February 2003 Issue

Our next meeting is Friday, Feb. 7th, 7:00 p.m. at Alfonzo's Pizzeria, 288-5701, #2 Schiber Court, Maryville, IL.

The Parent's Networking for Children with Down Syndrome will have their next meeting on Friday, Jan. 31st 2003 at 7 p.m. at Special Children Inc., 1306 Wabash Avenue, Belleville. For further information contact: Ann Lee 239-6351 or Kathleen Cullen 234-6876.
Down Syndrome 2003 Calendars may be purchased from the Down Syndrome Association of Greater St. Louis by mailing a check or money order for $12 to: DSAGSL, 8420 Delmar, Suite 506. St. Louis, MO 63124.
Enclosed is a brochure from Special Reads for Special Needs.

STARNet Region IV
February 21. 9:00 a.m. - 3:00 p.m. Merging Early Learning Standards with IEP's. Strategies for writing meaningful and productive IEP goals and objectives will be addressed from both the legal and practical sides. Presented by Vaughn W. Morrison, MS Ed and MSW and was employed 26 years by the Illinois State Board of Education (ISBE) providing a variety o services for students, parents and educational staff. Location: Holiday Inn, 222 Potomac Blvd., Mount Vernon, IL. To register call 397-8930, ext. 166.

Regional Events
The Down Syndrome Association of Greater St. Louis Christmas Party was held on Dec. 8, 2002 at the High Ridge Elks Lodge in High Ridge, MO. The lodge hosted the event. Santa Claus was present of course. Fruit was sent home and goodie bags with treats for all. A D.J. had almost every person off their feet and on the dance floor, from grandma's to teens and toddlers. There were so many activities to participate in no one could sit for long. A big applause goes out to the love and kindness of the High Ridge Elks Lodge, who hosted the event and to Mrs. Shari Brune and the DSAGSL social committee.


Tamara, Shawen and Tom Rampold
Tamara, Shawen and Tom Rampold

Sue Brown, Kate Trudell, Mary Trudell, and Karrie Brown.
From left: Sue Brown, Kate Trudell, Mary Trudell, and Karrie Brown.

March 12, 9:00 - 4:30 p.m. Individuals with Disabilities Education Act in Illinois. A one-day seminar designed for principals, special education directors, psychologists, teachers, guidance counselors, social workers, school board members and attorneys. The seminar will include:

moonlight is the newsletter of the Riverbend Down Syndrome Association.

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

  1. Students with Disabilities and Maintaining Good Order in Discipline in the Public Schools
  2. IDEA Defined and Question of Eligibility
  3. Procedural Safeguards and Dispute Resolution under IDEA
  4. Development of Individualized Education Programs, Placement Decisions and Evaluations
  5. Special Issues Regarding Special Education Related Services
Location: Holiday Inn, 1000 Eastport Plaza Drive, Collinsville, IL. Seminar tuition: $259. For further information contact Lorman Education Services, P.O. Box 509, Eau Claire, WI 54702-0509, (715) 833-3940. http://www.lorman.com

Help with IEPs
For families who have children in school, preparing goals for IEP meetings can be very challenging. Help is available from other parents in the area. Mary Trudell has offered to coordinate an effort to assist parents with formulating IEP goals. She can be reached at metrudell@yahoo.com or by phone at 406-7835.

Down Syndrome Articles
Editorial Thoughts... On Being Tender by Margaret W. Lewis, Webster Groves, MO. DSN, Vol. 24, No. 2, p. 15-6.
EDITOR'S NOTE: At the prompting of a longtime NDSC member, we have chosen to reprint this treasure of an editorial written by our esteemed former editor. (From Down Syndrome News, newsletter of the National Down Syndrome Congress, 1370 Center Drive, Suite 102; Atlanta, GA 30338. October, 1983, pg. 109.)

There is a dilemma, as an editor, in meeting the needs of the public relations impact, of proving beyond the measure of a doubt that children and adults with Down syndrome have potential-that formerly inconceivable capacities are possible for people with Down syndrome.
The dilemma is that, in striking out with our best foot forward, we sometimes run the risk of kicking, quite cruelly, some parent whose cherished child will never go to high school, never give a public talk, perhaps never even speak at all.
Continually the input to Down Syndrome News is stories of success, tip-top achievements. Often there is humor and gentle acceptance of imperfections, but in each of us as parents there seems to emerge that insidious seed of wanting to have, as someone put it, the best child with Down syndrome. Having conquered (we like to believe) the grief of not having the normal child we expected, we still play for the winner's circle.
And it is good to have high expectations. Good to take joy in the little triumphs, good to show a doubting public that our kids too are wunderkinds. But where is the line, where is the edge of tenderness that keeps us aware of the hurt of others? The great thing we, as parents of children with Down syndrome, share with one another is the vulnerability we each inherited when our particular child was born to us. The automatic humbling came to us every one, and out of it was created a kinship unlike any other but that pain can bring.
In the end, of course, it's a matter of individuality. The final joy is in the achievement, the communication-whatever level-of each child as himself or herself. The final proof of our humanity is in the non-comparing love we can show for our children and for each other.
But, if chance has dealt you a "high functioning" kid, take a few minutes and role-play the part of the parent of a child who doesn't read, or count, or jabber hundreds of words. How do you insulate yourself from the "what did I do wrong?" feelings, the "maybe if I try harder..." feelings, the just plain jealous, wounded feelings that surge up over the triumphs of another child-particularly one close to your own child's age-and then the guilt feelings of knowing you SHOULD be taking unalloyed pleasure in the achievements of someone else's little genius. Those are real feelings and they should be part of the empathetic baggage of all of us.
So we return to the dilemma of what we emphasize in Down Syndrome News. Certainly there is enormous need to contradict the public image of non-human quality. We hope we speak to professionals who need a new look at their own preconceived ideas of Down syndrome. We hope to provide articles that parents can clip and recommend to their own range of contacts. We need to interact with one another as parents and encourage one another with reasonable expectations, ideas for implementation, fun and tears. Let us be sure that we are not reduced to bragging, to misleading claims (as when someone has aided and abetted some achievement without documenting that help), or to building our own egos at the expense of someone else's dignity and despair.
Our advocacy is for every single child born with Down syndrome, not just the cream of the crop!

An Invitation to Celebrate ALL People with DS by Kathleen Marafino, Syracuse, NY. Down Syndrome News, newsletter of the National Down Syndrome Congress, 1370 Center Drive, Suite 102; Atlanta, GA 30338. Vol. 25, No. 3, p. 27.
Our son, Richard, is 23-years-old and has Down syndrome. I would describe him as an incredibly compassionate person who is very attuned to the needs of others. He has a great sense of humor and loves to play an occasional practical joke. Others would describe him as a person who has Down syndrome, autism spectrum disorder, Tourette syndrome, heart disease and significant behavioral challenges. And, they would be correct.
When Rick was one day old, my husband and I contacted our local parent support group, the DSA of St. Louis. Shortly thereafter we joined the NDSC. When he was almost one year old, we became co-presidents of that local parent group, and, in that role, co-chaired the 1980 NDSC Convention held in St. Louis. Our early involvement led to 22 years of participation in local, state and national organizations, including the NDSC as well as other disability advocacy groups not specific to DS.
Throughout that time, I have felt a strong unexpressed need. In all those places where it should have been easy and safe to be honest about Rick's needs and our struggles, but still optimistic about his future and secure in his acceptance as a valued human being, something has been lacking.
I have hesitated to address this issue- out of concerns for my son (wanting to portray him accurately, yet positively and respectfully), out of concerns for the disability movement (the need to generate positive awareness and promote high expectations) and out of concern for others with DS, whose achievements we joyfully and genuinely celebrate.
The dilemma we face as advocates is: how do we continue to acknowledge achievements, measured in traditional terms, that replace negative stereotypes with more positive, enlightened public awareness and, at the same time, truly celebrate the gifts of all people with disabilities?
I know that I am not alone in perceiving this challenge. I speak not only from my own experience, but on behalf of many other families who have posed that question to me over the years.
In an earlier issue of DSN this year, I wrote about "outreach" as a goal for the organization. One mother, whose daughter also has significant support needs, expressed the sadness and dissatisfaction that families sometimes experience when support groups and newsletters "are filled with success stories" however wonderful and inspirational. Her child's more complex needs seem not to be shared by the families represented at the local support group and in the pages of DSN. She closed with "If there are other families in our situation, they could use your support."
At the convention in Denver, as every year, more than one parent approached me to ask: What are you (the NDSC) doing that speaks to my child whose needs are more significant, whose accomplishments are less likely to be noted and featured at a national conference? When we reprinted the editorial by former DSN editor, Margaret Lewis, on "Being Tender" we heard from many for whom the article struck a responsive chord.
When we, as individuals, as local parent support groups, as a national organization, and as a disability movement, arrive at the stage where we can truly celebrate the gifts of ALL people with disabilities, only then will we be "practicing what we preach." Only when we are fully accepting and people feel a sense of belonging, no matter what their achievements by traditional measures; and, only when we are truly celebrating them as valuable human beings whose gifts we treasure, will we be living up to the standard for which we advocate.
Do we act as the role models for the meaningful inclusion that we seek elsewhere?
How does our advocacy for inclusion translate into our behavior as a national organization, as local parent support groups, as individual family members. Do we fully model the behavior we expect of others?
Somehow, I think we all fall a bit short of that.
While we're highlighting those achievements, how do we also convey the message: Even if a person with DS doesn't perform at this level, we want you to recognize the person as a valuable human being who has many gifts to share and offer to the rest of us.
I realize that my words may cause some discomfort and perhaps some disapproval among our readers. I am hopeful that as advocates we might consider expanding our circles of support to truly include ALL people with DS.

How was school today? NDSS Parent Information and Advocacy Tips. National Down Syndrome Society, 666 Broadway, New York, NY 10012. (212) 460.9330, (800) 221.4602; Fax: (212) 979.2873; Website: http://www.ndss.org.
With the beginning of a new school year, it is a good time to share information about parent-teacher-school communication. Parents want to know what is happening with and for their child at school. With a variety of placements for children with disabilities, the need becomes more intense and more important. During the IEP planning time, some systems can be established, but in many places, the new teacher was not present at the last IEP, and doesn't really know your child.
     The method chosen for parent-educator communications will vary depending on the needs of the parent, the child and the teacher. If you make it clear that you are respectful of the teacher's time constraints and paperwork demands, most teachers will respect your need for communication. The key is to be flexible and creative in your efforts to design a communication plan that meets everybody's needs. It is important to emphasize that you want to support the teacher who is educating your child by following through at home, but you need information in order to do this.
     One of the challenges of parent-school communication is to make sure both parties are clear on the need for high, but reasonable, expectations for the student. It is harmful if the teacher's expectations are too low and it is equally harmful if the teacher is frustrated because he or she thinks the student should be at a higher level or achieving at a faster pace than is reasonable for this child. It is important to check the work that is coming home to see if the expectations have been set at an appropriate level. If the bar has been set too low or too high you can adapt the homework to model the work you believe your child should be doing or communicate in a more traditional manner.
     The following are tips to assist you setting up a good system of communication:

  1. Set up a folder/notebook to keep track of school information: phone numbers, school policies, school calendar, etc.
  2. Learn the paper exchange. Does your child bring work home? Does it need to be returned? How much homework? When are tests?
  3. Establish a manner in which you can receive information and give feedback on the work. Many parents establish an exchange of information regarding behavior. It can be very helpful if home and school approach behavior problems with similar reinforcements.
  4. Have a meeting with the teacher(s) before school starts to discuss your child and your expectations as well as the teacher's expectations.
  5. Communicate with your child's teacher about concerns or issues that might affect your child's time at school.
  6. Keep a continuous dialogue with your child's teacher.
  7. Check with your state Parent Training and Information Center to see if they have information on developing methods of communication.
  8. Request IEP reviews, if you think there is a question of level of performance.
  9. Be nice and respectful of the teacher's time.
  10. Participate in school activities. Parent's help is always needed.
  11. Volunteer your time and skills to help in the classroom.
  12. Volunteer for field trips, if your time allows.
If you have questions or comments about this information sheet, contact Patty Smith at psmith@ndss.org

Student's disabilities not a hindrance by Julie Church. © St. Petersburg Times, published April 15, 2001. Reprint permission granted by Barbara Oliver, oliver@sptimes.com, Research Editor.
Beth Cigoi, 16, has the same hopes and dreams as other kids her age. She'd like to go to college, move into an apartment with friends and eventually get married and start a career in child care or possibly as a singer or dancer.
Two things, however, distinguish Beth from other 16-year-olds. She has Down's syndrome. And she recently was named a delegate to this summer's Able Trust Youth Leadership Forum in Tallahassee.
Beth, who lives in Lansbrook, is a sophomore at East Lake High School, where she is mainstreamed into regular classes in biology, algebra, art, English, food preparation and keyboarding.
She does regular 10th-grade work with modifications to her class load and with help from an aide who stays with her throughout the day. Her test times are sometimes lengthened and assignments are sometimes modified.
"For example, if the other kids in algebra do 40 problems for homework, Beth will maybe do 20," her mom, Pat, said.
According to her mom, Beth is the first child with Down's syndrome to be mainstreamed into regular classes at East Lake High. But even though there are not a lot of other kids like her, she doesn't hesitate to jump in and get involved.
Beth is a member of the school's multicultural committee and eats lunch with a group of other students who are not handicapped.
She has tried out for the school's talent show for the past two years and although she hasn't made it, she plans to try out again next year.
Outside the classroom, Beth plays golf every week, takes dance classes and volunteers with St. Vincent de Paul Soup Kitchen and Special Olympics and participates in a march against breast cancer.
Pat said Beth is a leader and serves as an inspiration to those around her.
"She is so courageous," Pat said. East Lake High principal Rick Misenti agrees.
"If everyone could role-model her qualities, the world would be a much nicer place," Misenti said.
Misenti and Beth have shared a special relationship ever since she started at East Lake High School last year.
"At least once a week I'll hear a little soft knock on my door and it will be Beth with her lunch bag," Misenti said. "I'll invite her in and we'll have lunch together in my office."
"He (Misenti) supports me," Beth said. "Sometimes he takes me to high school activities and out to eat. When I go to school he is there in the parking lot waving to me."
Part of that support from Misenti includes recommending Beth's nomination for the Able Trust Youth Leadership Forum.
Beth was selected as a delegate, and will travel to Tallahassee on July 12 to attend the three-day conference. More than 50 students from throughout the state with various disabilities are chosen to participate in the leadership training event. They were chosen because of their leadership qualities as evidenced through applications and letters of recommendation from teachers and others who know them.
"These kids are either ignored or underrated by other members of the community," said Jackie Pardue, who is working to coordinate the Youth Leadership Forum in Tallahassee. "What they don't realize is that while these kids may need help in other areas, they can be leaders and contributing members of society."
For Beth, the forum is an exciting opportunity to meet new people and to do something away from home.
"When I got the letter (of acceptance as a delegate) I was so happy," she said. "I was in!"
In Misenti's letter of recommendation for Beth he said, "Beth's outgoing personality and the warm smile which she possesses have significantly impacted those who know her.
"By her actions and presence she has become an advocate for all learners to reach for their dreams."

Web Wanderings
Father's Journal
Emmanuel has somehow concluded that all sports should end with a fall, upon which a tackle is duly requested.
I try not to, but it is impossible to tackle my son without a bear hug and a kiss.
The Special Needs Network, 50 Lakeview Parkway, Suite 102. Vernon Hills, IL 60061. (847) 522-7546 or in Illinois: 1 (800) 344-7725. E-mail: info@tsnn.org URL: http://www.tsnn.org/.
The Special Needs Network is a not-for-profit corporation dedicated to helping families with special needs optimize the lifelong care of their loved ones. Its mission is to provide resources, research and education for families of individuals with disabilities and the elderly.
Contacts: Mary Anne Ehlert, President MaryAnne@TSNN.org and Sherri Schneider Sherri@TSNN.org.