People with Special Needs Down Syndrome Report


VOL. 18 #3SSN0731- 566XSummer 1998 

NOTE: All articles and the I pronoun not attributed to others are written by or identify George R. Johnson, Robert's father. Robert is 25 years old and has Down syndrome.

EULOGY FOR GREAT PIONEER IN AWAKENING THE WORLD TO THE POTENTIAL OF PEOPLE WITH DOWN SYNDROME. I should have done this for others this past quarter of century and at least I will name another father of a son with Down syndrome, who dedicated much of his life to unraveling the medical and physiological facts relating to the condition: that is the late Albert Rosanova, M.D. The late Hans Zellweger, M.D. assisted me with my first pages and continued to provide articles and advice until he died. Another, with his doctorate (but not medical) was our former associate editor Ted Tjossem. Another was former Senator and great Japanese American warrior against social indifference, Sam Hawakaya. Although all of the above were great men, none surpassed Charles Kingsley in doing God's (and that of a whole lot of humans) work while on earth. The following biographical sketch was furnished by his widow, Emily Perl Kingsley, but I want to state that Charles was a past Board member of the NDSC, and that any of the leaders of the Congress this past 25 years, will attest to his humanity, conscientiousness and capability. Also, I suspect they would agree that Jason Kingsley has been and likely will continue to be a model for people throughout the world with DS or otherwise concerned with the condition. The men named above all left the world better than the world they lived in.

(1928 - 1997)

     A resident of Chappaqua, NY, Charles Kingsley touched the lives of countless families. After the birth of his son Jason, Charles became an untiring champion of people with Down syndrome and other developmental disabilities. He was closely connected with the Westchester, NY Arc for many years, serving as President, First and Third Vice President, Treasurer, member of the Executive Committee and Chairman of such key committees as Community Residence, Personnel Practices, Nominating and Strategic Planning.
     Charles was co-founder of the MBIA Invitational, a gold and tennis classic which, in its 13 years, has raised nearly 3 million dollars for Westchester/Putnam Special Olympics and Westchester ARC.
     For nearly 20 years Charles and his family have hosted the annual Down Syndrome Family Picnic, held at their home every first Sunday of August. For many years their home was a site of monthly parties for the teens and young adults with Down syndrome of Westchester County.
     Charles and his family have received many awards for their work in the field of improving life for individuals with Down syndrome, including the Joseph P. Kennedy Award which was presented at the Gala in Hyannis port to celebrate Rose Kennedy's 100th birthday.
     Charles passed away in December 1997. Truly he was larger than life in his beliefs and dedication. Energetic and effective, both idealist and realist, Charles devoted his life to making the world a better place. His life embodies the axiom - one person can make a difference.

THE CHILDREN'S MEDICAL LIBRARY. NDSS referred me to a relatively new father of a DS child whom I enjoyed talking to and to whom I sent a copy of the May issue. I also called that library (1-888-761-KIDS) and asked them to send him appropriate information. Later I received two packets of citations and references from Medline on '97 - '98 articles relating to DS. It's tough, but checking out technical information will subsequently allow you to help your child and others. Anyhow, I was overjoyed as the National Library of Medicine quit publishing the Abridged version of INDEX MEDICUS last year and I can only get the full text when visiting a medical school library (UND has been most gracious). If you are willing to review some technical material and allow us to reprint your reactions we will gladly do so. Gail Lowe of DS InfoSource, Inc. will be doing so; her son is 10 and doing great in an integrated fourth grade classroom (P. O. Box 221316, Louisville, KY 40252-1316). Some comments follow on the next few pages relative to the material I received from the Children's Medical Library.

EARLY MENOPAUSE IN WOMEN WITH DS. The JOURNAL OF INTELLECTUAL DISABILITY RESEARCH (41, PART 3,:264-7, '97 JUNE) reported the age-adjusted likelihood of menopause was twice as high on the 157 women with DS than women with other intellectual disabilities (187) studied. This may be associated with accelerated aging.

OCULAR ABNORMALITIES IN 140 CHINESE CHILDREN WITH DS. This article in PEDIATRIC NEUROLOGY (16(4); 311-4, '97 MAY). "As compared with white children with DS, the Chinese children exhibited a high incidence of refractive error and a similar incidence of lens opacities, but a lower incidence of strabismus, nystagmus, blepharites, Brushfield spots, and keratoconus. Regular visual surveillance, especially of visual acuity, in children with DS as they mature is important in preventing amblyopia."

HIRSCHSPRUNG'S DISEASE (HD) & DOWN SYNDROME. THE JOURNAL OF PEDIATRIC SURGERY (32(5): 724-7, '97 May) relates to findings in Oman where 85 children with HD were born between '89 and '94. I suspect this report from the single Oman pediatrics surgery department is accurate. They also found 9 cases of DS in children also born with HD which comprised 11% of that population. This study confirms what others have said as to the percentages of children with both HD and DS. Please send any information on this matter to Victor Bishop.

GINGIVITIS IN DS. The JOURNAL OF PERIODONTOLOGY (68 (7): 626-31, '97 July) reports that gingival inflammation develops earlier and is more rapid and extensive. The study was by personnel of the Department of Pediatrics Dentistry of Kagoshima University. When I was in Japan more than a half century ago, I was impressed with their progressive dentistry. Robert has had his teeth cleaned and checked twice a year. He uses a Sonicare electric brush and has good sound teeth.

ENVIRONMENTAL DS MUTAGEN? This has been sought for decades, but like a situation I was alerted to years ago in a small SD city by the Mayor, the necessary study is set aside due to lack of resources. In that case an unusual number of births of babies with DS occurred and there was probable cause to suspect drinking water, but SD had only one geneticist at the time and no epidemiologist. The article that triggered this item is by respected scientists from the School of Public Health at UC. They wrote in GENETIC EPIDEMIOLOGY (14(2): 133-45,'97) about a reported excess of DS births in Norway (more than a decade ago), and concluded after computer simulation that there was a huge probability they arose by chance. Forgetting the time and continental difference, it still seems to me their conclusion was too convenient if not too easy! I still think that as many "clusters" of DS birth as possible should be examined to identify common likely environmental factors.

TEN YEAR SURVIVAL OF DS BIRTHS. 389 DS children born in Dublin during the '80's were studied; 88% survived the first year and 82% all ten years.

SURGICAL CORRECTION OF OBSTRUCTIVE SLEEP APNEA. The International Journal of Pediatric Otorhinolaryncology (41(2):133-43, 1997 Aug. 20). Of 48 patients, who had sleep studies, 5 had DS. Uvulopalalopharyngoplasty was performed more commonly on patients with DS. All patients improved significantly with surgical management.

SEASONAL VARIATION OF DS BIRTHS. The abstract from the JOURNAL OF EPIDEMIOLOGY AND COMMUNITY HEALTH (51(4):350-3, 1997 Aug) concludes that such seasonality does not exist.

CEREBELLAR VOLUME IN ADULTS WITH DS. See ARCHIVES OF NEUROLOGY (54(2): 209-12, 1997 Feb.) for this John Hopkins Division of Psychiatric Neuroimaging based article. They concluded that although cerebellar volumes are disproportionately small in individuals with DS, they do not diminish significantly with age. Also, volume reduction in the cerebellum does not appear to be specifically responsible for the age-related decline in fine-motor control that is observed in adults with DS.

HIGH INCIDENCE OF DS IN INFANTS OF DIABETIC MOTHERS. Authors from Saudi Arabia reported in ARCHIVES OF DISEASE IN CHILDHOOD (77(3):242-4, 1997 Sep.) that the 1870 infants of diabetic mothers out of 22,300 neonates born between January '87 and April '94, included 35 with DS. The authors contend that DS should be added to the malformations that occur more frequently when diabetics give birth.

AD LIKE VISUAL DEFICITS IN DS. This article is in ALZHEIMER DISEASE AND ASSOCIATED DISORDERS (11 (2): 88-98, 1997 Jun). The author tested 22 adults with DS and 18 adults with MR, (but not DS) and found results that point to AD-like visual deficits in DS and that the deficits may be present prior to and independent of age associated dementia.

PREVALENCE OF DS IN CALIFORNIA. The article comes from the AMERICAN JOURNAL OF EPIDEMIOLOGY (145(2): 134-47, 1997 Jan 15). The study considered all live births from '89 to '91. The actual prevalence was 1.13 per 1,000 live births, but if terminated pregnancies were considered, it would have been 1.53. The effect of prenatal diagnosis was greatest for whites and least for Hispanics.

HYPOTHYROID CHILDREN SUFFER FROM AUTOIMMUNE THYROID DISEASE. Swedish researchers in ACTA PAEDIATRICA (86(10):1065-7 1997 Oct) came up with such a suggestion after studying 70 children with DS with a mean age of 10.5.

SEVERITY OF DS & AD DEMENTIA CORRELATES WITH SERUM INTERLEUKIN-6 LEVELS. This Hungarian study is in ACTA NEUROLOGICA SCANDINAVICA (96(4):236-40, 1997 Oct). The authors say the findings suggest a disease stage dependent general activation of the immune system both in sporadic AD and in DS with AD.

ANOREXIA & BULIMIA THESE PAST TEN YEARS. See J. AM. ACAD. CHILD ADOLESC. PSYCHIATRY (1998,37(4):352-359) for the complete article by the two Medical Doctors, Hans Steiner and James Lock of Stanford. They found evidence that treatment could be successful. However, incidence is still increasing and anyone with a daughter in puberty should be aware that these are dreadful conditions and disabling.

A RANDOMIZED DOUBLE-BLIND STUDY OF GROWTH HORMONE WITH FIBROMYALGIA. The March '98 THE JOURNAL OF MEDICINE, has an excellent report on this. Since people with Fibromyalgia have abnormal sleep patterns involving stages 3 and 4 of non-REM sleep and growth hormones are secreted predominately during such sleep, this study came about. Forty-five of the 50 subjects completed all 9 months of this study. The researchers hypothesized that suboptimal growth hormones adversely affects Fibromyalgia. However, the approximately $1500 monthly cost for such therapy generally prohibits its use. Reprint requests go to Robert Bennett, M.D., Department of Medicine (L329A), Oregon Health Sciences University, Portland, OR 97201

MEDICAID DIFFERS FROM EXPECTATIONS. It was not intended to be a primary means of paying for long-term care, but has been cited as the major support of the nursing homes (from page 32 of the Winter '98 HEALTH CARE MANAGEMENT REVIEW).

ERRATA: There follows a list of items in our last issue that need corrections: At the top of page 12 I mentioned a question on giant cells in my arteries, but if you are old and have Polymyalgia rheumatica, you may want to ask your physician if you have giant cell arteritis as it is closely related and potentially serious. On Page 11, the name Koster was used instead of Dr. Kastner, but after he received my explanation he very graciously said (as an editor) "there seems always to be some errors."

NEURASTHENIA & HYPOCHONDRIA NEUROSIS. These conditions were recognized for a decade or two in the mid 20th Century. The first was considered to be a psychological disorder especially common to middle-aged women who found themselves without occupation or purpose (with their families gone). The second one related to patients who constantly thought they were ill. Both were related to low self-esteem. Fortunately, more and more such problems are now recognized and many are now diagnosed as Fibromyalgia, Chronic Fatigue Syndrome and other similar conditions. Don't think all people with medical problems are goldbricks--many really hurt and deserve help.

BLOOD ANALYSIS. We have supported Health Fairs such as the annual local one sponsored by the Brown County Red Cross. It includes a blood panel which provides an analysis of twenty some different tests with a printed explanation of each test and a "normal" range for each finding. Robert and his parents usually go together and all get their results at the same time. This year each blood analysis cost $25, but our insurance (GEHA) has refunded the cost in the past and did so again this year. We also wrote Mrs. Dole, Director of the National Red Cross, and asked that she consider establishing a National Red Cross Health Fair program similar to ours with the National office entering the blood analysis on computers so a subject can authorize that results (over say a 5-year period) can be provided medical/nutritional authorities that they approve. Her chief medical officer responded and has referred the proposals to other senior Red Cross officials. This year we all had cholesterol readings above normal and Robert had a reading of 249, which was the worst of the three. His physician will be given the result and since he keeps gaining weight, we expect there will be efforts to reduce both the weight and the cholesterol. He also had a "RDW" reading above the normal range, but since this was the first year for the test we only know that it relates to blood platelets and elevated levels are usually indicative of tissue or other injury.

WHITE BLOOD CELLS. We have many times over a decade reported on the research that Robert and I participate in by the Nutrition Clinic at the University of Texas. They grow the lymphocytes and inject nutrients in the cells to ascertain any excesses or deficiencies. You can apply for this free service by writing Elaine Hrissikopoulos at the clinic, Biochemical Institute, Department of Chemistry and Biochemistry, Austin, TX 78712-1096. Their latest recommendation included the amino acid L-Aspragine for both of us. It serves as amino donor in a certain type of transamination in liver regeneration, participates in the metabolic control of the functions of the cells in the brain and nervous system, and is used to treat the brain and nervous system.

ROBERT ATTENDS A CONFERENCE. He is a member of the Arc, which managed the conference, and is also a People First member. The conference was held at the Crossroads Hotel in Huron. Last year his Dad went with him to the conference in Pierre. The difference between paternal assistance and freedom is probably like many developmentally delayed young adults face in deciding to stay at home or taking on assisted apartment living. Robert had a great time, but still thinks being nearer more family and having his own room sounds better than complete freedom.
     Anyhow, he said the first day was best. Paul Marchand, who has been the Arc PR man in Washington, DC, was the key speaker and impressed Robert. The next day was full and ended with a dance. There was plenty of food according to Robert and he bought several gifts at the silent auction. The People First group took two vans so there was plenty of room and they left and returned when they said they would.
     Next year the conference will be in Aberdeen, and Robert will help in making it fun and worthwhile.

CHILDREN WITH DISABILITIES. Taken from the NCPD NATIONAL UPDATE, Winter 1998. "A recent issue of Disability Statistical Abstract #19, published periodically by the U.S. Department of Education, indicates 40.5% of students with disabilities are in mainstream classrooms at least 4/5 of their school day while 29.9% are with their non-disabled peers 2/5 of the time. 24.1% are educated in separate classes within the regular school while the remaining 5.5% are in separate facilities with even less opportunity to interact with their age peers."
     "The demographic picture of those 4.7 million students included in the Education Department's analysis reveals 51.2% are learning disabled; 21.2% are speech/language disabled; 11.3% are mentally retarded and 8.7% are classified as having severe emotional disorders."

NATIONAL PUBLIC RADIO AIRS DOCUMENTARY SERIES ON DISABILITY. National Public Radio (NPR) is promoting and distributing a recently produced four-hour radio documentary exploring the history that Americans with disabilities have shared over the last 150 years. Beyond Affliction: The Disability History Project is designed to move the general public beyond the common stereotypes of "affliction" and "triumph" and into a more authentic perception of the disability community. Ordinary Americans with disabilities describe the profound impact such attitudes have had on their lives. Historians, leaders of the disability community, and policy makers address the sources of these attitudes. The series, produced by Laurie Block with Jay Allison, is accompanied by six hours of related coverage on NPR's Talk of the Nation, an award-winning live call-in program. On Monday, May 4, journalist John Hockenberry returned to NPR to launch the first two hours of Talk of the Nation coverage, which continued for one hour - per day on May 5 - 8.
     Tapes and transcripts are available. For ordering information, call (303) 823-8000. In addition, a web site currently under construction will explore disability history through literature, photographs, and other primary documents. (The above article taken from the NCPD NATIONAL UPDATE, P. O. Box 29113, Washington, DC 20017-0113)

JOHNNY'S GIFT. In our May issue we ran a review of an article on Johnny Stalling (probably conceived by his father, Gene Stalling), and mentioned that PEOPLE WEEKLY also had one. Now I have seen the 2-2-98 issue and the photographs by Ann States/SABA are worth the effort to secure a copy and see for yourself. Johnny's picture with President Clinton reminded me of the one Robert has in the den with him and Senator Daschle (I doubt that many of the politicians have other than humane intentions when they allow themselves to be pictured with disabled or otherwise deserving people). Susan Schindehette and Gail Wescott are credited as the authors. The first paragraph quotes the equipment manager of the Alabama football team as saying: "The whole relationship between coach and Johnny, well, it somehow just lifted up the spirit of the whole team" for that and other reasons the '92 team won the championship. The Tuscaloosa "Stalling Center" which cares for disabled children up to 5 years of age owes much to Gene and Johnny.

SOMATROPIN SPURS GIRLS' GROWTH. The 4-25-98 SCIENCE NEWS reports the synthetic growth hormone presented no dire side effects. Researchers were from the Southampton University Hospitals in England. The March 28 LANCET contains the initial report. Jean Mulligen was coauthor of the study and she says a similar test is under way with boys.


Success is speaking words of praise,
In cheering other people's ways,
In doing just the best you can,
With every task and every plan,
It's silence when your speech would hurt,
Politeness when your neighbor's curt,
It's deafness when the scandal flows,
And sympathy with others' woes,
It's loyalty when duty calls,
It's courage when disaster falls,
It's patience when the hours are long,
It's found in laughter and in song,
It's in the silent time of prayer,
In happiness and in despair,
In all life and nothing less,
We find the thing we call success.

NUTRITION CLINIC RECOMMENDATIONS FOR ROBERT. Based on his lymphocyte growth nutrition assay, they recommended that he take 400 mg. of folic acid daily, 25 mg. of vitamin B2 morning and night, 420 mg. of phosphatidyl choline daily, and 1500 mg. of calcium with 750 mg. of magnesium daily in divided doses. There also is a recommendation that he take 500 mg. of L-Asparagine four times daily and he take a tablespoon of olive oil daily or otherwise get oleic acid. The research is free so if you or a member of your family are interested, write the Clinic in care of the Biochemical Institute, Department of Chemistry and Biochemistry, University of Texas, Austin, TX 78712-1096.

DOWN RIGHT BEAUTIFUL PEOPLE SYMPOSIUM. The Valley Arc had to cancel the first one due to the flood, but they managed to hold it last November and 80 people attended. It will probably be done again this November and if so, the Johnsons hope to attend.

LEARNING DISABILITIES SOURCEBOOK. Children with learning disabilities constitute between seven and ten percent of the school-aged population, according to the National Institute of Child Health and Human Development. They also represent more than half of the children who receive special education services in the United States. Yet, learning disabilities remain poorly understood.
     Learning Disabilities Sourcebook (600 pp./$78, Vol. 33 in the Health Reference Series) provides parents and other concerned individuals with authoritative information to help them understand learning disabilities, current diagnostic methods, and approaches to treatment. To order or for information contact OMNIGRAPHICS, Inc., Penobscot Building, Detroit, MI 48226.

Emmanuel Bishop

VICTOR BISHOP. Henceforth, most or all of the middle pages of this publication will be submitted by our Associate Editor. His prime motivator Emmanuel is now facing you. Victor will be covering matter relating to babies and toddlers with DS. Emmanuel is their firstborn and was 10 months old when this picture was taken. His Hirschsprung disease was correctly shortly after birth. He was born 12-21-96 and is being brought up bilingual. As a matter of fact, in our next issue, you will enjoy his synthesis of reports on the World Conference on DS held recently in Spain. He has posted the nine latest issues of our publication on his web site ( and intends to do so for all subsequent issues. You will enjoy our new correspondent who can be reached at He recently was elected to the board of directors of the Greater St. Louis DS Association and continues to promote the Riverbend DS Parent Support Group.

JOAN MEEKS. We received from our benefactor, Joan Meeks, several newspaper articles. Some featured the Utah Special Olympics, where Chris Chrisman, a bowler with Down syndrome and a heart condition had support from his community who arranged for his 24-hour need for oxygen.
     Amy Leo, a seven-year-old cheerleader that was sidelined during basketball games, to comply with High School regulations, because of her age. "Special needs kids show off thier moves" gave an account of the production of "Trouble in Prancelot". Quote: "We see many changes and absolute growth [...] The children come out of their shells and they love the applause." Finally, the story of Darelen Espinosa, who went to the aid of 90-year-old Bill Robertstein, who broke his hip.

LOVING EMILY. This is the title which appeared in WOMAN'S DAY, March 10, 1998, p. 198, written by Mary Wilt, e-mail:, about her 7-year-old daughter. Quotes: "All of us -all of us- have some genetic anomalies, most so minute as to be of no consequence", and "What a sad world it would be if all the little ones with Down syndrome were not allowed life. A world with no Emilys. A much sadder world, indeed".

THE MIRACLE OF SANDRA'S HUG. Written by Mike Cottrill, as told to Heather Black, in WOMAN'S WORLD, April 14, 1998. The story of a father's acceptance of her daughter Sandra, born with Down syndrome, who was so devastated that he refused to love her daughter. He would never pick up Sandra to hold her and love her; only to care for her. His anger soured in bitterness and life lost its joy. It took three years until Sandra's hug and unconditional love wiped her father's sadness away, forever.

DOWN SYNDROME INTERNET RESOURCES. Most web sites have a ubiquitous link page, fortunately one does not need to search and compile a list of Down syndrome links, Dr. Len Leshin has the most complete and up-to-date listing of Down syndrome Internet resources available at Other excellent excellent resources are THE '96 HEALTHCARE AND GUIDELINES FOR INDIVIDUALS WITH DOWN SYNDROME and Greg Richard's growth, height and head circumference charts for Down syndrome at

SCHOOLING CHILDREN WITH DOWN SYNDROME. TOWARD AN UNDERSTANDING OF POSSIBILITY. Kliewer. C. 1998, E-mail: Douglas Biklen, in the foreword, states that this book "... links how we think about education in general with how we must think about education for students with Down syndrome and other disabilities." Over the course of two years, Professor Kliewer followed 10 children with Down syndrome, aged 3 to 10, across 13 classrooms; the purpose of the book is to describe the meanings attached to Down syndrome in schools and all the cultural and historical baggage this conveys. For example, does Emmanuel's therapists know what my son knows? Not really, because the label of Down syndrome presumes incompetence. This is what Kliewer's book is about. A few months ago my son would get frustrated releasing blocks into a canister because he could not do it: the blocks got "stuck" to his hand, yet I would catch my son joyfully placing and retrieving a koosh ball from his basket of toys. The therapist was not impressed because koosh balls were meant for painting. I will be reviewing each chapter in future articles, but let me start with a parent's comment on inclusion: "She'll sit in algebra class even if she doesn't learn". Now I know why this disturbed me. The acceptance that the child would be, as Kliewer describes, an alien or a squatter in the classroom. In Spanish we have the word, marginado, which means on the fringe of society, segregated, and this is what Kliewer observed in the classrooms.

HAND FUNCTION OF CHILDREN WITH DOWN'S SYNDROME. Kitty Burns, one of our correspondents, sent us this article which was published in Vol. 21, No. 1, March 1998 in the SPECIAL INTEREST SECTION QUARTERLY OF DEVELOPMENTAL DISABILITIES, which is a summary of the information presented last year at the St. Louis, MO American Occupational Therapy Association conference and discusses activities for developing grasp, release and manipulation; and assessments to evaluate children with Down syndrome so clinicians can discern between what must be treated and what must be accommodated. Quoting Edwards & Lafreniere (1995) "there a qualitative differences in the development of children with DS, not merely a developmental delay", some of these differences are: fewer bones (23 versus 27), short phalanges, lower set thumb, compromised transverse and longitudinal arches, and poorly formed dermatoglyphic patterns, which are the whirls, loops, and arches that are related to tactile sensitivity and hand function (Bowers & Tirbuzi, 1992). Christopher Kliewer quotes Maria Montessori, in his book reviewed above, Schooling Children with Down Syndrome, p. 65: "In my experience, if -for special reasons- a child has been unable to use his hands, his character remains at a low stage in its formation: he is incapable of obedience, has no initiative, and seems lazy and sad". While Kliewer is critical of Montessori's "inferred characteristics", he notes that each has commonly been ascribed by professionals to people with Down syndrome. Elizabeth Zausmer also quotes Montesorri to introduce Chapter 13, Fine Skills and Play. The Road to Cognitive Learning in A PARENT'S GUIDE TO DOWN SYNDROME. TOWARD A BRIGHTER FUTURE, Edited by S. M. Pueschel, "The hands are the instruments of man's intelligence." Professor Kliewer, after citing studies on the motor difficulties facing subjects with Down syndrome, states that academic participation demands dexterity and the movement issues affect the perception of one's intellect. Quoting Jason Kingsley, (COUNT US IN: GROWING UP WITH DOWN SYNDROME: 1994) "Sometimes, I put the pencil down and with my two fists try to punch someone in my imagination because the pressure when I'm doing work, It's hard for me. Looks like war. In my imagination. But I end up doing it. Slowly". When the subjects with Down syndrome were asked to quicken their tapping pace, the effort resulted in increased pressure, which slows down the tapping. Frith, U. & Frith, C.D. (1974) Specific Motor Disabilities in Down Syndrome. Journal of Child Psychology and Psychiatry, 15, 283-301.
     Reprints: Sandra Edwards, MA, OTR, FAOTA, Western Michigan University, OT Department, 1201 Oliver Street, Kalamazoo, MI 49008-5051. E-Mail:

Gordon, M.A. LET'S TALK ABOUT DOWN SYNDROME (Let's Talk Library). Rosen Publishing Group.
Hu, Raymond. THE EYES OF RAYMOND HU. Brookline Books.
Jansen, L. MY SISTER IS SPECIAL. Standard Publications.
Vredevelt, P. W. (1998). ANGEL BEHIND THE ROCKER. Multnomah.
Victor Bishop will update this article so please send information directly to him on new and forthcoming books and articles on DS.

HEARING LOSS IN CHILDREN WITH DOWN SYNDROME. This review, by Dr. Nancy Roizen, was published in the Down Syndrome Quarterly, December 1997. Shortly after our son Emmanuel was born (12/21/96) the inconclusive Auditory Brainstem Response (ABR) test made us aware that we had to initiate an aggressive management of hearing problems as expounded in this review, since Emmanuel is at risk for persistent ear infections and hearing impairments. Roizen suggests audiologic assessments and determination of audiologic impairment (conductive, sensorineural, or combined), monitoring of otitis media, removal of impacted cerumen, frequent otolaryngologist visits (every 3 months may be needed), remedial speech therapy and possibility for hearing aids. Emmanuel has yet to have an ear infection and his tympanogram and otoacoustic emmision (OAE) tests are normal. At our first Down Syndrome Clinic appointment, the assistant otolaryngologist mentioned the option of institutionalizing, as the ENT Director was off on Clinic days, which made it imperative that we search elsewhere for our child's audiological needs. This we found, at a very low cost, at the local university.

DIAGNOSIS OF AUTISM IN CHILDREN WITH DOWN SYNDROME. Our correspondent, Glenn Vatter, E-mail:, who has started a parent support group for this dual diagnosis, sent us this abstract of the article he is submitting to prestigious journals. He is also the author of a book, an important case study, BILLY. For more information, or the full text version of this article Glenn Vatter may be contacted at 3124 Henneberry Road, Jamesville, NY 13078-9640. (315) 677-3844.
As many as ten percent of persons with Down syndrome may also suffer from autism. Exact data is difficult to obtain. Many cases go undiagnosed, or are diagnosed at a later age. Many diagnosticians are unawares that the two conditions may exist or are reluctant to apply the second diagnosis. Autism diagnosis is much more complicated than Down syndrome; there is no blood test, genetic marker, facial features, or other characteristics that apply to all autistic persons. The diagnosis is subjective, depending on meeting observations of certain behaviors. Diagnosis and treatment of autism is much more critical than for Down syndrome. Without early detection and intervention the life of a person with autism may be much more limited than that of a person with Down syndrome and often results in autistic children living in a residential school rather than at home because of inability of the parents and the school system to cope with the child's behaviors. The key areas to look for in a child suspected of autism is in the social and emotional development. A discussion of normal milestones for children with Down syndrome is given for these areas. A discussion of the autism diagnostic process is given, with comparisons as to which symptoms are more unusual for children with Down syndrome and may be indicative of autism. A checklist of typical autism symptoms is also given. There are a number of issues in diagnosing autism in children with Down syndrome that are not found in diagnosing autism in children that do not have Down syndrome. Many diagnosticians are unawares the two conditions can co-exist. Many feel that the autism symptoms stem from the mental retardation and global brain damage found in persons with Down syndrome, and will not issue a diagnosis of autism. It is essential, however, that if autism is present, that it be so recognized. The life stakes for autism are generally much higher than for Down syndrome. The education and intervention strategies for autism are much more involved than for Down syndrome. Early intervention is vital. The parents need to turn to the autism community for help and information. In the article, several case studies are reviewed and references are provided.

UNDERSTANDING DISABILITY, Chapter 2, Toddler, Six Months to Two Years. The Down Syndrome section of this book authored by Peggy Quinn and mentioned on page 4 of our last issue, duly notes that low muscle tone, visual and hearing problems affect physical development and communication progress. More interesting was the Cerebral Palsy section warning, "Parents must develop the ability to determine what is best for their child or they will be so overwhelmed by all the good suggestions that they will not be able to support and assist him in appropriate ways." Those parents who refused to institutionalize their children with Down syndrome; followed by parents who fought to include their children in the classroom, coupled with medical care, has raised the expectations for us. Emmanuel is involved in therapy and now expects and relishes to be stimulated. My son overwhelms us, since he demands us to read his favorite books, sing his favorite songs, and play his favorite games all day long.
     Between wish-fulfilling fantasy and information seeking (Rodrigue, et al. (1992)), in Psychosocial Adaptation of Fathers of Children with Autism, Down Syndrome, and Normal Development,, I have opted for the later as a coping strategy, which also has be to held in check. Eunice McClurg, in YOUR DOWN'S SYNDROME CHILD, p. 48-9, lists several suggestions to avoid falling into the superparent syndrome trap, by prioritizing tasks to be accomplished and enlisting the help of others.

AD & DS. We have reported on this Association for decades as my mother had AD. One of the intriguing but oblique connections is the following quote from W. A. Markesbery, MD who is the director of the Alzheimer's Disease Research Center and a professor at the University of Kentucky, College of Medicine. It is from a special advertising section on health and fitness in the June 15, NEWSWEEK. He says on page 9 about AD: "Other risk factors include low educational attainment, a family history of Down Syndrome and low linguistic ability in early life." We will send him this draft and ask for an explanation of the reference to DS.

THE NAME GAME. This is a two-page article in the 4-25-98 SCIENCE NEWS and it clearly indicates that toddlers are forced to make momentous decisions relating to the parameters of the new words they are exposed to. They face a virtual "naming explosion." Word learning gets into gear at about age two.

ASSESSMENTS. Robert has had plenty. One of the first was the karyotype which showed a triplication of Chromosome 21. He has been at the Local Adjustment Training Center since 1992, and has several assessments prior to his annual Independent Service Plan including a self assessment with a professional interviewer. There also is a general status report which contains the pertinent facts relating to Robert. He had dozens of assessments in his early years even though we concluded more than a decade ago that I.Q's were not only not significant, but may have become detrimental to his self esteem. In any case, we strongly recommend that infants that might be developmentally delayed or were born with birth defects, be assessed for any possible advantage in occupational, physical, speech or other therapy.

OCCUPATIONAL THERAPY. I never fully understood the relationship to physical therapy, but since April was "Occupational Therapy Month" the Aberdeen American News ran an article on a little boy who was given such treatment at the local hospital. He suffered from sensory integration dysfunction. When Robert was an infant he also abruptly wasn't able to take food and had "projectile vomiting" when we attempted to provide nourishment. I recall my outrage when the surgeon told me it was my choice to correct what he called Pyloric Stenosis or not. At that time in the U.S. apparently many infants with DS were denied life if they had this problem, but in England I understood they didn't do the surgery (just allowing a muscle to open more widely as I understood), but corrected the problem otherwise. Anyhow, a little later Robert became a patient at the Georgetown University Child Development Project run by Dr. Bob Clayton (one of our current subscribers). Dr. Clayton communicated easily and told me a little about the limbric system and vestibular stimulation, but Robert never had such help. We did have a "Visiting Nurse" program in the DC suburb of Friendly, MD and Robert responded well. We strongly recommend that any infant likely to be developmentally disabled be considered for occupational, physical, speech or other therapy.

DEVELOPMENTAL SCREENING. One of our subscribers (Hub Area Early Intervention), does this free for infants from birth through toddlers who have reached age 3. Lately, I have recognized the value of imitating such screening for infants born with a recognizable malady such as DS. Locally, I understand they do free screenings using the Denver V Questionnaire which takes about 45 minutes. Parents can complete a Denver Parent Questionnaire if they wish. If any areas of concern are identified they provide ideas and activities. Other than the above the babies born prematurely or of low birth weight, those "floppy" or with stuff muscle tone, and those with sensory impairments or frequent diseases probably should be referred promptly. Our hospital (St. Luke's Midland) has a Pediatric Developmental Team which includes occupational and physical therapists, audiologists, speech-language pathologists, etc., that a patient can be referred to by a physician who prescribes developmental therapy when appropriate. The assessment is then the first order of business; screening results and further recommendations are discussed with the care providers. Occupational therapy is committed to help overcome developmental as well as other disabilities. We strongly urge care givers to seek out similar facilities in their geographical area and not wait until disabilities are obvious.

ANN LANDERS. She and her sister have syndicated columns that I like and have read for years. Recently, Ann had a column which included a letter from a lady who has raised a son with Down syndrome for more than two decades by herself, but her family says put him in a home so she can have her own life and she counters that she does and Jimmy is part of it. She would like a little respite and she doesn't appreciate questions about his problems since Jimmy knows when he is talked about - not to. I congratulate her on writing the letter and caring for Jimmy and I'm particularly pleased that Ann reprints such letters which help educate society. I recommend to readers that if they have an issue or cause, they consider asking Ann to reprint a letter from them on the subject: (Ann Landers, Box 11452, Chicago, IL 60611-0562).

BE A VOLUNTEER, FRIEND, OR MENTOR! The first is easiest since you can volunteer to do specific things for disabled people that take little time and involves little or no inconvenience. Becoming a mentor is more demanding but allows you to see a person develop. First, list your interests and achievements and then ask a local ATC, Literacy Council, School, Hospital, etc., if they might suggest one of their clients to mentor on a short-term basis to try out the relationship. Being a friend may be quick to initiate but usually friendship is more durable than the other two options. It doesn't have to take extra-human effort or cost money; in our own case we provided the name and phone number of our neighbor (this was required many times in the last 20 years, but to our knowledge we were the only ones that ever contacted them). They became more than just a neighbor and have become long time casual friends.

DEVELOPMENTAL DISABLED PEOPLE CONFER. When I was a recent college graduate this didn't happen, but it has been a growing phenomenon these past couple of decades. Robert has attended two PEOPLE FIRST CONFERENCES in SD and he noted a decade ago when we attended the National ARC conference in San Antonio that several PEOPLE FIRST members were present. I attended the same conference with him last year in Pierre and although I wasn't part of the People First group, I knew many of them at the start of the three day meeting and many more when it concluded. Probably all were exemplary people. Early in May '98 seven counties in Minnesota had a somewhat similar one-day workshop in Crookston. That workshop was sponsored by the Developmental Achievement Centers (probably almost if not identical to what are called Adjustment Training Centers in this part of the country). Personally, I favor People First organizations with Arc backing as it allows clients of DAC 's (or ATC's) to get away from the grasp of their caregivers (sometimes the only caregivers and almost always the primary caregiver). I also trust the Arc and I believe Arc professionals have made great progress in advancing Society's concern for mentally retarded and developmentally disabled people. Robert started the "Exceptional Adults Fellowship Club" before SD had a People First organization and the young lady who ran it did much the same work for the local ATC as the present local People First director does (Deb Silvernagel aided by Dawn Manning). Perhaps tying the Arc and People First together in such a loose confederation is the best way to serve this group.

LANGUAGE ORIGINS MAY RESIDE IN SKULL CANALS - From SCIENCE NEWS. VOL. 153, May 2, 1998. Anatomist Richard F. Kay of Duke University Medical Center in Durham, N.C., and his colleagues examined a bony tube located at the bottom of the skull, called the hypoglossal canal, through which the hypoglossal nerve passes. This nerve originates in the brain stem and fans out, sending movement commands to all but one of the tongue's muscles.
     "This is exciting work," comments anthropologist Erik Trinkaus of Washington University in Saint Louis. "It suggests that fine neurological control over the vocal tract necessary for spoken language emerged during a time of major revolutions in hominid adaptive patterns," around 500,000 to 100,000 years ago.

INFANT MORTALITY. The thought came up that this rate might indicate which countries took casually the death of disabled infants but the U.S. had a rate that exceeded the number of children with DS per 1,000 live births in both '87 and '88 and was the worst in the world. Japan has had the lowest rate in the world since 1980. However, the US rate improved in '89 and Israel and New Zealand had higher rates.


RHEUMATOLOGY. Vol. 2, edited by Keppel and Deppe, Mosby '98.

SD DISABLED CHILDREN. As of 12-1-96 there were 15,051 disabled children and for 1505 MR was the problem (50 less than in 1995), 524 were severely emotionally disturbed, 4202 had speech/language impairments and 6462 were specific learning disabled, 35,025 children (up to age 18) were on Medicaid and 15,048 received food stamps.

DS INCIDENCE. It has been increasing since 1977 from about 8 per 1,000 births to 9.3 in 1990; (from STATISTICAL RECORD OF CHILDREN '94 Gail Research): Less than 1% of children in Special Education had growth/development delays; almost 70% were classified with learning disabilities.      In '88 25% of delays in growth/development were noted at birth with almost as many noted in the 22nd year whereas for those disabled children with learning disabilities only 4% were noted at birth with 2% in the following year. Only 3% of those with behavioral/emotional problems were identified at birth with 2% more noted before one year. The "big" identification years were from one to two for growth/developmental delays; 6 to 8 for learning disabilities and 3 to 5 for emotional/behavioral problems.

NADS NEWS. This is the oldest "National" Down's support group on the continent, but their Executive has been in her job only 19 years. Membership is $15 (P. O. Box 4542, Oak Brook, IL 560522-4542). The May '98 issue, as always, is filled with great pictures and articles. They raised $66,000 this year for their Bowl-A-Thon, but for the quarter century I've been a member, their fund raising has seemed innocuous. Other items in that issue relate to stress management, challenging behavior, experiences of the mentor of a young adult with DS by the mother of a 5 year old with DS, a ten family retreat weekend, book reviews, conference information, DS behavior research, a Deerfield, IL center for people with developmental disabilities, notice of forthcoming Frankfurt, IL "Outdoor Creation" which lst year raised $24,000 for NADS, and the DS Association of Greater Cincinnati packet on alternative therapies available for $8.

GOODWILL INDUSTRIES. The May '98 JOB TRAINING AND PLACEMENT REPORT starts with historical and information articles (JTPR, Box 322, Waupaca, WI 54981). Goodwill was formed in Boston at the turn of the century; it has 187 autonomous members in the U.S. and Canada. In '96 they helped nearly 33,000 people find competitive employment and they employed nearly twice that. If your community doesn't have a Goodwill facility, call them at 301-530-6500 and find out how to get one.

PARTNERS FOR YOUTH WITH DISABILITIES. JTPR also has this article which concludes with the address of the contact (Regina Snowden, c/o Mass. Office on Disability, 1 Ashburton Pl., Room 1305, Boston, MA 02108). Ask for a replication kit.

LAYNE AND SHAUNA'S LIFE TOGETHER. This was reprinted from the DS Press and they had reprinted it from the Spring '97 NEWS AND VIEWS. We carried their marriage, but this is by Layne Johnson and provides details. Note in the penultimate paragraph he says marriage isn't for everybody but they seem to be able to get the work done and have fun too:
     "Shauna and I are married and we are very happy. We have a dog named Pal who lives with us in an apartment in our parents' basement. We both have brothers and sisters, but we live by ourselves with Pal. We are so happy now, and I have a beautiful wife. We believe in eternal marriage."
     "A long time ago, I helped my Dad on his farm. Sometimes I drove the tractor, just like my brothers. Sometimes we made mistakes. Then we did not make the mistakes again. Five years ago I got my driver's license. I drive my Pontiac to work at J. C. Penney's. I have worked the more than 20 years. I am a good worker, I am a good driver, too."
     "We learned about independent living through the Arc. We plan our own meals. We cook our own food. We like to find new recipes. Sometimes we buy frozen dinners. We like light desserts and low fat food. I weighed 197 pounds when we met. When we decided to date, I did not eat so much with my roommate. I weighed 158 pounds when we got married."
     "Shauna does the laundry on Tuesdays. She irons our clothes when I am at work at Penney's. We help each other keep the house clean all week. Saturday is our cleaning day."
     "I play the organ. Shauna plays the piano by heart. She is learning to read music too. We have music lessons on Friday. On Monday and Wednesday we go to Dixie College for evening classes. We like the computer too."
     "We drive to the bank to deposit my check when I am paid on Friday. Then we drive to the store to do our shopping. We know how to use our checkbook. We are careful with our money because we are building our new home. My Dad helps us with that."
     "Doctors said I would never walk or talk. People said I could never learn. They said I could never read. And some people still say people with a disability cannot be married. Me I think sometimes people are wrong."
     "Marriage is not for everybody. It was right for us. People used to take care of us. Now we take care of each other. Shauna's family is my family. My family is Shauna's family. But now we are our own family. We like it that way. It is a lot of work, but it's worth it. Our families always there when we need help."
     "Our most important message is: Do what is right. If it is important, never give it up. Go for it!"

We don't have a contact point for more news from Layne, but you might contact Lisa Steele, Editor of DS Press, 1821 Summit Road, Suite 102, Cincinnati, OH 45237. She printed an excellent article by teacher Evelyn Johnson on piano lessons. Evelyn had a son with DS who died a decade ago. Robert enjoyed his piano lessons and did great in competition, but had to quit when he took up twekando.

ROBERT'S INCOME TAX. He has been filing and paying for a decade. We went over the papers and figures together and he seemed to understand and be proud that he could and did pay like others using the SF 1040. This year the portion for disabled people and the earned income credit got too difficult and since IRS offered to compute those credits we sent it to them. In their response they said:
     "Based on the information you sent us, we figured your income tax for the above tax year using filing status Code 1 and 01 exemptions. We took your adjusted gross income and figured your tax by using the tax tables and adding the amount of any advance earned income credit you received. Then we subtracted: (1) any tax withheld by your employers, (2) any earned income credit due you, (3) any other credits and (4) any other payments."
     "....If you have any questions you may call or write us -- see the information in the upper right corner."

They also enclosed a pre-printed response by which inquiries could be made; we are using it to send a draft of this article.
     The USA has a comprehensive income tax procedure and is seeking your views on how to improve it. We are not unhappy with it, but believe it should be simpler and have forwarded our views to Senator Tom Daschle. We recommend you do the same or send them to your Congressional Representative. But don't blame IRS employees for the complexity. Like other things wrong in the country, the voters have to take the blame. Thank you IRS for all your help and thanks to taxpayers for providing earned income credit which gave Robert an extra $55.

THE SPECIAL-NEEDS READING LIST, An Annotated Guide to the Best Publications for Parents & Professionals. In one easy to use volume it reviews and recommends the best books, journals, newsletters, organizations, and other information sources on children with disabilities. It covers more than 700 authors and 200 organizations. Listings are divided into two broad sections:
     Part One covers topics related to all disabilities.
     Part Two covers Specific Disabilities. Down Syndrome is one of the 20 distinctive disabilities which were each given an individual chapter.
     The list is an invaluable tool for parents and professionals - teachers, therapists, doctors and nurses - to help them sift through the abundance of disability literature. Teachers can use it to learn about the diagnosis of students in their classroom, parent groups will want it as a reference, and medical professionals can use it to help them serve and understand their patients. Public and school libraries will also want to add this reference to their collections.
     Call 800-843-7323 and ask for Sarah Strickler for more information. The price is only $18.95. Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817.

UDSF ADVOCATE. We think this magazine is the best looking publication on DS and one of the best from the standpoint of content. There are lots of color pictures with personal narratives. Send $20 to UDSF, P. O. Box 12845, Ogden UT 84412-2845 to join and receive the ADVOCATE regularly.

MEDICAL PROBLEM COMMUNICATION. Most people want to become more expert. The first source I recommend is your local library reference section. You probably want to subscribe to the MATCHMAKER (150 Custer Court, Green Bay, WI 54301-1243) if you are concerned with any disability. It also will match parents concerned about rare disorders. Stay Well (800-333-3032), has a free catalog of 800 publications on health and sells flyers/brochures such as Managing Fibromyalgia, which is available for $20 for a pack of 50. I have offered to assist them in developing a brochure on DS, but don't know if that will happen; in any case you may find one or more of their current publications that will interest you.

YOU ARE MY HERO. This song has been on record for millions of parents and other caregivers for disabled people. Some of the caregivers have short time commitments and some like sibs have had a longer span of being a hero that even their parents. School teachers are frequently major heroes for many months and even years. Several cassettes include the song and we seek comments on particularly good or bad ones. The world can always use more uplifting music. Bette Midler sang the song in a movie. Some disabled people have more than one hero, but many have none!

BIOLOGICAL ABSTRACTS. Each bimonthly issue has about 15,000 extracts. Down's syndrome is indexed and there always are extracts, but the service is expensive and probably can be found only in the larger libraries. Our next item was taken from one of the abstracts:
     BEHAVIOUR PHENOTYPE FOR DS. See BRITISH JOURNAL OF PSYCHIATRY 172 (Jan.) 85-89. Through use of the Disability Assessment Schedule 360 adults with DS were found less likely to demonstrate maladaptive behaviour than subjects of an equal age and development quotient but their behaviour phenotype is still unknown.

TAX BREAK FOR EMPLOYERS OF QUALIFIED SSI RECIPIENTS. A law that has been frequently reenacted is due to expire again June 30. It provides a WOTC Credit for 40% of the first $6,000 of first year wages paid to a new hire who fits one of the many categories specified in IRC Sec. 51. The authority continues after July 1, but the full year's credit requires that the employee be hired before June 30. Qualified summer youth employees who begin work before July 1, can receive a WOTC credit of up to 40% on up to $3,000. A prescreening notice completed on or before offering employment with a certification request to the cognizant state agency within 21 days after the employee starts, will qualify. Inform organizations that employ disabled people of these procedures. Details can be obtained by phone from IRS.

PEAK CENTER SEEKS FUNDS. You can obtain background information by calling 800-284-0251 or writing 6055 Lehman Dr. #101, Colorado Springs, CO 80918.

KNIGHTS OF COLUMBUS. We aren't Sectarian or espouse particular religions, but we think most churches are beneficial and have great admiration for those that perform works of charity. The Knights have about one and a half million Catholic men belonging to about 11,000 councils. Their charities total more than $100 million annually including large amounts for developmentally disabled people, pro-life support, student loan/scholarships, etc. In the middle of May the Aberdeen PEOPLE FIRST organization donated their time to assist the Knights in raising money for a young cancer victim. They took in payments for the meals, served the breakfasts, kept the beverage containers full and bussed the tables. The Knights have more than $30 billion of insurance in force. We give special thanks for their efforts to assist developmentally disabled people.

PREFERENCE GIVEN BY SD SUPREME COURT TO APEALS INVOLVING CHILDREN. Chief Justice Robert Miller is quoted as saying allegations of abuse or neglect by parents, adoption, and cancellation of parents' rights to children, etc., get the top scheduling priority.

STATE'S RIGHTS. This is a major Constitutional provision, but the Supreme Court instead of defending the rights, obliquely avoided the true issue in the Roe vs. Wade decision. Now, South Caroline has challenged the court by declaring that the state's laws concerning child abuse and endangerment include a viable fetus as a child. See page 78 of the 6-8-98 NEWSWEEK. It says the Supreme Court declined to review the decision. This writer is opposed to any sanctimonious attempt by despots trying to get their views recognized as the "law of the land." I prefer to see local and state officials make laws that afect me and state supreme courts rule on their propriety without ignoring State's Rights.

DISABILITY MOTIVATED HATE CRIMES. Presidentially endorsed legislation to prevent such crimes has been introduced and illustrations of the types of crimes and discrimination are sought as well as support for the contention that disabled people are less likely to report such crimes or get police investigations.
     Send Email sought information to: NAPAS

FINANCES. A new subscriber, Charles Dorsher, sent us $20. As we have noted, we apply it to our costs on the basis of $1 per issue and if we cease publication before he has received 20 issues he will be refunded the difference between $28 minus the number of issues sent. Our costs are about $110 per issue so we need a lot of renewals at $5 each to keep going. If no number follows your name on our address label or if you haven't sent funds for a few months you may be on credit. We won't refund anything due to administrative expenses if we terminate publication while subscribers have only one more copy coming. We think Victor Bishop will reenergize our publication and we have no doubt that here will be as many findings to report in the coming years as there have been in the past 25 years so we hope you will share costs so we can continue to publish. Funds from Dorsher and the Meeks allow us to assure other current subscribers that they will get the Autumn issue. All amounts are welcomed on the basis of one issue per $1 received.

Northern State UniversityU. S. Postage Paid
School of Education, Box 850Aberdeen, SD 57401
1200 S. Jay StreetPermit No. 77
Aberdeen, SD 57401-7198 

  Revised: December 28, 1998.