August 2000 Issue

Our meetings are held on the first Friday of each month at Saint Anthony's Wellness Center in the Alton Square Mall. For directions call the Wellness Center at 462-2222. Our next social gathering meeting will be August 4th at 6:30 p.m.

We wish to thank Sandi Blanchard who spoke at our last meeting on Love & Learning, a language and reading program for infants and toddlers with Down syndrome.
Enclosed is the STARNet Family Conference 2000 brochure and registration form, which will take place on Saturday, August 19th at the Shrine of Our Lady of the Snows, Belleville, IL. The following members from our group will be among those speaking on the following topics: Sue Brown: Real Life Issues. Lydia Orso: Been There, Done That. Vickey Few and Deb Goodman: Help! IFSP/IEP Transition. Victor Bishop: How to Start a Support Group and Keep it Going.

Regional Events
July 26th 1-5 p.m. The Coalition of Citizens with Disabilities, in cooperation with IMPACT, Inc. and Easter Seals Southwestern invite your to celebrate the 10th Anniversary of the ADA Product and Service Trade Show featuring products, services and cutting edge information to empower the disabled population.

blank.gif  Location: Lower Level Alton Square - JC Penny Court. Grand Finale at the Lower Level Parking Lot at Alton Square (near the Pasta House): Celebrity Wheelchair Softball Game hosted by the Gateway Confluence Wheelchair Sports Foundation.
6:00 p.m. Demonstration by the Gateway ALL-Stars.
6:30 p.m. IL - MO ALL-Stars vs. Arch Rivals.

July 26th 2-6 p.m. Help LINC celebrate the Americans with Disabilities Act: ADA Awards and Presentations, Health and Technology Fair, Poetry Readings, Music, Clowns and Entertainment, Refreshments. Location: Hope Church, 200 Dapron Drive, Belleville, IL (West of Memorial Hospital). For more information, call Genevieve at LINC: 235-9988 or TTY: 235-0451.

October 17th 8:00 a.m. - 4:00 p.m. End of Life Care for Persons with Developmental Disabilities sponsored by the Rehabilitation Research Training Center on Aging and Mental Retardation and Outreach Training Unit. Location: Holiday Inn, 800 East Main Street, Carbondale, IL. (618) 529-1100. Speaker: Elizabeth J. DeBrine. M.Ed., Coordinator of the Outreach Training Unit at the Department of Disability and Human Development. Through presentation, case studies, videotapes, and group discussion, the presentation will increase the preparedness of agency staff, family members, and care givers to support a person with developmental disabilities in the dying process.

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:

Registration fees cover all costs including lunch, certificate of participation and training materials: Professionals: $75.00. Nonprofessional persons with disabilities, family members, and students: $45.00. For further information contact Outreach Training at the Department of Disability and Human Development, University of Illinois at Chicago: (312) 413-1535 or TDD: (312) 413-0453.

Music Play. Children are naturally fascinated with sound and movement. Each child born has the potential to learn music. Without early guidance, the potential for true music understanding and enjoyment is left underdeveloped.
Age: The ages of the children are birth to 5 years old.
Times: Fall Semester of Music Play will meet for twelve sessions on Saturdays with three class times available (Class A: 9:30 - 10:00 a.m., Class B: 10:35 - 11:05 a.m., or Class C: 12:30 - 1:00 p.m.).
Where: Music Play meets at SIUE, Building II, Room 0116. Free, close parking.
Cost: The cost of Music Play is $5.00 each class per family (not per child). The cost of the full 12-weeks is $60.00.
Registration: Call Nancy Anderson, e-mail:, at 288-6203 or 650-2839 and leave a message with name and phone number.

Down Syndrome Articles
Emergent Literacy in the Homes of Children with Down Syndrome by Thomas Layton, Ph.D. North Carolina Central University from Triangle DS News. Reprinted with the permission of the author.

     Current thinking views literacy as an interaction between listening, speaking, reading, and writing. Each is an important function for the other. Listening, for instance, is an important part of comprehending the theme of a story; whereas learning to read can help to produce sounds correctly, or to develop vocabulary skills, as well as for expanding longer sentences. Writing teaches the child spelling, left to right orientation, correct production, and fine motor skills. Other concepts involved in emergent literacy include: learning to read from left to right, understanding print is related to speech, knowing letters must be learned, and organizing language through appropriate grammar. (Van Kleek, 1990)
     It has been documented that typically developing children are highly exposed to literacy before entering school. For example, children from literate homes usually have over 1,000 hours of informal reading and writing encounters before entering school.
     In recent years, a few investigations have reported on book reading between parents and children with Down syndrome. The findings suggest that more and more parents are reading earlier and more often with their children. Furthermore, parents do expect their children to be able to read independently and for pleasure. The intent of this brief article is to introduce some parent-child reading methods to help increase early reading from children with Down syndrome. Some parents may already apply these methods. Nevertheless, it is hoped that the suggestions will stimulate additional reading between parents and child.
     In our clinic, we encourage parents to introduce reading in a naturalistic setting even before the child has learned to speak. For instance, environmental print can help the child develop initial symbol awareness. This can be done by cutting pictures and words from the child's favorite food products, toys, games, etc. The parent can collect the pictures in a box for future use or laminate them and attach stick-on magnets so they can be displayed on the refrigerator (or a Magnetic blackboard). We have even taken our camera and gone around town snapping pictures of our favorite places to visit, like McDonald's, Winn Dixie, the Library, Toys R Us, etc. We then laminate the pictures along with written words and place them on the refrigerator and select the picture when he/she wants to get something, or go somewhere. Parents can also select the pictures and talk about getting ready to go to the library and then put the library picture in a special spot. When it is time to really go to the library, the child can go and get the picture and take it with him/her. (This type of activity helps the child to associate pictures with an activity, to talk about future events, and to anticipate what is going to happen.) Later on when dad arrives home from work, the child can go find the picture, show it to dad, and talk about where he/she went. Thus, the child is talking about past events.
     Reading stories on a daily basis is important. There are several strategies that can help the child attain higher language skills, learn to express the meanings of stories, and help to acquire early word concepts. First, the child should pick out the story. interest in the story. However, the books should contain a repeated line throughout the story. Some of our favorite books are Brown Bear, Brown, Bear, What do you see?, The Very Hungry Caterpillar, and The Napping House for young beginnings, like ages 14 to 30 months. For a little more advanced children, i.e., 3 to 5 years, parents might want to consider: Stone Soup, Are You My Mother? and Just Grandma and Me. This last one has a video interactive CD, produced by Broderbund Software, Inc.
     Reading the story aloud is important. During the reading the parent should ask lots of questions. What is this? What do you think is going to happen next? Where is he going? Reading the same story over and over, on different days, also prepares the child to answer the questions. If your child answers the questions with only one-word utterances, expand them to two words. Or, if he/she answers with short phrases without auxiliaries (i.e., is, are, was) or with missing articles (i.e., a, an, the) insert these elements in the child's phrases.
     While reading the story, stop and try to discuss the story applying it to some real life experience that your child had. Always comment on your child's contributions during the story (even if most of what your child is saying is unintelligible). You should point out words in the story and see if your child can find the same word on the next page.
     After you have read the story a few times, pause at important times during the story so the child can complete the sentence; for example, in the book Brown Bear, Brown Bear What Do You See? The repeating line is the title of the book following by; "I see a red bird looking at me." The parent could stop after the title line to see if the child can repeat the next line. If not, provide part of it, such as, "I see a red (pause)" and wait for the child to respond. The parent can also make purposeful errors for the child to correct; instead of "bird", i.e.; "I see a red duck looking at me." This allows the child the opportunity to change the sentence by correcting the parent. This is a powerful language skill and tells the parent the child was listening.
     The parent can introduce writing along with the story. You can begin simply with drawing a picture of the story, such as, drawing a red bird, yellow duck, white dog, etc. Have the child tell you what he/she is drawing and then label each picture. Then the next time the story is read the child's picture can be used to help find the pictures and words in the story.
     The parent can also have the child simply copy meaningful words from the story. The parent simply writes the word on the paper and have the child copy it. Remember that initially the child's copying may not look anything like the adult's. Regardless, praise the child and show it off. It is the doing that is more important than the product. We have also found that writing and tracing daily improves hand strength, coordination, as well as, letter identification. Practicing drawing and writing is important. We use felt tip pens rather than pencils or color crayons because they require less motor strength to use. (However, crayons give more sensory feedback, so tailor the exercise to your child's needs.) We even use a mirror rather than a piece of paper to help the child write initially. It requires less effort than paper, and it can easily be wiped clean with a squirt of water.
     Another important strategy is to teach the child to write his/her name. This is most rewarding and is a good first word to learn; it teaches the child individual letters, form and shape. Most children want to learn to write their name. The parent could begin with tracing and copying. You could use alphabet magnets to help the child learn to spell their name. Then leave the magnetic letters on the refrigerator for the child to see his/her name. You can take them down and mix them up. See if the child can put them back in the correct order. Later on you can use the same idea to teach other words.
     Parent-child book reading and writing are excellent ways to help a child learn his/her sounds and to improve language skills. Not only that, it is fun. It is an easy and enjoyable method of teaching your child. So, go have fun and good luck in your book reading.

Web Wanderings
The purpose of the Guide to the Individualized Education Program URL: is to assist educators, parents, and State and local educational agencies in implementing the requirements of Part B of the Individuals with Disabilities Education Act (IDEA) regarding Individualized Education Programs (IEPs) for children with disabilities, including preschool-aged children. This guide does not address the development of Individualized Family Service Plans (IFSP) for infants and toddlers.
Following we reproduce the summary:
The IEP is the cornerstone of special education. Writing and implementing an effective IEP involves many people, many different steps, and collaborative decision making.
The information provided in this guide about the IEP has been fairly general. To help you get better acquainted with the various parts of the IEP, a sample IEP form is presented on the next pages. The sample IEP form includes space for all of the information that an IEP must contain under federal law. (Remember that IEP forms in your area may require more information that may be of value to the student and those implementing the IEP.) The different parts of the sample are paired with direct quotes from the law, so that you can easily see:
Father's Journal
Cultural Unawareness
Once upon a time, a PT trying to get Emmanuel's attention called him: mi hijo, without knowing that it meant, "my son." The PT, who had probably gone to one too many cultural sensitivity seminars was confused, but Emmanuel was more so, being called by this familial term of endearment by a misguided, politically correct aspiring Anglo.

Attachment A presents the IDEA's regulations for "Individualized Education Programs" (§§300.340-300.350). Under §300.347, where "IEP content" is described, we have included additional information primarily from Appendix A and Attachment 1 of the regulations. This information can be very useful in developing a fuller understanding of what type of information is important to capture about a child in the IEP.