February 2005 Issue

Our parent support group has scheduled monthly meetings the first Friday of each month at St. Paul's Lutheran Church, 106 N. Border St., Troy, IL 62294 from 6:30 p.m. - 9:00 p.m. From 55/70, take the Troy/162 exit (#18). Go east on 162 towards Troy. Go 1.3 miles. Turn left on West Clay Street. Parking lot will be on your left.

The Southern Illinois University at Edwardsville, Department of Kinesiology & Health Education, presents a Physical Activity Lab, Spring 2005, Wednesdays, 5:00 - 6:30 p.m. March 2, 16, 23, 30; April 6, 13, 20, 27.
This is a free Inclusive Motor Development Lab for children ages 3 - 18 (with and without disabilities).
For more information contact:
Tammy L. Burt, Ph.D.
E-mail: tburt@siue.edu
Department of Kinesiology & Health Education
Southern Illinois University Edwardsville
Vadalabene Center, Campus Box 1126
Edwardsville, IL 62026
Phone: (618) 650-2876
Fax: (618) 650-3719
Ibata looking to make changes on school board. Concern over safety issues leads to local man's candidacy by Larry Ingram, Staff Writer. Edwardsville • Glen Carbon. A Suburban Journals Publication. Volume 46, Number 49. Wednesday, December 8, 2004. Reprint permission granted by Harry Weiner, Managing Editor, Madison County Journals, 344-0264, ext. 136. E-mail: hweiner@yourjournal.com.

Ibata says there are many good things about the Edwardsville School District. In fact, the district's reputation is one reason he and his family moved to the area, he said.

But he also believes the district could be improved, he says. And that is why he is running for the school board.

Ibata cites communication problems between the teachers and the administration as one area that needs improvement.


"I think a lot of teachers are afraid of the administration," Ibata said.

"It seems that the communication channels are not open."

Ibata said his impression is that Superintendent Ed Hightower's intent is to run the school district like a business.

Ibata said the Edwardsville schools are known as one of the better districts in the bi-state area and are the reason why he and his family of five moved in 2001 from University City to Glen Carbon, where he now resides. He added that the district also has some of the best teachers in the bi-state area.

But Ibata said he began thinking about running for school board when he heard statements from the district in the spring that it has been non-compliant with some safety-related issues with school buildings.

Ibata pointed to his own experience in dealing with a safety issue at a school his child was attending as evidence that shows that school officials at the district are afraid to take action.

"I had been trying to work with the school district in trying to get some of the obvious safety hazards remedied for almost a year now," Ibata said. "I have been completely ignored during that time."

Ibata said one of his children attended N.O. Nelson school, where he noticed a safety hazard that he mentioned to the school administration. He said he first mentioned it to N.O. Nelson staff in November of 2003.

Ibata said he pulled his child from the school at the end of January 2004 because of safety concerns.

Ibata sent a detailed letter and an overall description of safety code violations at N.O. Nelson school in January to Madison County Regional Superintendent of Schools Harry Briggs.

Ibata said there were electric circuits in a classroom located near water faucets at the school that needed to be replaced to reduce the risk of electrocution. He also listed a number of safety hazards at the school, among them, that a 125-volt countertop outlet in a special education preschool was not correctly grounded.

Hightower said all of the district buildings are code compliant.

"That's why we are doing much of the Life/Safety work that we're doing right now," Hightower said. "We are bringing all of our buildings up to Life/Safety code."

"He is trying to make an issue of something that is not (an issue)," Hightower said.

moonlight is the newsletter of the Riverbend Down Syndrome Association.

Editor: Victor Bishop
Web Site: http://www.riverbendds.org/

In October, the district board approved $5.2 million in Life/Safety bonds that will be used for improvements to district school buildings that are required to keep buildings in compliance with the state building code.

The district has completed numerous projects in various school buildings that are designed to make buildings safer for staff, teachers and students.

Much of the work is completed during the summer months of June and July.

Life/Safety related work that was completed at N.O. Nelson school over the summer includes plumbing upgrades, boiler replacement, dishwasher, oven and kitchen hood and replacement of the fire suppression system in the kitchen.

Hightower would not say if the specific safety related issues that Ibata raised were addressed or fixed.

Ibata says his work as a disaster volunteer with the American Red Cross in Chicago is why he is an advocate for fire and school safety.

Ibata works as a clinical research coordinator for the St. Louis University School of Medicine and is pursuing a Ph.D. in environmental health and safety and a law degree from St. Louis University as well.

From 1996 - 1999, Ibata worked at New Trier High School in Winnetka as a chemical hygiene officer.

Regional Events

March 11. 8:300 a.m. - 4:00 p.m. Helping Children with Down Syndrome Learn Workshop. Sponsored by the Down Syndrome Association of Greater St. Louis and the Special School District of St. Louis County.
Presenter: Susan J. Peoples, author of Understanding How Children with Down Syndrome Learn and parent of a child with Down syndrome. URL: http://www.specialoffspring.com.
Location: Sheraton Hotel, 7730 Bonhomme. Clayton, MO 63105. Parents: $35; Teachers/Professionals: $40. For more information contact the DSAGSL at 8420 Delmar Blvd., Suite 506, St. Louis, MO 63124. (314) 961-2504, E-mail: dsagsl@msn.com.

March 12. 8:30 a.m. - 4:30 p.m Courage to Look Forward. Down Syndrome Association of Greater St. Louis 2005 Annual Educational Conference for Parents, Caregivers, Relatives, Friends, Professionals and Young Adults. Keynote Speaker: Derrick Dufresne, "Building Brigdes to the Future." Clayton High School #1 Mark Twain Circle, Clayton, MO 63105.
Registration fee: single: $30; two: $55; three: $75. For more information contact the DSAGSL at 8420 Delmar Blvd., Suite 506, St. Louis, MO 63124. (314) 961-2504, E-mail: dsagsl@msn.com.

STARNet Region IV

March 11, 2005. Registration: 8:30 a.m. Workshop: 9:00 a.m. - 3:00 p.m. Bullying 101: The Basics: A Comprehensive Approach to Bullying Prevention. Frontier College, Rooms #104-105, 2 Frontier Drive, Fairfield, IL 62837.
What do we know about bullying? Bullying is a learned behavior. Young bullies grow up to be abusive adults, and victims can suffer both physical and emotional scars from their experiences. In rare cases, bullying leads to violence. Extreme cases of violence are still the exception to everyday life in most schools, where bullying is less dramatic but far more common. In order to effectively control bullying, we must be able to understand and recognize the many forms of bullying. It is important to distinguish between those behaviors considered bullying rather than that of normal conflict. While it is easier to identify the blatant actions of picking on someone by pushing, hitting, or touching, it is the less obvious behaviors of teasing and intimidation that can be the most harmful to the victim and to the climate of the school.
Presenter: Jeff Franklin is the youth development/prevention educator for University of Illinois Extension in Jackson County.
Contact Person: Cheryl Neville, (618) 397-8930, ext. 166, E-mail: cnevill@stclair.k12.il.us.

Future Planning

SSI? Say What? Say What? Future Planning in Plain English, Vol. 1, No. 2, September 10, 2004 by Alexandra Conroy, Future Planning for Families with Special Needs. Waddell & Reed, Inc., One Oak Hill Center, Westmont, IL 60559. (630) 789-0044. Fax: (630) 789-8005.
This publication is for information only. Before making any financial decisions, please consult your benefits specialist, financial advisor or attorney.

What is SSI?

People with special needs are eligible for a number of government benefits through the Social Security Administration (SSA) There are three main kinds of SSA income benefits-all with similar acronyms. The next three issues will introduce SSI, SSDI and SSDAC.

SSI stands for Supplemental Security Income. SSI is a needs-based, means-tested benefit. You do not need to have worked and paid into the Social Security System in order to receive SSI. You do have to demonstrate need. Need is defined as having means-income and resources-below a certain level.

What are the basic SSI requirement?

To receive SSI, you must

What does 'to have a disability' mean to the SSA?

For the purposes of the SSA, 'to have a disability' is defined primarily in terms of capacity to earn money. A person is considered to have a disability if he or she has a physical, cognitive or emotional impairment which makes him or her unable to engage in Substantial Gainfully Activity (SGA). For 2004, SGA is defined as employment which can generate $810/month in countable income. This means that if you have an impairment and cannot earn that amount on a regular basis, you have a disability for Social Security purposes.

Blindness is considered separately from other disabilities. For Social Security purposes, the designation 'blind' in SSA terms also has income criteria, but for historical reasons, it has been indexed for inflation and it currently significantly higher. If you are blind, your employment is considered Substantial Gainful Activity if you can earn more than $1,350/month.*

*Social Security Administration Programs Operation Manual System. http://policy.ssa.gov/poms.nsf.

How much money can I earn and still receive SSI?

If you are over 65 or have a disability you can earn up to $810/month of countable income and still receive SSI. If you are blind, you can earn up to $1350/month of countable income and still receive SSI. Countable income is your gross wages less certain exclusions, including exclusions for impairment-related work expenses. Talk to your SSA benefits planner or personal financial advisor to make sure you are taking advantage of your allowable exclusions.

How much money can I accumulate and still receive SSI?

In addition, you cannot have more than $2000 in liquid assets ($3000 for a couple) and continue to receive SSI. Examples of assets that the SSA counts towards the $2000 limit are: savings and checking accounts, mutual funds, stocks and bonds. Your residence, home furnishings, clothes, small, non-cash-value life insurance policies, primary vehicle below a certain market value and some other assets do not count toward the $2000 limit. Money set aside in a Ticket-to-Work PASS account does not count towards the $2000 limit. We will introduce aspects of the Ticket-to-Work program and PASS accounts in a later issue.

For more specific details on income and asset calculations for your particular situation, please contact your SSA benefits specialist, case manager or financial advisor. Contact information can be found in the sidebar on the first page of this newsletter.

Can a child qualify for SSI, and what are the criteria?

Yes, a child with a disability or who is blind can qualify for SSI. In this case in addition to assets in the child's name, parental assets are deemed to be available for the child and counted towards the asset limit. Certain parental assets are excluded from consideration.

When the child turns 18, he becomes a legal adult and is considered for SSI eligibility primarily on the basis of his own earnings and assets in his own name. If she still lives at home, benefits may be reduced because the child is receiving 'in-kind' support from the parents. If the child of 18 or over can demonstrate that she is paying a fair share of the household expenses, she may continue to be eligible for full SSI benefits.

Down Syndrome Articles

Ginkgo biloba in Down Syndrome. Phytomedicine 11 (2004) 469. Reprint permission granted by the principal author and Martin Huber, Rights Manager Journals, Elsevier GmbH, E-mail: m.huber@elsevier.com. © 2004 Elsevier GmbH. All rights reserved. www.elsevier.de/phymed.

A cholinergic therapy based on the use of Donepezil has reported good results in four adults with Down Syndrome (DS) (Kishnani et al., 1999). Kishnani and colleagues took into consideration similarities between the neurobiology of Alzheimer's Disease and of DS.

Ginkgo biloba (standardized extract EGb 761) has shown the same efficacy as Donepezil and other cholinesterase inhibitors in the treatment of dementia (Wettstein, 2000). Ginkgo standardized extract also seems to have a direct effect on the cholinergic system (DeFeudis and Drieu, 2000). In individuals with DS, therapy with standardised Ginkgo biloba extract could be an effective aid to cognitive and social skills intervention.

We examined two young patients with trisomy 21 (diagnosed by cytogenetic analysis) to verify this hypothesis. They were not affected by cardiac or other malformations nor had they other significant medical conditions. A psychiatric assessment was performed using a semi-structured psychiatric interview for children and adolescents (K-SADS PL 1.0). It was necessary to exclude any bias due to change in psychiatric conditions during therapy. Patients did not show significant psychopathology. Mental retardation was diagnosed through the use of the age-appropriate Wechsler Scale, and an Italian complete version of the Vineland Adaptive Behaviour Scale.

Medication was given during the summer holidays, when school, rehabilitation and educational training are suspended. In both cases informed consent was obtained from parents.

The first case involved a boy 10 years 11 months old with an I.Q. of 40 and a Vineland scale total score of 455. He received standardised extract of Ginkgo biloba (GK 501, Pharmaton), at a dose of 80 mg every morning for 11 weeks.

After this period, a Vineland retest showed an improvement in total score: 497. This child showed a major improvement in personal autonomy with an increase of 16: he learned to put on his shoes and to tie his shoelaces. In social behaviour, an improvement of 8 points was recorded: he began to make friends spontaneously.

The second patient was aged 17 years and 8 months, and had an I.Q. of 44; the Vineland scale total score was 721. The patient received Ginkgo biloba GK 501, at a dose of 120mg every morning for 13 weeks. Vineland retest showed an improvement, with a total score of 758. An increase of 8 points in writing scores was recorded; the boy began memorising and writing more than 20 words and writing little notes spontaneously. The patient showed an improvement in imitation score (8 points). He had a better control of impulsiveness and anger.

None of the two patients had side effects during therapy.

These results seem to indicate that, in DS patients, GK 501 therapy could be effective on improving social and academic skills. Usually, DS people do not show spontaneous improvement in the space of 3 months. A double blind controlled trial is of course needed to demonstrate the efficacy, safety and effectiveness of Ginkgo biloba extract in DS.


DeFeudis, F.V., Drieu, K., 2000. Ginkgo biloba extract (EGb 761) and CNS functions: basic studies and clinical applications. Curr. Drug Targets 1 (1), 25-58.

Kishnani, P.S., Sullivan, J.A., Walter, B.K., Spiridigliozzi, G.A., Doraiswamy, P.M., Krishnan, K.R., 1999. Cholinergic therapy for Down's Syndrome. Lancet 2, 353 (9158), 1064-1065.

Wettstein, A., 2000. Cholinesterase inhibitors and Ginkgo extracts-are they comparable in the treatment of dementia? Comparison of published placebo-controlled efficacy studies of at least six months' duration. Phytomedicine 6 (6), 393-401.

R. Donfrancesco
A. Dell'uomo
Department of Child Neuropsychiatry,
La Scarpetta Hospital,
via Valtellina 100, 00151 Roma, Italy
E-mail address: lascarpetta@libero.it

David and the World Trade Center by Linda Moran. Update, Winter 2003, the quarterly newsletter of the National Down Syndrome Society. Reprinted with the permission of the author. Copyright © 2002, Linda E. Moran. All rights reserved.

It was Christmas Eve Mass and the pews were packed with people and coats. Many of these people around me, I thought sadly, were hurt by the terrorist attack. Our town in northern New Jersey is a bedroom community of New York City, and our parish alone lost twelve lives in the World Trade Center attack. I wondered what this was like for them today, a day that is supposed to be so filled with joy.

So packed like sardines were we, that I couldn't help but to strike up a conversation with the woman next to me. "Yes, I have four kids, in fact, but three of them are not in this pew—they're up there in the choir," I said. "See the little boy with Down syndrome? He's mine. And the two girls next to him." "Oh," she said with surprised delight. "You're David's mother!"

That was a phrase I was used to. It seems everywhere I go, I meet people who've been blessed by my nine-year-old boy. But this day I'd hear a story to exceed all others. The Christmas Mass hadn't started yet. We'd gotten there early for good seats, which left time for me to talk with this stranger next to me.

"In that case," she went on, "then I must tell you a story." "You see," she explained, "my husband used to work in the World Trade Center. In fact, he quit his job just two weeks before the attack. On that awful day, he lost dozens of friends, including about ten very good friends. One of them called us from the tower and told us he knew he wouldn't get out. We had so many funerals to go to that many of them overlapped. We were only able to make it to seven in total. We were numb and crying. Our worlds were so shattered, and we had survivor guilt on top of it all. My husband's grief was overwhelming, and I didn't know how to help him. Just days after the attack, we went to church, and happened to sit next to your family, with your son closest to us, while you and your husband were at the other end of the pew, and probably didn't see what happened."

"No," I said, intrigued, and hurting for her. "What happened?"

"I started crying uncontrollably, and then an amazing thing occurred. When the 'Our Father' prayer began, your son David reached out and gripped my hand. He held on all through the prayer, and didn't let go his grasp when it was over. And neither did I. Because at that moment, I felt a tremendous sense of peace and comfort."

My child could not have understood why she had been crying that day, but he certainly had understood what was needed. Now, hearing this story on Christmas Eve, I looked up at David in his choir robe, in awe—yes, of my son, but moreover, of God's greatness.

Linda Moran is a freelance writer and author of the cognitive therapy book, How to Survive Your Diet and Conquer Your Food Issues Forever. She and her husband, Mike, also author a free monthly subscribable newsletter for parents of children with disabilities on the topic of how to write a Letter of Intent. For subscription information, see www.betterwaypress.com/lifeplanners. See Moran's web site at www.lindamoran.net. The Moran family lives in Ridgewood, New Jersey.

What Autism Means to Me by Glen Sheppard

It was in my early teens before I remember anything significant. I thought that the lights only came on then, but now I realize it took me that long to find the exit. to my mind, which was as busy as the Metro in France. Who would believe that I would attend University after only a few years of schooling. Prior to any formal education, it's as if I was in a place where all this stuff called information was being poured in, but it didn't have an order or a reason for being there. I guess it was like living in a soup of sorts. It took 14 years for the soup to settle and something meatier to appear.

We had a good time as far as childhood was concerned. We had the usual family holidays and fun times, no harder or easier than other families with children who have a disability. I was always in the lowest classes in Special School, because I was unable to give appropriate responses when I was tested or even talked to. It wasn't anyone's fault that this happened, it's just the way things are if you have a communication disability like mine. I could speak in my head and see the words forming on others' lips, dropping sounds like music to my ears. It was frustrating and bought out some behaviour problems as I was angry with myself for being stuck in a body that didn't do what it should.

I was just grateful to be in an environment that accepted my differences and behavioural challenges. I think I needed these stepping stones to teach me more about myself and humanity. It's not what you get dished up in life that's important, but what you do with it when it is dished out that counts. I don't know where the knowledge came from or where it was stored in the soup but somehow the mind retains the most unexpected of things. Part of the foundation for my early learning was hours and hours of video's of Sesame Street and Play School, I loved them. It was also the environment I grew up in, a big extended family of 9 people, something always going on and someone there to play with me. My learning also came from watching people and watching the news on television. I could read a paper if it was left open, but I could not turn the pages. I found school boring as I had already grasped the necessary concepts, but of course I could not communicate this to anyone.

In 1996, when I was 16 yrs old, the most amazing thing happened, I was shown how to use a communication called Facilitated Communication (FC). My speech therapist came into my class and supported my hand while I pointed to letters on an alphabet board. Words became sentences that others could finally understand. It was the best day of my life. It was like being released from prison for a crime I didn't commit and this day marked the beginning of a new life for me. . You have to live in my shoes to understand why I have mostly been happy. My needs have always been met by my mother and in later years by my support workers. It is only certain times that I get frustrated with not being able to formally express my thoughts. The opposite of happy is having your soul not understood. I remember telling someone I did not like horse riding. Mum and all the teachers at school thought I loved horse riding. I hate horse riding, they are so big they frighten me, the bloody things made so much mess and stank. I could not believe they expected me to get on the things back! I used to grin and bare it, but now I have Facilitated Communication to say "no"! I haven't been on a horse since!

You wouldn't believe the changes that Facilitated Communication made to my life. All of a sudden I had a voice "more chips please Mum". After 16 yrs of silence I was going to make myself heard. Just because you don't have a voice doesn't mean you don't have feelings and opinions to express. After school I went to TAFE and did numeracy, literacy and art. I also finished three subjects in Year 10 in a regular Tafe course at Mooloolaba. It was around this time I discovered the love of poetry and wrote my first book. One of the poems from that book is called 'Mothers'.


Mothers are the most precious things on earth,
they give their love freely without asking for return.
We never really appreciate their love until they are no more,
we need to show more love and respect.
If I owned a mountain and all the trees were love,
I'd plant for her a forest to show how my love grows.
If I had an ocean and could move the tides,
I'd give her huge swells of appreciation and waves of love to ride.
If all the sky was mine and I controlled the birds,
I would send to my mother songs of praise upon their wings
and have them sing for her.
Mothers need our love as payment for their worth,
we put our wants first when our mothers should be first.

My life would be easier if I could write myself, but I cannot hold a pen properly. Sometimes I think of really great lines but it is hard to remember them when I next have someone to support me on the communication board. Poetry helps to put things in perspective. It show people what I am thinking and feeling and the context in which it was meant.

From the good old days of having fun when you are small to the times of fun when you are an adult. We find happiness in the unusual things like very funny jokes. Did you have fun as a child or was it a harrowing experience for you? The young years really do create the adult we are to become. I find life wonderful when I am at home in my comfort zone, my mother has always known what I have needed. However, now I am able to talk on the board, I can express my needs and feelings on many subjects. One thing is that, I have always felt left out when people are having a conversation. Unless someone is there to hold the board I cannot have input into the good old chats.

In one of my fun moods I was able to write this next poem which is in my new book "Elvis Has Left the Building" memoirs and poetry by Glen Clifton Sheppard.

Upside Down

Topsy turvey it goes
in the upside down world.

Chips are GREAT for you,
and vegetables don't exist
(except potatoes of course).

In fact, mothers would be forcing kids
to eat MORE chips.

There would be no such thing as FAT.
It is a struggle to stop
yourself fading away
Exercise would be against the law,
but swimming would be compulsory.
You would always wake up fresh
and go to bed exhausted.

Our Pets would serve us,
and go to work to pay our Doctor's bills.

Doctors would only prescribe more chips,
and lots of holidays...

The title of my book is the next poem, Elvis Has Left the Building
Autism creeps over me like a thick brown mist,
taking away clear thoughts,
leaving confusion and vacant places in my mind.
I hear people's voices; they sound so far away.
I feel as if I am in some other place.

I fight being trapped in cracks in footpaths,
swirls in carpets, patterns in tiles.
My perception of depth, width and height
is quite distorted.
A break in the footpath appears as an abyss,
so deep I must look like I'm drunk stepping so wide.

When I feel autistic my mind becomes
pebbles of rice swirling around so fast
it appears as a fog and then with effort, sorts itself out.
Autism is a strange disability: sometimes in a crowded room
I listen to conversations, having a great time,
then out of the blue, autism comes
and blanks out my mind.

That brown mist is back, I lose my direction
thoughts become erratic, sounds loud and confusing.
My senses scream as if being physically attacked.
I never know when the dreaded mist will strike.

When Elvis has finished his concert
his fans are screaming for more
but they are told "Elvis has left the building".
When autism takes over my body
it is like Elvis has left the building.
Thoughts leave my mind,
my body stands on stage,
unable to have a say.

Elvis has left us forever,
but I am still here, sorting out my mind.
From a vacant space on stage to a brown mist of confusion,
I struggle to clear my thoughts.
I could go crazy here in the haze of my distorted mind.
Glen on his 24th birthday
Glen on his 24th birthday

Autism with my Down syndrome is a bad combination of disabilities. I hate not being able to shower and dress myself, always trapped in a body that does not work to societies expectations. I need so much support from my family and support workers, they allow me to have a wonderful life, they are the centre of my world. It is very hard to imagine my life without their continued support.

Take the way I have been able to go to University this year. The support workers read to me and they take my notes on each lecture. The way it is working out is great. They have to be dedicated workers and know how the University system works. Last semester, I enjoyed doing Knowledge, Power and Society, I am going to embark on the rest of my Uni course with great enthusiasm.

Here is a little poem I wrote last week about university: My First Semester at University

University is a pain,
it was the thing that stretched my brain.
I did not know where I was.
Fear had me from the start,
now I know that I'm not so smart.

The first paper was just a pass.
Then came the big HD,
but it was the eleven hour exam,
that really buggered me.

I thought it could be done in a day,
but that was not the way.
We were given three days to complete the thing,
but what troubles it did bring.

The day we did it was not too bad,
but the next day we were mad.
My support worker was staring into space,
while I was in another place.

I pushed myself to finish the thing,
I felt like a bird with a broken wing.
I almost destroyed my brain,
and considered not going to Uni again.

The thing about it, that is the best,
is that I passed the test.
My support worker was like Rajah the cat,
on hot bricks all day and could not see the way.

So audience, if you think your learning curb is steep,
do an eleven hour exam and try to sleep.

You pushed me to finish the thing, I felt like a bird with a broken wing. You know that you were the cause that I don't want to go again and almost destroy my brain.

Father's Journal


There is a photograph etched in my mind as my son snorkels surrounded by opalescent fish. There is no negative, as I swim towards the surface to catch my breath to the world beyond to the hospital crib with an oxygen tent to where my son lay.

Web Wanderings

Watch the "Dreams" Video. Published: December 15, 2004. URL: [no longer available]
NDSS recently produced a short video (3 minutes, 30 seconds in length) titled "Dreams" that features children and adults who have Down syndrome talking about their dreams and what they're proud of in their lives. Click here to watch this fun and inspirational video that celebrates the work of NDSS and the Down syndrome community.