May 1997 Issue

The Riverbend Down Syndrome Association's second meeting took place on April 25, 1997, and we wish to thank Dr. Loretta Ryan for her informative talk. The Mexican dinner menu was:
Beverages: Watermelon Juice and Hibiscus Tea Drink
Salad: Jicama, Papaya and Mango Salad
Soup: Black Bean with Epazote, Mexican Fresh Cheese and Fried Tortilla Strips
Entrée: Turkey Enchiladas de Mole, accompanied with Mexican Rice
Dessert: Portuguese Poached Meringue with Apricot Sauce
Upcoming events: The next meeting's topic will be: Down syndrome and Dentistry, and a summer picnic is being planned at Godfrey Park.

Today's AdVantage featured (on Wednesday, May 14, page A-13) an article inviting parents to join our Group.

We would like to upload all our children's photographs to our web site: Please send your photograph, which will be returned after scanning, to:

Victor & Gloria Bishop
14 Silver Oaks Lane, Apt. #2
Edwardsville, IL 62025
STARnet Region IV Events
May 19, 10:00 a.m. - 3:00 p.m. Genetics, Syndromes and Communication Disorders, Speakers: Dr. Debra Reichert Hoge, Ed.D. CCC-SLP and Dr. Marlene Salas-Provance, Ph.D. CCC-SLP. Location: Regional Office of Education (in the Gallery), 500 Wilshire Drive, Belleville, IL.

June 6, 9:00 a.m. - 12:00 p.m. Putting Out the Welcome Mat: Practical Idea for Including All Children. This workshop will focus on demystifying the inclusion of children with disabilities into regular community, preschool and elementary programs. Pere Marquette Lodge, Route 100, Grafton, IL.

June 14, 9:00 a.m. - 12:00 p.m. Putting Out the Welcome Mat, Part III: Making it Work - Supports & Resources. This workshop will explore the resources available to families and care settings to accommodate all children. Carlinville Holiday Inn, Carlinville, IL.

For additional information, contact the STARnet office: 1 (800) 942-7827 or (618) 397-8930 ext. 166

News Clippings
Shattering a Stereotype, WS College Freshman Breaks Educational Ground, by Catey Sullivan, The Suburban LIFE Citizen, September 7, 1996, Section One, page 9:

In June, [Eamon] Shannon, 18, became the first student with Down Syndrome in Illinois to graduate in four years from his neighborhood high school, having met the same requirements as his peers. With his acceptance into college August 14, Shannon received another first.
No one with Down Syndrome has ever been admitted to a degree program at the University of Wisconsin before. Shannon's parents and teachers suspect that the Lyons Township High School alumni (sic) is the first student with Down Syndrome in the United States to be admitted to college with the goal of earning a degree.

Time Magazine, February 3, 1997, Fertile Minds by J. Madeline Nash, page 55-6:
There appears to be a series of windows [of opportunity] for developing language. The window for acquiring syntax may close as early as five or six years of age, while the window for adding new words may never close. The ability to learn a second language is highest between birth and the age of six, then undergoes a steady and inexorable decline. Many adults still manage to learn new languages, but usually only after great struggle.

Time Magazine, April 21, 1997, Milestones, page 37:
Died. Gerald Gaull, 66, U.S. pediatrician, whose identification of taurine in mother's milk, an amino acid important for brain development, prompted its inclusion in baby formulas; of an aortic aneurysm; in Quito, Ecuador.

Your Child, Newsweek Special Edition, Spring/Summer 1997, Your Baby Has a Problem, by Robina Riccitiello and Jerry Adler, page 50:
[...] life expectancy was around 9 years. Unnumbered thousands of children perished in neglect that way, before an astounding paradigm shift that began in the 1970s, with parents who insisted on taking their Down syndrome babies home with them. With adequate care, it turned out, Down syndrome children didn't have to die before the age of 10; life expectancy is 58 and rising, according to [David] Patterson. With someone willing to teach them, most could learn to read, and some, says Lori Atkins of the National Down Syndrome Society, even have driver's licenses. It is possible, in short, for a Down syndrome child to hold a job and live at least a version of the sort of life that every parent dreams of from the moment he or she hears the fateful news that a child has "a problem."
A normal life.

Play Pals
Location: Saint Anthony's Wellness Center, Alton Mall. A developmental program for children ages 3-12 months (Tiny Pals); 12-24 months (Mini Pals); and 2-3 years (Motor Pals) a and their parents. Activities are provided that enhance the developmental and visual skills of children as well as their self-confidence and social play. Fee: $30 for 6 classes. Six-week session starts June 9, ends July 14. Coordinated through Saint Anthony's Occupational Therapy department, 463-5340.

Playful Harmonies
The Playful Harmonies program uses music to foster rational thinking skills, encourage emerging or slowly developing motor skills, and to promote language development. Classes are held in Troy and Belleville. Summer session cost is $50. For information call Dana at 236-1107.

Hanen Workshop for Speech Language Pathologists (SLPs)
The Communication Disorders Department at Fontbonne College in St. Louis, MO is hosting a Hanen Workshop on Involving Parents as Language Facilitators June 19-21, 1997. The workshop is being attended by SLPs from all over the state of Missouri, as well as Illinois, Indiana, Wisconsin and Puerto Rico. For more information on the workshop, contact Lynne Shields (314) 889-1464.

Down Syndrome Newsletters Articles
Reprinted with permission from Down Right Active, May 1997, the newsletter of the Tidewater Down Syndrome Association:
It's Karate by Rebecca Renlema, PT

Pediatric physical, occupational and speech therapists have long been serving the needs of a variety of developmentally delayed children, most often in a gym setting with special therapeutic equipment. With the push for more and more functional activities as the focus of treatment, therapists have taken on the challenge of looking for effective ways of providing this. There has been a greater use of community resources that will both meet the therapeutic needs of the child and gain the interest of child and family alike. With the help of Mathew Obenaus, instructor of Tae Kwan Do at the Martial Arts Education Center in Chesapeake, we have found a great place to deliver therapy! We can serve the special needs of the children we work with in a more natural environment, and allow interaction of family members on a new level.
Currently, I have a small group of pre-school children in a specially designed karate class in which typically and atypically developing children interact. While researching different types of sport/recreational classes in the community, I discovered that the movements and theories in karate are very useful in addressing many of the goals given in therapy. With the use of a variety of stances, kicks, punches, blocks, and combinations of movements, karate works on gross and fine motor skills as well as language issues.
For gross and fine motor issues, we work on balance, strengthening, range of motion and body awareness, as well as improving hand function. This is all accomplished in a socially acceptable, non-violent manner. Karate uses several stances, as well as a semi-squat position, which require increasing leg strength and hip range of motion to maintain. The child must also keep the trunk erect and in a functional position for the use of hands and eyes and mouth. It also teaches a variety of kicks that increase the use of one leg stance during a dynamic activity. This directly relates to improving gait patterns by elongating the leg muscles and gaining isolated hip, knee and ankle motions with maturing balancing reactions. Through the use of punches and blocks, children can gain better awareness of arm and hand position while strengthening abdominal and shoulder girdle muscles, as well as working on isolated muscle control of the upper body.
Sequencing, motor planning and eye-hand coordination are easily addressed with activities presented that require a combination of karate movements and improvised obstacle courses. There are also activities that require the repetition of a specific movement, getting increased input to the brain about what the body is doing while emphasizing more fluid movement in optimal posture, as well as efficiency of movement and conservation of energy.
In working with Mr. Obenaus, we have been able to create a non-threatening environment where the children can work through new activities while watching movements modeled for them, then gain the approval of the class while successfully completing the movements. The inclusion type environment in this unique setting provides for each of the children to learn from each other while they work. They progress at their own rate and in their own manner. The class requires both individual and group efforts to achieve the individual's goals. It also easily pulls in the rest of the family or caregivers, which creates a more normal and motivating environment, creating increased opportunities for carryover at home in a fun and friendly manner.

Web Wanderings
National Down Syndrome Society (NDSS) Announcement:
CBN (Christian Broadcast Network) News will be airing a segment on Down syndrome on Friday May 23. The story can be seen on the Family Channel at 10 a.m. and again at 10 p.m.
Myra Madnick, NDSS executive director, and Elizabeth Goodwin, NDSS board president and co-founder, were interviewed for the story yesterday. Chris Burke, NDSS National Goodwill Ambassador, and his mother, Marian, will be interviewed live from the CBN studio after the segment. CBN News has a national audience of approximately 1 million viewers.

Piracetam Study Information. Reprinted with kind permission of Dr. George T. Capone, M.D., Kennedy Krieger Institute (KKI):

In July of 1995, Dr. George Capone (Director of the Down Syndrome program at KKI) announced at the NDSC Conference in Washington DC that researchers at KKI were planning to design a study to determine if the drug Piracetam is safe and beneficial to children with Down Syndrome.
In June of 1996, plans for such a study were delivered to the National Institutes of Health, Institute of Child Health and Development-Mental Retardation and Developmental Disabilities Branch. A randomized, triple blind, placebo-controlled design with a crossover in treatment was proposed. The study was designed to take 3 years.
In November of 1996, we were informed that the scientific review of the grant was complete. It was determined to be not fundable at this time, primarily because of a lack of convincing preliminary data (proof) which indicates any benefit from Piracetam for children with Down Syndrome.
In January of 1997, the KKI research team began its plans to revise the study so that preliminary data could be obtained in a relatively short period of time. A randomized, triple blind, placebo-controlled design without crossover was planned. The revised study proposes to study 60 children ages 5-8 years old. 30 will receive piracetam, 30 will receive placebo for 12 months.
In March 17 of 1997, a revised proposal was submitted to the Food and Drug Administration for funding consideration under the Orphan Drug Program. We were informed by the FDA that results of the scientific review would be complete by September of 1997. If funded the proposed research could begin by the beginning of 1998.

The Present
We are hoping to begin a smaller preliminary study by the summer of 1997. Private sources of funding are also being considered, however we have no such funds to begin the study at this time.
KKI cannot provide written information regarding our proposed research study at this time.
If we receive sufficient funding to begin a Piracetam study we do not anticipate the need to recruit subjects from beyond the mid-Atlantic region. We will be in contact with families who have expressed an interest in the study previously.
Common Misconceptions
Piracetam is a drug, not a nutritional supplement. It has been well studied in animals and humans including children.
KKI has not begun its study of Piracetam.
The current state of knowledge regarding safety and efficacy of Piracetam in children with Down syndrome is no further advanced than it was 2-3 years ago.

Future Plans
In the event that Piracetam is found to be safe and beneficial in Down Syndrome, KKI will help facilitate other studies in these United States of America. We will collaborate with others to duplicate the study fundings at several medical centers in the U.S. and Canada. We will also initiate studies in younger children (under age 5 years) with Down syndrome.

Father's Journal
I never knew my godmother. I was six years old when we left to Mexico, and the whereabouts of my godmother Lilly were lost. It was only much later, after the funeral of my aunt, that my father asked me if I knew whom the waitress was, as she kissed my father on the cheek. I told my godmother Lilly that I had been thinking about her, as my wife was seven months pregnant, and considering who our baby's godparents should be.
Lilly's first husband was interned in a hospital with a heart condition and Lilly was abandoned for a nurse; she proudly gives me a postcard from the Hall of Fame with the picture of the last spitball pitcher, who left her a widow and a waitress. Over the phone, she tells me she changed my first diaper and I break her heart, once again, as I explain that my son was born with Down syndrome.

A Miracle
My wife told me that her mother is praying for Emmanuel. In her simple, powerful faith she is praying to rid my son of Down syndrome. She is asking for a miracle and has instructed us to place our Lady's image, that of a shrine in Mexico, near Emmanuel's bed.
My faith is not meek; with trepidation I ponder if each cell in her latest grandchild were to be altered. We are truly blessed by Emmanuel and every time I see his little finger less curved, I know she is praying for my son.