August 2008 Issue
The Riverbend Down Syndrome Association is a 501(c)(3) non-profit organization and can receive tax deductible contributions. Our Employer Identification Number is: 14-1982424.
Local EventsSeptember 7. Walk in the Park. Cardinals vs. Marlins, Busch Stadium. Pep Rally Starts at 10:30 a.m. Game time 1:00 p.m. The 2008 Walk in the Park will be a phenomenal opportunity for all the DSAGSL members, families and friends to join forces, yet again, in a picture perfect day at Busch Stadium. You can earn a free ticket to this event by raising $100 in sponsorships for the DSAGSL. The St. Louis Walk in the Park will take place to:
October 25. 3rd Annual Scotch Doubles Bowling Tournament for Down Syndrome Awareness. Silent Auction, door prizes and 50/50 drawings at each session. Tri-County Bowl, Jerseyville. $20 a couple early registration.
Call Eric and Joy Stemmler for more details or to register, E-mail: firstname.lastname@example.org. To enroll in the Special Needs Cheerleading Squad contact Pride of Illinois Cheerleading and Tumbling, 5300 Horseshoe Lake Road, Collinsville, IL. (618) 345-2555. E-mail: email@example.com.
Down Syndrome ArticlesA Tired Old Cliché Revisited by Sue Brown, E-mail: firstname.lastname@example.org. Copyright © 2008, Sue Brown.
How many times have we, as parents of a child with Down syndrome, heard that worn out sentiment, "Children with Down syndrome are so loving"? And how many times, if you are like me, have you inwardly cringed and just smiled? I usually will say something trite, like "She has her moments." Is my daughter with Down syndrome loving? She is, just as her older sister is. But something happened to us recently that made me pause and reconsider just what that cliché really means.
My daughter Karrie is 12 and she has Down syndrome. She attends a YMCA day camp program while I work. There are kids there from several different area schools. Most all of the kids there are typically developing. She has known some of her fellow "campers" since kindergarten. Some of the kids are from different school districts and hadn't met Karrie before.
Karrie knows she has Down syndrome. I wanted her to realize that there is a reason why she has to usually try harder to accomplish things that lots of her peers seem to do so easily. After all, her self-esteem takes enough hits throughout the day. Does she understand the implications of Down syndrome and the chromosomal impact? Of course not. She just knows that we are all different from one another and that this is okay.
Karrie is generally pretty laid back. She can get angry when provoked, like most people. She is a very social pre-teen who is lucky enough to choose from a large pool of friends for her daily play at camp. One thing Karrie doesn't do is cry very easily. So when her camp director told me that Karrie had come to her, crying, repeating 4 words over and over, I knew it was truly a cause for concern. Karrie was so distraught she could barely get the words out through the tears. She told the director, "Two boys, mean words".
The director said she had addressed the situation with the two boys. She had the boys apologize to Karrie. She said Karrie shook hands with both boys. But when I asked Karrie about it that evening, she waved her hand to dismiss my questioning. She didn't make eye contact. I sensed she was embarrassed to have me even know about the conflict. After telling her she did the right thing by going to the director (in the past, she would have just slapped the boys), she politely asked me to "stop talking, Mom." I can take a hint.
I did a lot of thinking about how Karrie handled this situation. It was obvious that she was deeply hurt by whatever the boys had said. Yet, she sucked it up. She went on with her day. She didn't want to talk about it, even with me.
I got to thinking about what a typical day for Karrie might be like. Getting dressed, feeding herself, brushing her teeth, and combing her hair all present their own unique set of challenges. She is independent with these tasks, but because of her fine motor skill levels, these activities take longer than they do for most typically developing children her age.
She is asked to repeat her comments or conversations or questions quite often. The fact that she just got braces doesn't help. While she has a lot to say and is very verbal, sometimes her speech isn't too clear, especially to someone who may not be around her much.
When we go out, such as a recent trip to McDonald's, she has to endure strangers. Most people are nice to her. Some reply to her when she says hi. But like the cashier at this McDonald's, some people stare. They are very obvious about it, too. When Karrie orders her food, they just look at her, then at me. I repeat her order, which was very intelligible, if they had been listening to her instead of staring at her. Karrie is aware of their stares. She smiles and says, "I love pancakes". That's when I slip my arm around her and say something to her to acknowledge her, since the cashier is still just staring.
Okay, I do have a point here. Does Karrie get up some mornings and say, just forget it, it's too much effort to brush my teeth, comb my hair or get dressed? Does she stop talking, thinking that I'll just have to repeat things over and over for some people? Does she decide that going to McDonald's or Wal-Mart or wherever it is that we are going, just isn't worth the stares? No, Karrie tackles each day with renewed optimism that leave me embarrassed for myself and my attitude some mornings.
I started thinking that day of the two boys and their mean words. Maybe this is what that old cliché really means. Karrie is able to accept an apology and not hold a grudge. She takes it for the true sense of what an apology is meant to be. Karrie forgives people for their rudeness and their ignorance. She is willing to see the best in each of us, even when we don't show her the best of ourselves. She has never mentioned the two boys or what they said. She forgave them with their apology. End of issue. She looks forward to going to McDonald's even though the same person is behind the cash register every Saturday morning when we go for our "girls morning out"...breakfast and a visit to the library.
I gave two talks, what I like to call diversity awareness talks, to all the kids at her day camp. The director and staff are very supportive of Karrie. I try to run interference for her when I can do it in an unobtrusive way, a way in which she isn't embarrassed or singled out. Through it all, Karrie continues to be one of "those loving people". I couldn't be prouder.Continued Language Development into Adulthood by Teresa Iacono, Ph.D. Centre for Developmental Disability Health Victoria, Monash University. E-mail: email@example.com. Voice, Summer 2007. Reprinted with the permission of the author and the Down Syndrome Association of Victoria. Introduction
Most people with Down syndrome experience some degree of communication impairment, although the extent can vary dramatically across individuals. Areas of communication that can cause difficulty include articulation (resulting in various degrees of intelligibility), fluency, and language. Interestingly, the functional and social uses of language appear to be a relative strength for people with Down syndrome, although some may experience difficulties arising from speech or language impairments. The focus of this article is the profile of language ability in people with Down syndrome, and recent evidence for continued learning into adulthood.Language Profiles
During the 1970s and 1980s, there was much research effort into identifying language patterns of children with Down syndrome. There was also some debate about whether their language could be described as delayed (that is, the same as in normal development, but behind) or different (that is, they were doing something different to that seen in normal development). Jon Miller has summarised much of this early work. He noted that, at least in terms of language production, when compared to children of similar IQ levels or stages of language development, children with Down syndrome do not do anything different. Hence, in terms of the order in which language structures developed, and the relationship between the number of words combined and grammatical endings used, there was no distinct Down syndrome pattern. This finding seemed to support the notion that language development in Down syndrome is delayed, but not different to that seen in children without developmental disability.
Some of these early studies have indicated, however, that there does seem to be something different about language development in children with Down syndrome in terms of two patterns. The first pattern is a mismatch between aspects of language development. In particular, children with Down syndrome have been shown to have comprehension skills that are more advanced than their production skills. This mismatch appears to persist from early childhood through to adulthood. Within comprehension, a further developmental mismatch has been found with understanding of vocabulary appearing to be an area of strength, while understanding sentence and grammatical structures falls behind. An important implication of this pattern is that in order to obtain an accurate profile of the comprehension skills of children and adults with Down syndrome, testing must include comprehension of vocabulary, grammar and sentences, rather than only one of these.
The second distinct pattern found in children with Down syndrome is the occurrence of plateaus in language growth: that is, where development seems to slow right down and even come to a stand still for an extended period of time. The first plateau occurs in developing single words. Preschool children with Down syndrome appear to experience some difficulty with the emergence of spoken words. The teaching of signs has been found to assist with the transition to a sizeable spoken vocabulary, with the use of signs often dropped as spoken word production takes over. A second plateau can appear in moving from single to 2-word combinations. In children without disability, once their spoken vocabulary reaches about 50 words, they start using 2-word combinations (e.g., "more apple," "go shop," "big dog"). Children with Down syndrome, on the other hand, often don't start combining words till their vocabulary reaches around 200 words. The use of signs or aided augmentative and alternative communication systems (e.g., picture boards or electronic devices with pictures) has been found to assist children in overcoming this apparent hurdle from single words to word combinations.
A developmental plateau that has caused particular concern over the potential for continued language growth was documented by Anne Fowler and colleagues. Longitudinal studies, whereby language development is followed over a period of time, provide a means of identifying patterns of language development. These researchers conducted such studies, beginning with Rebecca, who was assessed monthly from the age of 51 to 89 months (approx. 4-7 years) and then every 6 months up until 108 months (9 years). Rebecca was tested as having an IQ of 57. She showed relatively rapid language development up until the point at which she was combining words, and also using some word endings (e.g., the "s" at the end of a word to mark plurality – cups). This stage of language development marks the beginning of the use of more complex sentences, such as through elaborating various parts of the sentence, using more sophisticated word endings and developing the verb system (e.g., "I run," "he runs," "she is going").
Fowler and her colleagues found that Rebecca's progress slowed right down just prior to developing these more complex language forms. These and other researchers have found a similar pattern in other children with Down syndrome. The concern with what appears to be arrested development at the point of more complex grammar and sentences has been that even if growth continues, it appears to be at a slow pace. The danger is that the child will fail to catch up sufficiently to allow the development of fully mature, or correct and complete sentence production. Hence, it may be that these children and adolescents miss a critical period. An unfortunate result of Fowler's work has been the interpretation that language development ceases in late childhood or adolescence in people with Down syndrome.Factors Contributing to Language Difficulties
A number of factors have been explored as potentially contributing to the language delays experienced by individuals with Down syndrome. In addition to the presence of intellectual disability, these include the frequent occurrence of hearing impairment, slow brain growth, articulation difficulties, and environmental factors. None of these factors (other than intellectual disability) appear to account fully for the particular difficulties that people with Down syndrome have with language development, particularly with grammar and syntax comprehension and production.
What could be influencing language development are problems with remembering and processing speech. Speech is perceived auditorily (through the sense of hearing), and occurs as a sequence of sound units. There is a great deal of research evidence that processing such auditory and sequential information is particularly difficult for people with Down syndrome and results in them having difficulty remembering sequences of spoken information – referred to as auditory short term memory. This ability is often tested by having the person repeat increasingly long series of digits. Most people with Down syndrome are unable to remember more than 3 units, compared to the average of 7 for people without disability. Research has shown that assessment tasks that over-tax an individual's short-term memory may fail to show a true picture of the person's language skills. Also, a recent study by Robin Chapman and her colleagues showed that adults and adolescents with Down syndrome tended to use more complex grammar and syntax in shorter utterances than in longer ones. This result suggested a potential trade-off between complexity and length caused by reduced auditory short-term memory. Therefore, the earlier studies may not have provided a true indication of language skills in children with Down syndrome.Evidence of Continued Language Development into Adulthood
Recently, a number of studies of adults into their early 20s have provided evidence that language development does not stop in adolescence or earlier, as was once suggested. In fact, these studies have shown that 24 year-olds are able to use much longer and more complex sentences than was shown for Rebecca by Ann Fowler and her colleagues. One reason for the differences found across studies may be in the tasks used to obtain language samples, which are then analysed for the complexity of the language used. It seems that trying to engage a child or adult in a conversation will result in shorter and less complex sentences than occurs when they are asked to tell a story. A way of eliciting stories in research has been showing the person a wordless picture book and asking him/her to tell the story.
Further research by Robin Chapman and her colleagues has also shown continued language growth from 8 years through to 20 years. These studies provide evidence to argue against a ceiling effect in language development. More research with older adults with Down syndrome is needed to provide greater understanding of their continued language learning.Conclusion
Research has demonstrated that individuals with Down syndrome do show differences in their language profiles in comparison to typical language development. These differences include mismatches in areas of development and periods of slowed growth. For a while, there was a belief that language growth ceased in late childhood or adolescence. Recent research, although to-date addressing only early adulthood, has provided evidence of continued language development. In fact, Ann Fowler, whose work has often been cited as evidence for a ceiling in language development, argued that in 1995 researchers were only just beginning to develop an understanding of the learning potential of people with Down syndrome. She also predicted the potential for young adults with Down syndrome to exceed prior expectations as they are given greater educational and other opportunities, and research methods improve. Such continued development requires documentation through research that takes account of the potential for characteristics, such as problems with auditory short term memory, to confuse results from language testing, and also includes true measures of underlying skills.Bibliography
Beeghly, M., Weiss-Perry, B., & Cicchetti, D. (1990). Beyond sensorimotor functioning: Early communicative and play development in children with Down syndrome. In D. Cicchetti & M. Beeghly (Eds.), Children with Down syndrome: A developmental perspective (pp. 329-368). Cambridge, MA: Cambridge University Press.
Brown, R. (1973). A first language: The early stages. Cambridge, MA: Harvard University Press.
Carrow-Woolfolk, E. (1999). Test of Auditory Comprehension of Language - 3. Austin, TX: Pro-Ed.
Chapman, R. (1995). Language development in children and adolescents with Down syndrome. In P. Fletcher & B. MacWhinney (Eds.), The handbook of child language (pp. 641-663). Oxford: Blackwell.
Chapman, R., & Hesketh, L. (2000). Behavioral phenotypes of individuals with Down syndrome. Mental Retardation and Developmental Disabilities Research Reviews, 6, 84-95.
Chapman, R., & Hesketh, L. (2001). Language, cognition, and short-term memory in individuals with Down syndrome. Down Syndrome Research and Practice, 7, 1-7.
Chapman, R., Hye-Kyeung, S., Schwartz, S., & Kay-Raining Bird, E. (1998). Language skills of children and adolescents with Down syndrome: II. Production deficits. Journal of Speech, Language, and Hearing Research, 41, 861-873.
Chapman, R., Schwartz, S., & Kay-Raining Bird, E. (1991). Language skills of children and adolescents: I. Comprehension. Journal of Speech and Hearing Research, 34, 1106-1120.
Dunn, L., & Dunn, L. (2007). Peabody Picture Vocabulary Test: 4th Edition. Minneapolis, MN: Pearson Assessments.
Fowler, A. (1988). Determinants of rate of language growth in children with Down syndrome. In L. Nadel (Ed.), The psychobiology of Down syndrome (pp. 217-246). Cambridge: MIT Press.
Fowler, A. (1995). Linguistic variability in persons with Down syndrome. In L. Nadel & D. Rosenthal (Eds.), Down syndrome: Living and learning in the community. New York: Wiley-Liss.
Iacono, T., & Duncum, J. (1995). Use of an electronic device in a multi-modal language intervention for a child with developmental disability: A case study. Augmentative and Alternative Communication, 11, 249-259.
Iacono, T., Mirenda, P., & Beukelman, D. (1993). Comparison of unimodal and multimodal AAC techniques for children with intellectual disabilities. Augmentative and Alternative Communication., 9(2), 83-94.
Kouri, T. (1989). How manual sign acquisition relates to the development of spoken language: A case study. Language, Speech, & Hearing Services in Schools, 20, 50-62.
Laws, G., & Gunn, D. (2002). Relationships between reading, phonological skills and language development in individuals with Down syndrome: A five year follow-up study. Reading and Writing: An Interdisciplinary Journal, 15, 527-548.
Miller, J. (1988). The developmental asynchrony of language development in children with Down syndrome. In L. Nadel (Ed.), The psychobiology of Down syndrome (pp. 167-198). Cambridge, MA: MIT Press.
Miller, J., & Leddy, M. (1998). Down syndrome: The impact of speech production on language development. In R. Paul (Ed.), Exploring the speech-language connection (pp. 163-178). Baltimore: Paul H. Brookes.
Thordardottir, E., Chapman, R., & Wagner, L. (2002). Complex sentence production by adolescents with Down syndrome. Applied Psycholiguistics, 23, 163-183.Inclusion — Practical Strategies by Liz Steele, E-mail: firstname.lastname@example.org. Canadian Teacher Magazine, Winter 2007, page 6. Reprinted with the permission of the author and Ron Mumford, President, Pacific Edge Publishing Ltd., E-mail: email@example.com.
In the Winter 2006 issue of Canadian Teacher Magazine, Laura Saunders wrote a heart-warming article supporting inclusion of special needs students in our elementary schools. Ms. Saunders clearly outlined the benefits to all students and society in general, and I have witnessed these benefits. [Editor's note: Back issues of CTM are available in pdf format at www.CanadianTeacherMagazine.com.]
My son has Down Syndrome. I have worked closely with his teachers to facilitate his integration, and I would like to share some practical strategies that made his time at school productive. I have focused on curriculum planning and behaviour because those seem to be the two most problematic areas.CURRICULUM PLANNING
Make your IEP (Individual Education Plan) goals very specific regarding skill acquisition so the goals are easily measured. For example, rather than "He will learn numbers 1 to 20," say "He will be able to independently identify numbers from 1 to 20 at random." With crisp, measurable goals, the IEP directs the plan for daily work.
Follow a formula for creating daily teaching activities for the academic program. A simple formula makes planning straightforward. For each academic goal, we aim for five different activities to teach the skill. No more, and maybe less depending on the skill. That's one activity for each day of the week. For example, the spelling goal could have as activities the Edmark spelling program, and practising the spelling words in writing assignments and by dictation at home and school. Activities that match the student's learning styles and interests are most successful. Once the activities are chosen, gather the resources needed to carry them out. With a selection of activities, the student learns to generalize the skill and boredom is avoided. Also, very importantly, the student's daily program is clearly laid out, giving the required direction to the teacher aide.
Look for academic curricula adapted for special needs and with clear increments of skill acquisition. These programs can move on with the student from year to year, providing continuity and significantly lessening preparation time. Ask for recommendations from district specialists and the student's parents. The predictability of these programs can be very important for student comfort, which contributes to success. The Edmark sight word program, for example, has increasing levels of difficulty, built-in reviews, and a spelling component. In lessening the curriculum preparation load, these "ready to go" programs free the teacher to focus time and energy on providing richer integration experiences.
Ask teachers of younger students in your school for materials that you can use with your special needs students. Special needs children may learn at a slower rate with more need for repetition, but they may still follow the general learning continuum and be ready for materials that their age-mates used in earlier grades—except that older students need less space for printing!
Track and measure daily for easy reporting. For daily record keeping, we created a weekly feedback grid with days across the top and IEP goals with associated activities down the left. This provides a block of space for writing about an activity on each day of the week. The adult working with the student records how the activity went and any milestones achieved. Abbreviations save space and make data recording faster (e.g., number each activity for quick reference). References to any program modifications that were required can be made in a notes section at the bottom of the grid. As a bonus, the grid tracks the activities as they are completed so that the teacher aide or a temporary replacement does not repeat activities later in the week. The information thus collected is useful for reviews and reports.
Measuring the level of independence in each activity by identifying the prompts used is an easy addition to the record on the grid. Any intervention necessary for the student to be successful is a prompt, whether it is hand-over-hand or a verbal hint. Alberta's Programming for Special Needs [i] defines a typical prompt hierarchy. Awareness of the prompts used is integral to having them fade out in a timely fashion so that students can obtain as much independence as possible in their work.
Periodic tests may not be effective in measuring progress for special needs students. In addition to the feedback grid, we found ABA (Applied Behavioural Analysis) programs and datasheets very effective for planning and tracking learning. ABA programs are developed with small steps defined for progress towards a goal. Each step is measurable and practised in a controlled context. ABA has been used extensively with autistic children, and it is beneficial for all special needs learners. The clear measures in each step remove any subjective assessment by the instructor, resulting in an easy and true assessment of skill acquisition, and show exactly when it is time to move on. The student does not stay too long on one step, wasting precious learning time and getting bored, which could result in disruptive behaviour. Consider an ABA style if smaller learning steps are needed.
Hold team meetings each week during school time. Meeting regularly ensures clear communication as the student moves on and IEP goals, activities and resources need to be changed. It offers the opportunity to plan for the inevitable exceptions to the usual school week. It helps us remember that we are a team that supports the student-and each other. We found that a half-hour per week was enough, but an hour was necessary at the start. People that support the student on a day-to-day basis, i.e., classroom teacher, teacher aide, and the parent(s), need to attend. These weekly meetings may or may not be the place to include other professionals (e.g., school psychologist).BEHAVIOUR
Start by believing that all behaviour is a message. Logic says this is true because it is hard to believe that any human being would choose to go around scowling all day for no reason. Imagine that you lack the ability to reason and quickly process information, that your environment travels at a pace at least three times what is comfortable for you, time is a higher level concept that you do not understand, and nobody is paying attention to what you need. How else will you get someone's attention but through behaviour? All behaviour is a message that tells about an unmet need.
ABA can be used to change behaviour. Susan Peoples, in her book Understanding How Children with Down Syndrome Learn [ii], notes Everything you want to be learned must be taught. Behavioural compliance can be taught. My son learned behavioural compliance using ABA. For more information on our experience, please go to <www.cdss.ca/site/resources/personal_stories/ABA%20by%20Liz%20Steele.pdf>.
Look to yourself to effect positive change. As the teacher, you set the inclusion tone in your classroom, and you are a model for our society about caring, compassion and understanding. Consider what a high school teacher in special education said recently, I find that if I am positive, I don't get behaviour. Consider also that research has shown that the predictor of the success of special needs students is teacher attitude (The Educational Challenges Inclusion Study) [iii]. Like children with typical ability, special needs children do well if welcomed and respected.
Know that it will become easier. In her article "From Inconvenient to Ordinary" [iv], Kathie Snow explains how planning for inclusion at school is the same as any other challenge in life in that the first time is always the "biggest" in our minds. The first time a teacher plans for a special needs student, the newness makes the task cumbersome, unfamiliar and even difficult. As the experience is repeated, however, the planning gets easier until it is just usual and normal. Snow writes, Inclusion is, first and foremost, a state of mind. If you believe a person with a disability will be, can be, should be included, it will happen.
We know the benefits of inclusion to the students involved. We know the benefits of creating a more compassionate and caring society. We also know that raising and educating special needs children takes time and effort and can create problems. The students themselves, however, are not the problem. They have been placed on this Earth just like everyone else, and they have a right to be accepted and educated. We need to address the real problems that inhibit inclusion and integration because they can be solved, and often very easily when we support each other.
This is my tribute to Dennis Holton, who passed away April 10, 2007, in case you are interested in his role in the history of the Down Syndrome Program at the University of Washington 1971-1997.
Dennis Holton, who was the first infant with DS that Val Dmitriev worked with and the first child I taught to read, died last Tuesday night, April 10, in his sleep, due to complications of diabetes. He was 39 years old.
Val tells the story of seeing him in an infant carrier on his mother's back at the Developmental Psychology Lab school on campus, his little head flopped over to one side.
Val asked her, "Would you like an infant stimulation program for your baby?" His mother lifted Dennis out of the carrier and handed him to Val and said, "Here."
And that was the beginning of the Down Syndrome Program at the University of Washington.
Val made a movie, "The Operant Conditioning of a Down Syndrome Infant" starring Dennis, of course. (This was 1968-69 and Skinner was the big thing — and the big thing that changed things for children with disabilities.)
Based on the pilot study, Val wrote a proposal for early intervention for children with DS.
The preschool started January 1971 at the EEU, room CD140.
I started as preschool teacher January 1972. Soon after his 4th birthday, I was telling Val how bright he was.
He had taken a toy dinosaur from the animal basket, gone to the book shelf, selected a book about dinosaurs, and pointed to the pictures and toy.
Because he had no verbal communication, Val said, "Give him a means of communication, teach him to read." And that I did.
He could match and select words and respond to animal words with the sound of the animals, but still no words.
The SLP suggested that I teach him to sign the words. And this I did.
And the rest is history.
He started talking, and the first words he said were the words he read. Soon all the children in his class were reading. It was a very, very exciting time.
The children showed us just how remarkable they could be.
Katie Doland told me that the parents of children with other disabilities at The Arc "couldn't stand the parents of the children with DS who were in the EEU program" - I guess we all got really carried away, but we really had something wonderful to brag about.
Katie is no longer with us, but we are now sharing the method for children with autism spectrum disorders and other disabilities.
Leslie Broun, a specialist in autism, and I have written a book - "Literacy Skill Development for Students with Special Learning Needs: A Strength-Based Approach" - that will be out "any day now."
"Teaching Reading to Children with Down Syndrome" has sold over 62,000 copies in English, and has been published in German and Arabic. I have provided training in the method in 15 countries spanning 6 continents.
Dennis started something grand.
Dennis will always hold a special place in my heart. He was very special in many ways. Because of him, many dreams have come true, and thousands of children with Down syndrome are literate. His photo is in the preface of my book-you can see that he was a beautiful little boy who pulled a lot of heart strings.
Service for Dennis will be held at Goldendale this Saturday, April 21st.
Donations in Denny's memory can be sent to:
New Hope Farms
Holton Building Fund
Goldendale, WA 98620