May 1999 Issue

The Third Annual Picnic will be held at Gordon Moore Park, in Alton, on Saturday, June 12th at Pavilion #2, next to the tennis courts, starting at 10:00 a.m. We encourage all families to attend and invite any family that may not yet be on our newsletter mailing list. Lunch will begin at noon: grilled hot dogs and hamburgers, chips and sodas will be provided. For more information contact Alice Pinkston.

Our past meeting was held at Good Shepherd Lutheran Church in Collinsville, IL with twelve families in attendance. The topic was "Transition from an I.F.S.P. to an I.E.P.". Peggy Mitchell discussed the steps taken to inform the school district about your child and your rights within those steps. Addressed were some common mistakes that schools can make in this process. Peggy included all steps up to, and including, the first I.E.P. with the district. The second presenter was Alice Pinkston from Gillespie, IL. She shared how I.E.P.'s can progress through the first few years after Early Childhood. Alice shared her experience going into an inclusion setting. We enjoyed a great Pasta Dinner and various desserts. There were materials available on several education issues and the fellowship was great. We had some great young ladies who babysat, in a beautiful nursery.
Our web site was favorably reviewed in the Summer 1999 issue of the Galaxy Region IV STARnet newsletter, page 13.

blank.gif  This should help us reach other area families with children with Down syndrome. We ask your help for a better coverage if you happen to meet, or know of, other parents with children with Down syndrome, so they can receive our free newsletter and be invited to our meetings and social activities. We all have dreams to fulfill for our children and changes come by unification and strength comes in numbers.

STARnet Illinois Region IV Workshops
June 22. 9:00 - 3:00 p.m. Toilet Education and other Toddler Topics. The goal of this workshop is to train professionals to help equip parents with practical alternatives to harmful responses. The focus of the workshop will be on normal development with an opportunity to discuss adaptations for children with developmental delays. Presenter: Debbie McClellan is a University of Illinois Extension Educator focusing on family life. Location: Holiday Inn, Mt. Vernon, IL. For information, contact STARnet at 397-8930.

June 29. 9:00 - 4:00 p.m. Mini-Conference 101 - Disabilities in the Early Years, will address the basic background and information regarding a variety of disabilities. Sue Brown, e-mail: will be presenting the Down syndrome workshop. Location: Marion Hotel and Conference Center.

July 15. 9:00 - 4:00 p.m. Mini-Conference 201 - Disabilities in the Early Years, will address more specific information around usable strategies for specific disabilities and the parents' roles in advocating for their child. Linda Orso, e-mail: will be presenting the Down syndrome workshop. Location: Collinsville Holiday Inn. Contact STARnet 397-8930, extension 168, for additional information on either workshop or either presenter, members of the Riverbend Down Syndrome Association, via e-mail.

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:

Regional Events
June 18, Springfield, IL. Legal and Future Care Planning for Your Relative with a Developmental Disability, Theresa Varnet, J.D., M.S.W. This workshop will address the unique needs that families have in planning for the financial and legal future of their relative with a developmental disability. Topics include: Negotiating the Social Security Maze; Preserving Eligibility for Government Benefits through Proper Estate Planning; Special Needs Trusts; Guardianship; Health Care Proxies; Selecting a Knowledgeable Attorney. Parent/Family member cost: $20.00. For more information call the Arc of Illinois (708) 206-1930.

The Illinois State Board of Education has revised the manual, A Parent's Guide: The Educational Rights for Students with Disabilities. To obtain a free copy, call (312) 814-5560.

The Illinois Secretary of State's Office has a complete list of disability resources: Service Guide for Persons with Disabilities and Parents of Children with Special Needs. Call (800) 252-2904 for a free copy.

The Down Syndrome Association of Greater St. Louis Monthly Parent Play Group meets every second Thursday of each month at 211 North Lindbergh from 9:30 a.m. to 11:30 a.m. Refreshments and cookies are provided. For more information call Karen Voda at (314) 645-8939.

Special Pals is a structured play group for children with special needs. Special Pals provides an opportunity to facilitate development of gross and fine motor skills for all participants.

Session One:
Ages 3 months to 48 months. Wednesdays, beginning June 30 - July 21; 3 to 4 p.m.
Session Two:
Ages 4 to 8 years old. Wednesdays, beginning August 4 - August 25; 3 to 4 p.m.
Saint Anthony's Wellness Center, Alton Square Mall. Fee: $30.00. For more information: 462-2222; to register: 463-5340.
News Clipping
'Dr. Mom.' Pediatrician Janis Robinson answers the call for caring by S. Paige Allen, May 9, 1999, page D-1, The Telegraph.

ALTON - Tending to sick babies. Mending broken bones and spirits. Reaching out to others with pure compassion of a mother. These are all in a day's work for pediatrician Dr. Janis Robinson. Not only is she the mother of six, she is like a "Dr. Mom" to hundreds of patients in the River Bend. [...]
By the time she completed her residency at Children's Hospital of Philadelphia in 1980, Robinson was the mother of three with another baby on the way. Siblings William, Marjorie and Katherine would soon be joined by baby Andrew.
"That was a difficult year. My mom developed cancer and passed away in three months. I was pregnant and trying to complete my residency. Meanwhile, we looked forward to Andrew's birth. Here was a new baby coming when I was so distraught after my mother's death. Then Andrew arrived and he had Down syndrome. He had to have a lot of surgeries and was on the verge of dying every other day. It was a rough time for us. I could not have done any of this without my husband. He was always a calm, steady force and the spiritual strength of the family."
In retrospect, Robinson admits even those "rough times" had some redeeming qualities. They not only have strengthened her family, but also have given her a practical rapport with the parents of her patients.
"Andrew's first year was up and down. Then, when he was 6 months old, I found out I was expecting Alex. After a year or so, Andrew's health stabilized and I took a break from my work and stayed home with the children. And I must say, those were some very good years that followed." [...]
"Having a handicapped child has also made me more sensitive to the needs of people who have children with problems. It is really easy to say, 'Go home and do this or that,' but when you've been there and had all those difficulties, you just realize it isn't so easy."
Drs. William and Janis Robinson share a staff and suite at 815 East Fifth St., Suite 209 in Alton. Above and beyond their commitments to their family and practices, the husband and wife team makes time to serve their church and many professional organizations. He is on the board of directors of William BeDell and she is on the infection control committee. Recently, she finished a two-year term as chief of the medical staff at Saint Anthony's Health Center and is on the board of directors for the Southern Illinois Physicians Hospital Organization Network. [...]

Scouting lets teen's life soar by Rob Hedelt, e-mail: March 25, 1999, The Free Lance-Star, Fredericksburg, Virginia.

Alan Street is poised to become the first disabled Scout in the Mattaponi district to earn an Eagle badge. He has had the unwavering support of his father, Richard Street. Mention Alan Street's bid to become an Eagle Scout, and it's hard to decide whose smiles with more joy: him or his dad.
The 16-year-old Spotsylvania County youth, a student at Massaponax High School, certainly has plenty to be proud of... Completing all the ranks and merit badges leading up to Eagle. Mastering Scout skills ranging from knot-tying to lamp-wiring. Making a troop full of friends who think the world of him.
Richard Street, Alan's dad, is proud of those accomplishments as well. For three years, the Transportation Department hydraulic engineer has been right there beside Alan in Boy Scout land, examining every requirement, overseeing the pursuit of each new merit badge.
He even became an assistant troop leader, even though he was never a Boy Scout himself.
But now, as the pair approaches this ultimate Scout honor-Alan will host a fund-raising lunch June 5 as his Eagle project-the father says it's satisfying on several levels.
It wasn't that long ago that he'd see people cross the street just to avoid having to walk near Alan.
"Just because he has Down syndrome, they'd do anything to keep from being close to him," said Street. "It never occurred to them that he's a person, too." Street has also been the one who watched his son progress through school programs that, as often as not, have steered him away from the "regular kids."
And he's the one who was saddened to watch Alan come home from school on too many days and plop down in front of a television, content to do little and interact with no one.
Looking for an activity that would involve him with other kids, Street turned to the Boy Scouts.
Watching Alan glide into Troop 835's meeting room at Five Mile Fork the other night, welcomed warmly by every Scout he saw, Street beamed like a harvest moon.
He's thrilled that the Boy Scouts of America-and this Spotsylvania troop in particular-have faced up to Scouts with special needs.
In fact, Alan isn't the only Scout working toward his Eagle rank in this troop, under new "disability rules" that make ranks and merit badges winnable for Scouts challenged in different ways.
One of his best buds in the troop is Matt Shomper of Spotsylvania, also working toward a coveted Eagle badge. Matt and Alan are in the same special education class at school.
Alan is on target to achieve Eagle rank first, which Scout officials said would make him the first disabled Scout to earn that rank in the Mattaponi District. [...]
Alan's Eagle project, the biggest part of the final step for that rank, is an example of the accommodation that has served both him and the troop.
Instead of some involved project building a nature trail or cleaning up a wetland, he's hosting a fund-raising spaghetti lunch from 11 a.m. until 3 p.m. June 5.
It will be held at Spotsylvania Moose Lodge No. 1655, near the AMF bowling alley on State Route 3 at Five Mile Fork.
Alan and his dad chose the lunch idea partly because Alan loves to cook spaghetti, and because it's a project he can handle.
With his dad's supervision, he'll organize the cooking, the help, the purchasing, the arrangements and the advertising.
The money raised by the event will benefit the local chapter of the American Red Cross and the Association of Retarded Citizens, which will have $5 advance tickets for sale.
But things like projects, ranks and badges are just the official Scout measures of Alan's success.
The thing that's most rewarding to him, and his dad, is the way he's been accepted, embraced even, by his peers.
To a youngster whose contact with other kids his age is somewhat limited, that acceptance is a big deal.
His fellow Scouts say the friendship is genuine.
"I'd do anything for my buddy, Alan, and he would do the same for me," said 16-year-old Ricky Roberson. "I'd love it if he makes Eagle. We'd all be very proud of him."
Fourteen-year-old Derek Hanlin, a Troop patrol leader, echoed those sentiments, "It's good to have Alan around. He truly is one of the guys. He always has a smile and wants to see all of us be happy."
Alan has one other talent the guys celebrate, too.
At Scout camp and a few other venues, the always upbeat Alan made quick friends with several girls, a talent appreciated greatly by his peers.
"He's a real chick magnet," said Derek, grinning. "That's another reason we like to hang out with him."
What's that line in the Boy Scout Oath? "A Scout is helpful."

Down Syndrome Newsletter Articles
Amendment to House Bill 1516 by Angie Eades, p. 2, excerpted from Network News. A newsletter of the Down Syndrome Network, April 1999, Rantoul, IL.

Did you know that there used to be a program that would fund school districts to train General Ed teachers in inclusive education? This program was called the Regular Education Initiative or REI. In the (early) 1990's school districts were awarded grant money that would allow a four day training with teachers, administration, aides and family members to learn how to better train a child in an inclusive setting. The money was actually very limited but it did allow at least one family to be sponsored by a district each year.
The total grant for the REI program was one million dollars and was spread out over the entire state of Illinois. Instead of seeing that this was a great program that needed expanding, the government decided to combine this grant with a much larger grant into one. By this the government took away the initial purpose of the REI program and combined it with no stipulations on its use. [...] I pursued the idea of having REI program reinstated. [...] From here an amendment was written to Bill 1516 stating that 5% of the Professional Development Block Grant be appropriated for school districts to encourage and explore innovative programs for educating children with disabilities in a regular education setting. [...]
So, providing everything goes as planned, and your child's teacher needs more training in inclusive classroom settings, call your school's administration and ask where the money from the Professional Block Development Grant is going. Keep in mind that the money is distributed automatically and the new amendment will be effective July 1, 1999. [...]

Illinois Abbreviations and Terminology
Compilation by Alice Pinkston, e-mail:
Label Abbreviations Used by School Districts in Illinois

LD Learning Disabilities
SLD Severe Learning Disability
SLD Specific Learning Disability
MLD Moderate Learning Disability
EBD Emotional/Behavior Disordered
BD Behavior Disordered
CI Cognitively Impaired
MI Mental Impaired
EMH Educable Mentally Handicapped
MMI Minimal Mental Impairment
TMH Trainable Mentally Handicapped
VI Visually Impaired
HI Hearing Impaired
PH Physically Handicapped
Oh Orthopedically Impaired
OHI Other Health Impaired
SPL Speech and or Language Impaired
DD Developmentally Delayed
AU Autistic
TBI Traumatic Brain

Other Abbreviations Used by School Districts
MDC Multi-disciplinary Conference
IEP Individual Education Program
ADD Attention Deficit Disorder
ADHD Attention Deficit Hyperactive Disorder
PDD Pervasive Developmental Disorder
OT Occupational Therapy
PT Physical Therapy
SI Sensory Integration
SWS Social Work Services
LRE Least Restrictive Environment
ESY Extended School Year
IGAP Illinois Goals Assessment Program
LEA Local Education Administration

The Language of Special Education
These terms are currently being used in the system to identify children with special disabilities.
AU Autism
BD Behavior Disorder
LD Learning Disabilities
ED Emotional Disorder
TBI Traumatic Brain Injury
MI Multi Impaired
VI Visually Impaired
HI Hearing Impaired
PH Physically Handicapped
OHI Other Health Impaired
SPL Speech Mentally Handicapped
TMH Trainable Mentally Handicapped
ADD Attention Deficit Disorder
MDC Multidisciplinary Conference
IEP Individual Education Plan

Related Services Terminology
PULLOUT A student is taken out of their classroom and taken to another room to receive services. GROUP A student receives services with other children.
CONSULTATION The therapy provides information and assistance to the classroom teacher.
CLASSROOM The child receives services in his/her classroom.

Web Wanderings
Treadmills Help Down Syndrome Kids Walk Sooner. Better Health.

NEW YORK (Reuters Health) — Children with Down syndrome who practiced walking daily on a scaled-down treadmill learned to walk about 3 months earlier than expected, according to experts from the University of Michigan, Ann Arbor.
Children with Down syndrome do not usually walk until they are about 2 years old, while children without the condition usually take their first steps between 10 and 14 months of age.
"The parents involved in the study found the results extremely encouraging," Dale Ulrich, associate professor of kinesiology and co-investigator of the study, told Reuters Health. "We're already getting calls from parents looking for the specially-made treadmills we designed for the study."
In the study, 15 infants with Down syndrome began walking on the treadmill with the aid of a parent 5 days a week once they were able to sit up independently for 30 seconds. They gradually worked up to 8 minutes a day. A "control" group of 15 children did not use a treadmill. All 30 Down syndrome children in the study received biweekly physical therapy services and exercises designed to promote motor development.
The children who received the treadmill training were able to walk on their own an average of 101 days earlier than the children without the treadmill training.
Walking is an important milestone in infant development because it forms a foundation for the development of subsequent physical skills, as well as social and cognitive skills, Ulrich explained. Research has also shown that mothers feel less stress when Down syndrome children can operate with a degree of self-sufficiency.
Ulrich believes that the treadmill strengthens the child's neural organization that underlies the stepping pattern, increases leg muscle strength, and develops postural control mechanisms needed to stay upright while transferring weight from one foot to the other.
Father's Journal
The taste of blood
At an Early Intervention Provider, whose name I shall not recall, my son Emmanuel was being subjected to wheelbarrows. To the chagrin of the Physical Therapist (PT), Emmanuel bore his weight on both hands, and then on one. The PT proceeded to push Emmanuel to walk on his hands, past the rubber mat, where he fell face first, hitting his mouth on the floor. Under the supervision of the PT, I wiped the blood off my son's 10 month-old lips.
"We're not even sure that this study utilized the treadmill in the most optimal way," he said. "We suspect that small weights on the ankle, or possibly some other interventions, might speed up the child's walking ability." [...]
Ulrich believes that treadmill exercise may prove even more valuable to Down syndrome patients. "Forty percent are born with cardiac problems, and other research seems to indicate that gaining excess weight by age 3 is common and may be caused by a lower resting metabolism. We're wondering if we can change that profile by having Down syndrome patients use a treadmill throughout their lives," he said.
Down syndrome, a congenital condition, affects about 1 in every 800 children born.
Ulrich presented the study findings at the Gatlinburg Conference on Research and Theory in Mental Retardation and Developmental Disabilities, held in Charleston, South Carolina on Friday.