People with Special Needs Down Syndrome Report


VOL. 17 #3SSN0731-566XJune 1997 

SENATORS DASCHLE AND LOTT. Recent letters to and from them crossed in the mail so we will reprint Senator Daschle's latest and portions of ours. We likely will cite him again in the next issues as he is very hard working and as Senate Democratic Leader, along with his special relationship with the President, likely will again provide us significant news:

"Thank you for writing to ask about the Internal Revenue Service standard deduction for the disabled and the Individuals with Disabilities Act. I appreciate your taking the time to write to me. I apologize for the delay in my response, but your letter was inadvertently filed with correspondence answered and only recently discovered."
"The Internal Revenue Service (IRS) change to the standard deduction for the blind was part of Section 2 of the 1986 Tax Reform Act. The higher standard deduction replaced a previous additional personal exemption for the blind. This decision was made independently of the consideration of deductions for other disabled populations."
"Two bills to reauthorize IDEA have been introduced this session: the IDEA Improvement Act of 1997 (H.R.5), introduced by Rep. Goodling; and the Individuals with Disabilities Act Amendments of 1997 (S. 216), introduced by Sen. Jeffords. Negotiations have begun on both the controversial and non-controversial aspects of IDEA, in the hopes of reaching an agreement before the final bill comes to the floor."
"As discussions continue, please be assured that I will support legislation that balances the interests of schools, parents and disability advocates while ensuring the best possible outcome for the children involved."
"Robert and George, thanks again for your letters. Please let me know if I can be of any further assistance."

On April 16, he was faxed a letter relating to preventive medicine, annual health fairs, and IDEA reauthorization. A paragraph follows providing his views on preventive medicine four years ago:

"I read with interest your idea of having Medicare and Medicaid pay for the cost of an annual health fair. I share your view that such a program would be an effective vehicle for providing health screening services and health education to hard-to-reach groups, and I will discuss your idea with my Senate colleagues. While there is little precedent for Medicare and Medicaid paying for a health fair, this concept is certainly consistent with the President's emphasis on the importance of preventative care."

Our questions /comments on IDEA are reflected in the final paragraph of our 4-16 letter to him:
"As to IDEA reauthorization, I understand HR5 and S216 are the two key bills. As I noted during the last Congress the problems seem to resolve around discipline and expulsion (cessation). Your point person should contact Senator Jeffords staff to verify the accuracy of the preceding, identify the key committee people, or better identify any conflicts. In any case, we will print our next issue after we receive a status/prognosis report from you on IDEA (which will be our lead article). I should think some language could be substituted on cessation that would be satisfactory to all such as a requirement for a notice period with some sort of approval necessary from EEOC or other agency (without a 'vested' interest in education) of any proposed cessation. With hearings on a regional basis (with plenty of lead time) all parties should have an opportunity to be heard and we should at least get IDEA reauthorized."

The best reporting I have seen this year on this issue was the "lead" article in the Spring ARC NEWS IN INDIANA. It reported that a bipartisan group of Congressional staffers under the leadership of David Hoppe (Chief of Staff for Senator Lott) had three meetings in February with the two Committee Chairs attending and voicing strong support. One thought urged on all groups that I have thought was obvious was that future funding increases for IDEA would likely be tied to the ability of the various organizations to work together. One of my favorite advocates for a quarter of a century, Paul Marchand on the Arc staff, stressed a dozen IDEA principles which I should think will be endorsed by everyone (or nearly so). The article concluded with a plea for readers to write their Congressional Delegation asking for support of the bipartisan Congressional staffers attempting to reconcile differences yet this spring. We want YOU to do the same and remind you that this might be the most significant advocacy effort you can embrace in this Century. Do it now! Subscribers who seek a copy of the article cited above will obtain it by sending a #10 SASE. Also, at least send a card of thank you to the Arc of Indiana Prexy (Suda Hopkin) and/or Exec (John Dickerson) 22 East Washington St., #210, Indianapolis, IN 46204. The April MENTAL RETARDATION devotes seven pages to an article by Stanley Herr which is must reading for the Congressional Committee and anyone seriously concerned with the situation. The March DS QUARTERLY has an exceptional overview with specific reference to DS; contact Dr. Rynders the senior author (Special Education Program, Department of Ed. Psychology, University of Minnesota, Burton Hall #225, 178 Pillsbury Drive S.E., Minneapolis, MN 55455, Tel (612) 624-5241, and we guarantee he will answer your questions relating to the education of disabled people.

FEARS. The MR issue cited above also has a report on self-reported fears of children with or without mental retardation. Retarded boys feared kidnappers first and then strangers, whereas girls reversed the order of those fears. Non retarded girls listed kidnappers as first fear but boys listed it second with tornado coming first.
Senator: Your copy of PWSN/DS Report was hand addressed by Edna Wolff of the Retired Senior Volunteer Program. Like so much in life, one person does things but for any successful effort it takes teamwork. In this case, the Aberdeen Retired Seniors Volunteer Program (like thousands of others throughout the Nation) provide qualified volunteer help. Joanne Eisenbeisz has been the Director for several years years so generally can quickly ascertain what has to be done and the propriety of RSVP doing it. Robert's cousin (Dr. Paul Johnson) had a similar job years ago. Necole Weisbeck is the current supervisor of volunteer effort so she made the decision as to whom to ask to take on the task and provided all necessary support. The job was done right and fast, but even though Edna Wolff did most of the work, she and the others named don't get all the credit since if our Nation hadn't authorized RSVP a quarter of century ago, the back-up team and facilities would have not been in place. Edna is a retired school teacher and has supported RSVP for more than a dozen years. Your support NOW will greatly help Senators Lott and Daschle get IDEA enacted soon!

THE KINGSLEY'S. Emily, her husband and son Jason are among our strongest DS support families. In a recent letter she writes: "The crime prevention tips were excellent and should be taught to all of our youngsters with DS who are, indeed, additionally vulnerable to abuse and exploitation." However, she doesn't agree with the admonition not to carry large amounts of money. Robbers don't know in advance how much money a person is carrying. A robber can get angry and frustrated if he doesn't get enough to satisfy, say, a drug habit and may actually start searching a child to see if additional funds might be hidden on the child's body. Speaking from painful personal experience, Emily feels it's a better idea always to keep an extra $25 or $50 in the wallet to quickly satisfy a robber and get rid of him as fast as possible.
Emily says after graduation in June, Jason and a roommate will be moving into an apartment they are buying for him. The apartment is about 15 minutes away from their home. It's one block from shopping and the train line that will allow him to get to work and to visit home whenever he wants. The Kingsleys are working with their local Arc to establish support services from a social worker who will visit Jason once or twice a week to make sure everything is OK (bills are being paid, etc.). Jason has already started getting to know his neighbors and has invited his whole family and all his friends for a "humongous housewarming party." Emily says, "Sure, I'm a little nervous - but with the right supports in place, I think it will be just fine and will provide a future for Jason that doesn't depend on our being there forever."

TOUCHED BY AN ANGEL - CBS. We hope you saw the May 10th production that Jason Kingsley, Chris Burke and Andrea Friedman (all have DS) starred in. Watch for the next episode! For more information or reactions write CBS, 4024 Radford Avenue, Studio City, CA 91604.

HEART VS GERD PROBLEMS. More than 6 million patients seek emergency treatment for chest pain or analogous symptoms. Joel Richter, M.D., a leading authority on gastroenterology has been quoted as saying 10 to 20 percent have serious heartburn or GERD rather than cardiac disease. Of the million cardiac catherizations done annually, up to a third have a normal heart and at least 75,000 to 150,000 have GERD. Many drugs can aggravate GERD (gastroesophageal reflux disease). Both cardiac problems and GERD can be brought on by exercise or exertion. Gastroenterologists now frequently prescribe proton pump inhibitors that slow down the production of stomach acid. I'm quite sure Robert has received emergency room treatment for what probably was GERD, and I might be one of those who had an unnecessary cardiac catheterization. Disabled people who have food that goes down the wrong way or have an gastroesophageal blockage probably should see a gastroenterologist even though a sip of water may eliminate the pain that caused the immediate concern. (Gleaned from the 3-10-97 AMERICAN MEDICAL NEWS article by Greg Borzo). THE DAHLBERGS. They are some of our key partners. Kive is Robert's age; his mother Gayle recently sent a clipping about Piracetam which stated one brand had sales of One Billion in 1990 and that Dixie (Lawrence) Tofoya states it dramatically improves speech acquisition. Again, we advise anyone seeking information about this drug to study the position papers of NDSS and NDSC.

THE PRESIDENT'S SUMMIT FOR AMERICA'S FUTURE. It was held the end of April in Philadelphia. Before details, we ask that you READ THIS ENTIRE ARTICLE, because it could lead to a restorative revolution for disabled people and the entire country. In addition to the Presidents, retired General Colin Powell, was a dominant force at the Summit. One of the goals is to get people and organizations to make a concrete commitment in order to make life better for ALL young people.

The five critical resources needed by young people to thrive are:

  1. An ongoing relationship with a caring adult: mentor, tutor, coach;
  2. Safe places and structured activities during non-school hours for learning and growing;
  3. A marketable skill through effective education;
  4. A healthy start;
  5. An opportunity to give back through community service.
Bob Clayton, M.D. sent Robert the background material and asked that he help start the first "Guides for Professionals Leading Youth into the Twenty-First Century." Naturally, he accepted and will use the fingers on one of his hands to help him impress his audience with the above critical responses May 7 - 9, at the Annual SD Joint Conference of the Arc, AAMR, & People First (all organizations he belongs to and which he hopes will play a major role in the new Crusade). You can contact Dr. Clayton in care of the Birth Defects Center, Santa Rose Children's Hospital, 519 West Houston Street, San Antonio, TX 78207-3108 or through Robert.
When Robert was an infant, Dr. Clayton directed the Georgetown University Child Development Center, and he along with Dr. Mary Coleman helped give Robert a good start in life.
Illustrative of the type organizational commitments possible is the agreement between the Shriner's Hospital for Children and Veteran's Administration for medical care of Vietnam veterans whose children suffer from spina bifida. The opportunities for service are tremendous. Send us any other ideas for individual or group commitments!

BERUBE. The DISABILITY SOLUTIONS (Joan Medlen, 9220 SW Barbur Blvd #119-179, Portland, OR 97219-5428) was not kind to him in their last issue of the year - V 1 #4.
Howard Evans, the reviewer says: "This book, so laden with abjure (to me) and I am sure, 'deep' philosophical like reading without an understanding of many different philosophies Berube tosses about." However, Berube had a forward review from Dr. Mitnick in the December DOWN SYNDROME QUARTERLY. Read both reviews and the book. At one point Berube starts a section on "current" disability language by his reflection of the use of an MR word which has become an obscenity: we now insist on subtleties lost on editorial and newspaper feature writers." The term Mongoloid is obsolete, stigmatic, inaccurate and a source of confusion with an established racial distinctive term. Anyhow, I defer generally to Drs. Mitnick & Berube on words as well as philosophy, but I'm supportive of a simple universal language (at least for Emailers), and that goes against the grain of most "English" specialists. I like the quotation made from p. 260 by Mitnick "as we call them, so shall they behave." However, if a person with DS is oppositional or unduly stubborn tell it like it is. You can't make someone nice by telling them they are!

FREE, BUT WORTH PAYING FOR. Disability Solutions, 9220 SW Barbur Blvd. (119-179), Portland, OR 97219-5428; email: You get six big issues per year; tell your friends and relatives.

HOUSING AND DISABLED ADULTS. "No person may take advantage of adults who are disabled by placing such persons in fear of physical harm or taking or exercising control over the property of such persons with the intent to defraud such person. To do so is a crime punishable under the law." From the excellent free CONSUMER'S GUIDE TO SOUTH DAKOTA LAW from The State Bar of South Dakota, 222 East Capitol, Pierre, SD 57501.

FRATERNAL ORDER OF POLICE. One of the things our local Lodge does is sponsorship of Camp Courage, which is a one-day experience with a picnic, boating and fishing. There are dozens of things the Lodge donates in time or money to support including a basketball fund raiser with clients from the ATC. If you have a FOP lodge, let us know of their efforts and achievements to help developmentally delayed people. If you don't have one contact the National FOP Headquarters, 1410 Donelson Pike A-17, Nashville, TN 37217-2933 or Tel. 800-451-2711 and ask how you can help get one going.

DEPRESSION AND DEMENTIA IN DS. The February MENTAL RETARDATION has an article on the subject reporting on three adults in their early fifties. It was written by seven graduate students from Bloomington, IN. It starts out by listing eight characteristics of early aging found in many adults with DS. Since depression can be treated, they identified symptoms peculiar to each dementia and depression as well in those of both. All three subjects showed gradual loss of height, none of them experienced seizures, but all lost some communication skills and there was a noticeable decline in motor skills. The author suggests that four aging adults with DS be provided therapy before motor skills deterioration is obvious. They also state that symptoms of depression should be treated by medication and psychotherapy with additional sources of social support.

FROM THE DWIGHT GOWDEYS. Sharon is fine. However, her job ended in January when one of the dentists retired. She started a similar job in mid-June, and she is doing well. In sports, her team was second in Regional Basketball, and she was third in State Bowling. She was busy as "Miss Dream On" in parades, etc. The whole family is involved with planning for Older Parents of Children with Disabilities--both for us and on committees, etc., of Arc, University of Washington, and DDD.

MEXICAN DS EFFORTS. Most people now recognize it is a small world and there are few things unique to any nation or area. In my early efforts to obtain facts on DS, I was amazed to find the USA wasn't the world leader. In a sense the John Langdon Down Institute in Mexico seemed superior to any private USA efforts. However, I found there were two major DS support groups in Mexico in 1972 and at least a couple of Canadian groups that would pull their weight and then some if we could coordinate the forces providing support on this continent. Over the years, following the death of one of the most progressive Canadian advocates for people with developmental disabilities all significant efforts to gain a continental unified effort dwindled. However, the John Langdon Down Foundation moves ahead unabated. They had scheduled an international symposium on the biomedical and psycho educational aspects of DS for the end of April and based on their past achievements this past quarter century, it likely was a major success. Some speakers scheduled from the USA were: Pueschel, Wisnewski, Van Dyke, Shaloch, Patterson, Mills, Mattheis, Mann, Lott, Freedman, Elkins, Edwards, and Cohen. Jean Rondal from Belgium and Joe Berg from Canada probably also made it along with others. In this case, much like the NDSS, a highly motivated person (did and does) it all. Her name is Sylvia Garcia Escamilla and she was a great help in the formation of our own NDSC in '72 and '73. She is the Executive Director of the Associación Mexicano de Síndrome de Down, A.C.; Selva #4, Insurgentes Cuicuilco, México 04530 D.F., Telephone (525) 666-8580, FAX (525) 606-3809, or otherwise communicate any significant international DS efforts to her. There is a Federation Internationale de Sindrome de Down. If you can read Spanish subscribe to their EN CONTACTO.

CONDUIT? Many good citizens seem to prefer being an integral valve in the communication pipeline forcing both seekers and providers to go through them and thus becoming dependent on their health and many other priority concerns. Isn't it better to exert some effort to inform the populace of resources without requiring that you be privy to all the details? You probably would be referred to over time as just "somebody", "some how", etc., as the provider/source of very important information, but that isn't so bad. Some people don't want to get involved in anything and would never leave their resting place if possible. Naturally, when they are, or might logically be, care givers for a disabled person there is a drive, for many, to try to educate/motivate them for the sake of the disabled person. It isn't difficult or expensive to become known as an information conduit in regards to one or more disabling conditions. Many publishers of telephone directories are perfectly willing to identify you (without cost) with the conditions with which you have developed expertise. A valve sometimes blocks transmission, whereas a conduit is always open and permits a continuous flow or provides protection!

USED STAMPS/TUBFRIM. Tubfrim is a humanitarian program of the Norwegian Health Service. It was founded in 1928 to finance TB research and aid children afflicted with TB. Now the aid goes to the Society for Health and Development of Retarded Children and Youth. It has raised over 10 million kroner. Used stamps can be sent directly to TUBFRIM, N-3540, Nesbyen, Norway or to any Sons of Norway Lodge. Leave about one-half inch around the stamp. If you find cards, etc., dated before 1960 send it all. They welcome stamp collections, old envelopes, covers, etc., too. Arvid Syvertsen and Birgit Kastet take care of the material from Nesbyen. It is a labor of love and humanitarianism. If you have an interest in Norwegian matters, ask the Royal Norwegian Embassy (2720 34th Street, N.W., Washington, DC 20008-2714) to put you on the free mailing list for NEWS OF NORWAY.

SOUTH DAKOTA ADVOCACY REPORT. This has been an outstanding free publication for a dozen years. The Director, Bob Keen, and the entire staff are diligent, competent and capable (221 S. Central Avenue, Pierre, SD 57501). Their March issue had 16 fact-filled pages. One page highlighted 27 year old Corey Blachford who has DS and who holds a full-time job at a supermarket, drives his own vehicle and lives in a home he had built. He and his Dad have graduated from a "Partners in Policymaking" program along with a hundred others (managed by the SD Advocacy Services).

GUARDIANSHIP/WHEN PEOPLE ARE RESPONSIBLE FOR THEIR BILLS? Generally, when a person turns 18, joins the Armed Services, gets married, or if the parents formally deny their parental duty the person becomes financially responsible. However, implied emancipation is very difficult to determine. Before Robert turned 18 we all went to court and even though he wasn't enthused, the judge made his parents limited guardians; probably those who are SSA "Representative Payees" wouldn't need to also be guardians. Robert hasn't capriciously ordered goods, but as I was writing this article, we got a call from INVESTOR'S BUSINESS DAILY. I didn't even have to tell the caller I was Robert's guardian. When Robert gets home from the sheltered workshop we will discuss that incident and this article with him, making any changes.

HYPERTENSION? More than one-third of those with the condition are unaware of it, says the American Heart Association. Only one of the numbers needs to be elevated to have high blood pressure. Recently, it has been reported that people who have a slightly elevated first number (systolic - during heart contraction) have a 56% increased risk of death from heart disease and 42% increased risk of stroke. More than 40 years ago when I was given a comprehensive physical upon taking a job at the Pentagon, I was told I had hypertension, but was so dumb I thought they were retaliating because I tried to hurry them up and suggested the medical staff were all goof offs. If I had paid attention, I would still be alive (small joke). Anyhow, caregivers of disabled people as well as all disabled people should discuss with the primary physician the possibility of hypertension.
One study found that regular exercise combined with a low fat diet and lots of fruits and vegetables minimized the need for drug therapy for average blood pressure readings of 160/95 or lower. (Largely taken from 4-14-97, John Carpi article in the INVESTOR'S BUSINESS DAILY).

MYSTERY DISEASES. " Aren't they all?" might be your response, but if you consider all you know now about DS or any of the other major maladies and contrast that with what you knew when you first become aware there was such a condition you will recognize that there has been a significant increase in awareness. This recurring column will highlight conditions which have been called chronic fatigue, myalgia encephalomyelitis, fibromyalgia, etc. They may be related or perhaps the muscle and joint pain, headaches, sleep disturbances, weakness, etc., are just common complaints. About 100 different names have been used for complaints similar to those listed above. Robert's sister, Kari, has finally had her disorder diagnosed as fibromyalgia so you can be sure we will report any significant findings and we will be extracting from the monthly Canadian journal of the Myalgic Encephalomyelitis Association.

CRIME PREVENTION TIPS FOR THE DISABLED. Robert's cousin, Charles Dorsher, sent the following tips from the Crime Dog, McGruff: Like all persons young and old, the disabled should be alert to their surroundings and take common-sense precautions inside and outside their homes with regard to locks on doors and windows, answering the phone and door, driving, and traveling on public transportation. If you have a physical or sensory impairment, however, its important to:

  1. Let family or friends know where you are going and what time you expect to return home.
  2. Carry enough money for telephone and emergency use, but never carry or display large amounts of cash.
  3. Never let strange phone callers know you are alone or disabled.
  4. Be involved. Help your Neighborhood Watch with newsletters and telephone calls.
Join a Window Watch to keep an eye out for unusual activity in your neighborhood. Help out a neighbor who's been a recent victim of crime. The more active you are, the safer you'll be--and the safer your neighborhood will be.

SLEEP APNEA. "My son Dan just turned 18 years of age and was diagnosed with sleep apnea approximately 6 months ago. Once we were able to get him to leave the breathing mask on all evening we began noticing a difference. He sometimes came home from school and went to bed for the evening. Now he's in his room singing at 10:00 - 10:30 p.m. He's also more conversational and more likely to do his household chores without too much of an argument. His teachers have shared that he seems to be able to concentrate more and get frustrated less."
The above was in response to an article we ran last fall on Art Hettinger, who also has DS and sleep apnea. His mother says Art not only has continued to use the mask without prodding, but insists on taking it when they travel. Art has lost lots of weight and looks like Mr. America. If you know of anyone who falls asleep during the day or is listless, read up on apnea. It is something physicians frequently misdiagnose and can reduce significantly opportunities for proper development.

TOTALLY DISABLED. EEOC has published guidance for ADA claims. It seems to allow people totally disabled and unable to work who collect disability benefits to retain qualification to work under ADA and employers must accommodate their disability. This isn't the first time different organizations have held different views on the meaning of words and probably it will take time to reconcile all the different considerations. Robert receives $200 monthly from SSA under SSDI because he gained enough quarters from his employment as a student aide. He now works ten hours a week vacuuming at Herberger's Department Store, but the ATC provides transportation and oversees the operation. His SSI is reduced because of his extra income and if he should do such good work that he would get a full-time job that pays a living wage, or be otherwise "gainfully employed," it seems reasonable to assume that both his disability payments and SSI would be terminated. SSA considers "gross" (not net) income.

WHO HAS A DISABILITY? Please check out a copy of the Americans With Disabilities Act and check the definition on ADA (enacted on Robert's birthday) which defines "disabilities" broadly. Most people recognized as having a disability fall within the first portion of the definition. The second part relates to recently recovered people with cancer or a mental illness. The third part covers people "regarded" as having a disability such as facial disfigurement. Court decisions will eventually clarify if recovered addicts, alcoholics, stutterers, and those with a multitude of other conditions not directly covered by the first part of the decision are entitled to protection by the law. To get current information contact EEOC, 800-669-3362. We solicit questions, comments and information relating to the above.

PARENTS/GRANDPARENTS. Without question, they are our primary support and probably our sole support. However, only a few who have an interest in disabled people or disabling conditions are dedicated enough to send us a note, clippings or a few dollars. When Robert decided to get more involved in this paper a few years ago we decided to go ahead based on support from a grandmother, Joan Meeks, and a grandfather, Andrew Guagenti, who not only showed more concern than most parents, but as much concern as a human can dedicate to one cause. They have continued with their support and we have continued to put out the paper without feeling that we are infringed upon. Many reading this without ever contributing to the costs are just like us--busy and not sufficiently motivated to put a couple of dollars or a fiver in an envelope for that purpose. Some months we don't receive anything so we can easily record all donations. We now place a numerical code on each label with the first digit identifying the year received such as 7, followed by the month (5) and the amount (usually $5). If the partner has sent money before we just put a + sign after the numbers. If the letter or issue you receive after sending money doesn't comply with the preceding procedure, drop us a postcard and you will get one right back providing the corrective actions taken. We noticed that Irv Shapell (publisher of the Woodbine House Parents Guide, says they have lots of contacts from parents and grandparents in his letter in the centerfold of their Special Needs Spring Catalog (808-843-7323 or 6510 Bells Mills Road, Bethesda, MD 20817). You will be very pleased when you get the catalog regardless of whether you are just a regular parent, a grandparent, or someone else concerned about disabled people.

FLUORIDATION. A couple of issues ago, I received a book by a dentist (Dr. Judd) who after a letter to him and a couple of phone calls I found identified FLUORIDATION: THE GREAT DILEMMA as the book which contained the reference in Chapter 13 on DS which I had challenged. On page 212 there is the statement that fluoride has the potential for transmitting malformation to offspring of man and cites I. F. Rapaport, MD ('57 and '60). The book (published in '78) questions why Rapaport's research on DS has never been refuted by redoing his work. It also states that in 1974 Rapaport's findings were challenged by a study of DS in Massachusetts; the source of that study wasn't identified, but I read some material on DS and fluoridation by Sig Pueschel, MD about that time so I will send this draft to Sig and ask that he let us print some of his views on this issue. If his initial response is timely, it will follow. Those of you who have good library contacts and read the book will note the Index under DS refers readers to the stigmatic term that stymied decent care of people with DS for more than a century.

EARLY HISTORY OF THE DS CONGRESS. In our first episode we took you to the point where Dr. Richard Koch had agreed to function s program Chairman of the first DS parent-professional international conference. Generally, there was a groundswell of support from all over the continent, the two Mexican DS groups pledged their continued support as did our Canadian allies. We did lose the support of my personal friend and collaborator, Albert Rosanova, M.D., and others from the most ambitious Chicago DS support group and perhaps many anti-abortionists who were strong supports due to the Supreme Court decision that the centuries old practices were not proper and seemingly that prospective mothers had a right to do what they wanted with the life they had been entrusted with. It isn't unlikely that some of my readers for a year or so had concluded that I wasn't neutral on the traumatic issue and terminated their support from both sides. Dr. Rosanova wrote in the house organ of his group that I had sold out when we announced that the Federal government had agreed to partially fund our conference.

PERSONAL PROFILES. The Arc of the U.S. seeks them for developmentally disabled (or at least challenged) people. Robert worked his up with my help and sent it in. They intend to use them for educational purposes via the media and the Congress. Robert is scheduled to present at the Annual SD Arc, AAMR & People First Conference and will provide a copy to anyone interested.

TEEN-AGE GIRLS NUTRITION. In some cases the psychological problems associated with the bad habits are devastating so we seek clippings, articles, etc., that might promote improvement for some. Special attention will be given to anorexia/bulimia.

MENSTRUATION. Due to the questions about DS incidence increasing greatly with age this has been an enticing issue. Vol. 151 of SCIENCE NEWS devoted two full pages to the subject. We seek articles/comments that we can reprint on this subject.

COUNTERFEIT HUMAN CHROMOSOMES. Wade Raush has an article on this new procedure in the 4-4-97 SCIENCE. These HAC's (human artificial chromosomes) could help settle what centromeres are made of. Any gene sandwiched between the synthesized satellite arrays and telormeres will, in theory, behave like a gene on a regular chromosome.

DYRK GENE LINKED TO DS This has been extracted from an article by Elizabeth Pennisi in the 20 December SCIENCE. Song and Kurmit linked DYRK to DS mental symptoms as it is the only extra genetic material found in some people with DS; there is critical region that contains about 50 genes. Another group from Berkeley also drew similar conclusions. Another chromosome 21 gene laying outside the internal 180 - kilobase region seems to lead to learning problems. One of the Berkeley scientists, Desmond Smith, says these findings will make for a very exciting next few months.

PEOPLE FIRST. Robert became aware of this organization at the National Arc meeting in San Antonio, but wasn't able to join. A few years later, he started a similar group here and when the SD Arc hired one of his former coaches to get People First going, the organization Robert formed was disbanded in favor of People First. Robert didn't join at first, but he now is a member and likes it, and will attempt to help any disabled person interested in organizing a local chapter. Five other members and Aberdeen PF Advisor Deb Silvernagel attended the annual SD meeting as well as Robert. SD People First provides members a well thought out brochure on how to have a successful chapter. The first sheet lists these ten broad guides and each has a separate more detailed page providing specifics:

  1. Make sure that everyone knows when and where the meetings are.
  2. Make sure the advisor knows what their role is and what they are supposed to do.
  3. Always have officer's meetings.
  4. Find ways to get everyone involved.
  5. Make sure everyone understands what goes on in the meetings and what is being talked about.
  6. Make sure that the discussions are REAL and IMPORTANT to the members during the meeting.
  7. Make a three to six (3-6) month plan and establish goals for your group.
  8. Make your meetings FUN!
  9. Face any problems your group is having 'head on'.
  10. Call or write to the State Office for ideas and suggestions.
UT NUTRITION CLINIC. For several years we have encouraged readers to send for their prospective subject packet. They certainly welcome subjects who have DS. Robert has been a research subject in it for half a dozen years. To obtain background information and an application, write to them at T6-12 Biochemical Institute, University of Texas, Austin, TX 78712-1096. Robert's current intake necessary to correct deficiencies the clinic found as a result of analysis of his blood are: 1500 mg. total calcium with 750 mg. magnesium daily in divided doses; 25 mg. vitamin B2 morning and evening,; 400 mg. folic acid daily; and 420 mg. phosphatidyl choline daily. He is also to decrease fat consumption and take a tablespoon of olive oil daily to obtain more oleic acid, along with decreasing other forms of fats and oils. The analysis is free and you might not be able to get Medicare/Medicaid or your insurance to pay for drawing the blood or air expressing it to Texas (each cost less than $10 for Robert; Medicare paid to have the blood drawn).

ALS, PD, & DS. Amyotrophic lateral sclerosis and Parkinson's disease may have a strong relationship to DS and other disabilities relating to malfunction of the human brain. Guam has the highest incidence of these diseases in the world. They may actually be one disease with common expressions of symptoms. Lytico is the name used for ALS in Guam and they call Parkensonism, Bodig. Environmental studies where the incidence of these maladies is high in the western Pacific showed high levels of aluminum, manganese, and iron, but low amounts of calcium, magnesium, and zinc in the soil and water.
There are many books on these subjects so consider asking a conscientious librarian to attempt to get a few for you through inter-library loan. BABIES/TODDLERS/NEWSWEEK. The Spring/Summer NEWSWEEK should be read by all able to. If the $3.50 price is a problem ask your librarian to reserve it for you. The NEWSWEEK prexy gives special credit to Rob Reiner's, enthusiasm for early childhood development. Only 3 pages are used for "Your Baby Has a Problem" and only a few paragraphs relate to DS statistics on incidence and abortion such as "10% who know their babies have DS go on to have them anyway;" "in the 1970's with parents who insisted on taking their DS babies home;" "It is possible, in short, for a DS child to hold a job and live at least a version of the sort of life that every parent dreams of from the moment he or she hears the fateful news that a child has a problem....A normal life." Please pass on the following message to couples capable of having progeny. "The parents of a grown man with DS wants the world to know that he has added much to extended family values and joy. He has made their 'golden years' rewarding and they recommend that prospective parents not hesitate to give a new life a chance even if the child may not have a normal life."

DR. VINNARD/STUTTERING. This retired surgeon has sent us a premier original article that will be featured in our next issue. He was our "stuttering" editor for a couple of years and then published the quality journal on stuttering, QUO VADIS. Tell all you know who stutter to get a copy of our next issue.

RECEIPT/PREMIUM. All who now send us money will receive in the next first class mail in a 4" x 6" manila envelope an ultra thin calculator containing our preferred address with the message "A World of Thanks." Following your name on the address label will be numbers reflecting the year, month and amount you sent such as 765. Don't wait! This offer is limited to the number of calculators we have.

WHO & HOW MANY ARE DISABLED? A recent estimate by the federal government indicates that over 49 million Americans have disabilities that would come within the definition of the American Disability Act.
Disability is defined as "difficulty in performing one or more functions or daily living activities or one or more socially defined roles or tasks."
Over 24 million people are severely disabled with the others less disabled.
Using the above definition, it would seem everybody is disabled--certainly more than twice those who are severely disabled. In any case, this publication is mostly concerned with people considered totally and permanently disabled by SSA. If subscribers want information on less disabling conditions, we will produce articles on them, but need help!

NEWSLETTER RELATING TO DS/ALZHEIMER'S DISEASE. The National Association for the Dually Diagnosed (NADD) publishes it. It costs $5 for non-members and since it is a professional production and well established, anyone who might be interested in the captioned subject should consider it. NADD members can get it and all NADD educational and training products at 20% discount. The late Frank Menslosino, MD was one of several psychiatrists I considered friends back in '72 when we started the effort to internationalize DS research efforts. I collaborated with others who established NADD and was one of the original members. It keeps expanding and I remain proud of it. Call 800-331-5362 or write 110 Prince St., Kingston, NY 12401 and ask for their Product Publications Catalog, which has all their pertinent information.

HOW TO WORK WITH PEOPLE WITH DISABILITIES. For practical help working with disabled people, contact Executive Diversity Services. The firm publishes a brochure called "Tips for Working with People with Disabilities." Write to: 675 South Lane St., Suite 305, Seattle, WA 98104.

SO FAR, ARE YOU PROUD OF YOUR SCORE? As Grantland Rice warned: "For when the One Great Scorer comes to write against your name, He marks not that you won or lost--but how you played the game." You can still improve your score; get started!

CORRESPONDENCE CORNER. The following letter was received from Renae Bunker:
"Hello Robert and George, I'm Renae Bunder and I just talked to you on the phone last week. Please send us your newsletter-paper as we enjoy reading all we can on Down syndrome, which our 10 month old son Lucas (6-26-96) has, and Cerebral Palsy, which our 2-½ year old son Brady (7-15-94) has."
"As I told you on the phone, we live in a rural area, with our pediatrician being 90 miles away in Mitchell; Specialty Doctors are in Sioux Falls and we also go to Shriner's Hospital in Minneapolis 2 - 3 times a year. If any of your other readers are interested in contact with other families, we would love the opportunity to meet and share any concerns, progresses, and support with them. Thank you." Russ & Renae Bunder, HCR5, Box 10A, Reliance, SD 57569, tel. 605-473-9279.

MARRIAGE. We have had developmentally delayed friends who have been married for 20 plus years and seem to get along well in the community. However, since there aren't many other such married couples, it looks like most people drawing SSI prefer remaining single.

DRIVER'S LICENSES. Generally, both a written and a driving test must be passed. One of our associates in Utah (Amy Meeks) has passed the written test, which is more than Robert has even attempted. He is going to ask his Adult Basic Education instructor if he can study the SD Driver's Manual to facilitate his passing the examination next fall.

BASKETBALL. It's a good game and Robert plays on the ATC team. They traveled to the Redfield State School, but got beat and their competition was too tough also in the SD Special Olympic Basketball Tourney. Robert supports the Lakers in the NBA Tourney.

PREMIUMS/RECEIPTS. There are only a few of us putting out this paper so we don't inform subscribers of due dates and try not to beg. Fortunately, some subscribers send more than $5 so we credit them with added years or add other addresses they provide to our mailing list. We will send a copy of any issue to anyone anywhere for $1 for the first address and $.50 for each additional address.

CLIPPINGS, OPINIONS, PERSONAL NARRATIVES, ETC. We solicit all types of letters, notes and articles. Even lists of articles/subjects you would like to see given higher priority would be gratefully appreciated.

(Gender corrected)

When you get what you want in your struggle for self
And the world makes you king for a day,
Just go to the mirror and look at yourself,
And see what that person has to say.

For it isn't your father or mother or spouse
Whose judgment upon you must pass;
The person whose verdict counts most in your life
Is the one staring back from the glass.

You my be like Jack Horner and chisel a plum
And think you're a wonderful person
But the person in the glass says you're only a bum
If you can't look yourself straight in the eye.

Here's the person to please, never mind all the rest,
For she/he's with you clear up to the end.
And you've passed your most dangerous, difficult test
If the person in the glass is your friend.

You may fool the whole world down the pathway of years
And get pals on the back as your pass,
But your final reward will be heartaches and tears
If you've cheated the person in the glass.
(Author Unknown)

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

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  Revised: June 15, 1998.