|People with Special Needs Down Syndrome Report||
|VOL. 18 #2||SSN0731-566X||May 1998|
ROBERT JOHNSON. When I started putting out a newsletter for supporters of disabled people, my thoughts were first that I would find and report on significant facts relating to the broad population and second that Robert was just one in millions, but I could share most of his experiences and I would report them to provide an example to others. Some of his current efforts are reflected in letters from the publisher of WHO'S WHO IN THE MIDWEST who sent him a bibliographic sketch to review which he did with the notation that he is now Vice President of the Aberdeen People First. His biographic sketch will be among the 20,000 in the 26th Edition. We think this is significant as it is possible that Marquis WHO'S WHO will establish a series on disabled people which likely would have an impact on world human relations (121 Chanlon Road, New Providence, NJ 07474). He also received a response from the Bank of North America informing him they had forwarded his letter to the N.D. Housing Finance Agency, which may turn out to be an early step in obtaining a first-time home buyer mortgage for him at 6% interest on a new side-by-side duplex in Devils Lake, ND. He doesn't initiate all the activities he participates in, but his views are very important to my wife and me. She has said she won't leave Aberdeen without Robert! I think the major thoughts behind that sentiment is he's fun to have around and he won't get the quality of support from others that he gets from his family.
VICTOR BISHOP. He is now Associate Editor. In our next issue we will feature his biographical sketch, and with the sketch there will be his Email address. He will be handling our Email and Internet activities. He has a Web Site and has in mind printing growth curves for children and infants with Down syndrome. He has a one-year old son named Emmanuel, who has DS, and is photogenic.
ANOTHER NAIL IN THE COFFIN. We thought Robert would profit from post high school education and for several years we attempted to find schools. No college within commuting distance was deviating from the archaic system of college entrance and like so many other disabled people he had problems with traditional academics so any written tests likely would be just another kick in the behind for him. Anyhow, the University of North Dakota initiated a program called "College For Kids" and we made known to officials that he had DS and if for any reason they wanted to remove him from the program we could and would do so immediately. To me it seemed like a typical matriculation and he had a wide variety of courses to chose from. His nephew Ted Brekken attended too and he took aerospace and scientific courses exclusively and is now an advanced engineering student at the University of Minnesota. One of the courses Robert liked was astronomy; since the credentials of Professor Kraus were impeccable we posed no objections. The professor became a star in Robert's world and Robert learned a lot of astronomy. After his death we learned that Kraus also chaired the Physics Department and was associate Dean of the College of Arts and Sciences, coordinated the Honors Program, and for many years was a principal adviser to premedical students. He previously had been chairman of the U.S.D. Physics Department. Robert retained much of what he learned about Astronomy from Professor Kraus. However, nobody seemed to believe Robert could handle the typical university curriculum and that is the basis for the caption. The Devils Lake UND Branch has agreed that traditional entry requirements can be set aside in his case so it is possible he can still enter college. We want to thank all of his teachers who like Professor Olen Kraus have given him their best efforts.
APOE-4 BLOOD TEST RECOMMENDED FOR ADULTS WITH DS. It could help patients get experimental therapy and help families transfer legal responsibilities and prepare emotionally. A 2-19-98 USA TODAY article says the preceding about an article in NEJM.
DOWN SYNDROME AND SAN DIEGO. Get a program for their May 26-30 Annual AAMR meeting by calling 800-424-3688. Although it was a century before AAMD was founded and that the Nation proclaimed: "We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain inalienable rights; that among them are life, liberty, and the pursuit of happiness." That is the theme of the conference and is something the organization has stood for these last 122 years. I had been a student member at UND briefly, but when Robert was born in 1972 I rejoined AAMR partially because my friend Al Rosonova, M.D. had addressed the 1972 conference on the Possible Virus Etiology of DS. Also, a former North Dakotan who has never lost the pioneer spirit, Dick Koch, M.D. was the AAMR President that year. Anyhow, the AAMR Executive Conference Manager and others of the staff became friends and I organized the DS Special Interest Group and acted as facilitator for the DS programs for several years at AAMR meetings. I enjoyed them all and the family never noticeably missed the money; I paid my way! You probably would enjoy all the programs in San Diego as well as the city, state and climate, but following are some of the programs relating to DS you should consider: Wednesday 4:30 p.m. Literacy/Mitochondrial Oxidative Phosphorylation; Thursday 10 a.m. Overweight Prevalence, Nutrition; 1:45p.m. Aging and Dementia of Adults with Down Syndrome: What Measures of Performance Can Tell Us; Prevalence of Chronic Medical Conditions; 3:15 p.m. Early Intervention/Correlation of Surgical, Emotional and Cognitive Development; 4;45 p.m. Behavior of Children With DS. Although not listed as a DS program on May 30 A.M. Dr. Allen Crocker will moderate an alternative therapy session with Dr. Capone speaking on Piracetam and Kent MacLeod telling about MSB Plus. Activities that require extra fees such as the dinner and dance and the Tijuana shopping and lunch spree sound good. Say at least "hello" to Alan Abeson of the Arc of the U.S. and Frank Murphy of NDSC early in the conference either personally or with a note on the communications facilitating bulletin board.
BEST WAY TO TEACH READING. My impression is to start very early although with a baby the effort probably is better described as teaching an appreciation for language (a never ending
endeavor). The next stage to start is the mechanics of thought transfer which
typically involves "safety" words such as potty, in, out, stop, etc. Then, it is time for fun
and reading to the child stories along with telling of stories. While in the Panama
Canal Zone in 1960 our eldest son was 6 so we know quite a lot about the above stages
and were pleased. I spent quite a lot of effort while there on what seemed to be
essential objectives. The first was the isolation of human sounds (words) that
convey essential information. The closest previous effort to that time was Esperanto but it
became quickly apparent that the combination language by Dr. Zamenhof was too complicated.
However, I would still work with anyone interested in researching his efforts from
the turn of the last century to 1917 when he passed from this life. His
concept of using word roots common to many countries has merit. I thought a
universal language should be simple and not significantly related to an existing language or group of
languages. It would be used by international organizations or taught as a second
language throughout the world and international communication would improve
and world peace would be enhanced. My second interest was in developing "A First Dictionary;" I
circulated my drafts but received no feedback of a 1300 word second grade vocabulary
list, and other activities took precedence. I did write to Merrian-Webster and
encouraged them to publish a primary dictionary, speller, guide to pronunciation and
Over the past few decades there has been considerable support for phonics as the basic device with strong opposition to the whole word concept of teaching reading. In February '98 a newspaper article captioned "In Grand Forks Why Can Johnny Read?" by Doreen Yellow Bird, caught my eye. She says, Grand Forks schools integrates phonics and whole language. Both my wife and I attended school in Grand Forks and Doreen commented on a first grade chart pull down that probably was a take off of the Dick and Jane texts. We agreed that at least sixty years ago students in Grand Forks were being taught both systems. She quoted teacher Becky Trapell as saying: "How would you sound out said? By bringing together meaning the student will likely figure out the word." She says that being immersed in the written language ends up with literacy being a memorization process. Opponents of phonics contend children taught to rely on phonics misunderstand what reading is all about and young children should not sit with a deck of flash cards for extended time periods to drill the facts of phonics into their minds. U. S. NEWS AND WORLD REPORT of 3-30-98 reported that experts convened by the National Research Council recently stated the answer is a combination of the two. Students score well above the national average in reading and the ACT test. They score about 15% higher than the National average on the California Test of Basic Skills. This will be a continuing subject so please let us have your views on how to provide literacy to students including those who are disabled.
MY BABY HAS DS. The October '97 PARENTS magazine has a page called "Can you help?" which provides 7 suggestions to a mother with a six year old son and another baby son with DS. Some providing information are well known mothers of children with DS, but all suggestions seemed appropriate as was the information on NDSS and NDSC.
PREGNANT WITH A BABY WITH DS OR SPINA BIFIDA.
The captioned article is in the August '97 REDBOOK
on pages 84 - 87 with the conclusion on Page 110, but is actually titled
I'll Never Regret." It is about potential mothers carrying a baby with a
or life-threatening birth defect. The author, Mary Ellin Barrett, quotes a
counselor at Johns Hopkins as saying 60 to 70% decide to abort. The first
case study is
about a beautiful woman and little girl twins shown on Page 84. The
mother is quoted
as saying she has fallen madly in love with the twins, but I would say if
like the 60 to 70% mentioned earlier many of whom feel "put upon" she would
loved the twins, but perhaps not so madly. She says the moment she decided
the babies a sense of peace came over her.
The second case involved spina bifida. The third case involved a special teacher who already had a baby daughter and she made plans to put the forthcoming child up for adoption. She is quoted as never feeling guilty about considering adoption, but there hasn't been a minute when she has regretted keeping Susan. When she looked at Susan she says to herself: "I'm lucky and grateful."
PRENATAL BIRTHING CONSIDERATIONS. It seems to every potential mother before she enters the third decade of life should consider the possibility of carrying a defective or disabled child. A helpful article is in the February '98 MENTAL RETARDATION. You can request reprints from Dr. David Helm, Institute for Community Inclusion, Children's Hospital, 300 Langwood Avenue, Boston, MA 02115. It relates to ten mothers who had received a prenatal diagnosis of DS and decided to give birth. They provided ten items of advice which all appear logical but considering the life-long implications, it seems to me the Federal Government or some humanitarian think group should fine-tune a list of considerations and advise for such a momentous decision. Their final bit of advice is "Listen to your inner voice, be honest with yourself, and trust yourself." Until now, that has been what has happened, but both prospective parents and society should be provided as many facts as can be documented on the likely whole life experience of the child, the parents and the world.
ULTRASONOGRAPHIC DATING IMPROVES DS SCREENING. See American Journal Obstetrics Gynecological '97, 176: 1056-61 (through ILL if you are advising someone who intends to be screened for DS). It appears to be more efficient according to the authors.
EARLY EASY TEST FOR LIKELY DS. CNN Headline News on Sunday 4-5-98 said the blood test can be used early. It isn't definitive and amniocentesis or other tests would be needed to more positively indicate if the fetus likely has DS.
DISPOSAL OF FETUSES. One of our local subscribers, S.D. State Senator Jim Lawler, is quoted in an Associated Press article saying HB1161 is needed to prevent the disposal of fetuses in garbage disposals, burn barrels and along roadsides. Some opponents to the proposed law says it would make them think before making a major emotional decision and they shouldn't have to discuss disposal methods. Donation of tissues and organs of miscarried fetuses would be allowed with the mother's permission. This was enacted effective 7-1-98.
Peggy Quinn authored this '98 book. She has taught social work at the
of Texas (Arlington) for seven years. She organizes the material in
order (the sub-title is A LIFESPAN APPROACH
) so I will report her DS comments, which she reports in eight places. Her
comments are quite complete and well referenced. Our Associate Editor,
will be very interested in her next DS section which generally will apply
to Emmanuel. Robert started walking at 13 months once we implemented Dr.
Dan Skandera's suggestion
on encouraging cruising. He skipped crawling. Dr. Quinn says that he (she
between referring to she and he) likely will walk independently at age two
or at least be moving toward that goal.
I was a little surprised that she started her DS "Preschool" article by noting that families of children with DS seem to be distinct from other families including a disability. Her next paragraph recognizes that children with DS follow the same developmental trajectory as other children. However, she notes that DS physical development tends to lag.
Her treatment of "School Age" children with DS is also helpful but perhaps she could have said more about death and loss as I suspect such conditions are very difficult for a child with DS to comprehend. She notes "failures" in transition planning in her "Adolescence" comments. She quotes Selikowitz here on grieving, which should have been done in the "School Age" section, in my opinion. I liked her "Young Adult" group coverage; due to attainment of legal "majority" as this is a very significant stage in life. However, she doesn't write about guardianship until her "Middle Adult" section; I think it should go into "Adolescence."
Robert fits into the "Young Adult" category, which she starts by stating they can expect to live a long and healthy life. One of the things I learned in her "Middle Adult" section on DS is the existence of a DS Partnership organization which along with the Arc is a source of information. Conversely, she doesn't mention NDSS which already is a major DS international influence or any of the other autonomous or semi-autonomous national, regional and metropolitan DS support organizations (except for NDSC). Generally, the appendixes and references are superb. We highly recommend the book for both personal and academic study. Contact SAGE, 2455 Teller Road, Thousand Oaks, CA 91320 or Email: email@example.com for information. I obtained a copy through the Presentation College Library; Robert successfully completed a Social Work course at that college.
FEDERAL TAX POLICY FOR ATC CLIENTS.
A recent ATC letter says: "We received a ruling on November 29, 1989,
that the income received by the individuals served is not subject to
Tax, but is includable in the gross income of the recipient and is subject
reporting requirements under Code Section 6041. For further information
Section 6041, please contact your tax advisor."
"On December 9, 1962, the Incentive Therapy Program (Public Law 85-574) went into effect. Section 2 of the law authorizes the utilization of the services of patients and members in Veterans Administration (VA) hospitals and domicilliaries for therapeutic and rehabilitative purposes without conferring an employee status upon them. Since the services of the individuals of ATC are of the same nature - rehabilitative, the individuals come under the same classification as the VA patients and members."
"Revenue ruling 65-18 states 'Since an employer-employee relationship does not exist between the hospitals and the individuals involved, the taxes imposed by the Federal Insurance Contributors Act (FICA, Social Security, Medicare Taxes) are not applicable with respect to the remuneration which is paid these individuals for their services.' This would apply to ATC individuals also, since they are in the same non-employee class."
Robert filed his Form 1040 and asked IRS to complete the schedules for disability and earned income credits.
ROBERT ISN'T ALWAYS A GREAT DEPORTMENT MODEL.
Recently, we got a letter from the ATC therapeutic Recreation Supervisor,
Thum, providing details on the State Special Olympic Basketball Tournament,
6 and 7 in Mitchell, SD. Naturally, there are many opportunities for
this bus trip and two nights at the motel. To minimize confusion and
problems, all clients
must be on their best behavior, but for some (like Robert) that always
Last year he showed his oppositionality and was removed from the game and
off the team. He quickly recognized the fun he would be missing and the
fact that he wasn't
the coach so Johna and the other two coaches entered into the following
with Robert, which all four signed and have adhered to:
"I will at all times be a model of good sportsmanship by:
a) Voicing only positive comments to my teammates, coaches, and opponents. (i.e. I will not taunt other players or coaches).
b) Following rules set by my coaches (i.e. Coming out of the games when asked) as well as Special Olympic rules.
c) Controlling my temper if we are playing poorly or lose the game (i.e. Congratulating the other team after the game)."
"If Robert should show signs of breaking this agreement he will be warned and advised to remember this agreed upon and signed contract. Coaches have the right to terminate Robert's participation in Special Olympics at anytime Robert displays a flagrant violation of this contract."
ATC BOARD OF DIRECTORS. They have had many excellent members. Among them was Dr. Albin Janusz, who was one of the best surgeons in this community. Many of the ATC clients were his patients; they and the entire community mourn his death. Not long before he died he introduced himself to me at the medical library of our only hospital. We have too few humanitarians in our society who conscientiously care for the disabled.
SD SPECIAL EDUCATION FUND CHANGES. SB 120 has been passed by the State Senate and soon will be voted on in the House. One of the goals is to require that all special education costs be reported in the same way. There will likely be fines for failure to provide actual expenses by certain dates. All districts will be required to set the same tax levy or face a reduction in State funds.
ROBERT'S FOLLICULITIS. For fifteen or so years we have been reporting on this as it is a fairly common problem of people with DS. Now we apply Greenstone 1% Clindamycin phosphate topical solution twice daily to his legs and buttocks. His condition has improved.
DR. JOYCE STRAND'S ADAPTIVE PHYSICAL EDUCATION/DOUG BULL AND POWER LIFTING. We hope to have continuing information on such programs. The ATC takes 15 or so clients to the Northern State University gym once a week for basketball, volleyball, bocci ball, etc. Dr. Strand's "coaching people with disabilities" class works with the ATC clients and recreation staff. NSU also provides Robert power lifting training. His coach, Doug Bull, said in a recent letter: "His strength level continues to increase at a rapid rate; he bench pressed 185 pounds today. Doug is the Head Strength and Conditioning Coach.
WORLD HEALTH ORGANIZATION. Former Norwegian Prime Minister Gro Bruntland will succeed Dr. Hersher Nakajima from Japan in July as Director-General. I believe I visited with her in her home a decade and a half ago when I visited Norway, but in our next issue I will check my archives and report on that visit. She was the official in charge of programs for the disabled at that time. I visited several Norwegian schools/institutions for the disabled and was disappointed to find that the family home for such children was largely forsaken.
THE CHILDREN'S MEDICAL LIBRARY. This non-profit clearinghouse supplements medical personnel in providing specific information relating to children with special health concerns. The library is open about 40 hours weekly, but information can also be obtained by phone or Email. Urgent requests are handled first but usually all are acted on within a day or so. It is located in Sioux Falls, SD (3100 E 49th St., Sioux Falls, SD 57103), Tel. no. 1-888-761-KIDS
THREE FREE PUBLICATIONS I TAUT FOLLOW: CLEANLINESS FACTS
is published by the Soap and Detergent Association, 475 Park Avenue S.,
NY 10016. Drop them a 20 cent postcard and ask that they add your name to
THE BULLETIN OF THE NATIONAL SCIENCE FOUNDATION should be of value, the price is right (free). Write to the National Science Foundation, Room P35, Arlington, VA 22230.
NEWS OF NORWAY is published by the Norwegian Embassy (2720 - 34th Street NW, Washington, DC 20008-2714). Send a postcard asking that your address be added to their mailing list.
THE NEWSPAPER OF THE NON-PROFIT WORLD. That's their sub-title; THE CHRONICLE OF PHILANTHROPY, is the actual title. I'm looking at issue #8 of Volume 10. I have been reading it off and on along with the CHRONICLE OF HIGHER EDUCATION, which publishes it. Subscriptions are $67.50 (1255 23rd Street NW, Washington, DC 20037). The first article reports that Rice Krispies will bear messages targeting children ages zero to three intended to make more parents aware of the importance of the first three years of life. The California Health Care Foundation (Oakland) in issue 9 v. 10 reports that they started "granting" last year to the tune of $38 million from their $1700 million. Their concerns are: aging, disabilities and health. Of course, it provides details of who pays. If you are "following" grants it probably would be worthwhile. I haven't subscribed, but have found good information in the publications. I recommend it to all and specifically hope that someone willing to devote some time and energy coordinates such information for those with interest. The only money we take out of our proceeds goes for reproduction and some of the mailing costs so we certainly are non-profit.
EARLY INTERVENTION. That's the title of the free Brookes booklet (P. O. Box 10624, Baltimore, MD 21285-0624 or 800-638-3775). Let them know of your special concerns. They are celebrating their 20th year and we have endorsed them all that time. They publish books relating to all disabilities.
SOCIAL SECURITY BENEFITS FOR DISABLED PEOPLE. The problematical word is disabled, but a free call to 800-772-1213 will enable you to set up an appointment to obtain help. Some conditions allow SSA to presume disability such as Down syndrome or blindness and support people should call the above number and assure that such individuals be considered for benefits. If SSA later decides the person doesn't qualify the person doesn't have to pay back any benefits paid (check page 8 of SSA Pub #05-10026 of March '97). If the apparently disabled person has a job that pays $500 or more which SSA considers substantial work he may not qualify. Also, organizations like the Knight Ridder Tribune Newservice periodically produces columns such as "Answers to Questions About Social Security" and you could check with the newspaper to see if they subscribe to such a service or otherwise publish public service messages from SSA. There are many benefits to SSA in addition to the monthly payments. An infant born blind or with Down syndrome or other disabling condition shouldn't be deprived of SSA benefits.
NDSS ADVISORY COMMITTEE. They are seeking members and will meet July 9 - 11 at Lake Lawn Lodge in Delavon, WI. For applications or conference information (13 or older) write 666 Broadway, NY, NY 16012-2317. It will be fun and beneficial. The winter NEWS AND VIEWS should have "Good DS" precede the title.
THE COACH'S SON.
The book section of the April '98 READER'S DIGEST
is so titled. It is from ANOTHER SEASON
which is credited to Gene Stallings and Sally Cook. Gene is a football
I suspect Sally is the writer. Anyhow, it is worthwhile reading even if
have a pervasive interest in DS. He sounded like many "anticipating" first
fathers of a son. (Some time if I have the time and inclination, I will do
some research and
provide the background of names given to children who aren't what their
they would be). Gene didn't like the word Mongoloid when the physician
used it to
describe his first son 36 years ago, who with his wife had decided to call
the son Eugene
Clifton Stallings, the Third. The word "Mongoloid" made Gene think of
The article states in parenthesis that "(It wasn't until about five years
Down syndrome would replace Mongoloid as the accepted term)." Since I was
should be noted that the discard of the stigmatic word took about a decade,
a date and event is needed then the date the Library of Congress changed
headings should be used and naturally I'm pleased to have been the key
promoter of that
event although I had two senators, who like myself and Gene, had a son with
we dearly loved and were repulsed by the way society had treated the
for more than a century. Several physicians, including Mary Coleman, M.D.
the Library to change the terminology.
The mother Ruth Ann responded as I suspect most have done when informed; "that can't be true." Now doubt is put aside sooner as the karyotypes are read almost immediately. They decided that since he couldn't carry on the family name they would name him John Mark Stallings. (Perhaps because of the change in times, we told our other four children at birth that Robert had Down syndrome). The intense pressure to institutionalize the baby also seemed common for the period up to a couple of decades ago. A little later in the story Gene says: "I sensed that he needed me, and I was finding I needed him too."
Something I have recommended for years happened to the Stallings, and that was the birth of their third daughter. A year or two later he accepted the Head Football Coach position at Texas A & M when they hadn't won a championship in nine years. One of the more emotional parts of the section was the vignette of his assistant head coach Elmer Smith who developed a friendship with Johnny, (probably because he had a brother with DS). As often happens, the younger child becomes the model and that was how it was with Johnny and his younger sister. However, one of his older sisters taught him to walk. Gene reports that Johnny and his sisters were teaching him empathy. John learned to read when he was ten and it was at that time that Gene joined the Dallas Cowboys coaching staff. One positive statement: "Once he met someone, he never forgot his face or name" made me reflect and conclude that that facet also deserves research and study. Later, Gene returned to the University of Alabama as head coach and the team won the National Championship on New Year's Day 1993. The saga is completed when he retired among thoughts of John changing from a frail child to a man who was loved and valued by countless people and who had taught him so much about courage, empathy and being a father.
As I have done several times these past 25 years, I will send a copy of this issue to READER'S DIGEST and thank them for giving visibility to a person with DS. PEOPLE'S WEEKLY also has an article on Stalling in their Feb '98 issue.
OLYMPIC GOLD MEDAL DOESN'T ELUDE CFS SUFFERER. Michelle Akers plays soccer with gusto but CFS controlled her life most of the 90's. She hopes to start in the new pro soccer league. She got more CFS problems after the World Cup in China '91. She collapsed and was diagnosed with mononucleosis, Epstein-Barr virus, and finally chronic fatigue. She started on a diet endorsed by Dr. Paul Cheney and noticed a change within two weeks. The team doctor gave her two IV's of electrolyte replacement solution which together with the diet did the job, but doctor Jesse Stoff from Tucson put together a regimen and diet and supplements that allowed her to compete in the Olympics. She's 100% better, but still not totally healthy. She says don't ever give up. Life isn't a sprint, it's a marathon!
THE STRESS SYNDROME. This article is in the August '97 ESSENCE pages 38 and 42. Perhaps the most valuable information is the number for the CFIDS Association: 800-442-3437. The author didn't have "full-blown" CFS.
FREE DISABILITY SOLUTIONS. Each issue (every other month) has been tailored by Joan Medlen, R.D. who puts it out and she isn't trying to just fill the pages. She has two sons, one who has DS; you can make donations to offset some of the cost to The Enoch-Gelhard Foundation, and although Robert and I have made minuscule donations, we have never been solicited. She uses basic signs with Andy, and the first issue in '98 has one of the best articles on signing (by Clare Donovan) that I have read. Joan authored articles on DS weight management while in school and adolescence. Another DS mother, Mary Wilt, reviews a '96 book on Inclusion. Print your first name first showing how your label should look and send it to 92205 W Barbur Blvd. #119-179, Portland, OR 97219-5428.
THE SIMPLE LIVING GUIDE. The author, Janet Lukos, of this 450 page '97 book gave up a law career and publishes a quarterly newsletter on voluntary simplicity. She lives with her two children in Seattle (2319 N. 45th St., Box 149, Seattle, WA 98103). She says simple living is about living deliberately and since that is what I have done, I endorse the concept. The book is filled with personal narratives and lists resources that will provide inexpensive ways to do almost anything.
THE PERSONAL FENG SHUI MANUAL. This new book tells of the Chinese study of the power of the Earth and the energy of the Cosmos. The author practices traditional Chinese medicine in London"s Chinatown. The book is interesting, but much of the philosophy appears as superstition to me.
CHRONIC FATIGUE SYNDROME AND THE YEAST CONNECTION. I have talked a couple of times to the author of this '92 book, William Crook, M.D. and have read several of his previous books. He was a preventive medicine crusader. I should be able to provide facts on how to reach him if he still lives, in our next issue. He indicates under the title that the book is "A Get-Well Guide for People with this Often Misunderstood Illness - and Those Who Care For Them." He closes the segment on names which precedes the "acknowledgments" section with the thought that Fibromyalgia clearly resembles CFS. In his segment titled "CFS and Fibromyalgia" he cites four brothers whom he treated all infected by the same streptoccol germ who developed different manifestations and concludes the section with the observation that patients with SFS, SFIDS, M.E., FM and related disorders seem to develop distinctive diagnosis because their immune systems are disturbed. If he lives and is willing to comment, I specifically will ask for his thoughts now on the treatment measures suggested in the Postscript: "control the proliferation of the common yeast (Candida Albicans), limit or avoid sugar, corn syrup and other simple carbohydrates."
ILL. It looks like ill, but means almost the opposite. Probably there should
be a period
after each letter, but I strongly endorse this program that enables people
to get books and articles about any illness or anything else of interest.
It is the
acronym for Inter Library Loan and the three articles that follow were
free of charge due to the research library staff at the local library and
of Minnesota, which made the copies and sent them to me via Minitex Library
Network. I have spent hours in the University of Minnesota and just
finding a parking
space took more time than it did to identify these articles. It's a
but local procedures vary. I encourage you to confide in an easy to talk
to librarian and find out what it would cost for you to do a little
literature research. The
first article is "Basic Money, Counting Skills of Children with M.R.."
almost 26 years old and has few of these skills and fortunately hasn't
His mother, however, believes this deficiency is, and has been,
detrimental. See Research in Developmental Disabilities
, P. 185 - 201, May-June '96 if interested. Authors are Stith and Fishbein
requests go to Lara Stith, University of Cincinnati, Department of
376, Cincinnati, OH 45221-0376).
They used three research groups, those with DS, those with other MR, and normal first graders. The two retarded groups had far greater difficulties with the progressively reduced cognitive demanding tech and there with greater complexity. The authors contend that the practice of instruction on money to special students i s the same manner as normally developing students sometimes results in the special children trying to master arithmetic computation and knowledge of money simultaneously. The authors describe what they consider to be four major sources of error in the thinking of the students with DS relative to normally developing children. They contend that children with mental retardation should not be exposed to a coin curriculum in the same manner as normally developing children. They also describe the differences found in children with DS versus other retarded subjects. They deserve credit for recognizing that education generally hasn't been able to teach money counting to retarded children in fully inclusive classrooms. These 16 pages fill lots of voids on reasons why this is so and methods of doing the job right. The first subscriber with a 55 cent SASE gets our copy of this excellent paper.
HOW STUDENTS BORN IN THE '70'S WITH DS FARE. This 20 page article was developed by two Sydney educators who wrote a book on early intervention a decade ago. Get the article from the International Journal of Disability Development and Education, v. 43n1 p.75-79 '96. The program for children with DS at Macquare U established in '74 probably provided much of the data used. That program was based on the Seattle model developed by Hayden and Dmitriev. Although this is a rather thorough discussion of English literature about such children, the main source is sixty-six adolescence with DS born in NSW from '71 to '78. Sixty-six of the 87 families contacted returned a completed questionnaire. Most subjects lived at home with parents, but 9% lived in group homes. About 75% had been involved in early intervention. About 50% spent time in a segregated school. This article included considerable information on US and UK experiences with similar subjects. The authors state that many students with DS can acquire age-appropriate reading (but not mathematical) skills. Within the NSW sample parents of younger students were more optimistic about the future for the child. We will send our copy of this excellent study to the first subscriber who proposes a use for it. We are proud of the programs in the U.S. for children with disabilities.
AUDIOLOGIC ASSESSMENT OF CHILDREN WITH DS.
I have to admit that this article in the AMERICAN JOURNAL OF AUDIOLOGY
been reviewed except it illustrates the type of material that can be
inter-library loan. You can cite it as in Vol. 5 of the Journal
1059-08889/96/0501-0044 or just say it is on pages 44 - 52 of the March '96
issue. The author is Jack
Kile, Ph.D. of the University of Wisconsin - Oshkosh, Center for
Oshkosh, WI 54901. It came from one of the libraries (not identified) in
the Minitex network.
I have written on this subject for more than two decades, talked to a couple of dozen audiologists and traded letters with several of them; I have always expected more findings that I found. Dr. Kile hoped to present strategies in this article that might be useful in the audiologic assessment of children with DS. He says hearing test results should be interpreted so as to consider anomalies/differences, which include tendencies towards small dysplastic auricles and stenotic ear canals; skull differences, smaller nasopharynges and airways; and structural differences in the cochlea and/or brainstem pathways. He provided detailed discussion of each of the above and suggests some test modification. Research needs have been highlighted. In his final sentence he says these children are at risk for middle ear disease and hearing impairment; audiologic assessment should occur early (infancy) and frequently (4 - 6 month intervals), with use of amplification when appropriate.
In our Christmas issue, we gave details that have since changed. We
Robert took a $5,000 policy from Continental for $30.30 semi-annually.
want $45 and say that the $30.30 was for a pro-rated portion of the $45.
said Protective had quoted $159 for $100,000, but when they considered he
had DS they increased
the premium to $337. In March they agreed to sell only $50,000 worth of
on a ten-year term basis for $241 per year, which Robert decided to pass up
though it would leave some money for his estate during the next ten years.
the bills are paid he can leave a surplus to whomever he believes deserves
he has the capacity to change his will. However, he may make it to the
so he will send in $45 to Arc sponsored insurance for a half year and we
will keep checking.
ENGLISH DS BOWEL AND BLADDER CONTROL START. The 2-11-98 NURSING TIMES reports on a DS Association facilitated questionnaire sent to 5,000 people relating to DS children. The majority began training at two to three years of age and took from a few months to 5 years. The girls generally quit soiling at about two, but boys took another year. However, more boys than girls achieved bladder control by age three. There was a wide range for both types of control.
FIBROMYALGIA, CHRONIC FATIGUE, IMMUNE DYSFUNCTION. This is an emerging disorder and the world hasn't yet agreed on a description or name for the disease. We have contacted a doctor who has advertised that he treats Fibromyalgia, but we probably won't hear from him before our next issue. He is certified to do adult internal medicine by the American Osteopathic Association. Much of the following information comes from THE MESSENGER, which is physically much like our publication only it contains more pages. We are sending a draft of this article to John Warren, Editor, along with our February issue. Tina Harvey wrote Part I of a Section called "Research News;" she explains the immune system and the relationship and operation of it and the central nervous system. George Cameron-Caluori is primarily concerned with medical and legal aspects of chronic fatigue and similar disorders. He and associates are starting a newsletter for which a few issues will be free (410-246 Queen St., Ottawa, Ontario KIP 5E4 Canada). Daniel Caluu, M.D. tells how Gulf War Syndrome relates to FMS and CFS. There is much more including a pull-out section of 4 pages for clinicians treating Chronic Fatigue. If you can't pay the $40 membership fee, send what you can to the above address and ask John Warren to put you on the mailing list for as long as is proper. It seems to me that Mononucleosis (15 - 20 year olds) is much like the above condition although the Epstein-Barr virus has been labeled as the culprit.
PMS, A BIOLOGICALLY INDUCED CONDITION?
Dr. Peter J. Schmidt of the National Institute of Mental Health, finds that
bodies simply respond adversely to normal changes in estrogen and
in symptoms such as depression, fatigue, irritability and changes in
The discovery discounts the earlier belief that PMS is a psychiatric disorder. Experts say it also should inspire the development of drugs that will block the hormones' effect on the brain without affecting women's health or fertility.
The NEW ENGLAND JOURNAL OF MEDICINE (Jan. 1998) is credited by the 2-9-98 MENTAL HEALTH NEWS ALERT as the source of the foregoing.
PSYCHOTROPIC MEDICATIONS AND DEVELOPMENTAL DISABILITIES.
This new book is being sold by AAMR to members for $79, but if you don't
join you can buy it for $90. Call 301-604-1340. It has eight chapters of
material on 11 specific medications. It is edited by Dr. Reiss and Dr.
the Nisonger Center, Ohio State University.
In mid-March Robert received the January and February issue of EXCEPTIONAL HEALTH CARE edited by Theodore Kastner, M.D. He reviews the above book. He concludes the review with the statement that he was one of the co-authors of the Chapter on guidelines. His publication cuts across health care needs of people with developmental disabilities and is sponsored by Columbia University College of Physicians and Surgeons. It is mailed first class (45 Park Place S., Suite 275, Morristown, NJ 07960-9886). Dr. Kastner will present at San Diego (see page 2).
One Sunday afternoon near the end of March I visited with Robert, who was
and I went on to the library. I checked out some books including the new
by a science writer I respect, Gina Kolata. As is my practice with a book
new to me, I examined the index to see if Down syndrome is mentioned. It
Page 238 and the extracts that follow are from that page:
"The vast majority of genetic birth defects occur because an embryo ends up with too many chromosomes, or too few. Jacques Cohen, who is scientific director of assisted reproduction at the Institute of Reproductive Medicine and Science at St. Barnabas Hospital in Livingston, New Jersey, told me how often these problems, known as aneuploidy occur. 'The rates are staggering,' he said. As many as 40 to 50 percent of the eggs of women under age forty have one chromosome too many or one too few.' 'In older women, the rate is even higher, it may be nine out of ten eggs. That is why IVF (in vitro fertilization) is so inefficient and that's why older women don't become pregnant,' Cohen told me."
"These eggs with too many or too few chromosomes may be fertilized; similarly sperm with the wrong number of chromosomes may penetrate an egg and fertilize it. But the resulting embryos usually die almost immediately---the woman miscarries, often before she even knows she is pregnant. A very few such embryos survive to become fetuses and fewer will survive to birth, most often those fetuses with an extra copy of chromosome 21. These are the babies with Down syndrome."
She concludes this revelation with the thought that as progenitors of sperm and egg cells mature they divide repeatedly and develop into cells that have a chromosome too many or too few. I encourage you to read the entire book!
MULTIPLE SCLEROSIS TELECONFERENCES. More than 500 sites will carry them May 2, 9, and 16, 1998. Call 800 FIGHT-MS for details.
CFIDS, FIBROMYALGIA, POLYMYALGIA RHEUMATICA (PMR). All are "mystery" diseases to some people. Call 800-442-3437 and ask that their flyers, "Understanding CFIDS" and "CFIDS Educational Materials" be sent you to remove much of the mystery. I was reading the April MAYO CLINIC HEALTH LETTER when I read about PMR, which seems to fit the muscle aching and stiffness I have recently been confronted with. If I also get headaches, I will ask my physician to consider if I have giant cells in my arteries.
ND MEDICAID. The states manage Medicaid differently so it is prudent to inquire if you might be involved in the system in a different state. For years, we have contemplated relocation to North Dakota, but all our inquiries were fruitless until mid-March when we received a 4 page flyer describing their system. The statement that state law allows only a burial fund of up to $3,000 plus accrued interest seemed to stop us cold as Robert established several years ago irrevocable funeral trust funds that already exceed $3,000. The state has indicated his current program is adequate.
WHAT'S REALLY WRONG WITH YOU? That title should interest everyone, but in reality it relates to muscles. This book was published in 1996. The author is Thomas Griner, who was a technician with NASA and then took a chiropractic course. For more than 25 years he has referred and applied a unique system of muscle message. He makes several positive statements (that might not be accurate), such as the one on page 16, that CFS is an intensified form of hypoglycemia or abnormally low blood sugar followed by the one on page 125 that in CFS the overproduction of histamine creates an agitated depression, and a metabolic disturbance reduces the strength of the immune system along with the statement: "treatment of the suboccipitals muscles can correct the metabolic imbalance and restore a person to a healthy, energetic state." If interested and your librarian doesn't have the book, ask that a copy be loaned you through ILL from the Alexander Mitchell Library of Aberdeen, SD 57401.
CHRONIC MUSCLE PAIN SYNDROME.
Paul Davidson, M.D. wrote this book in '89; it was published by Villard
a Random House division. Basically, it reflects his 25 years of
what in those days we called Fibrositis and today probably would be CFIDS
He said that PMR and GCA are also forms of soft tissue rheumatism, but are
diseases (and not non inflammatory like Fibrosis) of unknown cause.
The "sed rate" (ESR) with fibrositis is normal as are X-ray studies, but PMP produces a high sed rate of 50 mm to 100 mm per hour and is treated with Prednisone where Prednisone has little or no effect on fibrositis.
I could fill pages with significant extracts, but the book seems like essential reading to anyone concerned with Fibromyalgia (probably synonymous with Fibrositis). If your librarian doesn't have it, ask that a copy be loaned to you through ILL from the Alexander Mitchell Library at 519 S. Kline St., Aberdeen, SD 57401.
BILLS, PAYMENT CODE, PREMIUMS, REBATE POLICY.
We don't send bills so check your label code which indicates the year
money is received
(digit of the year comes first, followed by the number of the month and
number of dollars). If there is no code on your label, our records
reflect no funds received. Robert sends a shirt pocket sized battery
powered calculator as a receipt
with the new code to all subscribers who don't indicate they don't want
have $500 in a separate CD requiring Robert's and my signatures which we
to rebate payments when we cease publication, minus $1 for every copy sent
every other month). Don't hesitate, send us something today!
|PEOPLE WITH SPECIAL NEEDS/DS REPORT||Non-Profit Organization|
|Northern State University||U. S. Postage Paid|
|School of Education, Box 850||Aberdeen, SD 57401|
|1200 S. Jay Street||Permit No. 77|
|Aberdeen, SD 57401-7198|
|Revised: December 15, 1998.|