July 1997 Issue

The Riverbend Down Syndrome Association's third meeting took place on July 18. We wish to thank our guest speaker, Thomas E. Kennedy, III. The dinner menu was:
Appetizer: Gazpacho
Appetizer: Tortilla Española
Soup: Sopa de lenteja
Main Entrée: Paella a la Valenciana
Dessert: Nueces con crema
Beverage: Horchata
STARnet Region IV Workshops
October 8-10. Sharing a Vision: Imagine the Possibilities. Crowne Plaza Center, Springfield, IL. The biannual state early childhood conference is a collaborative event which provides an opportunity for all professionals working with young children birth through age eight to share a special designed exemplary conference experience. Who should attend: all early childhood program personnel, administrators, and families. Pre registration is required. For more information contact Susan Ferry at (217) 824-4776.

Regional Events
August 8-10. 25th Annual Convention of the Nation Down Syndrome Congress at The Pointe Hilton Resort on South Mountain, Phoenix, AZ (800) 876-4683. Creating the Vision for the Next 25 Years. For information, contact Dru Barbee at the NDSC Center (800) 232-NDSC.

August 14, 9:30 a. m. - 11:30 a.m. Down Syndrome Association of Greater St. Louis Play Group. 211 North Lindbergh, St. Louis, MO. For more information call Karen Voda at (314) 645-8939.

September 5-6, 2nd Annual Early Conference, Centralia, IL. Contact: Tina Suarez, (618) 532-1981, extension 276.

September 19, (Professional Presentation) and September 20, (Parent Presentation), 8:00 a.m. - 4:30 p.m., Illinois State University, Normal, IL: Communication Skills. Assessment and Intervention for Children with Down Syndrome. Presented by Libby Kumin, Ph.D., CCC-SLP. Sponsored by the Central Illinois Down Syndrome Organization, ISU Speech Pathology and Audiology Department, and STARNet Region III. Each parent participant will receive an extensive booklet of resource materials including ideas and references for home and community activities. Focus will be on in-depth understanding of communication skills in children with Down syndrome and ways to enhance, support, and maximize communication effectiveness. Libby Kumin serves as publisher and editor of the Communicating Together Newsletter. She is a member of the Down Syndrome Medical Interest Group, the Professional Advisory Board for the National Down Syndrome Congress and is the therapies editor for Down Syndrome Quarterly. In 1994, she authored Communication skills in children with Down syndrome: A guide for parents. (Woodbine House). For more information, contact the Central Illinois Down Syndrome Organization at (309) 452-3264.

September 19, 9:00 a.m. - 5:00 p.m., DePaul Health Center, May Community Center, 12303 DePaul Drive, Bridgeton, MO 63044 (314) 344-6000. The Learning Disabilities Association, St. Louis Affiliate and SSM Behavioral Medicine, presents Dr. Sam Goldstein. Dr. Goldstein is a child psychologist who specializes in the field of ADHD and learning disabilities. Topics presented will assist parents and professionals in the management of problems with children who have trouble paying attention, sitting still and controlling themselves. Dr. Goldstein will also be discussing areas of skills essential for learning. For more information contact:

Learning Disabilities Association of Missouri
St. Louis Affiliate
10702 Manchester, Suite 7
St. Louis, MO 63122
(314) 966-3088
News Clippings
The Choice I'll Never Regret by Mary Ellin Barrett. Redbook, August, 1997, page 86. What If I Can't Love Them?

Kathleen Boylan greeted the news that she was pregnant with turbulent feelings. She and her then boyfriend, John, together for a year and a half, had plans to get married and start a family but hadn't expected it all to happen so soon. "It wasn't a happy reaction. It was more like. Okay, we'll deal with this," admits Boylan, 37, a social worker from Virginia Beach. The couple got a second surprise when a sonogram picked up two heartbeats. But 16 weeks into the pregnancy, just as they were adjusting to the idea of two babies, an amniocentesis brought the news that the twin girls had Down's syndrome. "We looked at each other in disbelief - and then cried for three days," says Bolan.

[...] Boylan spoke with parents of Down's children, including those who'd had twins. "They adored their children, which gave me a lot of hope," she recalls. Boylan also talked to a woman who had terminated a Down's pregnancy, and then she questioned her doctor about the procedure. "They would have had to induce labor, and the babies would be born but wouldn't survive." She and John would be encouraged to hold the babies and to have a funeral or memorial service for closure. "I sobbed the whole time the doctor was describing this. I couldn't imagine going through it," says Boylan. Eventually, they decided to keep the babies. "I was tired of being in such an anguish. The babies were growing inside of me, they were beginning to move." And the minute she made the decision a sense of peace came over her. "I said to myself, everything will be okay."

[...] Those fears were still with her on the day the babies were delivered by C-section on May 4, 1995, six weeks early, Boylan didn't bond with Caitlin and Meghan immediately: "I felt detached when I held them for the first time. They were in the intensive care nursery and couldn't come to my room. Even when I breast-fed them they were hooked up to monitors." But after bringing them home, "I fell madly in love with them," says Boylan. "I felt they were mine, that I needed to take care of them."

[...] Aside from having cataracts, which were repaired surgically in the early months, the 2-year-old twins are healthy. They're walking now and "into everything," says Boylan. Their speech development, however, has been slow: "They are vocalizing like crazy but they aren't using words yet. But the doctor says it's only a matter of time."

Boylan says she and John don't get caught up in the fact that the twins have Down's. "We just do what we have to do - like any other parents." And they're crazy about their babies. Says Boylan: "They're fun, happy, just wonderful. I can't imagine life without them."

The television program 48 Hours will feature a segment on Targeted Nutritional Intervention for Down syndrome on August 21, 1997.


Easter Seal Society of Southwestern Illinois
602 East Third Street
Alton, IL 62002
(618) 462-7325 [462-SEAL]
Fax: (618) 462-8170
Lekotek Leader: Donna Scheidegger
The Lekotek Mission
To facilitate the inclusion of children with disabilities and developmental vulnerabilities into the full range of family and community life. Lekotek uses family-centered play as the cornerstone upon which to build inclusive environments.

A Lekotek Overview
Lekotek provides direct services, support and information to children with special needs and their families in a resource and play center at Easter Seals. Occasionally, home visits are arranged. Play is how a child learns, and hidden in play are the keys to positive development. Lekotek provides each of our families with the guidance and tools to help their child with special needs develop through play. With focus on the child's abilities - and not disabilities - Lekotek helps strengthen and support the entire family. Lekotek's primary services are the play session and toy lending library for children birth to six years old. Lekotek family play sessions are held monthly where Leaders, focus on facilitating family interaction through play. Specially adapted and off-the-shelf toys are carefully selected for each child and his/her family members. The play session is designed to emphasize the creative use of toys and play materials, while promoting interactive play among all members of the family. Although the value of play and toys in a child's physical, cognitive, social, and emotional development is recognized, Lekotek is unique in that our primary concern is the child's enjoyment of the toy. Since the toys are picked specially for each individual child, the child is able to experience success and the parents can share in that positive experience with their child. Each moth the family borrows a number of toys to be used in their home. Parents have seen the toys demonstrated and feel comfortable using them and expanding on the child's play. Parents are encouraged to bring siblings, grandparents and neighborhood children to Lekotek to promote maximum carryover between the play session and the child's home and community environment. Lekotek is loosely translated as play library from Sweden where it originated.
The Easter Seal Society of Southwestern Illinois serves the counties of Calhoun, Greene, Jersey, Macoupin, Madison, Monroe, and St. Clair.

Down Syndrome Newsletters Articles
Birthdays by Kathleen Tansey Riggs, Parents Regional Outreach for Understanding Downs (PROUD) President, reprinted from The Optimist March/April 1997 newsletter.

If you are like me, you see yourself getting older every time you look in the mirror. Since hitting the big 4-0, I see myself changing and not necessarily for the better. This article is not about my birthdays, it is about our son's birthdays. This year, he turned 8! It is difficult for us to remember life prior to him, and it is also difficult to remember those first days and weeks after his birth.
Through the years of early intervention, preschool, and now elementary school, his birthday arrives as a mixed blessing. Our son was born on my father's birthday. I was pregnant with him when my father passed away - a very difficult time for us. When he was born, we felt we had been hit with a double blow as we were still grieving over the loss of my father, and then to have to face the fact that our son had Down syndrome, we somehow felt at first punished! Those thoughts of punishment disappeared quickly, the feeling of being overwhelmed took a little longer to go away. When Jonathan turned one, we were reminded by all of the children who turned one and were walking, saying a few words, all of the typical things our son had yet to experience. It tugged at our heart strings realizing that he had not achieved those things.
As he grew more able to do typical things on his own schedule, life got better. He walked unassisted at 28 months, and we felt overjoyed! Each subsequent birthday is still a mixed blessing. It is a constant and permanent reminder that my father is gone, a man who would have really enjoyed all of our son's antics. It also reminds me how far our little guy has come in such a short time. He is included in a regular first grade, is beginning to read, can do some math, participates and understands his participation within the classroom, and most importantly, he has FRIENDS! He is continuing to expand his own horizons, and explore new possibilities. We are so very proud of him.
Is it difficult for us to see him with 16 typical children in his age group and see him so far below the rest of the class? I thought that it would be, but actually, he is relating so well to the other students, they are relating to him, and all of the children in his class are excelling at his/her own level. He enjoys school and all of his teachers, and he is learning. I work in his classroom one morning each week, and after doing this for awhile now, I can honestly tell you that he and the other children work so well together that it is often difficult for me to immediately spot him-he blends in with the other children.
He has peer mentors and they love working with him. They also learn a lot about acceptance, tolerance and patience.
I decided to write this article about birthdays because I know that for many, this occasion can be difficult. I wanted to let you know that our son's 8th birthday was his best ever! We decided that he was finally ready to have a children's birthday party! We invited all of the children from his class and invaded the local McDonald's Playplace- (an inexpensive way to do a birthday party and you don't have to clean up!) 12 children from his class showed up! They all had a great time and we have never seen our son happier! He spend most of the time chasing around with the other children on the slides and ball pits, and it was wonderful to watch him comfortable with these children, and having fun with them. They are a great class-so much so that we would love to keep them all together forever!
We are already thinking about his 9th birthday and trying to figure out what can we do? We know that having his birthday party in a fun location is icing on the cake so to speak, an added inducement for children to come, but actually, even if we chose to have it at our home, I bet we would have a big turn out.
I have only one piece of advice for those of you having trouble with your child's birthdays. Keep remembering what your child was like one or two years ago and how they are different now. Remember that our children work on their own schedule not anyone else's and relish the accomplishments, however small they seem to be to others. Each accomplishment is huge to us because it often involves lots of work on our part to achieve success.
There are tons of things typical 8 year old can do that our son cannot do or has no desire to do. We work hard to not let that bother us. We try instead to focus on what he has accomplished and what he is close to accomplishing. This makes a lot more sense. We cannot predict his schedule for development- he apparently is keeping that a secret. All we can do as his parents is continue to enjoy his accomplishments, find joy in what he finds joy in and open his world to possibilities.
There are days occasionally when the fact that he has Down syndrome is all I can think about. There are months however where Down syndrome is a last consideration. Believe it to be true- this is something I tell new parents over and over again, largely because when parents told me the same thing 8 years ago, it gave me comfort. Your child is a child first. He or she is a child with Down syndrome second, third, fourth, or last on the list depending on the day.
Sometimes I think we parents make too much of the fact that our child has Down syndrome and we, by doing that, unconsciously set up barriers to the child's own development. We need to allow our child to explore his or her own possibilities. Our son has experienced things that we would have been afraid to allow him to do, but we had the good sense to allow others to intervene and show us the way.
Our son has blondish brown hair, green eyes, loves Bugs Bunny, Taz and Winnie the Pooh. He has a great laugh and is ticklish. He loves to run and jump and play with his classmates. He loves to go to the movies and his favorite food on earth is cheeseburgers with ketchup. Many days, these facts are more important than the fact that he has Down syndrome. Down syndrome is part of who he is, but it is not the ONLY part. He would not be the same person without Down syndrome, and that is just fine with us.

Web Wanderings
Teaching People with Down Syndrome to Understand and Use Numbers by Carol Tingey, Ph.D. (Accessed June 6, 1997, no longer available.)

In all learning it is important to avoid rote memorization of facts. It is better to learn to understand the concept through actual experience. Teaching people with Down syndrome to recite numbers is a rather simple task. Helping people with Down syndrome understand the "language of mathematics" is a slow, time-consuming task. Mathematics is a language of symbols which describes relationships between figures, forms and quantities. Mathematics is not merely learning to recite numbers. The steps to learning include:
  1. The ability to see similarities. These similarities may be of any type or nature. They may be color, shape, size, taste, brightness, or even such personally abstract things like favorite foods or music. A learner with Down syndrome needs to have repeated experience seeing how things are alike, before there is any reason for wanting to group and later count these things.
  2. The ability to group things that are similar. In the beginning, actually placing the similar things side by side is necessary. Most things can belong to several different groups. A coat may belong to a blue group, a clothing group, a cotton group, and a buttonhole group. Organizing and reorganizing these groups is necessary in order to develop understanding.
  3. The desire to count things in groups. Even after things are grouped, there is frequently not a need to give a symbol name to the number of things in the group. Some languages do not have all the numbers that we are familiar with in the English language. They simply have a label for one and a label for many. Needing to make things even as with teams, is one of the more basic reasons to count.
  4. The understanding of one-to-one correspondence. It is difficult for some people to learn that for each number there must be something that is counted. It is important in early learning for individuals with Down syndrome that they are actually counting objects. Some teachers have used small stones, blocks, or other tangible objects. Parents can use things such as spoons and napkins as the child learns to set the table for four. It is important that learners have a set of these things to handle for themselves. People with Down syndrome are concrete learns; that means that it is important that the objects are actually present, and that they can handle the objects and group the objects according to their own interests.
  5. A purpose for comparison of the amounts in groups. Abstract or arbitrary comparisons do little to enhance learning. Comparison between numbers of boys and girls, black shoes and white shoes or school lunch and sack lunch are necessary in order for the learner to be interested in comparisons.
  6. Symbols for the comparisons. The symbol for each number has meaning only after the above prerequisite concepts are understood. Individuals with Down syndrome can "play the game" by filling out a paper work sheet with numbers on it, but the exercise is meaningless. In the beginning, it is important that the objects that are grouped are presented along with the numeral symbol.
Practical Use of Numbers

Learning to tell time and to count money are practical skills for individuals with Down syndrome. Telling time is best facilitated by having a schedule and a large clock that is visible. The teacher or parent follows the schedule carefully and comments about the time as activities are changed. For many learners, it helps to have a digital clock beside a face clock. The learning occurs as the events and the time are repeatedly paired. The learning does not occur from clock faces printed on a worksheet. Learning to use money is best facilitated by purchasing things at a real store or at a carefully simulated store in a classroom or a home. The child can "earn" money and purchase things in the store. Start with real money for purchases less than a dollar. Repeat, repeat, repeat. Do not correct the child, just continue to count the money as it would be counted in the store. Do not rush the transaction, but allow the child plenty of time to choose the purchase and handle the money. Only after these skills are well developed is the individual with Down syndrome ready to learn to write checks. Some numbers have no ordinal meaning. Telephone numbers, street address numbers, and social security numbers have only arbitrary meaning; that is, they are not "counting" things. It is necessary to memorize these numbers rather than to use them in computation. With all these steps to learning coupled with inconsistency of number meanings, it is no wonder that individuals with Down syndrome usually have little interest in abstract mathematical concepts. A clear understanding of the grouping process and one-to-one correspondence is probably the most vital concept for day-to-day use. Without that understanding, reciting numbers or number facts is a meaningless rote process.

Father's Journal
Photographs and Memories
The nurse repeatedly lifted his listless arms. Your son has Trisomy 21. What is his name? We had none. Yes, we had had names, but we needed a special name now. We both claim to have come up with our son's name in the delivery room, so Someone must have helped us.
The nurses insisted on taking a picture of our newborn, so my wife could place it next to the breast pump, for the ensuing month. We had no use of a photograph of a scared, ill child with a red glare spot on his flat forehead. A second time the nurses took a photograph, a remembrance perhaps, since my son was losing weight. This too, I tore up.
His name is Emmanuel and has his mother's beautiful dark eyes, ever attentive, no longer scared. He lifts his arms, beckoning to be held, Emmanuel is his name.