|April 1997 Issue||
STARnet Region IV Workshops
Every Day is a New Journey
Saturday, April 26, 1997
Holiday Inn, Collinsville
9:00 - 3:30
Features workshops on, among others, Down Syndrome, stress management for families, effective IEP participation, grandparent issues, parent involvement (including a special session for Dads only), and accessing resources.
Explore the Possibilities, Keynote Speaker: John Foppe
Saturday, May 17, 1997
Holiday Inn, Mt. Vernon
9:00 - 3:30
Co-sponsored by four Centers for Independent Living in southern Illinois and will provide an opportunity for participants to meet/interact with adults with disabilities. Missy Kichline recommends this conference.
Registration for either event is $5.00, which includes continental breakfast and lunch. For more information on either conference call Sharon Gage at (618) 397-8930.
The path towards approval of drugs for other diseases, like Alzheimer's, can take years. As one cynic and AIDS journalist, Elinor Bukkett, says, "AIDS patients scream louder than the elderly." A Special Report: Dr. David Ho & The Lazarus Equation, Rolling Stone, March 6, 1997, p. 58.
Jaco Van Dormael, 40, enjoyed working with the mentally disabled 15 years ago on a short film about the Special Olympics. So the Belgian director cast 16 actors with Down's syndrome and other mental disabilities in his latest movie, The Eighth Day. Belgium's entry in the Oscar for Best Foreign Film, it opened last week in the U.S. Star With Down's Syndrome Shines in New Film, Parade Magazine, March 2, 1997, p. 10.
Does chicken soup [...] really help to cure a cold? ... Another researcher has theorized that this effect is partly due to the amino acid cysteine, which is found in chicken skin and feathers and which he postulates is released from the skin when the chicken soup is heated. Cysteine is chemically very similar to the drug acetylcysteine, a mucus-loosening agent commonly prescribed for patients with bronchitis and other respiratory disorders. It is also an antioxidant, and may have a protective effect on the delicate tissues of the lungs. The March Almanac, The Atlantic Monthly, March 1997, p. 14.
Shortly after Margaret was born, Sophia began to notice the child was not developing at the same pace of her other children [...] The Danielses boarded a train with little Margaret to Chicago to seek advice of a specialist. "I didn't know anything about Down's syndrome when Margaret was born," explained Sophia. "So after a few days we visited the hospital filled with Down's syndrome children in the big city." I talked to the doctors there about it, and they suggested we put her in a home with others like her. But we decided not to. We wanted to take care of her." Sophia said that after she told one doctor that they lived in a farm, he conceded that the environment might be a good place for Margaret after all. The article is accompanied with a photograph with the following caption: Sophia Daniels, right, 93, and her 54-year-old daughter, Margaret, share chores and companionship at their farm in Weyerhaeuser, Wis. Margaret, who has Down's syndrome, has always lived with her mother on the farm. Mother Keeps Young Caring For Down's Syndrome Daughter, Mary Caton-Rosser, St. Louis Review, January 31, 1997, p. 9.
Down Syndrome Quarterly
Denison University, Granville, OH 43023
Subscriptions $24/year (4 issues)
A developmental program for children ages 3 months to 4 years and their parents. Activities are provided that enhance the developmental and visual skills of children, as well as their self-confidence and social play. Coordinated through Saint Anthony's Occupational Therapy department, 463-5340.
Vitamins and Down Syndrome
From the Winter 1997 Edition, Volume 3, Number 1, of "Connections", reprinted with the kind permission of:
Michael L. Begleiter, M.S., C.G.C.About two years ago, there was a flurry of interest in the use of Piracetam, multi-vitamin supplements and amino acid supplements for children with Down syndrome. At that time we cautioned against the use of Piracetam since there have been no studies regarding the use or safety of this drug in children or adults with Down syndrome. Vitamins are generally safe to use with the exception of the fat soluble vitamins (A, D and E) which when given in very large doses can be toxic. Amino acid therapy merely supplies the substances present in protein.
Senior Genetic Counselor
The Children's Mercy Hospital
2401 Gillham Road
Kansas City, MO 64108
(816) 234-3290, Fax: (816) 346-1378
Am J Ment Defic 88:214-217. 1983Web Wanderings
Pediatrics 72:707-713. 1983
J Pediatr 105:228-234. 1984
J Ment Defic Res 29:233-240. 1985
J Nutr Sci Vitaminol 35:181-192. 1989
Except Child 55:336-341. 1989
Dev Med Child Neurol 31:532-537. 1989
My Son Will Roll His R's
We held an oxygen mask to Emmanuel, when he was born, so we could cuddle him and I left my wife behind to follow Emmanuel to Barnes' Special Care Nursery, for this limp body was mine and no one was going to switch him. I was told that Emmanuel was to be transferred to the Critical Neonatal Care Unit to stabilize him. I latter read the report of that first night and the kind nurses interpreted my shock to a language barrier. How could the nurses hear my accent, since I was crying the tears that my weak and ill newborn could not?
The admirable nurses at the Special Care Nursery would practice their high school Spanish on Emmanuel. We would resolve their language disputes as to the accepted Spanish translation of the color brown, for they wanted to be sure that Emmanuel spoke correct Spanish. Our favorite nurse would practice the American Pledge of Allegiance in Spanish, irrefutable proof that the reconquista is soon to come.
Unlike other sensible fathers who used rocking chairs, once I learned how to disconnect Emmanuel from all his monitors, I would pace the Special Care Nursery with my son and sing a bedtime lullaby in Spanish. Lullaby in Spanish is arrullo, and my arrullo had lots of double r's to soothe my baby to sleep. Finally after many days, a nurse got the courage to confide that their worse nightmare was dropping a baby and my wanderings made them extremely nervous.
The Rain Stick
My son, Emmanuel, does not care for rattles, but true to his south of the border heritage, follows our 12-inch rain stick avidly. He will follow the spiral flow of seashells, which imitates the serene sound of rain. So when the therapist came over with her little bell, we were doomed, and if Emmanuel could have, he would have covered his ears to the reverberating sound. This story does have a moral, but for the time being, I keep playing with Emmanuel, who is no longer fazed with his father's behind the back hand maneuvers.