June 1997 Issue

The Riverbend Down Syndrome Association's third meeting will take place on July 18, 1997 from 6:00 to 8:00 p.m. The guest speaker will be Thomas E. Kennedy, III. The two topics will be advocacy and how the upcoming Special Education state and federal laws will affect our children. A question and answer session will follow and we will be serving cuisine from Spain. The meeting will take place at our apartment.

Mr. Kennedy is an attorney in private practice in Alton, IL, concentrating in civil litigation, disability rights, Fair Housing, school law and other civil rights law. Mr. Kennedy was formerly the Deputy Director on the Illinois Developmental Disabilities Law Project, and administrator for the Illinois Department of Mental Health and Developmental Disabilities. He was appointed and currently serves on the Civil Justice Reform Act Committee of the U.S. District Court for the Southern District of Illinois. He is currently a member of the board of directors of IL-TASH, an advocacy organization for persons with severe disabilities; the Illinois Assistive Technology Project; and the Immigration Project, Inc.

Sunday, May 18, page A-4, the Alton Telegraph featured an article inviting area parents to join our Group.

STARnet Region IV Events

July 28, 9:00 a.m. - 3:00 p.m. Where Do I Start? Beginning Assistive Technology and Augmentative Communication. Presenters: Cheryl Newsome, MS, CCC-SLP and Mary Bettlach, MPH. This workshop will introduce the use of technology for children with significant limitations in motor abilities and/or verbal speech production. Location: Holiday Inn, Mt. Vernon, IL.

July 29, 9:00 a.m. - 3:00 p.m. Communication Issues in Servicing Young Children with Special Needs at Home and in the Classroom. Presenter: Debra Reichert Hoge, Ed.D., CCC-SLP. This workshop will provide a review of typical/atypical communication development in young children, an overview of disorders of communication associated with other developmental domains, guidelines for parent/professional collaboration, and an overview of augmentative/alternative communication and integrated therapies for the early childhood classroom and home. Location: Holiday Inn, Mt. Vernon, IL.

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

News Clippings

Copyright © 1997 The Seattle Times Company. Sunday, June 1, 1997.
A Bittersweet Milestone: Lupita Prepares to Leave the Nest by Sherry Stripling, Seattle Times staff reporter.

Lupita Cano is 28 and ready to fly the coop. She's graduated from high school, tested the work world, and now she's eager for her independence. Well, semi-independence. She is moving "downstairs with my roommate." "Yes," says her widowed mother, Delia C. Cano, 73. "First we are going to do that. She is going to move to the basement with a friend, like a transition." But the next move... "And from there to my condo," said Lupita. "My dream home." The condominium so far is just a dream. The Canos don't know how it will come about, but they can both picture it perfectly. It will have some sort of assistance because Lupita, who has Down syndrome, needs a little extra help. It will be safe and it will be right in the community so Lupita, a good worker and frequent volunteer for the less fortunate, can continue to contribute to society. Lupita knows one other thing about her dream home. It will be nearby. "Just somewhere where my Mom can drive to," Lupita said, "Not far from home and like being at home." "Yes," said her mother, lifting her glasses to dab her eyes. In the past two years, Lupita's father, aunt, one of her sisters and even her dog have died. It has been a very difficult time for both her and her mother. That reminder of life's fragility has made it clear to Delia Cano that she must make plans for Lupie even though she has no wish to live in the big house without her. "You have to face it," said Delia about death, shades of her Peruvian accent evident in her English. "It's very painful, and you wish you could be here forever, but the truth is someday it's going to happen." The basement is a gradual transition, more for Delia's sake than for Lupita's. It is hard enough when a nondisabled child leaves home. It is very sad, Delia said, but you know they're going to be all right. "But when a child like this leaves the nest, your heart just aches," Delia said. "You don't know how the world is going to be out there for them!" Delia Cano thought it was not possible to experience more love than she felt for her first four children, but when she had Lupita her love "got huge." Lupie changed her life, taught her how to see and appreciate the world. She is less likely to begrudge gray days because she knows they will only make her admire beautiful days more. Delia knew immediately that this child needed her more than her other children, needed her protection from the world.

"Oh, come on, Mom." "That's what I thought, Lupita, and look at what you have become, a wonderful young lady." Life with Lupita has been like climbing a mountain, where every now and then there are plateaus to enjoy the view. The peak was definitely her high-school graduation, Delia said. The down side has been finding work for Lupita, and now housing. But none of it is new for Delia and Lupita, who have been fighting for opportunity for Lupita for 28 years. When Lupie was born, Delia and her late husband, Rodolfo, had never heard of Down syndrome or even "Mongoloid," the more popular term of the day. They were told not to take her home. It would be better to place her in an institution for life. "Oh, yuck," said Lupita. Delia called a friend at the University of Washington and heard about a model preschool program still in the planning. Books she had read about Down syndrome were "ugly," she said, "very discouraging," but she got incentive from the UW's Valentine Dmitriev and Patricia Logan Oelwein, who told her to take Lupita home, love her and talk to her. Lupita had no neck strength. Delia hung her other children's Valentines all around the crib so Lupita was drawn to lift her head and look: good exercise. Then she began to worry that Lupita would someday run out into the street. She rigged up a red, yellow and green light on a board. When Lupita pulled each cord, the family shouted out the color of the light until Lupita learned the difference. "I did all that on my own? Wow, thanks a lot, Mom." Lupita kept learning and learning, although her mother wasn't sure if she was really learning because she kept hearing that Down syndrome children could only mimic. But when Lupita went to the UW model program - which was used around the world - she and 10 other children learned to read and write. That "whole gang," as Lupita likes to call them, then went on to Green Lake Elementary, which had the first mainstream program for developmentally disabled children. When there was nothing at middle-school age but a vocational school, the parents went to Seattle Public Schools and demanded more, saying their children were too advanced for the old programs. By the time Lupita was in high school, she had two classrooms full of peers. In 1990 she and a dozen others graduated from Nathan Hale. Delia and Rodolfo held a formal dinner at their house, and the graduates went from there to the prom. "The night of the prom was very beautiful to us parents," Delia said. "We never thought they were going to be successful." Lupita lost a good job with Metro when she struggled with her sadness while her sister and father were dying two years ago. Today, she is back in job training and volunteering. In her spare time, she's writing an English-Spanish book of her life and testifying or writing to Olympia, chastising every legislator who proposes another budget cut for her community. Lupita's generation has not been visible because they blended in. They were not served, said her mother. Now it's very scary because there are so many with older parents and no place to go. "It is the hardest thing you can imagine."


Public Forum Discussion: Is Down Syndrome Treatable Nutritionally – Comments, and a Critique of Proposed Dietary Supplements.
Presenter: Dr. Arthur C. Zahalsky
Date: Thursday, June 19, 1997, 7:00 - 9:00 p.m.
Location: Downstairs Community Room, Edwardsville Public Library, 121 South Kansas, Edwardsville, IL. Telephone: 692-7556
For more information contact the moderator, Mrs. Kimberly Leshé at 692-0315.

Communicating Partners
The Communicating Partners Newsletter is a developmental guide for parents and professionals concerned with children with language delays. The collection of the first six newsletters is $10.00. A four issue yearly subscription is $15.00.
Children's Hospital Foundation
c/o The Family Child Learning Center
143 Northwest Avenue Building A
Tallmadge, OH 44278
(330) 633-2055
Fax: (330) 633-2658

Down Syndrome Newsletters Articles

Reprinted from Special Times, February 1997, Vol. 12, No. 1, the Newsletter of the Down Syndrome Association of Minnesota.
What Makes Inclusion Successful?

A commitment to the philosophy of inclusion and a belief in the equal value of all students must be shared by everyone. Many school districts make explicit mention in their mission statements that the educational goals of students with disabilities are of equal value to those of other students.

Accountability assures that all individuals, at the district, building, and classroom level delegate tasks appropriately and fulfill their responsibilities. The department of special education should have clearly defined policies for program implementation.

Careful assessment and planning guarantees that the student' s curriculum is appropriate, adequate support is provided, and long and short-term goals are met. Assessment should focus on the child' s strengths and the parents should actively participate in the design of the Individualized Education Program (IEP).

Collaboration requires that all participants be equal partners. Teachers will be working together in and out of the classroom; peers will become allies and friends; and parents will continually be interacting with the school system. The need for teamwork is constant and only through cooperative effort does inclusion work.

Flexibility must be present at every stage of the inclusion process. Because teaching models are often altered, curriculum adaptations made, and unique needs addressed, all participants must be willing to accept compromise and try new situations.

Funding must be available for the necessary support services. Some research has shown that districts which are implementing inclusion are not spending more than their segregated counterparts; rather, they are shifting costs.

Good leadership sets the tone for the entire process. Principals and superintendents must convey a positive attitude toward inclusion and foster a supportive environment in which new and challenging situations are dealt with in a flexible manner. Teachers who have the encouragement and backing of their supervisors are often the most successful initiators of change.

Social skills and peer relationships are two of the most important foundations for and by-products of inclusion. Peers are positive role models for speech and appropriate behavior. As allies and friends, peers offer support in and out of the classroom: in cooperative learning situations; in peer support groups; and in after school activities. Friendships develop which extend beyond the classroom.

Support includes everything necessary to meet the goals established in the IEP. Additional personnel may be present in the classroom; peers may form a support network; curricula may be adapted; teaching methods may change; physical accommodations may be made; and therapies may be given. Support can be extensive or minimal, depending on the needs of the particular students. For teachers, support may mean encouragement from supervisors; collaboration with peers; team teaching; feedback from parents; or access to the many resources available on inclusion.

Transition planning alleviates potential problems. Before the school year begins, teachers and staff should have appropriate training; the student with Down syndrome should be familiar with his or her surroundings; and peers should receive orientation. Knowledge about Down syndrome, and the abilities of people with Down syndrome, will lessen the apprehension of teachers and classmates.

Web Wanderings

St. Clair County Regional Office of Education: http://www.stclair.k12.il.us/starnet
Pottsville Republican and Evening Herald

Nutritional therapy for Down syndrome has parents' support. They see their children's lives improving; some experts unconvinced of new approach by Kathleen Roberts, Staff Writer.

[...] The therapy is a radical idea for Down Syndrome because it challenges the popular concept that the disorder is "hopeless" and people with the condition will never improve, said Dr. David H. Swenson, chemistry professor at Saginaw Valley State University, Saginaw, Mich. Early treatment is key, he said. Swenson says that babies with Down Syndrome and babies born with the proper set of chromosomes start out with similar brain functions; by six months, however, the brains of those with Down Syndrome have deteriorated. In Down Syndrome children, there is an overproduction of hydrogen peroxide in the brain, which destroys neurons. If children with Down Syndrome are given nutritional therapy, antioxidants can address this over-production of hydrogen peroxide and stop the breakdown of neurons. "It is not a cure. This disease is still there. What it can do is ameliorate the condition," Swenson said. Targeted nutritional intervention therapy first drew national attention on Jan. 19, 1995, as a result of a 15-minute-segment on ABC's "Day One." The show told the story of Dixie Lawrence, who had a vitamin mixture specifically made for her daughter, Madison, who had Down Syndrome. It included dramatic "before" and "after" photos of Madison that showed her improvement.

The treatment hasn't won everyone over, however. The medical community, having studied mega-vitamin therapy in the past with no significant results, is largely skeptical. "There's a natural conservative response to new ideas," said Swenson, who admitted he was first skeptical when investigating the concept in 1995. But he thinks that in 10 years, targeted nutritional intervention for Down Syndrome children will be a widely accepted practice. Piracetam itself has drawn criticism because it is not approved by the Food and Drug Administration, although it is approved for use in every other country but Australia.

Even Down Syndrome advocate groups remain unconvinced. The National Down Syndrome Society, New York City, an education, research and advocate group, opposes the treatment because it does not feel enough testing has been done on piracetam, said Lori J. Atkins, spokesperson. "We need to know if the substance is beneficial and number two, that it is safe," she said. The National Down Syndrome Congress, Atlanta, Ga., has also declined to recommend targeted nutritional intervention for a similar reason. According to the Congress's position statement on new nutritional therapies, "All of the ingredients are of familiar nature and not really controversial, but there are no concrete grounds for optimism in their use."

But some local parents of children with Down Syndrome disagree. Brophy says she has seen gradual "solid, subtle" changes in Skye over the past few months. Along with being healthier, she's more alert, babbling more, making eye contact with others and has a greater sense of recognition, Brophy said. "It can't be coincidence. It can't be in my mind," she said. Mark Hochgertel, Orwigsburg, says he feels the vitamins can only help his son, Adam, 20 months, not hurt him. For the cost of $400 a year, he feels targeted nutritional therapy is worth it. "The answers to some of these questions that we all have are not going to be clinically proven for 10 years ... These kids, in my opinion, can't afford to wait," he said.

Father's Journal

Salsa Therapy™
My 5-month son Emmanuel always has a morning congested nose, common with Down syndrome, so a humidifier was bought, which the owner's manual claims it is vapor therapy. I hereby claim the exclusive rights to salsa therapy™. Every Saturday we listen to Sábados Tropicales: KDHX, St. Louis, 88.1 FM from 2:00 to 4:00 p.m., and we dance to Latin music, which includes music therapy and bilingual speech therapy.
One would think that my wife Gloria would be happy with all the simultaneous therapies going about, but nooo, she objects to the lyrics, those soul wrenching admonitions, about that woman: My friends tell me, she's not worth it, don't shed tears for her, please forget her. Then I met you, now I live a life of suffering. I do not deny I was happy with the very little love you gave me. Now I think of you much more than before, much more. I used to be happy, but then I met you. My son disregards my wife's objections to age appropriate songs and continues to happily suck his thumb, his head on my shoulder, while I dance the salsa.

Speech/Language Assessment
We negotiated with our Early Intervention Provider to have a Speech Pathologist see Emmanuel each quarter and evaluate him. We knew about the Catch-22: if Emmanuel did well, there was no need for Speech Therapy. The assessment was scheduled during my lunch hour so I could be present. As I walked in, my son Emmanuel turned his head and coos, makes eye contact and smiles; I hold his little hand and we take turns, as I imitate his babbling and we do all the things that makes Speech Pathologists warm and fuzzy, who is furiously writing down my interactions with my son. Then my wife gives him his bottle and nary a drop did he spill. Emmanuel aced his evaluation and the Early Intervention Speech Pathologist found another job due to pending budget cuts.