursday night, Mike kicked a ball across a soccer field in Scheve Park in Mascoutah, while his proud mother watched. The subject of some of Donna Biffar's best poetry is becoming more independent these days. "Mike told me yesterday, when he graduates, he's moving out," his mother said. "And he's going to live in a house in Belleville. He said I couldn't come to visit but I could call him on the phone. No letters, though.
     "I said, "How are you going to get to Belleville?" And he said, "I'm leaving on a jet plane." So, of course, I started singing 'Leavin' on a Jet Plane.' He said, 'Stop singing that! It makes me sad!" I said, 'Maybe if you'd let me come to visit, you wouldn't be so sad...'
     Sounds like the start of a beautiful poem.

Donna Biffar's new chapbook, "Down: Poems and Other Syndromes" can be purchased by e-mailing pudding@johnstown.net or by calling 740-967-6060. The cost of the chapbook is $8.95 plus $2.25 shipping.

Going Strong. Life Goes On for actor Chris Burke - now a Down syndrome activist by Susan Horsburgh, Rachel Biermann in Los Angeles and Caroline Howard New York City. People Magazine, Where are they now. Reprinted from People's November 27, 2001 issue by special permission granted by Maureen Fulton. © 2001 Time Inc. All rights reserved.

Chris Burke grooving in his Manhattan apartment

"I know how to believe in myself," says Burke (grooving in his Manhattan Apartment). (Erica Berger/Corbis Outline)

As Life Goes On neared the end of its four-year run in 1993, the producers worried about how one of their stars, Chris Burke, would react to the ABC family drama's cancellation. Burke had scored a breakthrough as the first actor with Down syndrome to land a major prime-time series role, that of mentally challenged teenager Corky Thatcher. He had also formed lasting friendships with his TV mom, Patti LuPone, now 52, and sister, Kellie Martin, 26, who says, "Chris was that show."
When producer Bob Goodwin broached the news of its possible demise over dinner one night, Burke, then 27, "looked at him seriously, took a swig of his soda, and said, 'Well, then I guess life goes off,' " recalls his father, Frank, 77, a retired NYPD inspector. "Everyone at the table just laughed."
In fact life gets more enjoyable for Burke, who now serves as a goodwill ambassador for the National Down Syndrome Society and editor-in-chief of its quarterly magazine - between touring with his three-piece folk band and taking on occasional TV acting gigs. Along the way he has acquired an enviable self-confidence. "When people say I can't do something, it doesn't make me mad," he says. "It makes me work harder."
"He's always had that determination," says his mother, Marian, 75, a retired trade-show manager. The youngest of four siblings growing up in New York City, Chris was 8 when he began attending special-education boarding schools. At 19, a year before graduating from the Don Guanella School in Springfield, Pa., he saw an episode of The Fall Guy featuring Jason Kingsley, a 10-year-old Down syndrome actor. Recalls Frank Burke: "Chris wrote a letter of congratulations to Jason," whose mother, Emily, a writer-producer for Sesame Street, wrote back and encouraged Chris's budding acting ambitions. Three years later she helped Burke, then working as an elevator operator, win an audition for a small part in Desperate, a series pilot. ABC executives rejected it, but in 1989, impressed by Burke's charm, they ordered up another series, Life Goes On, to be built around him.

Burke bonded with Life kin (clockwise from top left in '89) Monique Lanier, Bill Smitrovich, Patti LuPone and Kellie Martin. (ABC Photo Archives)

It was a big coup — for any actor. "He was so talented and achieved so much, not just for a kid with Down syndrome," says LuPone. Adds Martin: "All those people in America who had never met anyone with Down syndrome got a whole new perspective." Burke's eyes opened too. Life Goes On "showed me all the options I had," he says. "I could make a difference."
Indeed, immediately following the series' end, Burke was tapped by the NDSS to speak at public schools, conferences and special events like walkathons to spread the message of inclusion and acceptance. Among those who have heard him speak is Chris Devlin, 34, a New Jersey factory worker with Down syndrome who has Life Goes On pictures on his bedroom walls. Last May, Devlin did a TV spot for Hallmark cards. "I have bigger dreams in my life because of Chris Burke," he says.
When he's not inspiring others, Burke serves as an usher at the local Catholic Church near his Long Island weekend home. (He lives with his parents in New York City.) Unattached, he dotes on 10 nieces and nephews. "Being a son, brother, uncle and brother-in-law is all I care about," he says.
Well, not quite all. Burke plays 150 gigs a year as lead singer with his band, Chris Burke with Joe and John DeMasi. He met the DeMasi twins, 47, when he was 13 and they were music counselors at a day camp. After years of jamming together, they formed the band in 1990 and have since made three albums — "songs about love, friendship and inclusion," says John DeMasi. Onstage, Burke hams it up, switching from his TV alter ego, Corky, in his high school letterman jacket, to Chris "Cool Elvis" Burke, with long sideburns and shades. "The show centers on Chris's message," says DeMasi. "It's not about your disability — it's your ability that counts."
Burke agrees. "I have a motto on my bedroom wall: 'Obstacles are what you see when you take your eye off the goal,' " he says. "Giving up is not my style. I just want to do something that's worthwhile."

Canadian Down Syndrome Society Shocked by Ruling in Nova Scotia Press Release
April 25, 2002 - The Canadian Down Syndrome Society (CDSS) expressed their outrage and disappointment today at the decision of the Tri-County District School Board in Nova Scotia in reinstating a teacher and teacher's aide. The two employees were accused of instructing students to hit a classmate who has Down syndrome.
"The choices and actions of the teacher and aide are shocking, and were not 'experimental methods of behavior modification' they were abusive and inhumane. Behavior is a form of communication for all people, but it is an exceptionally important form of communication for children who have speech difficulties or who are non-verbal. Aggression is not a symptom of Down syndrome, but rather a response to something within a child's environment", says Suzanne Fletcher, Chair of the Canadian Down Syndrome Society. "The teacher's behavior in this situation sent a clear message that it is acceptable to abuse people with cognitive differences, or to incite others to abuse them. We disagree."
According to media reports, the unidentified elementary school teacher had been suspended, along with a teacher's aide, after allegedly telling the children in his class to hit a child with Down syndrome when she was acting aggressively. Both the teacher and aide were reinstated by the school board on March 5.
The CDSS joins with the Nova Scotia Minister of Education, the Honorable Jane Purves, in demanding an explanation of the reinstatement by the board.
"Children are entrusted to schools and to teachers to provide a safe and nurturing learning environment for all students. What occurred in this classroom was barbaric and damaging to all the persons involved. Teachers have an obligation to scan for and report suspected incidents of abuse, it is unforgivable that these two committed it" says Fletcher. "It's particularly frustrating because there are so many resources available to teachers to help them promote inclusion in the classroom. Individuals with Down syndrome are successfully participating in the school system at all levels including university."
The Canadian Association for Community Living has also joined with the CDSS and the Minister of Education in demanding an explanation from the board.
For more information please contact:

Suzanne Fletcher
Canadian Down Syndrome Society Chairperson
811-14 Street N. W.
Calgary, Alberta
Tel: 1-905-357-4572
Tel: 1-800-883-5608
Fax: 1-905-357-4572
Fax: 1-403-270-8291
E-mail: jfletcher73@cogeco.ca
E-mail: dsinfo@cdss.ca

The Canadian Down Syndrome Society (CDSS) is a National organization whose mission is to enhance the quality of life for all individuals who have Down syndrome through advocacy, education, and providing information.

Father's Journal

Desperately Seeking Respite

My son: 5, brown/brown, hypothyroid, H/W proportionate per Down syndrome charts, not potty-trained. Will wipe your tears when reading sad stories to him. Has not been to Boston in the fall.
You: Likes to play games and enjoys holding hands and long walks in the park to the slides. Looks not important. All calls answered.

Web Wanderings

URL: http://www.promptinstitute.com
The PROMPT System stands for "Prompts for Restructuring Oral Muscular Phonetic Targets". It is a dynamic tactile method of treatment for motor speech disorders which is based on touch pressure, kinesthetic and proprioceptive cues. It helps to reshape individual and connected articulatory phonemes and sequences (coarticulation). The clinician helps to manually guide articulators to produce specific sounds or words that seem to be problematic. This is a hands-on approach and thus the clinician uses his/her hands to cue and stimulate articulatory movement, at the same time helping the child to limit unnecessary movements.