|November 1999 Issue|
Our next meeting will be held on Friday, December 10th at 6:30 p.m. Mrs. Dale Sheets, Human Resources Director for Challenge Unlimited, will speak on supported employment. Contact Peggy Mitchell or Tamara Rampold for meeting location.
We intend to have meetings on the second Friday on every month. Mark your calendars.
We gratefully acknowledge Tony Paulauski, Director of the Arc of Illinois in Springfield, E-mail: TonyPaulauski@aol.com who sent us the Illinois' Family Assistance and Home-Based Support Services Programs brochures, which we enclose in this newsletter. Two of our member families have won this stipend in previous years and we encourage all to complete and mail the application form.
We wish to acknowledge two of our members who have been very active advocating on behalf of our children this year: Linda Orso, E-mail: email@example.com and Sue Brown, E-mail: firstname.lastname@example.org. In addition, Linda will be speaking about recreation and leisure opportunities at the Illinois Parent Conference in Springfield on March 25, 2000 and Sue has been appointed to the Governor's Council on Early Intervention.
Linda Orso's Presentations:|
March 3, 1999, SIUE - Spoke to a graduate class of teachers who were getting a degree in special education. I talked to them about strategies for working with parents. They also requested that I talk about the things that parents would like teachers to know or do. April 7, 1999 - Parent Support Group in Quincy, Illinois. Spoke to parents and early childhood professionals about raising a child with Down syndrome, shared resources with them, and strategies for overcoming different barriers along the way.
May 6, 1999 - With Millicent McAfoos, presented at the Arc of Illinois Convention in Springfield. We gave an overview of the Supported School-to-Work Program, and talked about the parents' perspective regarding meeting the educational needs of our children ages 18 and older.
July 15, 1999 - STARnet Mini-conference in Collinsville. Presented "Down Syndrome 201/Strategies That Work": talked about raising a child with Down syndrome, shared some tips that I have found useful, and talked about how to work with the team of professionals involved with your child, including resolving differences and maintaining an attitude that is beneficial to your child.
July 22, 1999 - Project Choices Summer Institute in Springfield. With daughter Lydia presented on "Transitioning to a Community College". I talked about the various programs and experiences that Lydia has had, the obstacles in her way as she strove to meet various goals, how she overcame them, and the skills, etc. she gained by attending a community college program. Lydia talked about her personal experiences both at the high schools she attended and at the community college. She told them what she is doing currently, and she shared what she would like to do in the future.
Sue Brown's Presentations:
March 16, 1999 - Lewis & Clark Community College. Spoke with a class of Biology students about the basic characteristics, medical concerns, and the realities of raising a child with Down syndrome. Gloria and Emmanuel Bishop gave a demonstration on the abilities of a toddler with Down syndrome.
March 23, 1999 - Lewis & Clark Community College. Discussed with a group of Biology students the concerns of being a parent of a child with Down syndrome. During a question and answer period, we discussed the outlook for children with this disability.
April 20, 1999 - Lewis & Clark Community College. This session was presented to a group of students studying Early Childhood Development and targeted at the emotional side of being a parent of a child with Down syndrome.
June 29, 1999 - STARnet Mini-Conference in Marion - "Down Syndrome 101/The Early Years". Presented our personal story of receiving our daughter's diagnosis prenatally and shared the joys and tribulations we have encountered to date.
July 6, 1999 - Jan's Kids, Jerseyville - Spoke with a group of children, ages from pre-K through sixth grade about children with disabilities in general, Down syndrome in specific and a short session on sign language.
July 26, 1999 - Lewis & Clark Community College - Another group of Biology students. I always leave time for questions and answers, since I feel this is the best way to ensure that I am helping these people understand.
October 7, 1999 - Governor's Council on Early Intervention, Belleville. Gave a presentation on the positive ways the Early Intervention system impacted our lives.
October 19, l999 (morning session) - Lewis & Clark Community College. Presented the facts, medical concerns, and when Down syndrome occurs. The focus was an in-depth discussion of the pros and cons of inclusion.
October 19, 1999 (evening session) - Lewis & Clark Community College. A second group of Biology students. Talked about the basic issues facing a family raising and loving a child with Down syndrome.
October 27, 1999 - St. Louis Community College. Spoke to a combined class which included students studying Early Childhood and a group studying Special Needs groups. I focused on the issues facing families with children with Down syndrome, inclusion, and an overview of the characteristics, which comprise the syndrome.
November 10, 1999 - Grafton Elementary School. Discussed Down syndrome and the world of having a disability in general. We talked in-depth about the differences in people, that different doesn't mean bad, and how everyone has feelings and dreams. We touched briefly on sign language.
November 15, 11:00 a.m. - 1:00 p.m. Easter Seals Office, 602 East Third Street, Alton, IL. Lekotek invites their participating families to a Christmas Party with a visit from Santa, refreshments, games, door prizes and goody bags. Please RSVP by December 8th at 462-7325.
November 16, 9:00 a.m. - 11:00 a.m. Lewis and Clark Community College, 5800 Godfrey Road, Godfrey, IL 62035, Temple Building, Multi-Media Room #141. "Kick-off" of the Leisure Guide. This new book is a resource guide which lists the recreation and leisure opportunities for people with developmental disabilities in our area, high school age and older. Enjoy a bagel, coffee, and juice and meet other people in the area involved with young adults with developmental disabilities. Willie Deuster, an incredible young man with cerebral palsy will share his inspiring video and some of his unusual recreational experiences. RSVP to Linda Orso 466-3411, extension 4216 or Diane McDonough, extension 4211.
November 29. William M. BeDell Achievement and Resource Center 19th Annual Benefit Dance will be held at the Knights of Columbus Hall in Bethalto. The Crystal Image will play from 8:00 p.m. to midnight. Tickets are $10 per person. Sandwiches and snacks can be purchased from the Knights of Columbus. For ticket information call 466-1070 or 251-2175.
Music Play meets on Saturdays from 9:30 to 10:00 a.m. SIUE, Building II, Room 0116. Children are naturally fascinated with sound and movement. Ages 0-5 years old. The cost is $5 each session for family. For further information call 288-62-3 or 332-3718 or 332-3713 and leave a message for Nancy K. Anderson.
SIUE String Preparatory Program uses the philosophy of Shinichi Suzuki as a unifying guideline, which an be expressed in six essential principles: exposure, imitation, encouragement, repetition, addition, and improvement; to create a musical environment for developing students from the age of 3, teachers, and parents. Information may be obtained by calling or writing: SIUE String Preparatory Program, Box 1779, Southern Illinois University at Edwardsville, Edwardsville, IL 62026-1779. Director: Vera McCoy-Sulentic, 650-2839, Fax: 650-5988, E-mail: email@example.com, URL: http://www.siue.edu/MUSIC/Suzuki/
The Illinois Early Childhood Intervention Clearinghouse [830 South Spring Street, Springfield, IL 62704. (800) 852-4302 or (217) 785-1364. Fax: (217) 524-5339. E-mail: firstname.lastname@example.org] distributes money provided by the Illinois Planning Council on Developmental Disabilities to enable people with disabilities and their families to attend conferences of their choice related to disability issues. The limit is $400 per person or $600 per family every two years.
Down Syndrome Articles
Developing Language in Your Infant and Toddler. Copyright © 1999 by Sharon Fiocca, M.A., CCC-SLP, E-mail: email@example.com
There are some basic principles that every child must develop before becoming an effective communicator. When a child does not develop verbal communication skills, there are usually some missing steps from the basic principles. However it should be noted that if your child has one or more diagnosis's it would be more difficult for your child to develop language. What I mean by this is that our children will be language delayed because they have Down syndrome, which usually means lower cognitive functioning, and hypotonia. If another diagnosis exists such as dyspraxia, dysarthria, or autism, then this translates into a poorer prognosis. But don't be discouraged, most of our children will develop adequate language skills, just at a much slower rate.
Following are what I call the "basic principles" which must be mastered in order to become an effective verbal communicator.
Developing Language in Your Child with Down Syndrome. Copyright © 1999 by Sharon Fiocca, M.A., CCC-SLP, E-mail: firstname.lastname@example.org
How to Develop Attention: A super way to develop attention as well as embed auditory language, is to read out loud to your child. When is a good time to start reading to your child? As soon as he pays the least bit of attention to books in the first few months of life. In the beginning, "reading" consists of you identifying pictures in board/cloth books. For example, while "reading" a book with pictures of babies, you could say things such as "see the baby", "hi baby", "he is eating", "bye-bye baby", etc. and end by saying, "turn the page", so your child learns to respond when given a direction. As your child grows, choose books with more and more language. If you choose a book with too many words in the beginning he will not enjoy "reading", as he will be overwhelmed by all the words. Listening to books on tape while turning the pages of the book, is another way to develop attention and embed language. Be careful however to select books that are at your child's level. If your child is not talking, choose preschool singing/rhyme stories. Later your child will be able to listen to an entire story and turn the pages along with the story. Disney stories and tapes are great for an older child who is talking. "Reading" should be a fun time for you and your child. Also there are many computer storybooks available that would be most beneficial if you sat down with your child and listened along with your child (i.e., a favorite is Disney's 101 Dalmatians animated storybook). Flannel board stories are a great motivator because your child can help put up the pictures as you read.
Imitation of Sounds: In the last article we left off talking about imitation of isolated speech sounds. Always make sure your child is looking at you when working on sound imitation. You can also attempt this while you and your child sit side by side looking into a mirror. Children with Down syndrome will do better at imitation if additional tools are used to establish this skill. In essence I teach isolated sound imitation by adapting a beginning reading concept. I have found if you pair a sound (presented verbally) with a visual picture and a tactile cue, that this is fairly effective in teaching isolated sound imitation. By "visual picture" I am referring to a picture representing a particular sound along with the actual letter printed somewhere on the picture. A great side effective is that you are also teaching letter-sound recognition. You can begin this as young as 2 years of age, depending on your child's attention. The key is to present only a few sound-pictures at first. Your child will signal to you when he has had enough stimulation. Over the years I have tried various pictures for my visual cues. These varied from "Open Court" pictures (old phonics reading program), obscure reading pictures, to my own pictures drawn by my sister. I have not found that one is superior to another. They all work. Children even adapted when I changed pictures from one program to another. "Zoo Phonics" has developed a unique system that I have heard is effective in combining pictures with a sound and a tactile cue. I have just recently been exposed to this program and have not formed my opinion yet of its effectiveness with our children. Whichever program you choose, just remember that pictures alone are not sufficient. It is important to utilize tactile cues along with each sound and each picture. In my therapy I have made up my own tactile cue for each sound in the English language. Such as a closed fist tapped on your heart for a "buhbuh" beating heart sound (this is for the letter "b" and the sound "buh" and one of the pictures I referenced above is a "heart"). "Zoo Phonics" uses animals for each letter and a very cute tactile cue for the particular animal such as clapping your extended arms together for "Allie Alligator" who says "ah ah ah". A child will not progress to words successfully unless they master isolated sound imitation.
After mastering isolated sound imitation, then move on to simple words and imitation of the word after you say it. Initial words may consist of duplicated syllables such as "baba" for "bottle, "mama" for "mommy" and "dada" for "daddy". Attempts at one-syllable words such as "cup" will usually end up with a deletion of the final consonant. This is a normal developmental process but usually lasts a lot longer in children with Down syndrome. Children with Down syndrome will also change the position of sounds in words. For example, a child might take the final sound of a word and make it the first sound and still not put an ending sound on the word. So the word "pig" may sound like "gi". This is very critical in developing talking because if you do not recognize the attempt at making a word such as "gi" for "pig", you will not reinforce it. In order to talk, children require reinforcement for their attempts to communicate. To compound the problem even more, children with disordered speech usually have many phonological processes that they use. These processes include things like "final consonant deletion": already discussed, "stopping": using a "stop" sound for a sound that "continues" such as "d" for "s" (i.e., "dee" for the word "see"), "fronting": making a front sound for a back sound (i.e., "doe" for the word "go"). That is why it is important to consult with a speech pathologist early on to help you identify your child's attempts at communicating so that you can reinforce these attempts.
Children with dyspraxia will not make the transition from isolated sound imitation to words easily. They will require additional techniques to help them learn to sequence sounds auditorily and verbally. Once again we can borrow techniques from various reading programs to teach this concept along with administering intensive oral motor stimulation.
The Circle of Inclusion web site offers information about effective practices of inclusive educational programs for children from birth to eight at: http://www.circleofinclusion.org.