December 2000 Issue

Merry Christmas and Happy New Year! There will be no monthly meeting on Friday, January 5th, 2001 due to the holidays. Mark your calendars for the February 2nd meeting, 6:30 p.m. at Saint Anthony's Wellness Center in the Alton Square Mall. For directions call the Wellness Center at 462-2222. The law firm of Greensfelder, Hemker & Gale, P.C. will speak on estate planning topics that are of concern for parents with children with disabilities: wills; durable powers of attorney; special needs trusts and guardianship. Greensfelder, Hemker & Gale, P.C. is a law firm of over 110 lawyers with a diversified practice and has been in existence since 1895. The St. Louis downtown office is located at 10 South Broadway and the Illinois affiliate office at 33 Bronze Pointe, Swansea. The Down Syndrome Association of Greater St. Louis 2001 Calendars, featuring pictures submitted by association members, are now available. $8.00 + $1.50 postage. Call Mark or Kristie Kimzey at (314) 918-0327. Regional Events March 10, 8:30 a.m. - 4:00 p.m. Down Syndrome Association of St. Louis Annual Educational Conference at the Maryland Heights Center, 2344 McKelvey Road, Maryland Heights, MO. Parent/Professional Keynote speaker Hank Edmonson presentation is "Positive Behavioral Support: Creating a Supportive Environment for Families, Students and Teachers."

The presentation has a three-fold purpose: a) to provide an overview of what IDEA has to say about behavior/discipline, b) to discuss what it means to "discipline" a child and c) to discuss a school/community model for supporting students when their behavior impedes their learning. Sadie Hunter and Mia Peterson will make the Teen and Adult conference keynote presentation. Sadie Hunter has been an advocate since 1972, and is currently the state coordinator for People First of Ohio and the president of the ARC for her county. Mia Peterson, 26, is a self-advocate. She is currently employed at Capabilities Unlimited, Inc. as the Self-Advocacy Coordinator. Mia is co-editor of the newsletter Community Advocacy Press and board member for both the National Down Syndrome Society and her local YMCA. She also serves as president of the statewide organization, People First of Ohio. Mia and Sadie's presentation will be an introduction to rights, responsibilities, community awareness and how to connect with others in your community. For further information or to receive a conference flyer, call Karen Kramer at (636) 227-2105, E-mail: kkramer2@swbell.net January 25-7, 2001. Chicago Metropolitan Association for the Education of Young Children 2001 Annual Conference. The conference has a long history of providing professional development and training to those who work with young children and their families. moonlight is the newsletter of the Riverbend Down Syndrome Association. It is made possible by the William M. BeDell Achievement and Resource Center, 400 South Main, Wood River, IL 62095, (618) 251-2175. Editor: Victor Bishop Web Site: http://www.riverbendds.org/

STARNet Region IV

• Become familiar with the range of "typical" speech and language behavior
• Relate individual differences to developmental milestones
• Understand "typical" versus "delayed" versus "disordered" communication
• Learn how family language use and culture impact communication skills
• Explore the language/literacy link
• Learn when to refer to special education and related services.

February 9, 9:00 a.m. - 3:00 p.m. Central Auditory Processing presented by Jean M. Harrison, Ed.O., CCC-SLP, associate professor and program director of the speech-language pathology program in the Department of Special Education and Communication Disorders at Southern Illinois University in Edwardsville. The workshop will serve as an introduction to the hearing mechanism, the processing of auditory information, auditory maturation of infants, toddlers, and early school-age children, and indicators of central auditory processing problems. Location: Holiday Inn, Mt. Vernon, IL. For further information contact Kathy Hollowich, 397-8930, ext. 170, E-mail: khollow@stclair.k12.il.us

February 16, 9:00 a.m. - 3:00 p.m. A Transdisciplinary Approach to Evaluation and Treatment in Feeding Disorders in Young Children presented by Beth A. McEvoy, M.A., CCC/SLP, coordinator of Clinical Services at Southern Illinois University at Edwardsville. The presentation is designed to address the multi-faceted needs of children who present feeding disorders, birth to five years of age. Techniques for working with children who are non-oral feeders or in various levels of oral feeding/stimulation will be presented. For further information contact Kathy Hollowich, 397-8930, ext. 170, E-mail: khollow@stclair.k12.il.us

Resources

Legislation

Benjamin

An independent hearing officer, appointed by the Indiana State Department of Education, ruled this week, based on testimony presented during a due process hearing Oct. 16, 17 and 18.

Thomas Huberty, an Indiana University professor, ordered the Indiana Department of Education to appoint a monitor to assure the implementation of his order. This person will be required to contact the school at least once per month and provide a written report to the Indiana Department of Education Division of Special Education each month, with copies to the parents.

The Suttons' case consisted of six points, all of which the hearing officer supported in his decision.

Ben and Amy Sutton asked Huberty to decide whether Benjamin - who has been attending classes with non-disabled children since preschool - would be allowed to stay in his first-grade classroom at Parkside Elementary where a paraprofessional, trained in support strategies, would work one-on-one with him. They also asked for appropriate supports and modifications to the curriculum.

The parents pointed to extensive evidence suggesting all students benefit when a disabled child is placed in a regular education room. The school argued Benjamin would be better served spending the majority of his time in a pull-out program with a teacher specifically trained to work with children with special needs.

"The decision means Benjamin will finally be provided the education he's had a right to all along," Julie Carter, the attorney representing the Suttons, said Friday night. "But it's a bittersweet victory because the school year is half over, and he's been struggling in the classroom without proper support, and with school personnel with little or no training."

The key to the decision, Carter said, is Huberty's affirmation that Benjamin remain in a regular education classroom.

Furthermore, she said, the hearing officer "confirmed the parents' assertion that everyone involved needs to have the appropriate training and support. It needs to be a team approach, from the administration on down. I think you see that reflected in his order for training for the staff, and for consultation time."

The hearing officer ordered the school obtain one or more consultants with expertise in the inclusion of children with disabilities in general education, and in working with children with Down syndrome. The consultants are to work with the teaching staff, parents and paraprofessionals in developing a plan to address Benjamin's needs in the classroom. They are also to provide training to the staff and participate in a case conference to develop a final set of goals and objectives for Benjamin's Individualized Education Plan.

A major concern brought forth by the Suttons during the hearing was the lack of knowledge school personnel had in helping a child with Down syndrome.

"I do know Benjamin's aide didn't have training, and the evidence was clear she had not seen the Individualized Education Plan. She had no knowledge of Down syndrome other than the fact that Benjamin had it," Carter said.

"The other staff, as well, had little if any training in including students with disabilities in the general education classroom.

"The hearing officer's order that the school pay for a consultant is really a victory for the parents, and it definitely is going to have a far-reaching effect for other students in the co-op who only stand to benefit from the mandated training."

Another important outcome, Carter said, was the officer's assertion that the parents are equal partners in the educational process and should be included as integral members of the team.

"That clearly was not happening this year," Carter said. "If you look through the orders, there are several points he makes, assuring the parents will be invited to meetings and have access to the classroom.

"It's not the first time parents who have filed for a due process hearing have had a school district deny them equal access to the classroom."

Huberty ordered the school provide a written summary of Benjamin's progress to the parents every two weeks.

Lakeland School Corp. operates its special education programs under the umbrella of Northeast Indiana Special Education Cooperative. Under the co-op, special needs students receive services in member school buildings throughout LaGrange, Noble, Steuben and DeKalb counties. Students ride buses to the building that provides the particular services they need.

The school corporation and the co-op have 30 days to appeal the decision. The ruling came in late Friday afternoon, and school officials were unavailable for comment.

The parents, Carter said, will be requesting their attorney fees be covered by the school, as provided for by the Individuals with Disabilities Education Act.

Whether or not this case impacts other students attending co-op schools is largely dependent on how the school district responds to the order, Carter said. "It's unfortunate in this case that the financial and human resources that could have been used to include Benjamin in the classroom were instead expended to exclude him."

After spending 19 days tied to a flagpole at Blaine-Buffalo Elementary School in western Washington County, Deanna Lesneski last night packed up her lawn chair and jump ropes, ending her protest over how her special-needs son is being educated.

Lesneski, 47, of Buffalo, met with about 20 officials from McGuffey School District, Washington County Intermediate Unit One and the state Department of Health for four hours yesterday to iron out an agreement for the hiring of an aide for her 7-year-old son, Ryan "Max" Lesneski, who has Down syndrome, asthma and a hearing disability.

Lesneski said officials from the intermediate unit agreed to take over the hiring of the aide, who should be in place by Monday. She had maintained that the district mishandled her son's education by not providing him with an aide proficient in sign language and by not administering his medications. The intermediate unit receives federal funding for special education students and will help fund the aide's salary.

Lesneski said she met the aide yesterday and was satisfied that she and Max would get along well. The aide, she said, is to work one-on-one with Max for seven hours a day, five days a week.

Lesneski said two of Max's therapists, her attorneys and a representative from Tri-County Patriots for Independent Living, a disability rights organization in Washington, Pa., also attended the meeting. Members of the group and other supporters had joined Lesneski early in her protest, staying at the flagpole in shifts.

Earlier this month, the district hired a teacher of the deaf for Max, briefly ending Lesneski's protest. But Lesneski said the teacher did not work as closely with Max as promised, and the teacher resigned after one day.

Lesneski began her protest Aug. 28, the first day of school, when she said she was informed by district officials that they would not be administering Max's asthma medications this school year. She set up a lawn chair and used jump ropes from her car to tie herself to the flagpole, beginning a protest that would draw media attention from as far away as England and earn her the nickname "Flagpole Mom."

In a meeting last week with a mediator from the Department of Health, district officials agreed to modify a policy to allow Max to carry his medications, including a puffer.

Currently, only the school nurse can carry and administer medications.

The agreement also would allow a licensed practical nurse who works as a clerical aide in the building to administer his medications, Lesneski said.

A registered nurse who works one day a week in the building had been the only employee permitted to give medications.

Both agreements were used yesterday to form a new Individualized Education Program that spells out specific services to be provided for children such as Max, who cannot communicate with his teachers or peers because of his hearing disability.

A previous program ironed out for Max in February included a 13-point agreement that called for the hiring of an aide proficient in sign language, an extended school year and inclusion training for the community and district employees. Lesneski filed a federal lawsuit in March, claiming the district reneged on the agreement.

In all, Lesneski said she has been at odds with the district for three years over Max's educational and medical needs. She said she is glad it's over, and promised to strap herself to a flagpole in Harrisburg if anything goes wrong with the latest agreement.

"This is all I've ever wanted," she said.

"I'm delighted to be home. I'll be putting my kids to bed tonight."

Down Syndrome Articles

Lydia Orso

"The first day I didn't want anything to do with her," Orso says frankly now other emotions after hearing the news. "I felt like someone had taken the baby I had and replaced it with this baby I had never seen before."

Orso, a teacher, soon went to the library to research her daughter's condition. What she found horrified her even more: Old photos of adults with Down syndrome wasting away in drab institutions.

"I saw no future," she says. "I saw her as a total burden and nothing could be done."

She found out she couldn't have been more wrong.

Now 22, Lydia, along with her two sisters, is the light of Joe and Linda Orso's life - and just about everyone else she meets. She can play the piano, sings in the church choir, loves to type at the computer, has a college degree, enjoys pizza parties and held a steady job at the Bank of Edwardsville before the family moved to St. Louis earlier this year.

This Saturday, she will share her story at the Southern Illinois Starnet family conference at the National Shrine of Our Lady of the Snows here. It's a story of hard work, a few tears and lots of love that's bound to inspire other families of children with disabilities who come to hear her.

And, if there's one thing Lydia's not afraid to do it's speak up.

"I'd like people to know that I am very sociable - people with Down syndrome can be sociable - and that I live my day like everybody else," she said as she relaxed on the sofa in her family's comfortable Clayton home.

"I don't think much about having Down syndrome. I want people to know that people with Down syndrome can have fun and they can live their live their lives and make their own decisions and choices."

Somehow, Linda Orso says she knew things would turn out as they have a couple weeks after she received the devastating news in 1977. Distraught, she was introduced to Sheila Hebein, who now heads the National Association for Down Syndrome in Chicago (www.nads.org).

"And, Sheila brought pictures of her son at the beach," Orso said. "And, I distinctly remember those pictures of a happy little boy with Down syndrome doing typical children's things with his family. He looked happy. They looked happy. They were not a devastated unit. I know that made a big impression on me."

With that support, which Orso calls critical, she went to work to help Lydia achieve her utmost potential. She nursed her often to help her develop the muscles around the mouth.

Since people with Down syndrome often have a tongue too big for their mouth, she would give Lydia's tongue a little flick every time she saw it sticking out so Lydia would learn to keep it in. She started speech therapy when Lydia was just a few months old, even though the Orsos had to pay for it themselves back then.

Making matters harder, the Orsos' third daughter came along two years later. How could they give 7-year-old Melanie and newborn Angela the attention they deserved while giving Lydia the extra care she needed for a condition that usually results in mild to moderate impairment of mental abilities?

"Stimulation was very important because as a baby she would sit in that playpen and probably be quiet all day long," Linda said. "So you get her up, you put her on the counter and go, 'Yeah, I'm making dinner now' and the radio's going and 'Here's some carrots, carrots are orange.' A lot more of that kind of stuff. Just constantly."

Today, Lydia says, the sisters love each other "to death."

"My sisters - they're like incredible," Lydia says. "They helped me understand things, took me places, shown me what's around and what's fun and helped me learn things. Like one time I made dinner with my sister and she helped me cook. They've been an inspiration to me."

That goes doubly for Mom and Dad. Throughout Lydia's education, the Orsos were constantly coming up with ideas and then fighting to implement them so that Lydia could get the most from her schooling.

"I knew I didn't want her in a segregated special school separate from everyone else because she showed so many possible interests," Orso said. "When she was in a more segregated environment she would pick up bad habits. I wanted her to mimic the right stuff."

So, the Orsos fought tooth and nail to have Lydia included in regular art and music classes in grade school. When one teacher complained that Lydia was always arriving late. Mom went to school and found her daughter was stopping at the library aquarium to watch the fish. Once this glitch was corrected, things went fine.

She remembers when the local park district refused to allow Lydia to play softball on a summer kids league because fathers "shouldn't have to deal with a special needs kid." So Linda volunteered her husband to coach and, again, everything clicked. In fact, when Lydia startled herself once by hitting the ball, the opposing team cheered for her to drop the bat and run to first base.

"So, I'm really into team-working at schools," she said. "That's what I think was my best way of dealing with obstacles was figuring out some solutions rather than just saying, 'This is a problem. You figure it out. It's your job.' And, for us, it worked." "I want people to know that people with Down syndrome can have fun and they can live their lives and make their own decisions and choices"

Her family's determination apparently rubbed off on Lydia, who often was subjected to the taunts of other students.

"They would call me jerk, idiot - the usual name-calling kind of thing," Lydia' recalls. "And, I didn't care a lot about that. I guess I just ignored it and I got through my day just perfectly. And sometime, I thought, I will get even with them, but that doesn't solve anything."

Lydia achieved her revenge through her accomplishments. As a high school freshman, she became the first student with a disability to be accepted into an elite girls club at New Trier High School. She also was a much-loved manager on the varsity volleyball team.

"So, she had opportunities like that that happened naturally," said Orso. "You know, this whole 'inclusion' thing, we weren't forcing anything. She was valued and she was accepted."

Life became more difficult when Joe Orso decided to move closer to his family in St. Louis, and Lydia became the first person with Down syndrome to enter Edwardsville High School. Coming to school to observe as she often did, Linda Orso once found her daughter sitting quietly trying to do math in a room surrounded by students with behavior problems.

"So it was tough, but there were many good hearts there," Orso said. "Many people wanting to try to make something work in a system that wasn't ready for it."

After graduation, the Orsos found an oasis in a unique program at Lewis & dark Community College. With federal funding, the school now offers the Supported School-To-Work Program for students with developmental disabilities.

After earning an associate of general studies degree, Lydia, along with a job coach, moved on to do mail and other clerical duties at the Bank of Edwardsville, both paid through the program. Then, came the big step: They asked the bank to hire Lydia.

At first, the bank declined, saying Lydia made too many mistakes. That's when the college and the Orsos decided to find out why.

"It turned out they didn't want to tell her the mistakes she'd make because she's so sweet, they didn't want to hurt her feelings," Orso said. "So, Lydia spoke up and said, 'Well, you have to tell me when I make a mistake because I want to be the best employee you've ever had.' So we put the coach back on the job to teach other employees how to talk to Lydia when she made a mistake."

When Lydia left the bank a few months ago, it took four people to carry out the gifts while tears streamed down most faces. One woman, who Linda thinks was leery of her being hired initially, said, "She's such a special girl. She's taught us so much."

"I had to move on," Lydia said. "But I'm still a little sad. I miss them very much."

But the Orsos found that they had unthinkingly segregated their daughter at their country home. Lydia was beginning to spend much of her day in front of her computer. So the Orsos moved to bustling Clayton, where Lydia recently had a job interview, where she was finally able to join a choir at St. Joseph's - and where there are more opportunities for supportive independent living.

Lydia sounds as though she could hardly be happier.

"I've had a lot of accomplishments and I'm really proud of that," she said. "In high school, I was scared because people would make fun of me and I didn't know if I was going to make it. Now - and in college - I don't have any doubts."

When Sarah Beddor entered the world in fall of 1999, her mother, Gail Dorn, felt fearful—for about 24 hours, she said. From then on, Dorn and her husband, Steve Beddor, discovered that support, understanding, inspiration, and joy surrounded them and their little girl with Down syndrome.

'This is an incredible experience, one we never expected. We are blessed," said Dorn.

Sarah is the youngest of Five children in the Dorn-Beddor family. She has two teenage stepsisters, a four-year-old brother, and a three-year-old sister. When she smiles and reaches out her arms to her siblings or parents, she conquers them all. "I feel so lucky, so privileged.

Sarah's birth with Down syndrome is one of the best things to happen to me and our family," said Dorn. She explained:

• Sarah is very social and has a sweet nature. She responds to people—and people respond to her. Her personality brings delight to those around her.
• Having Sarah in their family offers Dorn and Beddor an opportunity to teach their other children about diversity, patience, and respect for all lives. It broadens their perspectives and enriches their characters. "What a metaphor for life for my other children!" said Dorn.
• Having a child with a disability has introduced the family to a new community of other families of children with disabilities. Through their school district, the family found a parent group that offers a "great" social outlet. "It's a relaxing place to be—totally accepting," said Dorn. She has found there is kinship and great resources among other parents of children with disabilities—no matter what the disability. Dorn finds her own source of strength through others, she said.
• Beddor and Dorn are expanding their intellectual horizons. They are learning about Down syndrome and about rearing a child with a disability—"so we can educate other family members." said Dorn.
• Their family has drawn closer through Sarah's challenges. "It's a wonderful experience to share her successes with your spouse," said Dorn. Their children adore Sarah. The couple's extended family has been supportive, as well. Dorn's sister observed, "Sarah is everyone's baby."

Late in her pregnancy, Dorn's instincts told her the child would have Down syndrome. Prenatal tests indicated otherwise, however, and doctors assured her everything was Fine. Nevertheless, on the way to the hospital to deliver, she asked her husband, "Are you ready for a child with Down syndrome?"

When Sarah was born, Dorn's First feelings were of fear, she said. She wondered, "How will rearing this child affect my other children?" "Who will care for her if something happens to Steve and me?"

Dorn's concerns eased through two factors.

• Her stepdaughters visited at the hospital the day after Sarah's birth. The teenagers attend school with students with Down syndrome and other disabilities, the result of the Individuals with Disabilities Education Act (IDEA) and other civil rights legislation. Their exposure to disabilities helps them accept diversity, Dorn said. The girls were excited about the new baby and "totally comfortable with her and her disability." said Dorn. It was a defining moment. Dorn said. From that point, she began to educate herself about the positive aspects of rearing a child with disabilities.
• Dorn also began to educate herself about Sarah's disability. A nurse gave her an early childhood booklet for parents published by PACER. In addition, another mother of a child with Down syndrome visited Dorn and her husband in the hospital to share resources and to answer questions. "As soon as I started to read the materials, I just relaxed," Dorn said.

Sarah Beddor

When she came home from the hospital, Dorn began to further her education. As she explored the Internet, read books, and contacted health and education professionals about Down syndrome and disabilities, she was encouraged. She envisions Sarah learning to read, participating in Special Olympics, perhaps even marrying.

Others parents of children with disabilities, including a relative of her husband, offered optimism and insight. Shortly after Sarah's birth, the relative visited accompanied by her adult son, who has Down syndrome. The event brought a treasured memory for Dorn. The young man was entranced with Sarah and interacted with her throughout the visit. As he and his mother were leaving, he bent down and said softly to the baby, "God bless you, Sarah."

That experience helped offset some of the less fortunate ones, such as receiving several sympathy messages instead of celebration cards at Sarah's birth.

In her 10 months of parenting Sarah, a healthy little girl, Dorn has discovered that "raising this child is only 10 percent different from raising our other children." Although Dorn acknowledges Sarah will have challenges due to her disability, she points out that each child is unique. As she grows up, Sarah will be treated as the family's other children—with the knowledge and understanding that she will be "her own person," Dorn said.

Sarah's four-year-old brother summed up the family's feelings about its youngest member shortly after Sarah's birth. He was very excited about the newborn and had frequently begged to hold the baby. One day after Sarah's bath, the little boy asked again to hold his sister.

Dorn spontaneously laid the unclothed baby in the little boy's arms. He held Sarah, looked at her, then breathed, "Oh, Mom. She is just perfect."

1. Educate yourself as quickly as possible. Knowledge can dispel fear. Dorn found information about Down syndrome and rearing children with disabilities through books, the Internet, professionals, family and friends, and a parent group in the school district. PACER also provides many resources.
2. Surround yourself with people who understand. Dorn made a conscious decision to be with individuals who offer a positive outlook on rearing Sarah. "That gave me a lot of strength," said Dorn.
3. Involve your other children and family members. They can contribute much to Sarah's welfare—but they receive much through the joy that Sarah bestows.

4. We have found our spiritual life has been strengthened by this experience. It is a peaceful thought to know that God created all life to be respected and loved. We feel our family is blessed to have been given the gift of Sarah.

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