|People with Special Needs Down Syndrome Report||
|VOL. 18 #4||SSN0731- 566X||Autumn 1998|
VICTOR BISHOP. His material is on pages 5 to 9 so at least scan those articles now. He, his wife, Gloria and son, Emmanuel just got back from the NDSC convention and likely will also participate in the NADS Conference (10-24-98) described on page 16.
DS AND AD. We sent to the new Director General of the World Health Organization the June 15th NEWSWEEK which listed a family history of DS as a risk factor for AD; the article was written by Dr. William Markesbery who graciously sent me two of his own publications and a reprint from NEUROLOGY ('98; 50:991-995), which I previously had written on but did not print because it had not been proofed; it is titled "Earlier Onset of Alzheimer's Disease in Men With DS", by scientists with Columbia University or NYS Institute for Basic Research in Developmental Disabilities (1050 Forest Hill Road, Staten Island, NY 10314). It reports that both male gender and the presence of an APOE 4 allele are associated with an earlier onset of AD. One of Dr. Markesbery's papers states the studies have shown an increase in DS in families with AD which is somewhat different. However, in Chapter 4 of a book edited by Dr. Markesbery (NEUROPATHOLOGY OF DEMENTING DISORDERS), Schofield and Maryeux do say "Several investigators have found the risk of AD associated with a family history of DS to be increased 2 to 3 fold." They also say "....the presence of an APOE-e4 allele appears to influence the age at onset of the dementia in DS." That statement was promoted by Dr. Schupf and associates in the NEUROLOGY article cited earlier. I will ask Doctors Schupf and Markesbery to provide WHO Director General Dr. Brundtland, with any information that might permit WHO to publish an Epidemiological statement relating to risks of people having a family history of DS or AD.
EARLIER ONSET OF AD IN MEN WITH DS. The April NEUROLOGY has the article referred to above on Pages 991 - 995 (V50 #4). Anyone can ask Dr. Nicole Schupf for reprints but they might be restricted to scientists in this field (Laboratory of Epidemiology, NYS Institute for Basic Research in Developmental Disabilities, 1050 Forest Hill Road, Staten Island, NY 10314). This Institute has been most gracious over the years in sharing information with me.
The researchers studied 111 adults with cytogenetically confirmed DS (aged 34 to 71) and APOE genotyping with the findings that both male gender and the presence of a APOE~e4 Allele were associated with an earlier onset of AD. Men were 3 times more likely to develop AD than women. Adults with DS with the 3/4 or 4/4 genotype were 4 times as likely to develop AD than those with a 3/3 genotype. They concluded that differences in hormonal function distinct from the general population finding may be related. Generally, AD is higher in women. Their finding suggests the developmental changes in hormonal function distinct from the general population my be related, and that these changes in hormone production occuring later in life may affect the risk of AD in this vulnerable population.
PRENATAL DETECTION OF DS. My wife and I have been familiar with related procedures for 26 years and have shared many memories about a physician we knew and whom I wrote quite a lot about (allegedly he was the first American to provide amniocentesis) and who apparently contributed sperm to father a multitude of children. Cecil Jacobson had a humorous disposition (although he shared much information with us, we never suspected his fertility role). At about the same time I was indoctrinated into world population concerns, the German WW II euthanasia procedures, the Biblical admonition to fill the earth and the related views. One of my wife's relatives had a miscarriage after amniocentesis so we had personal evidence of a measurable miscarriage risk with the procedure. What brought about this article was an identically titled article by Theodore Kastner, M.D. in V.9 #6 of EXCEPTIONAL HEALTH CARE in which he reviews two articles from the AMERICAN JOURNAL OF PUBLIC HEALTH. I am going to send that issue of EXCEPTIONAL HEALTH CARE to the WHO Director General and ask her to give us the WHO position on public policy regarding prenatal screening for DS with only the promise that I will provide the U.S. Senate Minority Leader, Senator Tom Daschle, her response. The 1 August LANCET has a commentary on DS anternatal screening and an article on lowering the false-positive rate. There are 100,000 abortions daily but almost one-half are now done with safety although society also loses more than 70,000 mothers (or would have been) per year. Apparently, France is the only country with a "scientifically valid metabolic DS screening policy," although California has one also.
THE WORLD HEALTH ORGANIZATION; ONE-HALF CENTURY. It was celebrated in April (www.who.int) and since I have met the new director-general, Gro Harlem Brundtland, M.D., I'm sure the beginning of the remainder of the Century will be productive. WHO's playing a growing role in helping developing nations use telehealth in rural and underserved areas according to Dr. Mandil, the WHO director of information and telematics. WHO's mission is to promote telehealth for use in disease surveillance prevention, health education and training. One project is a link between 10 rural underdeveloped hospitals in southeast Mexico with a modern Mexico City hospital. It is used for radiology and pathology consultation. The MC hospital (20 November) has reported a drop of 60% to 70% in unnecessary referrals this past year. However, basic health such as sanitation, clean drinking water, waste disposal are "first priorities of WHO.
STUDY OF DS IN 238,942 CONSECUTIVE BIRTHS. We expect this article to be accurate due to the credentials of the authors and the publication. It appeared in AMN GENET ANNALES-DE-GENETIA QUE V41 #1, on pages 44-51 by C. Stoll, Y. Alembik, B. Dott and M.P. Roth. The region of investigation was urban and rural areas of Strasburg. There were 398 cases of Trisomy 21 during the period 1979 to 1996 for which more than 50 factors were compared to control infants. The prevalence was 1.66 per 1000. The most common associated malformations were cardiac anomalies (46.2%) and intestinal atresias (6.0%). There were 9 cases of club foot and 9 with syndactyly. Maternal alcohol and caffeine consumption was the same for mothers of controls and fewer were smokers (19.1% vs. 21.6%). They pointed out that DS results from a developmental error that occurs prior to conception. We believe this is one of the classic long-term studies of DS and recommend it to you.
THOSE SPECIAL KIDS. This article is in the May 2, WAR CRY and you perhaps can obtain the entire magazine from your local Salvation Army or from Captain Payton, Editor, 615 Slater Lane, P. O. Box 269, Alexandria, VA 22313. In any case, I will send any subscriber, who provides a SASE, a copy of this article. It is provocative and inspiring; the author's (Barbara Curtis) son has DS. Several children had other maladies. The author said of her mothers' group: "I had a sanctuary where I found more love and compassion--a more tangible picture of Jesus--than I found in the Church." The author's family now consists of 11 children including two with DS who were adopted because they had found a treasure in Jonny. I wasn't impressed with the criticism of the way Christian schools "refuse" to care for disabled children and am sure if they got the Federal funds public schools get, there would be no such comment. In the "old" days I suspect the old programs open to many disabled children were initiated and/or run by church groups.
WHAT GOES AROUND, CAME AROUND? In the case of DSA of Wisconsin, the big event was the NDSS Convention July 9 through 11 in WI. When Robert was born in '72 it seemed to me that the only true national targeted Down syndrome group was in Wisconsin. There were two "National" groups in Chicago with one claiming to be National in thrust and that which is now NADS was restricting their efforts to the Chicago area. I can't evaluate the situation prior to Robert's birth 26 years ago, but I chose to affiliate with the NADS predecessor, but backed out when I found out about the conflict between those two groups. Also, I had discerned that the lady that ran the NY group wasn't interested in collaboration with other groups unless she was named President. There were two competing groups in Mexico also. So it seemed to me that my efforts should be directed to establishment of an international DS Congress. We did that with open rejection from only one of the groups mentioned above and although the leader of that group denounced me personally for accepting funds from the Federal government to help outstanding professionals concerned with DS attend, he remained a true friend and compatriot until his death.
The Wisconsin group had been organizing an expensive but excellent program on Down syndrome so I consider the NDSS a pay-off of sorts for their early pioneering DS work and I hope it brings rewards to both NDSS and the State of Wisconsin. The DSAW Web Site is at www.dsaw.org and their Email goes to firstname.lastname@example.org. Next time consider keeping costs down so the less wealthy parents of children can attend.
V.8 #2 of their newsletter featuring an article on LEARNING TO TALK, which gives the following contact for related printed material (332 Munving, Columbus, OH 43202, Fax: 614-447-0010 and Email: email@example.com. I assume that is Dr. James MacDonald at Ohio State University, who directed a 25-year clinical research program which included over 200 families that included a child with DS. Eleven reasons why children with DS have difficulties learning to talk are listed. It also contains an article on antioxidants by Ph.D. Carlo McGill, and a copy of an article by Dr. Tarter of the Bay Area on Atlanto-axial instability (I want to identify a former Wisconsin physician, Dr. John Opitz, who I believe was the first to sound the alarm about this condition). It also contains the policy: "the DSAW does not endorse, recommend or support any particular regime, therapy or treatment," which is almost exactly the words I used 25 years ago. It precedes a letter from a parent endorsing Dr. Warner and provides contact information on his September visit to Milwaukee.
I must again congratulate the Catholic and Lutheran people in Wisconsin, who decades ago founded large community homes for developmentally delayed people and have run excellent programs since them.
FIBROMYALGIA ALLIANCE OF AMERICA. This sounds like a well thought out organization. I'm a member as I have a daughter and daughter-in-law with the malady. Membership costs $25 and includes several issues of a very good newsletter (P. O. Box 21990, Columbus, OH 43221-0990). I noted that the National Institute of Arthritis and Musculosketal and Skin Disease (NIAMS) has about two-million dollars for research projects. Other NIH organizations provided some of those funds. If you are willing to start a support group and want our help, let us know.
MAKING SENSE OUT OF SOUNDS. An AP article with a Rolla, ND byline is headed. The article relates to Auditory Integration Training which a fellow from Ireland offers in Rolla. It involves sounds modulated so that loudness seems to pulse in intensity with the hope that it can retrain the way the brain processes sounds. It seems to this writer that this is the type of music that Robert likes, but I'm not aware of any research studies indicating it has therapeutic value. Although I have a negative feeling about AIT send us any facts on it that come your way.
All things bright and beautiful,|
All creatures great and small,
All things wise and wonderful,
The Lord God made them all.
Each little flower that opens,
The rich man in his castle,
The purple-headed mountain,
The cold wind in the winter,|
The pleasant summer sun,
The ripe fruits in the garden,
He made them every one.
The tall trees in the greenwood,
He gave us eyes to see them,
PARALYSIS SOCIETY OF AMERICA. I'm a member due to my membership in the Paralyzed Veterans of America. If you are paralyzed or know of someone who is why not call 888-772-1711 toll free and ask for an information packet, or write 801 18th N.S., Washington, DC 2006-3517. I have had a disoriented corroded (as it looks to me based on x-rays), coccyx (last four bones of the spine - perhaps where ancient ancestor's tails were attached if they had any) for at least a decade and I blame my osteoarthritis on its condition. PSA is concerned with any spinal cord injury or disease.
ASSISTED SUICIDES/MEDICAL AND DENTAL TREATMENT. The Arc is considering proposed policy statements on this issue and we strongly endorse the draft prepared by the Upper Valley Chapter. It provides good background, but we hope they will add a section on the increasing numbers of people living happily at advanced ages and on the significant medical advances that have been made or likely will soon be. They also have an excellent medical/dental treatment policy which would require informed consent of the disabled person or his/her surrogate decision-maker and informed consent is defined.
MINOR VS. MAJOR DISABILITIES. Joseph Shapiro on pages 41 - 42 of the 7-6-98 US NEWS AND WORLD REPORT, has an article on ADA inserting the adjective "minor" before the D and indicating they are the beneficiaries. I believe the Nation is the beneficiary of ADA and believe Congress and the courts can find ways to deal with bad backs, bad hearts, cancer, diabetes, learning disabilities, arthritis, and epilepsy. If you have opinions on who should or shouldn't be protected I suggest again you forward US Congressional representatives be he/she from your political party or not and regardless of locations in the House or Senate. I don't believe anyone should be discriminated against, but neither do I think citizens need to make other than relatively minor adjustments to accommodate someone with a disability. There probably should be an agency that issues a certificate to people claiming disability as to degree and or proof. I fit several categories listed by Shapiro above, but don't have a disabled parking permit, receive any compensation for disability, or am considered by many yet as being disabled. If Congress wishes to get the unemployment rate of severely disabled people lowered they may have to pass an employment preference law. This publication targets severe disabilities and people deserving of help to overcome them.
DOWN SYNDROME AND COMMUNICATION DEVELOPMENT. A 27-year clinical research program. James D. MacDonald, Ph. D. Communicating Partners 332 Mimring Road, Columbus, Ohio, 43202. E-mail: firstname.lastname@example.org.
Dr. MacDonald 's mission for over 25 years has been to discover how parents can help late talking children become interested social partners in society. From 1971 to 1995 he was a professor, researcher and therapist at The Ohio State University, specializing in communication disorders of late talking children, especially ones with Down syndrome and other developmental delays. In 1995, he began the Communicating Partners Center, a clinical and educational resource for parents and professionals. In his research with over 300 families of children with Down syndrome, he has addressed several questions: 1. What do children need to do before they speak? 2. How can parents and other adults play and communicate with our children to help them communicate and socialize? 3. What specific problems interfere with children with Down syndrome learning to communicate and become socially accepted? 4. What kinds of home programs have parents used to successfully help their children with Down syndrome talk and build friendships? 5. Why is the home a more important place than school to ensure that children communicate?
On the basis of such research, Dr. MacDonald has published a series of books, home manuals, assessments and video training tapes that are widely used by parents and professionals. The book, Becoming Partners with Children, describes the development of communication from the earliest play activities to turntaking and nonverbal communication and then through language and conversation; the book is unique in that it focuses on the problems and successes of late talking children as well as the role that parents can play at each developmental stage. Many parents and professionals use the book to guide their relationships with children with Down syndrome for several years.
In addition to the Becoming Partners book, Dr. MacDonald has developed several manuals and videos for addressing specific problems. He is particularly interested in helping parents develop communication for ensuring that children with Down syndrome become social and communicative with genuine friendships. To this end he has presented several times at the National Down Syndrome Congress (1985,1996 and 1997) and to local Down syndrome groups in Ohio, Kentucky, West Virginia, Indiana, Michigan, Pennsylvania, New Jersey, Florida, South Carolina and California.
Recently, Dr. MacDonald has established an Internet web site at http://www.jamesdmacdonald.org for educating parents and professionals about his work in Down syndrome and other developmental delays. It is his hope that the web site and the practical training materials will make parents a much more active force in helping children with Down syndrome reach their potential as effective and enjoyable social partners in society.
PREVENTING ORAL-MOTOR PROBLEMS IN DOWN SYNDROME. Our correspondent Alice Castellano, E-mail: email@example.com informed us about this article published in ADVANCE for Speech-Language Pathologists & Audiologists, August 4, 1997, p. 20, by Sara R. Johnson, MS, CCC-SLP, 210 Oakridge Commons, South Salem, NY 10590, (914) 533-5010, fax: (914) 533-5012, E-mail: OromotorSP@aol.com, URL: http://members.aol.com/oromotorsp/ and challenges the therapeutic community to address and prevent the following seven structural/functional disorders: high narrow palatal vault; tongue protrusion; mild-to-moderate conductive hearing loss; chronic upper respiratory infections; mouth breathing; habitual open-mouth posture; and the impression that the child's tongue is too big for his or her mouth. The following feeding scenario will affect speech/articulation muscles beginning with a weak suckle, where the nipple is enlarged and formula flows easily into the infant's mouth, encouraging tongue protrusion to stop the flow and allow the child to swallow. Ears always must be higher than mouths to prevent milk from entering the eustachian tubes that can result in chronic otitis media. Fluid build-up in the middle ear frequently leads to upper respiratory infections, where the nasal cavity becomes blocked and the child transfers from nose breathing to mouth breathing, where the jaw drops, encouraging a chronic open-mouth posture. If the tongue is not resting habitually inside the mouth the result is a high, narrow palatal vault. The bottle position should be altered to introduce the bottle from below the mouth, vertically encouraging a slight chin tuck, which is effective using bottles with disposable liners. Breastfeeding mothers should follow the same principals of early therapeutic feeding. Now that Emmanuel is a toddler, we encourage lip closure with a plastic flute and do oral-motor massage with toothettes, NUK toothbrushes and Q-tips®.
SCHOOLING CHILDREN WITH DOWN SYNDROME. TOWARD AN UNDERSTANDING OF POSSIBILITY. Kliewer. C. 1998, E-mail: Christopher.Kliewer@uni.edu.
In Chapter 5, Citizenship in the Literate Community: Down Syndrome, Communication, and the Written Word, which was excerpted in Exceptional Children, Vol. 64, No. 2, pp. 167-180, Kliewer writes that Nigel Hunt's mother would spell out words in the kitchen to her son and later used magnetic letters, in a time when, according to Nigel's father, it was assumed that "Mongoloids cannot read". Our children have low verbal short term memory (Language and Reading in Down Syndrome, from 5 to 25 Years, NDSS 1997 Conference on Cognition and Behavior) and visual digit spans: we are teaching Emmanuel to follow two sequence verbal commands and match flash cards because we assume our son will be literate. In The World of Nigel Hunt. The Diary of a Mongoloid Youth, Nigel monopolized his father's typewriter; so Nigel had to have his own, with which he wrote his book. Emmanuel already covets my computer. Kliewer notes that L. F. Meyers has used computers to teach our children spoken and written language skills and that S. Buckley concludes that the written language supports the development of our children's speech.
BOOKS ON DOWN SYNDROME
Baker, Edward I. The Five Women in My Life, An Autobiography. Self-published. 6866 Huntington Lane, Apt. 705, Delray Beach, FL 33446.
Lorenz, Stephanie. Children with Down's Syndrome: A Guide for Teachers and Learning Support Assistants in Mainstream Primary and Secondary Schools. David Fulton Publishers. Telephone: 0171 405 5606. E-mail: firstname.lastname@example.org
Bérubé, Michael. Paperback reissue. Life as We Know It: A Father, a Family, and an Exceptional Child. Random House.
Stray-Gundersen, Karen (Ed). Spanish Edition. Bebés con síndrome de Down. Guía para padres. Woodbine House.
Hassold, Terry J. & Patterson, David (Eds.) Down Syndrome: A Promising Future Together. Forthcoming. John Wiley & Sons, Inc.
Rondal, Jean A., Perera, Juan & Nadel, Lynn (Eds.). Forthcoming. What Do We Know about Downs Syndrome? A Review of Current Knowledge. C. Whurr Publishers, London.
BILINGUAL CHILDREN WITH DOWNS SYNDROME. This article in Down Syndrome News and Update, Vol. 1, No. 1, p. 29-30 summarizes S. Buckley's personal views based on her extensive practical experience and begins with the statement, "There is no research literature or systematic study of bilingualism in people with Down syndrome..." In a personal communication, J. A. Rondal states the same lack of research. Buckley encourages the bilingual family to expose a baby with Down syndrome to both languages, but suggests that specific language teaching activities, including reading activities, focus on the language the child will use in school. Emmanuel is being raised bilingual. We have noticed that once he acquires a word in one language, he quickly learns the translated counterpart, presumably because he is learning a synonym. We wrongly assumed that bilingualism could serve as a therapy adjunct to speech development, but this is not the case. On the Internet, a message thread regarding Down syndrome and bilingualism can be found at:
THE 6TH WORLD CONGRESS ON DOWN'S SYNDROME. Madrid, October 1997. Excerpted from a report by María Dolores Maurín.
62 countries, 32 guest speakers, 34 workshops with over 200 speakers, 23 self advocates, 2000 participants and representatives from Belgium, Brazil, Canada, Indonesia, Japan, Saudi Arabia, South Africa, Spain, the United Kingdom and the United States spoke of the challenges the Down Syndrome Associations face for the 21st century, followed by the official presentation of the International Federation for Down's Syndrome (FISD). Dr. Juan Perera, read the conclusions of the Congress during the closing ceremony and announced the next World Congress in the year 2000 in Sydney, Australia. The conclusions of the Congress have been published in Down syndrome reviews (see PWSN/DS Report, February 1998) and have been translated into 18 languages. The Congress contributed significant scientific advances, promoted contact between parents and professionals worldwide and presented a new and positive image of people with Down syndrome.
Prizes were awarded to Professors C. J. Epstein and J. A. Rondal for their research, and to Antonio Gijón, Spain and Silvia García Escamilla, Mexico for their personal dedication and work on behalf of Down syndrome. Prize recipients with Down syndrome were Pascal Duquenne, Belgium and Ana Cristina Souto de Oliviera, Brazil. Prizes for best scientific papers went to Professor John Rynders, University of Minnesota, Dr. Ariel Villagra, Polytechnic University of Madrid and Professor Svetlana Arbuzova, University of Donesh, Ukraine.
We will cover in this issue, Michael Guralnick's plenary presentation, Developmental and Systems Linkages in Early Intervention for Children with Down Syndrome in What Do We Know about Downs Syndrome? A Review of Current Knowledge (in press), which describes the parental and family patterns of interaction that substantially contribute and influence the child's developmental outcomes which could help promote longer term effects of early intervention. When a child is born with Down syndrome, a set of potential stressors comes into play: (a) information needs, (b) intrapersonal and family distress, (c) resource needs, and (d) confidence threats. At least three primary patterns of family interaction substantially contribute to child developmental outcomes: 1) The quality of parent-child transactions such as responsivity, sensitivity, scaffolding, and engaging in nonintrusive, affectively warm, and discourse-based exchanges. 2) Experiences families provide and orchestrate for their children, such as developmentally appropriate and stimulating toys in the home, and organizing social, educational and recreational interactions with adults and children. 3) Family patterns of interaction that regulate the health and safety of the child, such as nutrition. These are in turn governed by a set of family characteristics, which include intergenerational and culturally transmitted attitudes and beliefs about child rearing, and parental mental health and intellectual abilities.
It is important to note that even with therapeutic services that are integrated in the formal intervention programs, the total amount of such services tends to be small. For infants and toddlers with Down syndrome in the United States, the average amount of time spent in these formal intervention programs is approximately 7 hours per month, thus the primary therapists are the parents, who need to be trained and informed to ensure their child's optimal effective outcomes. The formation of collaborative parent-professional relationships appears to be an essential element of success (Guralnick (1998) AJMR, 102(4), 330. Effectiveness of Early Intervention for Vulnerable Children: A Developmental Perspective), so we interview Emmanuel's therapists to ascertain if they are educable, or merely trainable.
HOPE HAVEN DOWN SYNDROME CENTER 4600 Beach Boulevard, Jacksonville, FL 32207, (904) 346-5100, Fax: (904) 346-5111, offers developmental evaluations which include medical/physical development, psychological development, educational progress, speech and language skills development, behavior/social skills development and physical/occupational therapy goals. Parents receive reports and recommendations to use in determining individual educational plans and other developmental goals. The Riverside Foundation and the Hope Haven Children's Clinic cover most of the costs. More than 160 families, including some from abroad, have come for evaluations to the Down Syndrome Center, which was opened in August 1996 and was featured in The Times-Union of Jacksonville, April 7, 1998, pp. C-1 & 2, which states that the Center is the only one of its kind in the Southeast and has attracted families from as far away as Australia and Germany. Emmanuel's appointment is in October. For more information call the Down Syndrome Center Coordinator, Laura Watts, M.Ed.
THE EFFECTIVENESS OF EARLY INTERVENTION FOR CHILDREN WITH DOWN SYNDROME by Donna Spiker and Marita R. Hopmann is a chapter in The Effectiveness of Early Intervention, edited by Michael J. Guralnick, which begins with the idyllic description of the first few months, when strangers are less likely to identify the child with the stigmata of Down syndrome and parents report that their baby with Down syndrome is "just like" any other baby. Tests of early infancy may evaluate our babies as "normal", supporting parental dreams of escaping mental retardation for their child. With the passage of PL 94-142, subsequently IDEA, and medical treatment, we are told to have high expectations and that the upper limits for Emmanuel are unknown. Will my son, firmly rooted in the next millenium, who eats mahi-mahi and has a toy that repeats, "chill out, baby", in a world where all vinegars are balsamic, face the almost inevitable disappointment, as the developmental differences become readily apparent by school age? The authors address the hope that if early intervention proceeds at a faster rate, higher final levels of cognitive, linguistic, adaptive, academic and social skills can be attained. Solid empirical evidence in peer-reviewed journals have not been published that early intervention targeted for children with Down syndrome has clear and beneficial effects. In a longitudinal study, Carr, J. (1988) shows a Developmental Quotient decline from a mean of 80 at 6 months to a mean of 45 at 4 years; language and academic skills at 21 years showed mean mental ages between 4½ and 7½ years. Carr notes, "...these 21-year-olds were not fully independent, could not manage their own lives, were not and would not be self-supporting". Gibson and Harris (1988) published results of a meta-analytic review of 21 early intervention programs for children with Down syndrome born in the 60's and 70's and concluded that while short-term benefits seem to be apparent, there was no strong evidence to support the contention that intensive early intervention promoted later enhanced school-age performance.
So what is a parent to do? Not willing to throw early intervention out with the baby's bath wash, there are at least two sources to refer to: 1) The 1990 volume edited by Cicchetti and Beeghly, Children with Down Syndrome: A Developmental Perspective, and 2) Improving Educational Programming for Individuals with Down Syndrome: Engaging the Fuller Competence, by John Rynders, et al., (Down Syndrome Quarterly, Vol. 2, No. 1, March 1997, pp. 1-11) which offer these guidelines: a) Engaging Language Ability by using pretend play and manual signing; b) Engaging Motor and Language Combinations by blending aspects of language, auditory and visual perception and fine motor ability to stimulate early reading abilities; and c) Engaging Academic Ability with inclusive settings, using the instructional attributes of computer-generated speech and computer-monitored graphics and text, mathematical alternative teaching with digital watches and hand-held calculators.
THE IMPACT OF TREADMILL EXERCISE ON THE RATE OF DEVELOPMENTAL PROGRESS IN INFANTS WITH DOWN SYNDROME: PRELIMINARY RESULTS OF A CLINICAL TRIAL was a presentation at the First Biennial Scientific Conference on Down Syndrome in Vancouver by D. A. Ulrich, Ph.D and B. D. Ulrich, Ph.D. Summary: Walking is a critical milestone in infant development because it forms the foundation for the development of future game and physical activity skills, but also because of its impact on the cognitive and social domains. Cognitive developmentalists suggest that infants learn more about spatial-perceptual relations with the onset of walking. Infants with DS acquire this skill, on average, one year later than nondisabled infants. It is hypothesized that treadmill practice (5 days a week for 8 minutes each day) would strengthen the neural organization that initiates the stepping pattern, increase leg strength and develop postural control mechanisms needed for walking. With 20 infants completed, results indicate that infants in the experimental group progress from sitting to walking 91.1 days earlier than the control group.
A MULTISENSORY PROGRAM FOR TEACHING READING was the title of the presentation given by Laura Felzer, E-mail: email@example.com at the 26th Annual NDSC Convention, August 7-9, 1998 in Dallas, Texas and described a Signing Based Multisensory Reading and Language Program in which the children learn to read by seeing, hearing, saying and signing printed words and phonetic sounds. Comprehension skills are emphasized throughout the program as children learn to read words, sentences, stories and books. The signing component of this program also helps the children increase and develop their speech and sight words and simple sentences are taught before phonics. This approach, as outlined in the booklet A Multisensory Reading Program That Really Works, has two key features. The first is that the students not only see, hear and say the words they're learning but also see and handle corresponding objects - objects like balls and toy cars. The second and even more significant feature is that the students learn signs for their words. My wife Gloria enjoyed this workshop at the NDSC Convention with the video featuring six Hispanic children with Down syndrome and we plan to introduce this program to Emmanuel.
Inclusion was the subject of EVALUACIÓN DE LA INTEGRACIÓN EN ESPAÑA, published in Revista Down, No. 8, March 1998 by Antonio Gijón, based on 823 returned questionnaires from the 52 Down syndrome associations in Spain. 87% are included. 51% learned to read at home and at 8 years become reasonably competent. 16% take dictation, 4.5% write phrases and 8.5% write their thoughts. 30% count to 20 or 30, 23% add and subtract, 7% multiply, 3% divide and 1.5% use fractions and decimals. Suggestions: improve the role of the teacher aide, repeat grades and encourage continuing education for adults with Down syndrome.
HOW INFANTS LEARN LANGUAGE/US NEWS & WORLD REPORT. This newsweekly has started a science section and on pages 48 - 53 of the 6-15 issue there is an in-depth article titled "Baby Talk" as the motivator, but first I want to make some extraneous comments on the publication. I stayed for a week 30 years ago or so with Zuckermans in suburban Maryland near DC and although I don't recall meeting Mortimer Zuckerman, who is the Chairman and Editor-in-Chief, I suspect he was the son or brother of the lady of the house. I have liked the publication since its founding and believe their half dozen science writers led by Nancy Shute won't miss many significant science findings. Call 800-333-8130 to find their best long-term subscription rate. See our Chimaras article as although "Baby Talk" doesn't mention them by name, much of the questions brought out in the Williams Syndrome sub-subject perhaps can be answered by Chimeras. The article says Ursula Bellugi with the Salk Institute has found that Williams subjects use both hemispheres of their brains in shouldering the tasks of processing language. Researchers are trying to link the actual characteristics of Williams to missing genes and changes in brain tissue. They are concentrating on the neocerebellum.
One statement that should interest the Bishops since Emmanuel is being exposed to both Spanish and English is: "Hearing more than one language in infancy makes it easier for a child to hear the distinctions between phonemes of more than one language later on."
CHIMERAS. These are human engineered creatures whose genetic machinery churns out alien biochemicals. They weren't recognized or didn't exist when I started to get a movement going to improve the lot of people with DS so I couldn't refer to them to install optimism in critics who said too many genes were involved to hope for DS improvement. Fortunately, teachers, psychologists, medical specialists, caregivers, and people with DS themselves opted for improvements. How much the improvement we have seen in the past few decades depended on transgenic animals is unknown to me but I'm thankful humans have used their God-given brains to learn more about life and how to improve it. The idea for this article came from pages 23-30 of the July SMITHSONIAN so if it is intriguing ask your librarian to help you find those pages, even though the particular human condition you want improved is not necessarily directly mentioned. Ralph Brimstar of the University of Pennsylvania is identified as a pioneer in this field. He is quoted as saying: "When people look back 50 years from now our ability to modify life-forms will be seen as one of the most important developments in the 20th Century.
One of my conference "buddies" in the early 70's was Dr. Bob Guthrie who did much to promote diagnosis of phenylketonuria; he would be pleased to learn that two nutritional products for victims of that disease are being produced by PL Therapeutics in Virginia. The article also reminded me of a call from Dr. Linus Pauling as it posed the question: "could human proteins be produced in urine?" Dr. Pauling had new equipment and offered to collect and do basic research on urine from people with DS; I tried several scientists, who I thought were needed to establish a secure method of collection of the urine, but perhaps because Linus had no applied research in mind (specific goals, hypothesis), I couldn't get it done. Sorry, all you millions (including Robert) with DS! Anyhow, Bob Wall (biologist with USDA in Beltsville) gave a resounding yes to the question and produced impressive quantities of human growth hormones.
The article concludes with a philosophic discussion of gene therapy (in which the genetic alteration is not passed on to the next generation), and the contention of Dr. H. T. Engelhardt, Jr. from Baylor that the capacity for human beings to change themselves or their offspring in positive ways cannot be dismissed or denied on any valid moral grounds. So get off your apathy and do what you can to help causes such as DS. Inertia is the physical cousin of human apathy and humans have overcome much of it. If we diminish the power of apathy there is no telling how people will be able to better enjoy the coming millennium!
REGIONAL DS CENTERS. I advocate for them, but your suggestions for recognition and identification are probably as good as mine. I have had a half century of academic type concern for 10 disabled people and a quarter of century direct involvement with DS. However, one inquiring and analytical mind without experience could possibly see in this regard what all others have missed. We now have several exceptional "national" organizations and several connections between various nations, but no clearly outstanding international clearing house for information on DS. The need is for a local organization that advocates can belong to which creates the feeling of an extended family or clan. Many communities can't provide that type of an organization but every region can. One such group clearly identifying itself as a "Parents Regional Outreach for Understand Downs" calls its house organ by the acronym PROUD (P. O. Box 5822 Orange CA 92863-0833 - 714 -974-6419). In their case, there is no fee, but they do seek gifts and run money-makers to pay for outreach communication costs. Their Email goes to firstname.lastname@example.org and their web page is at http://www.dsaoc.org/; it is maintained by Vincent at email@example.com . I strongly encourage you to attempt to establish a DS center in your locale and affiliate with both NDSC and NDSS. However, if you prefer independence there is no reason you can't go it alone. It is lonesome out in the boonies, but it needn't be. Why not tell PROUD, NDSC or NDSS that you would appreciate their help in getting a regional communication center on DS established in your area?
PERSONAL POST OFFICE. 800-574-8639, program 5479 will provide details on this Pitney Bowes offer or write 40 Linderman Dr., Trumbull, CT 06611-9874.
SPECIAL ED PERCENTAGE DIFFERS. The 6-24-98 EDUCATION WEEK has this article on the front page but it's old news to us. Greenwich, Conn. defines about 18%, Chicago finds 4.1% need special education and Boston in '94 - '95 found 21.1% did. This has gone on for nearly a quarter of a century so isn't likely to be leveled off soon. We encourage educators to attempt to serve all students well, catering to their individual needs. Labels don't produce good citizens, but dedicated educators can!
MICHIGAN SCHOOL DISTRICTS VS STATE. After 18 years, EDUCATION WEEK says some 87 districts received $211 million due to a court decision that the state failed to adequately fund its special education mandates.
FIBROMYALGIA. The July/August ARTHRITIS TODAY mentions this condition several times and reported (on page 21) from the Annual Meeting of the American College of Rheumatology comments of two Medical Doctors (Korszun & Crofford) from the University of Michigan concerning their findings related to melatonin secretion in 17 pre-menopausal women with fibromyalgia as it varied over a 24 hour period. The subjects had significantly elevated melatonin levels. It certainly questions taking the supplement if the body already produces too much. That issue also contains a full page ad for the FIBROMYALGIA WELLNESS LETTER which the premier issue of which will be free (1330 West Peachtree Street, Atlanta, GA 30309, or just call 800-933-0032).
DISABILITY FUNDING NEWS. We don't subscribe as it costs $259, but they provide a full refund during the first 90 days (8204 Fenton St., Silver Spring, MD 20910). The 6-29-98 issue says H. Res. 399 passed 405 to 1, but the House appropriations bill hasn't been acted on yet and that issue says the bill provides more than last year but is below Clinton's request. The issue contains a nice chart sharing the 30 or so programs in the four agencies considered for appropriations showing current and requested funding and what the committee tentatively plans. You could probably get a status report from Rep. Porter at 202-225-4835.
KIND WORDS AND MONEY FROM M.L. KOLCHINS, M.D. His office is at 5400 Balboa Blvd, Suite 105, Encino, CA 91316. We want to publicly thank him as we enjoy putting out the newsletter, but won't continue if readers don't monetarily support it.
EARLY CHILDHOOD CONNECTION. This is one of the Pacer Center publications. You can ask for a sample copy at 4826 Chicago Ave. S., Minneapolis, MN 55417-1098. The front page of the Summer Issue is labeled "Knowing the disability helps your child" which we couldn't agree with more. You can get the PACER handout on national and Minnesota disability organizations (612-827-2966). The center pages are titled "Financial Planning can allay fears about your child's future well-being" which we will send to Robert's sister, Mrs. Margie Brekken, who likely will soon be his SSA Representative Payee.
HEMOCHOMATOSIS. Iron overload probably identifies the condition adequately, but people with chronic fatigue or fibromyalgia should probably be tested to see if any overload is part of their problem. You can learn more at www.armican.hs.org. or send a SASE with 2 stamps to 777 East Atlantic Avenue Z-363 Delray Beach, FL 33483-5352.
CINEMA FACILITATING DISABLED ATTENDANCE. Carmike Cinemas will require managers to remove any barriers in accordance with Title III of the ADA. If one of their 510 theaters are near you, please tell them "thanks."
OLD PEOPLE MAY BE DISABLED. Forty-three million plus are more than 60 with 3 million over 85. Nine million live alone, 80% of who are female. Half of those aged 85 or more live alone. Consider the foregoing and if you have suggestions for the prevention of disability make significant officials and organizations aware.
EMPLOYERS WIN MOST ADA SUITS. The American Bar Association says since 1992 they have won 92% of the cases decided by a judge and 86% of those resolved by EEOC. However, even when charges are dismissed, attorney's likely will charge $25,000 or more.
EMPLOYEES PAY $181.53 MONTHLY FOR FAMILY MEDICAL COVERAGE. That's according to BLS and is rising.
U. S. PUBLIC HEALTH NURSING. Most of the information herein came from last year's booklet titled "50 YEARS OF THE DIVISION OF NURSING" and an earlier one called "A CENTURY OF CARING." The later source starts with the first organized nursing agency or settlement house in New York city before the turn of the century. The first source starts with the establishment of the Division of Nursing in 1946. I have noticed the increased evidence of nursing professionalism for several decades based on the number of nurses using libraries I frequented; perhaps the '80's with the growth of nursing doctoral programs deserves most of the credit, but AIDS made its advent about the same time and certainly stimulated nurses to do more. My grandmother was (among many things) a midwife in pioneer days in Minnesota. Nursing was a respected caring profession in those early years and now is one of the fastest maturing professions in the nation. Thanks to all of you who are part of it and also to those who assisted otherwise in providing good health care.
ROBERT'S BURIAL EXPENSES/INSURANCE. As previously reported he purchased a site and gravestone some years ago and established irrevocable CD's for mortuary charges, casket and vault (with interest added). He also took an "Arc's backed" term Life Insurance policy for which he pays $45 twice a year through the Wohler's Company and Continental Assurance, (which will pay $6,000 when he dies). Apparently, he could buy up to $100,000 of coverage with increased premiums. These burial expenses are excluded from his SSI resources maximum.
The AAMR NEWS & NOTES contains a fourth page ad on an insurance policy to provide funding for special needs burial expenses. They say nobody is turned down. Call 800-233-1957 for details. Let us print your reactions to advanced burial planning and any specific insurance facts you are willing to speak out on.
PEOPLE FIRST. Deb Silvernagel works at the Adjustment Training Center and is the official in charge of the local People First Organization. Doren Serfling is the President. The Arc of SD started/backed the People First Organization in this State and if you want to get the facts you can write the State Arc Executive. We always have endorsed People First, but Deb deserves special credit for assisting the local chapter and because of that also assisting with the overall State effort.
On 7-17 they had a bowling party and picnic which all the members enjoyed; none more than Robert as he got 6 strikes and a spare in one game with a total score of 171 pins down. Every community should have a People First Organization so write John and find out how you can help...I don't want anyone to think that someone like Deb will automatically appear and stick with it, but she and her husband must be rewarded or they wouldn't help and I never have had a hint they feel imposed upon. Of course, we know most of the members and realize they deserve someone like Deb. Somewhat as an aside, but worth an article by itself, is the volunteer work provided locally by motorcycle riders who support Deb's efforts (she is one of them) and also assist with the big dinner and dance after the SD State Special Olympics Bowling Tournament; great people and wonderful chaperones and guards.
NADS. We hope you at least know that is the acronym of the National Association for Down Syndrome. If you want to know most of the pertinent information about NADS, write them (P. O. Box 4542) Oak Brook, IL 60522-4542 and ask for a copy of their '98 annual report. I have been privy to their historical record since 1972 when I first joined and formed a Chapter in the DC area. They state in the background section that the group has always concentrated most of it's energy in the Chicago land area, but there is no doubt in my mind that the NDSC would not exist if we didn't have the support of NADS. Their program and achievements are legend. They have nearly a half million dollars in assets, but it seems demeaning to leave the impression that those assets equal the advantages that people with DS around the world have gained in the nearly half decade this group has functioned. Since '79 Sheila Hebein has been the Executive Director and her letter starts the report; she gives credit to volunteers but to a large extent she and her predecessor regardless of their title are also volunteers. There is no doubt she and her son, Chris, have and will continue to achieve because of the cumulative effort of all the NADS officials and other volunteers over many years. You can be assured that anything you can do for NADS will profit people with DS.
AAMR SPECIAL INTEREST GROUPS/DIVISIONS. Few members of AAMR belong to more than one division probably because they like the family atmosphere of their primary division (say, Education, Legal, Leisure, Medicine, Nursing, Psychology, Social Work) but there are 16 divisions and the second and succeeding divisions cost only $8 each. SIG's (special interest groups) are free regardless of the number selected, but there are only 9 to choose from and I doubt any provide the close sense of belonging that a division does. I have enjoyed the Down Syndrome SIG for many years and was the facilitator that first started it. Dr. Ted Tjosem was perhaps our most effective facilitator. AAMR is an old professional organization and I, for one, have taken pride in what has been done for much more than a century. However, it costs money to join. If your income is less than $25,000 a year, you can become an associate member for $26 from now until September or for only $13 from October through December and get everything provided other members except either one of the journals. NSU gets both so I read Robert's and the other at NSU. You can just be a supporting member for even less but you have to forego both journals although you will get the excellent newsletter which is better than many journals of other organizations. I particularly enjoyed the article "Special Athletes. Normal Athletics" in the current issue. Write 444 N. Capitol St., NW, Washington, DC 20001-1512 for specific information and ask for their current resource list. Dr. Stan Herr is currently the AAMR President and you will enjoy being on his team and be proud you joined.
NDSS UPDATE. The Summer issue gets about as much out of 6 pages as can be got. I have always liked what Betsy Goodwin has had to say even before she decided to start NDSS and perhaps some day she will reveal her thoughts and experiences. Many parents of people with DS have done that through this paper and you can be sure we would give front page space and run as many installments as it takes to tell her story. Anyhow, my wife called to my attention the p. 4 article on "Michael Johnson Shares His Magical Vision" with a reproduction of his Garden Part 8 painting. Note cards of his work are available from NDSS (666 Broadway, New York, NY 10012-2317) and we strongly encourage you to consider investing in some. Write or perhaps call 800-221-4602. His middle name is Juroque and I suspect there is an interesting story about that, too. Robert's middle name is Jorgen, but we have dropped the pronunciation marks and Robert prefers to drop the entire name, but we were pleased with our older children and I put in the Norwegian name for George because I expected great things from him and thought he would welcome a middle name that would distinguish him from all the other Robert Johnsons. The "lead" article in this UPDATE appealed the most to me because it shows Nannie Sanchez. (who has DS) who was a candidate for the NM State School Board drawing 35% of the vote. Another interesting article reports that you can select from almost a half million books from www.barnesandnoble.com; if you buy first contact http://www.ndss.org and NDSS will get a percentage of the sale.
DISABLED, HANDICAPPED, OR GOLD BRICK? There probably should be more categories. There is no question that Americans have always had a dislike for Gold Bricks who feign handicap or disablements to gain ease or resources. Their reaction to those handicapped, but not disabled is more difficult to typify; indifference doesn't indicate much comparison, I think generosity and well wishes typifies the reaction to those truly disabled. I noted in today's paper a graph credited to SSA which shows a tripling of SSI recipients in this decade and a full AP column stating the House Republicans are trying to make it harder to rip off SSI and to provide stiffer penalties for those caught cheating. It says: "The changes to childhood eligibility are most disturbing to disability activists." It also states that adults must prove disabilities prevent them from working but kids receive funds intended to compensate parents. Since he reached 18, Robert has been on SSI and as his SSA Representative Payee, I feel he is his own man and try to treat him as such. His payment of household expenses has allowed us to feel that Society is an ally. Also, for more than 50 years I have appreciated how difficult it is to separate the need for financial aid from just commiseration. Tell your Congressional contingent you are interested in this matter and would like to keep informed. Keep an open mind!
DS ANGELS. We recently got a trial copy of the bimonthly ANGELS ON EARTH and a calendar with the same name. We aren't trying to sell the publication, but those interested can write Guideposts at P. O. Box 1803, Vernon, CT 06066-9874. My message is that after Robert was born, one of my early friends was Hans Zellweger, M.D., who was an outstanding geneticist. He had worked with Dr. Albert Schweitzer early in Africa. Anyhow, Hans had a collection of angels with typical DS faces and he said in some of his presentations that was because young people with DS made great subjects to paint because they could remain perfectly still. After 26 years I still have an open mind on the relationship of people with DS to angels.
INTERNET GENERAL HEALTH. Onhealth.com is updated twice a day and you can depend on the New England Journal of Medicine to provide accurate information.
SEATTLE DECEMBER 2-5 TASH CONFERENCE. Not cheap, but good - call 1-800-48E-TASH for details. TASH has been looking out for people with severe handicaps since '74. It now is actually named The Association for Persons with Severe Handicaps. They say TASH stands for equity, diversity, social justice, and inclusion!
EMPLOYMENT PREFERENCE EXECUTIVE ORDER. (See also the last item on page 4, and the item on the middle of page 14). During the latter 1950's I was the Personnel Officer for an 18 state industrial area; the agency inspected material for the Navy. Vice President Nixon had more significant responsibilities due to President Eisenhower's health, and was concerned about the under utilization of non-white citizens so he ordered all companies doing business with the U.S. to hire a quota of non-white employees. The rest is history and if you don't think the power of the U.S. has been enhanced by non-male, non-white employees first check the changes since you were born. Anyhow, I'm sending this to my Senator, Tom Daschle, and asking him to consider asking for an Executive Order requesting that employers of 100 or more attempt to employ disabled people for at least 1% of their positions. The Census plan is probably a plan to test the "water" and mentions only 10,000 as the intended number of welfare recipients to be hired. I think an E.O. will stimulate announcements by major industrial and business firms as well as governmental activities of hiring plans for disabled people and the kinds of work intended to be done by them so educators could consider such likely opportunities. Naturally, recognition, bonuses, etc., should be considered for employers that would enthusiastically tackle the goals.
CELIA WYMAN, DS PIONEER. She sent a generous contribution (we consider subscriptions and gifts synonymous with contributions) and a nice note. Her son, Rob, is now 33 and lives in Warsaw, Virginia. When our Robert was born, Celia and Marilyn Trainer were the two key people behind the three jurisdiction Mothers of Young Mongoloids in the DC area. They were very influential in getting the DS Congress established as they had done most of the international/national communicating for parents of youngsters with DS in the U.S. and were happy to see more people involved in the support effort.
ERRONEOUS DS ARTICLE. After more than a quarter century of researching the literature and putting out newsletters on this subject I hate to squabble with anyone in a position to help or hurt infants with DS. However, the JOURNAL OF PEDIATRIC HEALTH CARE in V.#12 '98 on pages 35-37 contains an article sanctioned if not edited by the Dean of the College of Nursing and Health Services at the University of Texas at El Paso. The title is "Trisomy 21 Syndrome: Is There Anything New?" Of course, there is no Trisomy 21 Syndrome. Several chromosomes have the identifier trisomy attached to the chromosome number, but they aren't considered syndromes. DS has several variants, one of which (and the most numerous) is Trisomy 21; research breakthroughs in similar conditions have occurred after researchers pursued the less numerous variants. The article concludes by suggesting a valuable reference "is the local Down Syndrome Association." This is followed by the 800 number of what they call the national office (800-221-602), which actually is for the NDSS. There are several national DS organizations and usually the two largest organizations with 800 numbers are listed (the NDSC number 800 232-NDSC). I will send the journal cited a copy of this article with the request that they print a sequel citing at least the major U.S. Down Syndrome organization.
TEMPERAMENT OF INFANTS WITH DS. An original article in the May/June JOURNAL OF PEDIATRIC HEALTH CARE appears on pages 111-117. The authors state that the general pediatric office will be seeing increasing numbers of children with DS as though they may be unique in some temperament characteristics they have the needs and wants of other children. Reprint requests go to Candace Zeckler, P. O. Box 453, Dayton, OH 45409-0453. Thirty-two infants (29 white and three black) were studied; 29 were term and three pre-term. The mean age was 81 days. Thirteen were female, 15 had no major health problems whereas 16 did. For one year, May 1983 to 1984, families with infants one month to 4 months referred to the DS programs were asked to complete the Early Infancy Temperament Questionnaire (EITQ). Only 3 of the 35 families failed to complete the EITQ; 50% considered the infants behavior as average and 47% found them easy. They were rated by their mother as more active, less intense, and more distractible.
CASHING IN ON MEDICAL KNOWLEDGE. Seth Shulman in an article in Mar/Apr MIT'S TECHNOLOGY REVIEW asks if private profits for sharing methods is too high a price for society. He starts with the multiple-marker blood screen used to detect DS. The researcher who got the patent in '89 was Mark Bogart of the University of San Diego. He either gets a few dollars every time a lab does the test or he sues. One lab pays more than a million dollars a year says Shulman, and says Bogart could get one-hundred-million from the patent. Shulman says public health officials worry that fewer health plans will cover the procedure. Kaiser Permanente is challenging Bogart in court due to the moral implications; a consortium of medical groups have offered finances and expert assistance. One Congressperson is quoted as saying if a precedent is established, people may hesitate to use the Heimlich maneuver for a fear of a lawsuit. Jonas Salk is quoted as responding to questions about patenting the polio vaccine with "could you patent the sun?" Thanks go to the READER'S GUIDE TO PERIODICAL LITERATURE for referencing the article under DOWN SYNDROME and to the Reference Section of the Alexander Mitchell Library for making it available.
BEGGING/INFORMING? For more than a quarter of a century I have written that although it is fun and educational to put out newsletters, I won't continue unless readers pay their way. The cost has gone from $1 to $5, and perhaps some think we have grants or don't believe the paper is worth the price. If you don't have numbers to the right of your name on the label you haven't sent anything recently; if the first number is a 6 or lower your renewal is overdue. It is likely that we will mail the next issue first class only to current subscribers so send us a check for a couple of dollars at least right now.
AMERICAN PSYCHIATRIC ASSOCIATION. A couple of items from their 50th INSTITUTE on October 2 - 6, 1998 in LA follows (1400 K St. N.W., Washington, DC 20005):
Ruth M. Ryan, M.D. is conducting an all day course on 10-4-98 titled "ASSESSMENT AND TREATMENT OF PATIENTS WITH MENTAL RETARDATION." On the same date at 1:30 to 3 P.M., Mark H. Fleisher, M.D. speaks on "ACTIVE TREATMENT OF PRESENILE DEMENTIA IN PERSONS WITH DOWN'S SYNDROME," and Martin J. Lubetsky, M.D. speaks on "PSYCHIATRIC DIAGNOSIS AND TREATMENT IN MENTAL RETARDATION."
NADS "POSSIBILITIES" CONFERENCE. This October 24th Conference looks like it might be the best ever for all concerned with DS including people 16 and over who have DS. In a sense there are two concurrent conferences. Those with DS will get a chance to hear and be motivated by one of our subscribers, B. Chicoine, M.D., along with Dr. Dennis McGuire after registration and introductions. Then at mid-morning Music Therapist, Lynnette Bush will present and just before lunch there will be a session on being a self advocate. After lunch there will be an interactive program with Jimi Gill and Westin followed by dancing which will conclude the conference. Until September 15th registration is restricted to NADS members only and the fee is $25. For parents it is $35 and professions $45. Walk-in registration is $50 but you don't get lunch. For those without DS, the conference starts at 9 a.m. and the first presentation on creative possibilities will be conducted by Denis Berkson of WORD play. At 10:30 a.m., Pat Oelwein, author of TEACHING READING TO CHILDREN WITH DS, will expound on that subject. Just before noon Susan Abrams, who has DS and is a NADS Board member, will share some of her life experiences. In the afternoon there are 14 workshops to chose from led by great people such as Nancy Roizen, M.D., who we quote from frequently and who gave us an original article a while back. It will all occur at the Congress Hotel. Write Peggy Nemec, 301 Highland Road, Hinsdale IL 60521-7071 to register early.
|PEOPLE WITH SPECIAL NEEDS/DS REPORT||Non-Profit Organization|
|Northern State University||U. S. Postage Paid|
|School of Education, Box 850||Aberdeen, SD 57401|
|1200 S. Jay Street||Permit No. 77|
|Aberdeen, SD 57401-7198|
|Revised: December 27, 1998.|