People with Special Needs Down Syndrome Report


VOL. 17 #7SSN0731-566XChristmas 1997 

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.

NEW MANUALS ON IDEA. Call 888-782-2272 and 800-695-0285 for details. We have the manual from the last source which was produced by the National Information Center for Children and Youth with Disabilities (NICHCY). It identifies the major changes and a side-by-side comparison of the new and old laws. Be sure and ask for their Publication Catalog too; the new manual isn't in our June copy, but they frequently have such NEWS DIGESTS available free for the first copy and $4 for additional copies. If you have Internet, try and ask for "the Law" or ask your Senator or Congressperson to have a copy S.717 1HR5 sent to you. Perhaps you can find time to write NICHCY, P. O. Box 1492, Washington, DC 20013 and thank them for their continuing efforts to help children who need special education, along with your request for Volume 26 of their NEWS DIGEST. They also have about 25 free different Fact Sheets on the more common disabilities including DS.

PROPOSED SOCIAL SECURITY REVISIONS. The following was received September 2, from Senator Tom Daschle: "Thank you for the refinements to the ideas you have shared with me about establishing pro-rated coverage under Social Security. I appreciate this exchange of ideas, and I admire your ingenuity in crafting plans to help the Social Security system work more effectively."
"You make a good point that pro-rated coverage beginning after working for five years of coverage would apply to many more people than would adopting pro-rated coverage only for those over age 70. Congress is now considering ways to reform Social Security to ensure its long-term stability. As that process unfolds, I will be happy to share your idea with the Administration and with my colleagues in the Senate. Please be assured that I will continue to look for ways to assist older Americans to achieve a secure retirement."
Again, thank you for sharing your thoughts with me. Please keep in touch."

LEGISLATION AFFECTING DISABLED PEOPLE. There is always the potential for change and there always are aspects of legislation being acted on that have at least some impact on the disabled. Almost all of the changes being considered to the Social Security Act have an impact on disabled people as they as well as others who qualify for old age and survivors insurance, disability, SSI, Medicare, etc. Consider the current provisions and proposals such as reducing the minimum age to take reduced old age benefits from 62 to 55 and let your Federal Congressional team (we too) know your views. One of the major pieces of legislation being acted upon is the reauthorization of the Rehabilitation Act. HR 1385, the "Employment Training, and Literacy Enhancement Act of 1977 includes reauthorization of the Rehabilitation Act for three years, although some changes were made. It substitutes an "Individual Plan for Employment" for the "Individual Written Rehabilitation Plan" and offers consumers a wider choice of careers, service and service providers. If the Senate passes a bill, and it differs, a conference committee will resolve the conflicts. The Regulations aren't yet a year old so there likely will not be major changes. We will ask Senators Daschle and Lott for a prognosis. We recommend that you ask your Congressman to have a copy of the final version of HR 1385 sent to you, along with a white paper from the Legislative Research Office on the Rehabilitation Act. You might also note you are interested in all legislation that might affect disabled people and would appreciate communication from your Congressperson on such legislation. If you write Senators Lott or Daschle, you likely will receive a more accurate overview if their staff can handle the correspondence.

SHOULD SCHOOLS AND STUDENTS BE TESTED? Senator Daschle says there should be report cards on schools and children's skill levels. This Congress passed a compromise law that provides voluntary national testing of fourth graders for reading and eighth graders for mathematics, and it has been enacted. What do you think? We will print serious reactions and will start out with some of ours. I'm in full support. Since everybody is special, there will be considerable differences in results, but I suspect the best schools won't be found in the wealthier school districts. There is no reason that all children during their 10th year can't be tested for reading English without regard to disability. Obviously, there will be different bell shaped curves reflecting the results of special education on non-disabled students. As to math, I have contended that improved curriculum and teaching techniques would enhance the economic and defense posture of the nation. The testing might reveal teaching techniques and procedures of greatest impact. Any criticism or exultation based on racial, cultural, economics or geographical factors should be avoided. Robert's oldest sister, Margie Brekken, (an elementary school counselor), says it will identify thousands of additional children not now provided special education who won't meet the norm. This will also be a continuing issue for at least several years.

NATIONAL ASSESSMENT GOVERNING BOARD. This is a bipartisan independent testing panel that may be involved with the proposed 4th grade reading and 8th grade math tests. Riverside Reading may create the reading test and Harcourt Brace the math test. Opinions on national testing are about evenly divided. Congressman Bill Goodling of PA has opposed the program and the $90 million cost. He Chairs the House Education and the Workforce Committee which probably was the controlling influence on the legislation. The relationship of the bipartisan testing panel to the National Assessment Governing Board isn't clear. Vermont perhaps has the only state assessment system worth modeling. I suspect we will be able to provide a prognosis on a likely time-frame for the testing in our next issue.

FEDERAL TAXPAYER RELIEF ACT. There are 25% and 35% credits from the extended work opportunity tax credit; only 120 hours are now required and if more than 400 hours are worked the credit goes up to 40%. Employers hiring long-term family assistance (AFDC) recipients get a credit of 35% for the first $10,000 in wages the first year and 50% in the second beginning January 1, and running to May 1, 1999. Also, tax exclusion on employer provided tuition for undergraduate courses that begin before 6-1-2000 is extended. Other tax breaks relate to employee parking and meals. Those who have an opportunity to join the work force, but who have declined should reconsider. The long-term social, health, and retirement benefits now clearly make it worthwhile to show the world that disabled people can and will work.

FAIR LABOR STANDARDS ACT. It does much more than establish minimum wages; you want a concise guide to what it does. Ask a member of your Federal Congressional delegation to have WH 1282 sent you from the Department of Labor or order one through GPO. As of September 1, it now generally requires a minimum wage of $5.15 an hour but several groups such as vocational student learners and individuals whose earnings or production capacity are impaired by a physical or mental disability may be paid if covered by a certificate issued by Wage-Hour Offices (listed under U.S. Government in most telephone directories). The original Act set the minimum wage at $.25 an hour.
LIFE INSURANCE. We have helped Robert buy a burial plot and all the services and supplies that go along with death, but haven't been too concerned with life insurance. Now, assured that it too won't count against his SSI "resources" we have gone over two of the better offers with him that may interest you. The Arc has entered into an agreement with the Wohlers Insurance Company to lend its name on insurance indemnities by Continental Assurance Company for persons with MR under age 60. You can call 800-503-9230 to have a packet sent to you providing details. Coverage is provided to age 80 for renewals with no health questions or a physical exam for either $5,000 or $10,000 of group term life insurance with semi-annual premiums. The other plan we think you should consider is sold by Phillips and in Robert's case was offered by Protective Life of Alabama. Call 800-223-9610 and although any of the agents could get the necessary information to you, we dealt with Robert Clark. Protective has an A+ Best's rating. In the illustrated policy sent Robert, the premium for $100,000 coverage of $159 remains guaranteed for 20 years, but after that the maximum guaranteed premium could increase every 5 years until age 85 and then remain level to age 100; there is no cash value until age 81 at the earliest. Please inform us of seemingly "better" life insurance for people who have or likely will be seeking SSI in the future. Send this article to the proper SSI case manager now and seek reactions. If the maximum resource provisions might be a factor, work closely with the SSI case manager. Robert applied to both companies mentioned above, and has been issued a $5,000 policy from Continental for $30.30 twice a year with the option of taking additional coverage in increments of $3,000 at $26.35 semi-annually for each increment. Mark Melhoff, the local Mutual Omaha Agent, is assisting us in trying to identify more companies that accept term life insurance applications from disabled people so this article will be continued in our next issue.

EMILY PERL KINGSLEY. Emily has favored us with comments almost as soon as Jason was born so our readers have been able to share our joy when learning of his accomplishments. She included an article on him from the 8-24-97 NEW YORK TIMES, which we will happily send subscribers who provide a SASE. She also provided her review of RADIANCE DESCENDING which she abhors. She says "Rather than improve attitudes and understand, this book can set us all back a generation of two." We will include her review, too, in your SASE if you ask. She also says Jason is incredibly happy in his new apartment.
For even longer than Emily, since Robert is a couple years older than Jason, I have been disgusted with alleged "caregivers" of people with DS who not only don't seem to provide care, but take apparent masochistic pleasure in putting them down and denying them a chance to experience life. I was particularly revolted and incensed when meeting non-speaking adults with DS. So, thanks Emily for the effort in trying to stop this novel from restoring the mistaken assumptions that lasted a full century.

DS STIMULATES THEORY ON AD. The 9-20-97 SCIENCE NEWS on pages 182-3 reports that Dr. H. Potter of Harvard suggests that much AD results from an abnormal accumulation of chromosome 21 in cells. He and his coworkers reported in the 9-5-97 CELL that structures involved in the dispersal of chromosomes in dividing cells lead to the accumulation. The proteins presenilin -1 and 2 which causes AD to strike early if two mutant copies of either are inherited. The team contends that presenilins may assist in cell division by releasing the chromosomes. The article also cites Peter Davies of Albert Einstein College of Medicine as stating the mutations may induce cell death by stimulating neurons (brain cells that normally don't divide) to divide. SCIENCE NEWS is sending us a free several week trial subscription (1719 North First St., N.W., Washington, DC 20036). It is an excellent publication.
In NEURON (about October 24), David Borchelt of John Hopkins is quoted as contending that plaque deposition is an early and critical event. That Journal says a flawed gene appears to act as a throttle to the plaque. Borchelt and his colleagues inserted the two genes, APP and Presenilin, one at a time into mice. The mice that got only APP developed plaques late in their life span, but the mice that got both genes developed the plaques at a much younger age. APO-E4 has also previously been shown to speed up plaque deposition.

DS & COELIAC DISEASE. See GUT 1997 Apr; 40(4): 235-7. The authors say there is a strong association. The basis for celiac disease (as it is best known in the US) is an intolerance of gluten. The primary significance, in my opinion, is that if the authors are correct it should facilitate identification of the abnormal immune response (H LA - B8 Antigen may be the primary determinant of the disease). Of course, it is possible that an enzyme produces an inability to digest gluten. According to the PROFESSIONAL GUIDE TO DISEASES there are numerous signs and symptoms but histologic changes seen on small bowel biopsy specimens confirm the diagnosis.

IGNORANCE ISN'T BLISS! I explained to Robert and my wife over cake when he got home from the ATC how I was writing this article, but I hadn't found a name for what I consider one of the major detriments to solving problems. After I provided the background and asked him if caregivers for disabled people should attempt to garner information that might be helpful for the disabled person and might be part of the solution for aspects of the disabling condition, he unhesitantly said they should be open to information. I have shied away from the word ignorance the past 25 years because it is stigmatic, yet it seems as appropriate as any other word I can think of for the force that prevents people from seeking knowledge. Anyhow, the precipitating situation was my observance of a young lady who had some of the bodily appearances of a person with DS outside a store. A boy came out and the girl followed him to a car. I had decided that it would be difficult to assist without offending the mother, but I would try. A lady, probably her mother, approached the car and I asked them if the young lady had a medical problem and found out she was 13, had DS, and lived in a small town nearby. They weren't interested in any of the DS or other support organizations and didn't subscribe to any periodicals that could provide helpful information. That is the situation I have found prevalent since Robert was born. There seems to be a force (somewhat like inertia in physics and as strong) that many caregivers seem dedicated to "going it alone," and must be resistant to information although I haven't found open opposition or hostility. Those who are active in support groups at all levels must wonder from time to time how much faster a cure or other rewarding information could be ascertained if only more of those confronted with disability would join the effort to uncover the relevant facts. A quarter century ago many people vividly remembered the fact that in Germany disabled people and others not capable of making significant contributions to that society were concentrated into restricted camps and methodically killed, although slogan makers there who probably hated to admit failure, called it "the final solution." People who were aware probably didn't want particulars about their loved one to be recorded in case politicians of similar mentality should be in control positions.
In any case we seek suggestions as to how more people who seemingly have some motivation can be fully motivated so that they actually assist in the revelation of pertinent facts instead of becoming a clear hinderance or sitting silently on the sidelines, almost like inanimate material, instead of a life-form.

ANALYSIS RELATING TO DS. Those readers who comfortably can peruse biochemical treatises please obtain a copy of Harper and Lansbury's paper in the ANNUAL REVIEW OF BIOCHEMISTRY (V66: 385-407). I'm not competent to understand and explain comments such as those that follow: P.386 "All forms of early-onset AD affect the expression and/or processing of amyloid precursor protein (APP). Trisomy of Chromosome 21, which encodes APP, is characteristic of Down's Syndrome; these individuals invariable develop early-onset AD (4)." On Page 402, "This scenario may explain the early age of AD onset in Down's syndrome patients who over express AB." The authors' addresses follow their names in the article. If you have related knowledge you are willing to share, don't hesitate to ask us to coordinate communication, etc.

DS & AD. In the new book called ALZHEIMER'S DISEASE (CRC Press), a Section on p. 44 is titled as above. It largely extracts from LANCET (344-353, 1994) indicating AD, like dementia among mothers younger than 35 when their child with DS was born was 5 times that of mothers of children who had other types of MR, whereas those over 35 were comparable. Risk of dementia was not increased for the father and indicated this may imply a genetic susceptibility to DS and AD. This same book on p.19 in an article by M.D. Robert Katzman from the University of California says B-Amyloid plaques occur only in AD and DS and after other revelations concluded that "dementia in the elderly, whether measured functionally or cognitively, was unequivocally related to the number of plaques in the cerebral cortex."

RECOGNITION AND INITIAL ASSESSMENT OF ALZHEIMER'S DISEASE AND RELATED DEMENTIA. The HHS Agency for Health Care Policy and Research publication No. 97-0702 is so titled. You can call 800-358-9295 to get cost and other particulars. It first mentions DS on Page 1. The following extracts are taken from Page 32: "Most persons with Down syndrome develop the characteristic neuropathological brain lesions of Alzheimer's disease (i.e. neuritic plaques, granulovacuolar changes, cerebral vascular amyloidosis, Hirano boides, and neurofibrillary tangles) by the age of 40 yeras (Wisneiwski, Wisniewski, and Wen, 1985), although many do not demonstrate clinical features of dementia. According to Mortimor and Hutton (1985), almost all autopsies of persons with Down syndrome who hve survived to at least 40 yers of age reveal brain lesions typical of Alzheimer's disease. A recent study of apoE genotypes in persons with Down syndrome and in their first-degree relatives suggests that having the apoE 2 or 3 genotype may protect against what appeared to be an inevitable development of Alzheimer's disease, rather than the apoE 4 genotype being a causative factor (Hyman, West, Rebeck, et al., 1995; Royston, Mann, Pickering-Brown, et al. 1994). If this observation is confirmed, it could offer clues to the type of compound, analogous to apoE 2 or 3 gene products that might prevent or delay the onset of Alzheimer's disease in susceptible persons."

WORLD KILLERS AND WHAT YOU CAN DO. LANCET says heart disease and stroke will likely be #1 and #2, but chronic obstructive pulmonary disease is expected to soon be #3 with lung cancer moving from th e 10th to the 4th spot. All may be partly prevented by eating healthy, exercising more and not smoking!

ACHIEVEMENTS. We always seek information on them as we all want progress. Robert's oldest brother, Sam, has made Robert and the entire extended family proud of his achievements in an international teacher exchange. He just returned from the Caucuses after two weeks participation, and you can be sure none of the people he came in contact with will be offended by him. This came about partially due to his selection as North Dakota Teacher of the Year for 1997. Sam also received a Milken Family Foundation Scholar Award that carries a $25,000 cash award which will be presented to him in June in Los Angeles, California. Another family member, Matty Brekken, is on the first women's hockey team of the University of Minnesota. She will be playing against Harvard, British Columbia, Princeton, St. Laurence, Brown, Yale, Northeaster, Manitoba, Wisconsin, Augsburg, Gusatvus Adolphus, and other good schools and teams. USA TODAY will run a special article on the team in December or January. She played on otherwise all boy teams in Devils Lake and did her part. Robert has two other nieces and three nephews, and we expect great things, but different, from them, too, in the years ahead. Tell us about achievements you are proud of and let us print the facts for others; if the "doer" is disabled, please give us some detail.

RESEARCH POTENTIAL/EMBRYONIC STEM CELLS. John Gearhart of Johns Hopkins in the July 19, SCIENCE NEWS is the source. Other scientists have used such cells for almost a decade to create genetically altered mice called chimeras with two distinct genetic types. Mice made that way mimic human diseases and reveal what proteins guide embryogenesis. To study DS, Gearhart plans to use the cells as a source of chromosomes unsullied by the changes that normally occur as an organism develops. J. Travis wrote the article.

CFS, FIBROMYALGIA, MYALIC ENCEPHALOMYELITIS, ETC., HELP. We first captioned this series "Mystery Diseases," but are now concentrating on symptoms such as disturbed sleep, altered biorhythms, fatigue, immune dysfunction, etc. We have previously identified THE MESSENGER (400-246 Queen Street, Ottawa, Ontario KIP 5E4, Canada) and its editor, John Warren, as one of the best information sources. Although the publisher, M E Canada has a $40 membership fee, you can send John any significant amount and ask that he send you as many samples of that monthly as possible for that amount. In the September issue we learned of Dr. Suhadolnik's international research team finding of a defective enzyme (R Nase-L) that may be a marker. The enzyme abnormally showed up in all of the patients tested, but appeared in only 10% of healthy people. Also, an article by P.M. Salvato, M.D. revealed that CDC has added CFS to their priority #1, new and emerging infectious diseases; she also quotes O.S. Morden saying: "There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow." Another page in the September issue is devoted to exercise with four specific examples provided. Another is devoted to attempting to disguise the symptoms related to these conditions and thus delaying the revelation of facts, that if revealed, could lead to treatment and help. Sleep disorders common to CFS and Fibromyalgia are also discussed; the Toronto Hospital is studying the interrelationship of sleep, immune, and hormonal functions of those conditions (study by H. Moldofsky, M.D.). One of the promising efforts of self-help towards wellness and better communication is formation of a Mid-NA Continent Fibromyalgia Support Group in Devils Lake, ND 58301 (write Mary Johnson at RR5, Box 37, Devils Lake, ND 58301). Email :, or call 701-662-9846.
There follows reviews of two new books on this subject:
The two books are almost 200 pages each and published by the Haworth Medical Press, 10 Alice Street, Binghamton, NY 13904-1580. FIBROMYALGIA, CHRONIC FATIGUE, SYNDROME, AND REPETITIVE STRAIN INJURY are the proceedings of the 7th International Symposium on these subjects of the Physical Medicine Research Foundation; the University of British Columbia was a co-sponsor with Dr. Andrew Chalmers, Associate Professor of Medicine and Rheumatology of that University the conference planner (3250 910 W 20th Ave., Vancouver, BC V5Z 4E3 Canada). The first article was by Frederick Wolfe, M.D. (Arthritis Resource Center, 1035 N. Emporia STE 230, Wichita, KS 67214). He says for 2 decades Fibromyalgia has been recognized but that it is only the tip of the pain symptom (95th percentile pain threshold) and is actually a continuum. He quotes a referral to CFS as being "a morbid excess of fatigue rather than a discrete entity, just as high blood pressure and alcohol consumption are morbid ends of normal spectrums." He says Fibromyalgia rarely ends in remission. The next article is "The Chronic Fatigue Syndrome: An Overview of Important Issues, " by Irving Salit, M.D., Head of the Infectious Diseases and Director of the Immunodeficiency Clinic, The Toronto Hospital, 200 Elizabeth Street, Eaton North 6-216, Toronto, Ontario, Canada MSG 2C4. he says about 75% of CFS patients describe a flu-like illness at the onset. He says CFS overlaps to a great extent with Fibromyalgia and major depression. Since there is no diagnostic test for CFS, a definitive diagnosis is not possible. There are more than twenty other superior articles so you will want to either buy the book or get it on loan from I.L.L. or a support group. There were two index references to Support Groups. A man from England points out that some problems are exacerbated by reading leaflets so I want to point out that I'm not writing as a professional, so please don't attempt to analyze your own symptoms or condition, but engage a personal physician with whom you can discuss major problems.
THE FIBROMYALGIA SYNDROME: Current Research and Future Directions in Epidemiology, Pathogenesis and Treatment. See above for publisher and general remarks. This book largely relates to a workshop sponsored by our NIH National Institute of Arthritis and Musculoskeletal and Skin Diseases. However, before that, the man who wrote the forward, I. J. Russell, made a presentation to the House Appropriations Subcommittee on Labor, Health and Human Services on Fibromyalgia. Dr. L. E. Shulman wrote the Introduction along with Dr. S.R. Pillemer, who heads up the Office of Prevention, Epidemiology and Clinical Application under Dr. Shulman, who is the Director of the sponsoring institute. Dr. Pillemer guided the Workshop and Edited this volume. In the Preface, Dr. Pillemer says Fibromyalgia is a form of non-articular rheumatism. He credits Smythe and Moldofsky for making pivotal studies. There are almost 30 articles and all seem superior so we can only suggest you ask Haworth Press for a catalog and try to get them to send you a copy to peruse before buying, or if you are significantly involved, call Christine Matthews at 607-722-5857 and ask to buy a copy. The index doesn't mention shingles, but it seems to me there might be a relationship with my non-professional hypothesis being somewhat as follows: Shingles is a viral infection of a nerve and frequently seems to remain dormant in people who have had chicken pox, until some unusual stress seems to block immunological guards. The sharp, burning pain seems comparable to Fibromyalgia so therefore the etiology and treatment of the two conditions might be comparable.

THE EPWORTH RECORD. This is the house organ of the Epworth Children's Home (2900 Millwood Avenue, P. O. Box 50466, Columbia, SC 29250). Several years ago they subscribed to our paper, but that didn't last. Robert regularly receives the RECORD. A few months ago Robert wanted to send them a substantial contribution but neither his mother nor I would countersign the check. The Home is a hundred years old and judging from the pictures in the RECORD does great things.

ADULT BASIC EDUCATION (ABE). Robert has been attending one night a week for a decade and is looking forward to having Doris Patten as the teacher; Luke Miller has retired from teaching. In keeping with a national direction change to have paid work as more of a goal, the local host will now be the Career Planning Center. Most of the funds are Federal funneled down through the SD Department of Education. Doris previously worked for the Adjustment Training Center and before that she and Robert's sister, Kari, worked teaching at Dakota House, which has behavioral and dysfunctional family children as students. It would be great if you could get the pertinent facts about ABE in your area and let us print them. This is an under- utilized program.

DS & PARITY. A commentary in the BRITISH MEDICAL JOURNAL of 3-8-97 by Prof. R. J. Lilford suggests that the condition of a woman with respect to the number of children she has borne rises with age. Lilford questions a research report from Israel based on the births during the 80's in which DS incidence increased with both increased age and increased parity. If "children borne" increases the chances of having a child with DS it isn't clear why this should happen.

DS NEWSLETTERS. We get several. This column will extract or comment on the most worthwhile. NADS NEWS (P. O. Box 4542, Oak Brook, IL 60522) and DS Press (1821 Summit Rd. S #102, Cincinnati, OH 45237) are houseorgans of two of the longest, most progressive DS organizations in the Nation. Almost all the articles are of interest to anyone seriously concerned with DS. Although neither seems to attempt to attract worldwide readers, they both would probably provide trial subscriptions to those interested enough to send, say $5. Actual annual membership changes aren't much more. They both are long-time supporters of DS Awareness Month and have done much to enhance the image of people with DS. Jane Page-Steiner in the DS Press extolled the NDSC convention and encourages everyone to attend next year's convention. Sheila Hebein is the NADS Executive. Both organizations have profited greatly from Jane and Sheila's management expertise. Sheila seeks pictures of people with DS alone, or with others, for brochures, their WEB page and other awareness enhancers; please give NADS permission to use them for public awareness and print the name and age of the person with DS on the backs.

YOUR HOME IS YOUR CHILD'S FIRST SCHOOL. This brochure can be purchased from the International Association for $8 per 100. They have 10 other titles too--many in French or Spanish (800 Barksdale Road, P. O. Box 8l39, Newark, DE 19714). Why not send $5 or at least a few dollars and ask that they send you an assortment; they are well done.
VIDEOS, BOOKS, SEGA, NINTENDO, S/N EXCHANGE/LOAN. There is no charge to list wants or availability, but we can't be an intermediary if problems result. We have too many books to list now, but may do so later. The same is true of video games, but we do have the Arc video "Everybody Wins!" with a handbook on supervising the employees with mental retardation, which we will loan to subscribers without cost, but with an agreement to return it within two weeks; it is about a decade old, but still good. Also, we have a video about Robert of the same vintage available under the same terms.

MEETING MINUTES FORM. Robert is a member of "People First" and they have adapted a standard 2 page form to record minutes of their meetings. It works well and probably could be used for parent support, PTA or almost any meeting. We will send one first class to any subscriber who requests it.

HLA-AZ. The 9-5-97 SCIENCE cites geneticist Haydeh Payami at Oregon Health Services University as finding that the gene causes people to acquire AD 3 to 7 years earlier than those without it.

JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS. This bimonthly is published by Plenum for $61 to people who certify it will be for personal use: (233 Spring St., New York, NY 10013). The August issue like many others includes the use of DS as a control group. One relates to the ability to imitate pretend play acts by children with DS, another report was on children's structured play at home with their mothers.

FDA CONSUMER. This bimonthly is published by FDA. Subscription cost is $10 (Superintendent of Documents, P. O. Box 371957, Pittsburgh, PA 152250-7950). We endorse it. The July-August issue contains an excellent article on Attention Disorders and how to overcome them.

IDEA OVERHAUL: WHAT IT MEANS TO YOU. Since this article is in the September AMERICAN TEACHER, it's clear who the "you" relates to. If you are either a teaching professional or a paraprofessional, we recommend that you ask your librarian to get a copy of page 10 for you through I.L.L.

NURSING TIMES FEB. '95 1-7; 91(5): 61. The citation is for a page on Dr. John E. Down including a picture of him we reprinted several years ago. He published the paper which first delineated the disabled conditio that now carries Down's name. He died in 1896 at age 68.

EMPLOYEE DEFINES WHAT'S RIGHT IN DISABILITY ACT. What is a reasonable accommodation for an employee under the Americans with Disability Act (ADA) giving a person a right to sue? Answer: The employee has to define a reasonable accommodation. This normally would be done in writing and with the guidance of a professional such as a doctor, rehabilitation specialist or other professional.
The courts have also held that in defining a reasonable accommodation, an employee needs to be specific in what things an employer can do to accommodate a disability. If there is a suit, the employee bringing the case has the burden of proof to show that an accommodation is possible and then the employer has the burden of proof to show whether it was reasonable.
The above from: WHAT'S THE LAW? By Rollyn H. Samp, J.D.

INTERNATIONAL ORGANIZATIONS. I periodically peruse this Gale encyclopedia. It lists currency abbreviations and definitions along with other information, too. There are 15 Sections and even though Gale has published similar directories for more than 40 years, the breakout is somewhat subjective with many similar organizations listing themselves in different sections. For instance, Down syndrome organizations can be found listed under "Mentally Disorders" under the Social Welfare organizations, as well as under "Genetic Disorders" within the Health and Medical Organization section. If subscribers provide us with one or two "conditions" of interest, we will respond with appropriate photo copies of any information on organizations listed in the '97 Edition. We are gong to send a free copy of this issue to DSA (155 Mitcharm Road, London SW 17 9PG England), which was founded in 1970 and almost as old as NADS as well as NDSA located in Hyderabad, India and the Latin American DS Association.

THE ART OF PARENTHOOD. in practicing the art of parenthood an ounce of example is worth a ton of preachment. When we set an example of honesty our children will be honest. When we encircle them with love they will be loving. When we practice tolerance they will be tolerant. When we meet life with laughter, they will develop a sense of humor. Our children are watching us live, and what we are shouts louder than anything we can say. This is from a Hallmark plaque by W. A. Peterson and reprinted from the book "The Art of Living."

GROSS MOTOR SKILLS IN CHILDREN WITH DOWN SYNDROME. Children with Down syndrome master basic gross motor skills (everything from rolling over to running) just as their peers do, but need help along the way.
     GROSS MOTOR SKILLS is divided into two main parts--birth to walking and post walking--making it easy for the reader to focus on the material most applicable to the child. Part I addresses clusters of skills that build one upon another and cover early development such as head control, rolling, sitting, crawling, pulling to stand, and walking. Acquiring these early skills builds the child's strength and confidence in preparation for post walking skills covered in Part II, including walking on uneven surfaces, inclines, curbs, steps, running, jumping, and riding a tricycle.
     Rounding out GROSS MOTOR SKILLS are discussions about how other aspects of Down syndrome--physical characteristics such as short arms, medical problems such as respiratory conditions, and temperament (motor driven vs. observer)--impact gross motor development and what can be done to maximize the child's potential. In addition, each chapter includes a "Motor Milestone Checklist," an aid that helps track a child's progress plus provides focus for what the next step should be.
     Write or call Woodbine House (6510 Bells Mill Road, Bethesda, MD 20817), toll-free 800/843-7323 - $21 postage paid.
     I think it is an excellent book for those concerned with babies and toddlers, who have DS. Although the author (Physical Therapist Patricia C. Winders) says most children with DS crawl before they creep, Robert didn't. At least ask for a free copy of the latest Woodbine House catalog!

ROBERT'S POWER WEIGHT LIFTING. The strength and conditioning coach at Northern State University, Doug Bull, has set up practice every Tuesday and Thursday at 1:00 p.m. Heather Pennie, TRSp. of the ATC will assist Coach Bull and manage the progam for the ATC.

KEN BENEDICT'S SECOND CHANCE. This article is on pages 92-9 of the May READER'S DIGEST. Teddy Salisbury was 25 and in a California brush fire. Ken helped Ted get out before the flames engulfed the area he had been in. This was the start of Ken's second chance as he had been in a minimum security prison and with this effort he turned around, got a job as a computer operator and last year was named "Employee of the Year" by his employer.

FAMILY RELATIONS. The October issue was devoted to family caregiving for persons with disabilities. It is a publication of the National Council on Family relations (3989 Central Ave., NE, Suite 550, Minneapolis, MN 55421.

INCLUSIVE EDUCATION CONFERENCE. This should be great. The regular conference is
February 20 and 21, but there are several pre-conference sessions on Thursday plus registration and the opening presentation. There are no refunds and they sold out early lst year. Rooms are $86 at the Denver Marriott if reserved before January 27, 1998. I stayed at the YMCA while there ten years ago for the NDSC and enjoyed the area as well as the Marriott Tech. Center. The regular conference cost is $120. Write the Peak Center, 6055 Lehman Drive, Suite 101, Colorado Springs, CO. 80918, or call 719-531-9400.

GUIDE TO U.S. FOUNDATIONS. This is another normally library research document that your librarian could probably get for you through inter-library loan if not shelved locally. Any librarian can help you find the address of foundations or trusts that might provide some money for your elemosynary interests.

DISABILITY SOLUTIONS. This is the only free journal that we know of, but we would wager that if more people (like you) don't ask to have a label made out it will go the way of many things and succumb to apathy. This publication is bimonthly and is printed on high grade paper. It is backed by the Enoch-Gelbard Foundation and produced by Registered Dietitian, Joan Medlen. The "lead" article in V2 #3 is an outstanding article by the mother and two sisters of a girl with spina bifida (Dr. Coral, Cassie and Michelle Russel from Emporia, KS). Dr. Russell is an assistant professor at Emporia State University. Other articles in this issue including one by the editor relates to siblings. We strongly urge you to drop a postcard to Disability Solutions, 9220 S.W. Barbur Blvd (119-179), Portland, OR 97219-5428 and get on the mailing list now. We all need appreciation, motivation and stimulation!

BEYOND OUR WILDEST DREAMS. That's the theme of the coming Down Syndrome/AIM HIGH Conference on April 4, 1998 and it certainly reflects the Johnson families reaction to how the world is reacting to disabilities compared to the period before Robert joined the family. It only costs $15 but since it involves the entire Schuyler Inn in Menard, NY (very close to I-787) you might wish to stay there Friday evening. One portion of the program will relate to on-campus college placement at a small community college in California offers the potential to obtain a two year degrees while living and working on campus for students with high school certificates who aren't yet 25 years old. Another workshop will be on managed health care. People aged 15 or older who have DS will also have available workshops (P. O. Box 12-624, Albany, NY 12212 for reservations, etc.). Celebrate with others "what is" and "what might be."

NDSS UPDATE. The Fall issue reports that during July 9-11, their National Conference will be held at Lake Lain Lodge in Delavon, Wisconsin. Delavan is 75 miles from Chicago and 45 miles from Milwaukee. Call 1-800-221-4602 to receive a brochure ASAP. Hope to see you there! It also includes the Gene Stallings book by Little Bruin for all of us interested in reactions of the coach of the Crimson Tide's football team. Tell professionals you know concerned with DS to call the above 800 number to receive a brochure on the forthcoming November 20-22 Internal Conference on Cognitive and Behavioral at Amelia Island, FL. It provides thumb-nail descriptions of ten forthcoming conferences. It shows the President signing the IDEA and David Hoppe, Chief of Staff for Senator Lott as well as six-year old Gregory Hoppe, who has Down syndrome. Another picture shows Chris Burke and 5-year old Olivia Parcaro, who also has DS (they are among the half dozen or so people with DS who have appeared in CBS's "Touched By An Angel" ). Tell CBS Studio Center, 4024 Radford Avenue, Studio City, CA 91604, what you think of the series.

BULLIES AND THEIR VICTIMS. According to one of the best recent books on this subject there are 27 million victims in American schools and a half million or so bullies. Both categories should be helped or the cost to society increases. The book noted above is BULLIES AND VICTIMS by S & P Fried; it was published in '97 by M. Evans and Company. Tell your librarian to suggest other material too.

NDSS FREE DS TEACHING POSTERS. Call 1-800-221-4607 for one of three. They are designed to teach non-disabled students and others about DS, to help teachers foster friendships and understanding among students with and without disabilities, and to encourage positive relationship. One relates to up to fourth grade students, the next to seventh grade and the most recent adolescents to tenth grade. NDSS fulfills it mission trough education, research and advocacy.

MINISTRIES FOR THE DISABLED. Robert received a letter very similar to one I got about 25 years ago with the poem "Heavens Very Special Child," which I published. Shortly thereafter, Rev. Massimilla, chastised me for not recognizing his wife as the author, but I was not aware of who the author was or I certainly would have acknowledged Edna. The poem she sent Robert is a sample of the poems and music this retired clergy produces. You can write them at 229 N York Road, Hatboro, PA 19040-2003.

GUARDIANSHIP. Robert apparently indicated in a telephone conversation that he would subscribe to various magazines. When another call came to confirm the order I told the lady that I was appointed by the appropriate judge as a limited guardian and wouldn't agree to the payment of any telephone orders or for any merchandise I hadn't approved. There is no doubt from what I heard that if I didn't have a legal guardianship, there would be a bigger mess that what we have. We recommend that parents of a disabled teen consider getting legal guardianship before the child turns 18 years of age.

SLEEP APNEA. Pages 4 and 5 of the John Hopkins Medical Letter HEALTH AFTER FIFTY is directed to this subject. It recognizes the lack of agreement. It reiterates the findings of the University of Wisconsin '94 study of 147 subjects that there are clear and lasting elevations in blood pressure of subjects with apnea. The question as to whether sleep apnea causes obesity or vice versa, has not been resolved. Males with apnea tend to have a collar size larger than 16.5 inches. As we noted earlier, Art Hettinger, improved with (CRAP) treatment. When all else fails, uvulopalatopharyngoplasty (UPPP) can be done, but so far that surgery only eliminated apnea in 50% of the cases. Johns Hopkins is testing a device that automatically opens the airways when apnea occurs, but it will take years before FDA approves it for other than experimental use.

UT NUTRITION CLINIC. Robert and I have again submitted reports on our well being and problems and expect to have our blood samples in around Thanksgiving. They appreciate our enthusiasm and interest in their research. To obtain details on their program write to the following address: Biochemical Institute, Nutrition Clinic, ESB 442, University of Texas, Austin, TX 78712-1096 (A5100).
Robert and I visited the Clinic after the Arc Annual Meeting in 1987 and I had been shown through the facilities sometime earlier. In addition to providing information for their data base, they provide us with nutritional needs and excesses with corrective vitamins, minerals, or other nutrients for free. They prefer to receive blood specimens in person, but can accommodate overnight delivery. We are very pleased with the program and recommend that you ask them for their eligibility application.

THE COMPLETE DIRECTORY FOR PEOPLE WITH DISABILITIES. Of course, the work "complete" relates to the resources used by the publisher and editor at some past time. However, this is a great annual and you should at least see if your library has a current copy, or call Grey House Publisher 800-562-2139 or write them at Pocket Knife Square, Lakeville, CT 06039. The Milken Family Medical Foundation, 1250 4th, 6th Fl., Santa Monica, CA 90401 is one of the many funds listed. If you seek funds to support work that might be considered medical, I suggest you write them for specifics relating to possible assistance from them.

DISABILITY FUNDING NEWS. They return every penny you pay for it if you aren't pleased (or for any other reason) or refund all payments after that except for unwanted issues. If you subscribe and they don't do that let me know. Call 1-800-666-6380 or write 8204 Fenton, Silver Springs, MD 10910-9935. Free copies are available for conference/seminar use. Call 301-588-6380.

ORANGE COUNTY CA OPHTHALMOLOGY CLINIC DISCRIMINATED. In the 9-23-97 disability funding news (see above) we understand a 15 year old girl with DS will get $5,000 in damages as the clinic has a new policy to ensure it doesn't discriminate under ADA. Employees will receive mandatory training on the new policy.

DS, ABNORMAL SUPERIOR TEMPORAL GYRUS AND PLANUM TEMPORALE. AMERICAN JOURNAL OF PSYCHIATRY 1997; 154:1424 - 1329 concludes that in DS plenum temporale volume may be selectively smaller than normal. The author (5 medical doctors and a Ph. D.) confirmed a smaller brain volume and larger ventricular volume in patients with DS (age range 30 - 60 years). Reprint requests should go to Dr. Sophia Frangov, Department of Psychological Medicine, Institute of Psychiatry, De Crespigny Park, London SE58AF, U.K. You can probably get the article faster through I.L.L. If you are concerned about language comprehension and/or articulation you will want to read this article.

MORE IMPORTANT THAN I.Q. That's the heading in 10-10-97 TIME of a note to the editor from an 11 year old girl from Brookline, MA. She says "If all second-graders learned politeness and kindness just as they learn math and science, America would be a much more civilized society in 25 years." So true! And she would be able to get much more enjoyment the final half of her life than she is likely to get now. Considering priorities certainly should be an indication of the end of childhood. Robert also has a ten year old niece and she too shows great promise that the world is going to be much better and more considerate.

PRIONS Dr. Prusiner got the Nobel Price for Physiology or Medicine due to his involvement with the disease causing agents and I have written about him and them since he made his first announcement. This was primarily because Dr. Al Rosanova told me in 1972 that in examining the brains in cadavers of former people with DS looking for a virus, he had found only a strange protein. Prions pass on their aberrant form to nearby proteins and cause mad-cow and other diseases according to Prusiner. Others still search for unidentified viruses. Right or wrong, Dr. Prusiner deserves his award for espousing his findings regardless of the critics.

DIRECT MAIL. If your organization receives or sends mail ask USPS 1-800-THE USPS X 2043 or (Marketing, P. O. Box 2484, Warminister, PA 18974-0049) to send Priority Mail the "Direct Mail Deliveries" 3-ring binder and booklet (with pocket containing Windows software for mail profits calculation). Besides that the (1-½" x 11-½" x 2-5/16") Priority box probably can hold most pertinent mailing historical documents for your historians through the next Century. Even if you don't have a mailing permit send for the kit and present the costs and facts for consideration.

ROBERT'S BOWLING. He has participated in the SD Special Olympics and Aberdeen ATC programs for several years, but usually bowled nondescript lines producing fewer than 100 pins. Over the years, he has accumulated his own ball, carrying case, wrist protector, shoes, etc. Now he averages 111 a game in three lines and not one under 100 pins. He enjoys the program and the SD State Bowling Championship that was held in Aberdeen again in November. The free banquet and dance were also enjoyable and therapeutic. Like many things the organization of volunteers and staff makes it all work, but Robert and I want to particularly identify Johna Thum, TRS of the ATC for diligent and high quality work.

ROBERT AAMR SUPPORTING MEMBER. He first joined as a student member and this year he has been as associate; but he will change to a support member which costs him $40. I'm a retired member and no longer pay dues. They list People with Down Syndrome and the identifier for Robert and People With Special Needs for me. Anyone can be a AAMR member with $115 being the maximum dues for which you get three great publications and a free division affiliation; since there are 16 divisions, you can join more at $8 additional for each (800-424-3658 for more information).

PACER CENTER RECEIVES GRANT to Serve Parent Centers Nationwide. The U. S. Department of Education has awarded PACER Center, Minneapolis, a grant of $1.2 million per year for five years to establish the TECHNICAL ASSISTANCE ALLIANCE FOR PARENT CENTERS (the Alliance). The grant will be used to provide technical assistance to approximately 75 parent centers nationwide. Each state has at least one parent center.
The Alliance will provide a system to disseminate information and build working relationships among parent centers. The project has several parts, including developing access to the Internet in the parent centers and encouraging systems change and school reform.
The Alliance will collaborate with national clearinghouses, regional resource centers, and national dissemination projects that focus on the education of youth with disabilities to identify strategies for working with parents and educators. The organizations will then distribute the information through varied activities and media.
For information, contact PACER Center at 4826 Chicago Ave., S., Minneapolis, MN 55417 or call (612) 827-2966. The toll-free number for Alliance is (888) 248-0822. The e-mail address is PACER's Web site address is and the Alliance Web site address is

GRANT INFORMATION. Write 12798 W. Forest Hill Blvd. (Suite 304), West Palm Beach, FL 33414 for their flyer describing their grants publications which generally cost $65 each with the handling fee.

MUMS. This national Parent-to-Parent organization is for parents or care providers of a child with any disability, disorder, chromosomal abnormality or health condition. MUMS' mission is to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition. Through a database of over 10,000 families from 35 countries, covering over 2200 disorders, very rare syndromes or conditions can be matched. Parents can then exchange valuable medical information, as well as, the names of doctors, clinics and medical resources or research programs. Families provide each other with emotional support and they don't have to feel so alone when they have each other to reach out in time of need. MUMS networks with other organizations which do matching, thus expanding the possibilities of finding a match. MUMS also connects parents with support group dealing with their child's specific disability or assists them in forming a group. The newsletters allow families to share and speak out about issues affecting their lives. Annual subscription is $10 for Parents, $20 for professionals. Parent Matching is free. Fees can be waived. Write: 150 Custer Court, Green Bay, WI 54301-1243.

STATISTICAL BULLETIN. This quarterly publication from MetLife can be yours free for l/2 year if you send a postcard to Margaret Muschinki at One Madison Avenue, New York, NY 10010-3690 and ask for a free six-month trial subscription. Topics covered are Mortality Studies, Population Changes, Life Expectancy, etc. It has been published for 75 years and is reliable.

IGF-1 LESSENED DAMAGE TO NERVE CELLS. AP recently put out an article on this breakthrough that might provide help for nerve disorder sufferers such as those with multiple sclerosis, ALS and diabetic neuropathy. Two University of Michigan Medical School officials were cited in relation to research they have done and tests on about 40 people with neuropathy are being pursued at the Mayo Clinic.

EEOC ENFORCEMENT GUIDANCE ON ADA. The most recent "Notice" we have received is #915.002 which relates to Psychiatric Disabilities. It reveals EEOC principles on other matters relating to the Americans With Disabilities Act also; to ask for a copy write P. O. Box 12549, Cincinnati, OH 45212-0549.

YAI. That's the acronym for the Young Adult Institute which is now increasingly referred to as the National Institute for People with Disabilities. However, like several other "National Institutes" it isn't part of the Federal government, but it is a non-profit organization. We suggest you write them at 460 W 34th St., New York, NY 10001 for information and their flyer on their forthcoming International Conference (April 27 - May 1). You can contact them at

NADS I joined when Robert was born in 1972 and have never lost appreciation and trust. It is the oldest organization in the country exclusively serving people with DS. It was instrumental in the establishment of the DS Congress (now NDSC) and the Adult DS Center at Lutheran General Hospital in Park Ridge, IL, which is a collaborative effort. Drs. Brian Chicoine and Dennis McGuire are the Center's dominant professionals; however, if you seek information, I suggest you contact Ann Jonaitis who has a 15 year old son with DS (847-795-2303). Another top-notch physician helping people in the Chicago area is Dr. Nancy Roizen (773-702-0188), who is currently conducting a study on the behavioral, cognitive, and medical characteristics of children with Mosaic DS.
The November NADS NEWS reprinted "the 10 Commandments of Community Advocacy" from the Family Support Network. Another article is titled "Self-talk" and since it is as compact and informative I won't try to summarize it, but will extract only the final words: "...self-talk allows adults with DS to problem-solve, to vent their feelings, to entertain themselves, and to process the events of their daily lives." Contact Ann J. if you want a copy or have information on this subject Ann could pass on to the three doctors who wrote it.
Another article is on the inclusion of 11 year old Tyler by Merrily Smith. Tyler attended a parochial school at least for a period of time. A graduate of Partners in Policymaking wrote an article telling how her 5 year old daughter, Sammie, got signed up for her home school regular kindergarten program.
There are also excellent book and video reviews and information on a free 100 page booklet "Including Your Child" available by calling the National Library of Education 800-424-1616. Don't wait! Send something ($15 for parents) to P. O. Box 4542, Oak Brook, IL 60522-4542 and get on their mailing list.

"INCLUDE US" VIDEO. The story is on page 36 of the June GOOD HOUSEKEEPING. Blockbuster Video sells it. There is an educator's guide with it too. Call 888-462-5833 to order for $14.95.

A GOOD POLICY. Do what you can, where you can, with what you have.

FIBROMYALGIA (PREVIOUSLY CALLED FIBROSITIS). This has been extracted from the '97 THE JOHNS HOPKINS WHITE PAPERS on arthritis, which was authored by medical doctors S. Margolis and J. Flynn (600 N. Wolfe St., Baltimore, MD 21205).

Among the other resources they list the Fibromyalgia Alliance of America, P. O. Box 21970, Columbus, OH 43221-0990. We are attempting to establish the Mid-NorthAmrican Fibromyalgia Chapter as an affiliate. If you are willing to support the Chapter, send $5 to us and we will put you on the Chapter mailing list.
One of the journal articles referred to in this section (page 45-52) cites V. 40 #1 of ARTHRITIS & RHEUMATISM, which reports that women with Fibromyalgia have five times greater muscle tenderness than healthy women.
Fibromyalgia accounts for up to one-fifth of all visits to rheumatologists. It doesn't affect the joints, but produces pain in the muscles, ligaments, and tendons. Originally, the condition was called fibrositus because it was thought inflammation was involved. Since "deep" sleep is disrupted and healthy volunteers deprived of deep sleep developed tenderness similar to Fibromyalgia, that might be the cause of the condition. There are common non-pain symptoms which some believe may be due to an underlying problem such as an imbalance of hormones or neurotransmitters. In all cases, Fibromyalgia is a physical disorder.

And a woman who held a babe against her bosom said,
Speak to us of Children.
And he said.
Your children are not your children.
They are the sons and daughters of life's longing for itself.
They come through you but not from you.
And though they are with you yet they belong not to you.
You may give them your love but not your thoughts.
For they have their own thoughts.
You may house their bodies but not their souls.
For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.
You may strive to be like them, but seek not to make them like you.
For life goes not backward nor tarries with yesterday.....

The preceding from Kahlil Gibran except for the caption, which is mine.

BE ON THE ALERT FOR SLEEP APNEA. This article is on pages 41 to 54 of the 10-30-97 issue of PATIENT CARE (5 Paragon Drive, Montvale, NJ07645-1742). Very complete and current!

VOLUNTEER PROGRAM GIVES PROGRESS REPORT. The 11-26 ABERDEEN AMERICAN NEWS, on the front page carried a report that Colin Powell, who chaired the Alliance for Youth Campaign, made an hour plus report to the Nation on the plan to connect two-million young people with five basic resources by the year 2000. The NEWS also devoted a half page to a picture of the local convener of the group from here who attended the President's Summit, who said there are plans to have a local summit this spring, but that it will be necessary to pry the apathy out of people.

SOUTH DAKOTA REPORT. This is the newsletter of SD ADVOCACY SERVICE and John Hamilton is the editor. Bob Kean is the SDAS Director. Several staff members have been with SDAS for more than a decade and have helped make it what we think is the best of its kind in the Nation. If you want to check it out, write SDAS and ask that you be sent their November (or other representative) issue of the SD REPORT and/or a copy of their goals and objectives for FY '98 (221 S. Central, Pierre, SD 57501).

ALZHEIMER'S DISEASE. This '76 CRC Press book mentions DS twice. We have in another article discussed the positive statement that dementia in the elderly is clearly related to the number of plaques in the cerebral cortex. We have also reported that young (under 35) mothers who gave birth to a baby with DS have five times the risk of mothers with other MR to have an AD-like dementia and that the risk of dementia was not increased for fathers of patients with DS. That statement is followed by the concluding sentence: "This may imply a common genetic susceptibility to DS and AD." We solicit reactions, interpretation, etc.

THE FIVE MINUTE PEDIATRIC CONSULT. Williams & Wilkins published this excellent book by M. W. Schwartz, MD. You can purchase it by phone (800-638-0672) but it is intended for physicians. I was impressed by the detail on the conditions I checked out (including DS). The two pages on DS should be available to all physicians treating people with DS; it was put together by Esther K. Chung.

SLEEP APNEA. The Harvard Health Letter also has the subtitle "No Rest For The Weary Without Proper diagnosis" on their article, but they strongly recommend that people who snore and gasp or snort during sleep should see their doctor. See also our other articles on pages 11 and 15. Ask your librarian to get a copy of all three of these articles for you if any of the signs noted in the preceding sentence exist.

THE MAKING OF A DIFFERENCE FOUNDATION. The Winter Journal of the DS Association of Victoria has a picture of Luke Herbert and mother on the front cover with their complete outfits and (we assume) their bicycle built for two provided by that foundation. DSAV recently moved into new facilities with half the cost ($75,000) being loaned by people with DS. One of our subscribers, Dr. Stephen Trumble (Head of Disability Services, Monash University) facilited a forum to which six pages of this issue of DOWN'S VOICE were dedicated; one of the dietitians-nutritionists who has a 12-year old son with DS spoke on the superoxide dismutase, gluthione, peroxidase inbalance causing excessive hydrogen peroxide which may account for premature aging and other DS problems. She discussed research on vitamin E which indicated it prevented degeneration of neurons in fetal DS brain tissue and concluded that A,E,D, B3, betacarotene, Co Q 10, methionine, glutathione, selenium, and folic supplements are needed. However, she noted that sometimes people with DS have altered metabolic pathways for folic acid and methionine but do not have deficiencies (Mary can be contacted at (07) 3202-6153 by other professionals. I also enjoyed the statement by my counterpart with DOWN'S VOICE who says it aims to pass on information, not advice, which is all we do too. Send a couple of dolars to DSAV, 495 High Street, Northcote VIC 3070, Australia and ask for a copy of DOWN'S VOICE or if a student/pensioner, send $12 and others $20 for a subscription.

RECEIPTS. Robert usually encloses a pocket calculator as a premium along with a "thank you" note in a palm sized brown envelope when we receive money. We don't always remember and that is why on your lable there is a series of 3 to 5 digits indicating the year, month and amount of your last contribution, with a + sign if you have given before. For those who don't want the calculator he just intends to send a postcard. Each deposit slip includes the name and address of the donor with the amount so we intend to go over them for the last few years to assure the labels correspond. Please inform us of discrepancies. We count on you as we enjoy putting this paper together. Please send us a letter soon with $5 or more.

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

  Revised: April 24, 2004.