|People with Special Needs Down Syndrome Report|
|VOL. 18 #5||ISSN 0731- 566X||December 1998|
UPPER VALLEY Arc (Grand Forks, ND). They had scheduled a DS Conference in '97, which was canceled due to the Flood of a Century. The sequel to that postponed conference was so successful that another "World Class" Conference has been scheduled this November 20. George plans on attending as he wants to hear Sig Pueschel, Paul Marchand, Lou Brown and others knowledgeable of "what was and what likely will be" speak, weather permitting.
KNIGHT RIDDER NEWSPAPERS. I used to work for the Grand Forks Herald, which is now one of this group of papers. I have been proud of the Herald for more than 60 years and enjoyed the article by Eric Adler titled: "I, Jim, Take You, Jodi." There is also an article titled "Testing for DS" in the 10-26-98 Herald, and an article titled "More Choosing To Go Through With Birth" by the same writer Carolyn Pairot and a two inch box on NDSC (of which I was the key founder), stating that it maintains a 24-hour hot line on DS (800-232-6372). Well, Jim and Jodi (after their marriage) still have their parents and lots of other support. Carolyn says there is a slight shift from choosing to end the pregnancy for women going through prenatal detection tests for DS. She also says about 60% of the babies with DS have some form of congenital heart disease. She cites Dr. Allen Crocker as stating higher expectations are making the big difference in the quality of life for people with DS; life expectancy is about 58 years.
PRENATAL TESTING. I have no position, and don't plan on fabricating one or commenting on those that exist except to inform readers that the NDSC statement (a modification and not the original) is on http://www.ndsccenter.org/resources/position1.php. We are pleased that WHO is interested in the subject as can be seen from their recent letter (which you can respond to if you feel strongly about this issue).
WHO (WORLD HEALTH ORGANIZATION) ON DS PRENATAL SCREENING. Although the following doesn't constitute a position they definitely have a great interest in the control of hereditary diseases. If you decide to obtain the report cited, remember it only represents the views of the experts noted and isn't WHO policy. The WHO response signed late in August follows:
"Thank you for your letter of 30 July 1998 addressed to our Director-General, Dr. G. H. Brundtland, on whose behalf I am replying."
"The World Health Organization does not have a formal position on antenatal screening for Down syndrome, or other genetic defects for that matter, since it is the prerogative of individual Member States to decide if and under what circumstances screening procedures are to be applied in the national health care system. The Organization has, however, convened a few years ago (in 1993) a meeting of experts in the field of genetics to discuss the control of hereditary diseases. The report of that meeting ('Control of hereditary diseases," WHO Technical Report Series No. 865, 1996) devotes a section to 'Antenatal screening and prenatal diagnosis.' A copy of this section plus the contents pages of the report are enclosed for your information. I trust you will find this useful."
AD & DS MAY HAVE BACTERIAL LINK. This was extracted from a mid-November AP article but it didn't mention DS. The basic research report was by Brian Balin from Alleghany University of the Health Sciences. The bacterium "chlamydia pneumoniae" was found in cells when AD is detected. We will send a copy of this article to Dr. Balin and ask him if this likely is true too for people with DS. The bacterium had to penetrate the blood-brain barrier and I remember how difficult Dr. Mary Coleman told me that was when Robert first entered her Brain Research Clinic. One AD expert, Zaren Khachaturian said it will be important to find out whether the bacteria set the stage for AD or whether Alzheimer's damaged brains allowed the bacteria in.
EXTRAORDINARY KIDS. This $11 book has five special needs kids on the cover; two have DS and the primary writer has a child with DS. It is published by Focus On The Family Publishing and the first publication on the recommended books and other resources list is by James Dobson. I'm partial to Mr. Dobson and have thought the book he co-edited with Dick Koch, M.D. in the early 70's is one of the best on the subject of disabled children and one that helped me a lot. God is cited a lot in the captioned new book, and I read the final paragraph in the "afterward" to Robert, which included the biblical verse Matthew 25:21 which the writers hope will apply to people with disabilities from their heavenly Father: "Well done, good and faithful servant!" I hope Robert continues to be people-minded and will be so recognized. The book received the Gold Medallion Book Award. I talked with one of the primary writers, Louise Tucker Jones, and she agreed that we could publish her address: (3812 NE 140th St., Edmonds, OK 73013) in case you want to write to her. Her son, Jay, is about 21 years of age and has heart trouble, but it seems to me some "light" post secondary education would be fun and helpful to him. Robert helped clear the driveway after our first blizzard of the season and I recognized him by saying "Well done, good and faithful partner." If you are a member of a support group consider asking Focus on the Family Publishing if you could work out a money making deal for the group by helping market this excellent book. I particularly like the captioned title and also appreciated the substitution on the outside cover of the word "limitation" for the fatalistic term "disabilities" and mentioned to Louise that there is some current controversy as to whether or not parents and guardians should have hoped (or hope) their child's DS can be cured. Let there be no doubt, I have seen many improvements relating to DS and although a cure for all those challenged with it isn't likely soon, it may come in my time and if so I will hail it. Also, I will admit to false pride before Robert was born and thought he would and should be an outstanding person in several aspects. And he is, but I know the Good Lord had a program of continuing challenges for all of us so perhaps I should have anticipated that my time to be taken down a peg or two was in order. Anyhow, I have never felt cheated or anything but "rewarded" by our last child.
DIVORCE AND DOWN SYNDROME. The Knight Ridder Tribune News wire carried a several hundred word column on this issue in September which we will send to all who provide a SASE.
We suspect most marriages involve disagreements and fortunately most can be resolved; a reasonably happy marriage makes life's problems easier to solve. If the current practice of listing DS as an approved disabling condition for SSI continues, the only question as to receipt of SSI for the child is the income of caregivers and at age 18 the child will get SSI regardless of that income. I would hope few people are so greedy that they would divorce in order to gain access to SSI. The article concludes with the hope that professionals can help establish a plan to consider long-term future developments. That sounds like crystal balling the likelihood of international fiscal events.
AGE-ASSOCIATED DIFFERENCES IN COGNITIVE ABILITIES IN ADULTS WITH DS/AGING AND DEMENTIA AMONG ADULTS WITH MR AND DS. These articles are found in TOPICS IN GERIATIC REHABILITATION 13(3) '98. The first mentioned article reports findings that suggest adults with DS have age-associated changes in cognitive functioning that are similar to those observed in adults without MR, but they experience them two decades earlier. They showed the classic aging pattern on the Wechsler Adult Intelligence Scale - Revised. The study showed adults with DS showed decline in functions measured by non-verbal or performance tests.
The second article is authored by five Ph.D's (one of whom was Henry Wisniewski, who also has an M.D. He is the Director of the New York State Institute for Basic Research in DD). They contend that genes on the portion of extra chromosome material the people with DS have are intimately involved in the control of some of the biologic mechanisms related to aging. They say that significant vulnerability to neurofibrillary pathology among adults with DS has been noted. They say that 45% of adults over 55 with DS probably have AD too. On pages 57-58 there is a differentiation between dementia and developmental aging.
MIDWEST REGIONAL DS GROUPS. One that isn't recognized widely as being equal to national organizations elsewhere is that of the DS Association of Greater Cincinnati. They publish the DS PRESS bimonthly. Purportedly, they serve only a nine county (three state) region, but their outreach goes much further. Their 18th annual meeting was scheduled/held October 13. Dr. Patterson is working with Jane Page-Steiner (the exec.) and others to establish goals for the next few years. In addition to Jane, there are four other members of the staff. In V. XIX #2 of their house organ DS PRESS, they have an excellent article by an attorney who (in part) was successful in having a federal district court rule the denial of health insurance to an employee's child with DS violated ADA. Another article reports research on parental verbal styles on young children with DS. Other articles reprinted are articles by Janet Lord, M.D. on walking for children with DS, helping disabled students get ready for life, ice skating by a 9 year old girl with DS, and an original article seeking research subjects for a study on what adults with DS know about being healthy. Of course, there was more. We are happy that we offered to turn our paper over to DSAGG a decade of two ago and they decided instead to develop DS PRESS into such an effective communicative device. There address is reprinted elsewhere here, but their phone number is 513-761-5400, Email: email@example.com and website: WWW.DSAGC.COM.
DNA UPDATE. This newsletter is published by the Department of Neurology at the Texas Tech University Health Sciences Center, 3601 4th Street, Lubbock, TX 79430. You can call 1-800-661-0968 or Email at firstname.lastname@example.org.
The Fall issue reiterated that 40% of Alzheimer's patients have APOE4 and that it is a risk factor for AD as is APOCI A. Azm has been found in AD brains at autopsy. The DNA Bank at Tech also has the AZM gene analyzed.
Dr. Shirley Poduslo is the Director of the DNA Bank. The UPDATE reports that dementia relates to many disorders involving memory loss including frontotemporal dementia. The first symptoms of frontotemporal dementia are behavioral and/or speech problems; loss of organizational skills may also occur, but memory loss usually comes later. In an article on memory it stated that the prefrontal cortex and the parahippocampal cortex are involved in memory storage, but it isn't known if they work together or whether they input into other brain areas such as the hippocampus. Another article says the hormone cartisol is elevated after a stressful event and may cause temporary memory loss.
GERD. We have written about gastroesophageal reflux disease because people with DS in medical emergency rooms with the heart pains are being checked for heart problems. Page 44 of the AMERICAN JOURNAL OF NURSING (V.98 #9). contains an article on this. The author recommends (1) avoiding esophageal irritants; (2) avoiding rest within three hours of eating and tight clothing around the waist; (3) Losing weight if obese, but eating frequent small meals.
VICTOR BISHOP. The following article and all those on pages 12 through 15 were submitted by him. In his "Down Syndrome Amongst Us" he shares his E-mail from Rabbi Canvasser and reprints the Rabbi's abbreviation of the word GOD throughout. We want to reiterate we are not sectarian and try not to offend anyone anywhere.
THE ROLE OF THE FAMILY IN EARLY THERAPEUTIC AND EDUCATIONAL INTERVENTION FOR CHILDREN WITH DOWN'S SYNDROME (Rivista Italiana del Disturbo Intellettivo, June 1998, Vol. 11, No. 1) by M. Skórczyñska and L. Sadowska is a research paper that followed 113 children with Down syndrome, between 1992 and 1996, in Warsaw, Poland and studied the influential factors and effectiveness of early therapeutic and educational intervention. The early stimulation program included the Vojta reflex locomotion method, the Castillo-Morales mouth and face regulation method, and a modified sensory integration program with visual stimulation with a pulsating white light. Donna Spiker in Early Intervention from a Developmental Perspective in Children with Down Syndrome. A Developmental Perspective (D. Cicchetti and M. Beeghly, Cambridge University Press, 1990) writes that "[a]lthough it is assumed that the amount and quality of parent involvement in early intervention activities with the infant is directly related to infant developmental progress, few studies have actually established the link empirically (Gibson & Fields, 1984). Although active parent involvement in early intervention programs has been generally hailed as beneficial and desirable, its widespread endorsement has been questioned recently depending on a number of factors that can affect the parent's ability of willingness for program involvement. The following socio-economic factors were examined in the Polish paper: urban/rural settings, marital status, number of children, income, living conditions, parent's age and education. Essential factors influencing the success of early intervention are two parent families, siblings, mature and well-educated parents and a stable income.
UTAH DS FOUNDATION/REGIONAL CENTER. We have advocated regional communication and treatment centers for some time. We have mentioned this organization favorably and we now want to clearly endorse it, not only for all who live in Utah and have an interest in DS, but those in neighboring states as well. They just had their conference held jointly with the Department of Family Services at Brigham Young University. It included mini-conferences with youth over 13, (who have DS) and another for siblings ages 8 to 15. One of the services they provide is Celiac Disease screening in conjunction with Dr. Linda Brok to study the relationship to Gluten Intolerance and DS (Swedish researchers have found that the people with DS are one-hundred times more likely to have Celiac Disease than the general population). There is no charge for the blood test which is accurate more than 90% of the time. They are also helping The Arc and the State Office of Education publicize an "Inclusion" conference November 12 and 13 at the Snowbird Ski and Resort in Utah (SARS 250 East 500 S, Salt Lake City, UT 84111). Fees and lodging costs are slight. They point out the conference likely will help not only participants, but the entire family, and that it is an opportunity to take an experience which many view as a tragedy and turn it into a triumph. At least write them at P. O. Box 753, Farmington, UT 84025-0753 and ask to get on their mailing list.
JANET MARCHESE. The December BIOGRAPHY includes her in their report on "The 20 Most Remarkable People of 1998." We have written of her before, but BIOGRAPHY shows her as such a beautiful, happy person that she outshines a half dozen adoring children in the picture. Her husband Louis (for 20 years) and probably all five of their children are shown, but the pictures certainly show that Janet is a blessed and loving person. The caption says she has found homes for 4,000 children with DS in the 22 years she has been at it. Her nonprofit operation is A Kids Exchange. She also has a business called The Angel Keeper. She gets calls from all over the world. She has more than 100 families wanting to adopt. Her adopted son, T.J., has DS and is about 23 years old. Of the callers, who already have given birth, almost 75% decide to keep their child. She usually has 25 to 30 children to place and has never failed to find a home. To contact her call (914) 949-5090 or write 27 Eagle Court, White Plains, NY 10605. [Mrs. Marchese has now retired.]
THE ENEMY WITHIN. The November 1, 1998 issue of WOMAN'S DAY has an article with that title, which generally relates to auto immune diseases, which it says is the leading cause of disability in women. It says there are some 80 such chronic conditions; we recently checked out one of them (Graves Disease) as a young athlete who is a relative has been so diagnosed. If your time isn't all committed, we suggest you set aside a notebook and record significant information you obtain about medical problems; someday such concern will likely be recognized as a respectable and worthwhile hobby. Write Julie Gordon, 150 Custer Court, Green Bay, WI 54301-1243 and offer to help her with the MATCHMAKER.
ALTERNATIVE THERAPY IN DS. This is largely taken from a presentation of Bonnie Patterson, M.D. at the NDSS Conference in July. Although I wasn't present, I suspect that some who were might have been disappointed that one or more therapies they favored were not enclosed. In the 70's I suspect I heard dozens of similar presentations, but I didn't think Dr. Patterson left the impression that nothing not endorsed by AMA or the medical profession had any basis in fact. She seemed to accept the definition of as medical treatments not in conformance to the standards of the medical care of the community but she recognized that previous "unconventional" treatments such an hypnosis and acupuncture are now quite commonly used in medical centers or taught in some U.S. medical schools. In relation to the captioned subject she categorizes AT logically.
She started her historical record with thyroid hormone a century ago. Her next citation involved three of my friends starting with Hans Zellweger, M.D., who was one of my first collaborators. I introduced him to Mary Coleman, M.D. (who was the second) and Robert actually was a 3-year subject in her double blind research project. The third friend was one of our key speakers at the first U.S. Down's Parent/Professional Conference in 1973 (Sig Pueschel). I don't think Sig would object to my revealing how much of a typical father of a young son with DS he was; he was so proud of his home movies of Chris. Unfortunately, Chris who was only a decade older than Robert, died this autumn, but by motivating Sig he did more for the DS cause than most professionals! (See p. 1).
Next, she provides background on sicca cell therapy, which actually predates the seratonin precursor research and reports that a '90's study found no statistically significant difference in development or growth rate of subjects and controls. She does a nice job reporting on cosmetic surgery and that it isn't now considered viable in most centers unless surgical intervention appears necessary.
She listed 14 items in the bibliography with the most recent being Len Leshin on nutritional supplements. Dr. Leshin's Email address and Web site URL follow: email@example.com and http://www.ds-health.com/.
Dr. Patterson has an insightful column in the DS PRESS called "Medical Insights" which you will want to check out if you join DSAGC, 1821 Summit Road - #102, Cincinnati, OH 45237. (See p. 3).
CLEMENS BENDA. He had impeccable credentials and was considered by some as the first psychiatrist with American institutions for developmentally disabled people. I talked to him by phone but was unable to convince the medical doctors I worked with in putting together the first parent-professional conference, to put him on the program, although I knew from private conversations that he would have done so. I also remember my copy of THE CHILD WITH MONGOLISM was lent out, but not returned. Benda, on pages 221-227 discusses the extra chromosomal material in DS and although terminology and procedures have changed, it reveals what was known about the accessory chromosome 40 years ago. I should have realized that since one of my new pen pals (Curt Stern) was cited in the text that he was an expert, but at the time we were only communicating about my draft of an article on the horrendous name by which DS was known when Robert was born.
DS/MR. One of my first objectives 26 years ago when I started a newsletter on those subjects was to make known that DS is a distinct condition although most or all have mental retardation just as they have the same number of arms, legs, etc., as non-disabled people. The Summer issue of THE JOURNAL OF SPECIAL EDUCATION reminded me that many people (even though aware of the extra chromosomal material that people with DS have) think DS & MR are the same thing. That issue, listed Federal court decisions by disability, included DS as distinct from some dozen other categories, including MR. Also, the August MENTAL RETARDATION contains an excellent article by the NY State Institute for Basic Research in DD and the Sergovsky Center people, on the prevalence of chronic medical conditions in adults with MR, which clearly denotes those with or without DS. Both articles cited above are excellent and produced results that are much clearer than would be true if some all encompassing objective such as just adults (or even adults with a modifier) were used.
PDDNOS/COMMUNICATION HELPERS. We recently received a request for information on PDDNOS from an aunt of a 9 year old boy who she said he has ADD only ten times worse. The doctor says it isn't Autism, Schizophrenia or Asperger's Disease. If you have any information on Pervasive Development Disorders not Otherwise Special, contact firstname.lastname@example.org or us and we will print or forward it. We don't pretend to be experts on medical problems (although we have a great deal of knowledge about DS) and we can't help subscribers much beyond what is done in an article like this. Your local library is the best place for most people to seek help obtaining available information. We compliment Christina Hansen and others like her who help coordinate information seeking for any of the many relatively unknown ailments. I sent her an article on Autism and the Pervasive Developmental Disorder (PDD) Spectrum, which she appreciated.
MEDICAID EXPENDITURES FOR CHILDREN ON SSI. "Most children with SSI, despite having severe mental health, physical, or developmental disabilities have relatively modest Medicaid expenditures" according to a well written and documented study that your librarian can help you get through ILL which was in PEDIATRICS '98; 102:610-615.
SLEEP-DISORDERED BREATHING AND SCHOOL PERFORMANCE IN CHILDREN. This article by David Gozal, M.D. is in PEDIATRICS '98, 102: 616-620. He recommends and concludes: "It is therefore recommended that sleep related symptoms should be actively sought in children with developmental or learning problems, and that referral for evaluation of sleep-disordered breathing should occur early rather than late."
MANAGED CARE AND CHILDREN WITH SPECIAL HEALTH CARE NEEDS. This article by the Committee on Children with Disabilities (1997 & 98) of the American Academy of Pediatrics appears in PEDIATRICS C1SSN 0031 4005), Vol. 102 & 3, on pages 657-660. We have previously cited and corresponded with a member of that committee, Theodore A. Kastner, M.D.
INSTITUTIONS. In college (University of North Dakota) almost 60 years ago, I studied this subject and developed a life-long interest. Of course, many things change and perhaps the availability and protocol of medical personnel has changed the most in relationship to society's concern for the insane, addicted, epileptic, and mentally deficient. Much of this article relates to the 1934 book published and written by John Grimes, M.D., INSTITUTIONAL CARE OF MENTAL PATIENTS IN THE U.S. Dr. Grimes says in the Preface that he was engaged by the AMA in 1931 to investigate all hospitals caring for mental patients, but AMA also appointed a committee on mental hygiene which Dr. Grimes apparently thought was controlled b the American Psychiatric Association, and his report was not published by AMA (due to in-house politics?).
This article will relate largely to the North and South Dakota institutions for mental defectives. Grimes' staff visited the institution at Grafton, ND but not the one at Redfield, SD; both were built shortly after the beginning of this century. Both had average clients numbering below 700, but Grafton had 658 and Redfield 532. Both institutions still function but house fewer "defectives." In both states there has been a proliferation of smaller facilities for such citizens spread around on a geographical basis where the numbers exist to pay for and staff a sheltered workshop with support staff. The total number of citizens served has increased greatly. Now there is an Arc of the U.S., which is more than a watchdog for the quality of life for people with mental retardation and their families. It has spurred the current "services waiting list" campaign. We encourage all those who might want to be considered as the next Arc Chief of Staff to ask Arc President Quincy Abbott (P. O. Box 1047, Arlington, TX 76004) for details.
Best wishes to Dr. Abeson on his forthcoming appointment as executive director of the U.S. Youth Soccer Association.
DSA FAMILY CONNECTION. The DSAGSL publishes this newsletter (P. O. Box 63208 St. Louis, MO 63163), V414 announced the death of the last of a great team of DS warriors, Pearl Nelson. She is credited as the founder of DSAGSL. I think of the Nelsons as great friends who I saw frequently in my first years as a DS activist. Marshall worked for the Missouri Synod of the Lutheran Church and was a leader in the AAMR Ministry Division. He also liked baseball. Both were very sociable. It says there is a Pearl Nelson Center in Pensacola and I suspect now that she was the key to my receipt of $1 each from about 8 mothers from Florida in '72, which led me to decide to continue what first seemed like a gratuitous communication job. It said she was the Arc Executive for five years and although I didn't remember that whenever I was with the Nelsons at an ARC activity in those early years, we were treated like royalty. This made me recall that Dick Koch was able to tie in our first DS conference with the ARC conference in Disneyland, and since the Nelsons were highly esteemed within the ARC and several ARC presidents have had children with DS, it is not unlikely that Pearl and Marshall had a great deal to do with that collaboration.
We served together on the Board of the DS Congress. Sandy Munzlinger is the current DSAGSL President and our associate editor Victor Bishop serves on the board of directors. They gave our publication a nice plug. The impact of this group has lengthened the dimensions of "Greater Saint Louis" so we suggest certainly that all from that part of the Nation concerned with DS affiliate. However, they primarily target the SL commuting area. First Vice President Karen Kramer has an article on improving sleep and she will have an in depth article on Obstructive Sleep Apnea and DS in the next issue. Also, details on their picnic and Buddy Walk 10-25-98 will be provided.
HELPING ADULTS WITH MR GRIEVE A DEATH LOSS. The April '98 132 pp book sells for $16.95. Robert's girlfriend died in early October and although the loss is great, he had had courses in death and dying. He has attended the funerals of those concerned with the local support effort for people with MR as well as family members. To order, call 800-821-8312.
DEMENTIA, AGING AND INTELLECTUAL DISABILITIES: A HAND BOOK. This is a new technical book edited by Janicki and Dalton; call 1-800-821-8312 to order and perhaps arrange for a refund or trial time period from Brunner/Mazel publications in case you don't find the book satisfactory to your needs.
EPSTEIN TO RECEIVE ARC RESEARCH AWARD. This M.D. is a professor of pediatrics at the University of California School of Medicine. He and colleagues developed the mouse model that mimics DS. It is used worldwide for the study of the origin and course of development of both DS and AD. He continues to seek the genes responsible for the MR and heart problems in DS. He lost three fingers in a '93 bomb mailed by Unabomber, Kaczynski.
NURSES. I have noted their strong professional urge to improve their knowledge of medicine and human relations for some time, and believe it is the strongest uplifting professional drive I have seen in half a century. I noted in the free trial copy of the American Journal of Nursing sent me more than a half dozen cards that promise such a copy and although there is no indication that their offer is restricted to those in the medical field, I have no assurance that if you write AJN, P. O. Box 50478, Boulder, CO 80321-0478 and ask for a free trial issue, they will send it, but I recommend you do it. The issue sent me (Nov.) opens with a brief reminder to subscribers to take stock of their nursing service skills and the value to society of such skills. Perhaps the articles on Multiple Sclerosis, Homeless People and Mental Health, WWW, Occupational Hazards would interest you more, but I cut out and sent the one on Screening for Anorexia and Bulimia to my four adult children. They are problems that should be detected and treated in adolescence.
Somewhat similar in thrust was the article on Fibromyalgia on pages 17 and 18 of the October issue. Ask for a trial copy and perhaps you will agree that the annual price of $27 would be an investment instead of a cost.
NEWS BY AND ABOUT PEOPLE WITH DS. We are promoting both the NDSC and NDSS efforts, but first I want to again express appreciation for Sharon Shimizu and CARING, which I believe was the first U.S. journal relating to DS. It was a treasure to my family and myself and probably should be singled out as the first brigade in the DS Crusade. She started it in 1972 perhaps a few months before Robert was born and by publicizing our first parent-professional conference that led to the formation of NDSC, she was instrumental in both endeavors. Anyhow, her child died and others couldn't do what she had done.
The two above organizations have outstanding publications, including success stories about DS written by people with DS. NDSC inserts DS HEADLINE NEWS in the D.S. NEWS (which I started before there was a DS Congress and gladly turned over to them almost 23 years ago). NDSS publishes a separate glossy journal (neither organization refers to their periodicals as journals, but they both deserve that recognition as much of SHARING OUR CARING did). Try to beg, borrow or otherwise produce enough money to get both journals and arrange with a nearby public library to shelve them when you bring them to it. NDSS is at 666 Broadway, NY, NY 10012-2317 (800-221-4602) and NDSC is at 1370 Center Drive, Suite 102, Atlanta, GA 30338 (800-232-NDSC).
LEARNING BY PEOPLE WITH DS. David Patterson, president and senior fellow of the Eleanor Roosevelt Institute said the Institute is embarking on a 5 year study of the captioned subject. It will be done in collaboration with three or four other research groups.
PREVALENCE OF CHRONIC MEDICAL CONDITIONS. This excellent research report is on pages 269-279 of V 3C #4 of the August MENTAL RETARDATION. Professionals perhaps can get details from one of the authors (Kapell, Nightingale, Zigims, Rodriguez, Lee or Schupf at either the N.Y. State Institute for Brain Research in DD (1050 Frost Hill Road, Staten Island, NY 10319) or the G. H. Sergievsky Center P & S, Box 16, 630 W 168th St. NY, NY 10032. Certainly all concerned with DS should read it as the tables distinguish 90% of them had hypothyroidism and/or heart disease whereas visual impairment was the next most common problem (35%). Cancer in DS was relatively rare. For information on this or other AMAR publications or AAMR membership call 1-800-424-3688.
SHOULD YOU SEEK SSI COVERAGE FOR A LIKELY SEVERELY DISABLED CHILD? Since you can simply dial 1-800-772-1213 to get started or contact the closest SSA office the answer is clearly "yes." Many individuals are entitled to survivor's SSA benefits and if processed for SSI consideration are likely to receive additional benefits, too. SSA can assume a child with the following and 100 other conditions: Blindness, Down syndrome, significant mental deficiency, or are disabled otherwise. SSA must determine that marked and severe functional limitation exists which will last at least 12 months if the child lives and the child must not have a job consisting of what SSA considers "substantial work." However, if the child isn't yet 18, the parents income and assets must be below a maximum for the child to get SSI.
OCTOBER UTAH DOWN SYNDROME FOUNDATION ADVOCATE. We have endorsed this house organ many times in the 15 plus years it has been published. The colors and make up have made it standout. In this issue they gave us a 130 plus word plug which we very much appreciate; if you are interested in the plug, USDF, or the Advocate, we will send subscribers who send us a SASE the page which contains it along with the phone number and mailing address. If you might be willing to order one of their '99 Natural Wonder Calendars ($10), we will send the page with the order form and pictures of some of the youngsters with DS in it. We have reprinted below "Far Different Places" from the album of songs for and about disabled people, which is available on both vocal or instrumental cassettes and compact discs (800-377-6788):
A husband, a wife, a simple plan for life--
Love in our home, a child of our own,
Then a lullaby tune from a hospital room
As hushed voices whispered the news.
Just a simple exchange,
Yet everything changed
And I think in that moment we knew...
A woman, a man, a very different plan,
Blessings to earn and so much to learn,
For this child of our love, entrusted to us,
Would help us be all we could be.
God made no mistake,
And though our hearts ached,
He touched us and helped us to see...
Our journey would take us
To far different places
Than we had ever dreamed.
Our journey would take us
To sad, lonely places
That some had never seen.
Places with a different kind of beauty,
A special place apart--
Touching far different places in our hearts.
CHROMOSOMAL FRAGILITY. This article is in SCIENCE NEWS of 11-14-98. It says that 100 such sites have been detected with MR associated with the fragile X site. Some such as FRA3B of chromosome 3 are often damaged. A lack of folic acid appears to make fragile sites more likely to break, but generally such breakage causes can't be identified. Geneticist T. W. Glover of the University of Michigan says he thinks smoking facilitates or is associated with damage to certain fragile sites.
NADS NEWS. Their November issue is a classic. The "lead" article by Dr. Layton on Literacy was reprinted from Triangle DS Network of Cary, NC and should be must reading for parents of toddlers and the young children with DS. Then there is the following notice which could have benefits for all children with DS. "The Down Syndrome Clinic at the University of Chicago's La Rabida Children's Hospital is conducting a study on the behavioral, cognitive and medical characteristics of children with Mosaic Down Syndrome."
"If you are interested in having your child with Mosaic Down syndrome participate, please contact Dr. Nancy Roizen at 773-702-0188."
There are three book reviews including WE'LL PAINT THE OCTOPUS RED, which Victor Bishop notes on p.13 herein. We encourage you to send for NADS gift memberships at only $10 each (P.O. Box 4542, Oak Brook, IL 60522-4542).
SPECIAL EDUCATION DECISION REVERSED BY APPEALS COURT. The AP reported in mid-September that in a case involving a Christian School the Appeals Court held that if a boy was denied payment for a paraprofessional because of the religious nature, then it was illegal. Subscribers that send a SASE will get a copy of the article.
DS CALENDAR/INT. DS FOUNDATION. In the early 1970's SHARING OUR CARING put out beautiful calendars with birthdays of subscribers entered on the appropriate date space. Robert got birthday wishes from all over. For one year, 1973, we were part of a consortium that put out an annual with pictures and stories of children with DS, but lack of sufficient strength led that activity to fail as did the SOC calendar although they had success for several years. In '97 the Down Right Beautiful Calendar of the Int. DS Foundation (formerly the Indiana DS Foundation) was created to celebrate the first birthday of Madison Best. Robert got a letter from Maria Best, President in '97 indicating the mailing address is 2728 Maynard Dr., Indianapolis, IN 46227; If you want a '99 calendar write to the above address or call 800-792-6099 or (317) 784-6500. Anyhow, their '97 calendar is beautiful, but if they (or other DS support groups) agree to list individuals on their birthdays for a $5 or $10 contribution, I should think the concept would become a money maker. No matter, we thank all who assisted in making the '97 calendar available.
The Utah DS Foundation (P.O. Box 753, Farmington, UT 84025-0753) is producing the third calendar. Maren Burnside, who chairs the committee, has a two year old son with Down Syndrome. Maren says raising him is no different than raising her one-year old daughter. He was one of the about 40% of babies born with DS who had a heart defect. The calendar costs $10 (301-774-5670).
ANTIBACTERIAL OVERKILL. That's the caption for the key article in the October HEALTH AND NUTRITION LETTER from Tufts University. It relates to using antibacterial soap when ordinary soup does as well.
DOWN CHILDREN SUBJECT TO MALNUTRITION. A two-year study by NCSC scientists has documented impaired metabolism in lab mice bred to exhibit a defect similar to that found in humans with DS. They were less readily able to absorb nutrients from glucose. W. James Croom has suggested that DS nutrients are so different that probably ability to absorb nutrients is impaired in people with DS. This was extracted from the November POPULAR MECHANICS LETTER.
JOB TASTING. Locally, that's the name given to exposure to various occupational situations for disabled people. Robert has been in that mode for a decade. Most recently he had a chance to look over a food preparation job with Godfather's Pizza and a team cleaning job (8 p.m. to 4 a.m) at Presentation College and the Super 8 Motel chain office. Naturally, we are appreciative of those companies for checking out disabled prospective employees and the ATC for making all the arrangements including provision of transportation and job coaches. The night time work restricted his regular contacts too much.
DOWN SYNDROME: A PROMISING FUTURE, TOGETHER, That is the title of a video now available from the NDSS, but they also have a book with the same name (the book is published by Wiley Liss). You will have to obtain availability information from NDSS for the video (800-221-4602), 666 Broadway, New York, NY 10012-2317, or http://www.ndss.org). The book costs $60 (hard cover) or $20 (paper-back) and you perhaps can get a copy by writing MacKeever, John Wiley, 605 3rd Avenue, New York, NY 10158-0012. It is edited by Ph.D's Hassold and Patterson and summarizes a recent 4-day NDSS Conference.
Betsy Goodwin, founder and president of NDSS sent me a copy and I reflected on the advancements she has brought about since I met her when her child was an infant. Perhaps she thought at that time how great it could be if she had a video like this to view. Anyhow, regardless of your situation I recommend that you seek an opportunity, not only to view it, but to assure others learning about DS have a chance to see it. The guide that comes with it and the video itself indicate it is supported by the Reggio family and we want to thank them not only for ourselves, but for all the millions of people worldwide who live, have lived or who will live and feel inclined to help people with DS had videos of our son when he was an infant, which would have been better received if NDSC or NDSS existed at that time.
The first big message is for physicians, new and prospective parents of infants with DS and others viewing the video concerned with DS. The need for early heart, sight, and hearing evaluation is emphasized. As noted elsewhere in this issue Sig's son, Chris, and Robert's girlfriend, Amy, have succumbed to heart failure. Tragic losses to society, which might have been avoided if the video had been available a few decades ago. However, current DS Health Care Guidelines do not indicate that an infant with DS will face any of the specific problems that research finds a certain percentage will face. Other strong messages are that infants with DS shall be treated like other infants and differences relating to DS should be downplayed; don't worry about the future (do what can be done now), and that the infant with DS will be even healthier 20 years from now if those of us concerned with DS do what they can now.
EDUCATING DAVE. Dave is the subject of the article in the November READER'S DIGEST, but Frank (who has DS) is the hero. Dave was cutting classes and was talking about dropping out of high school, but he was attracted to a trailer parked out back and when he was introduced to the teacher; she let Frank show him around. This led to a friendship between them and they both graduated and became best friends; to be friends forever was their goal. Some day society, hopefully, will see a buddy system associated with special education programs and more students of both genders will have buddies to communicate with and provide assistance.
JOAN MEEKS. She is our A #1 subscriber and grandmother of Amy who works at Shopko. She hasn't sent money recently and we aren't asking for any, but we do enjoy her letters and enclosures such as "Whitesides students like beauty day." I think the Standard-Examiner must have a "Special" Editor who ferrets out opportunities to tell readers of disabled people's activities in both a newsy and an educational way. Their correspondent, who put together the enclosure mentioned above was Loretta Park. We can send a copy to our subscribers who provide a SASE. It relates to special education students in Layton, Utah and the Fran Brown College of Beauty there. Not only do the students learn more about grooming, but they have fun and also learn about manners. They visit about five places a month, including food and grocery stores.
RECEIVED FROM CHRISTINA HANSEN: "I received the information on PDDNOS. I am truly grateful. I also have no changes in your paragraph, it is just as I stated. Thank you so much for giving me your time. Many people these days would have deleted this message and not bothered with me. I can honestly say that when I sent the first message I expected no reply, but thought it was worth a try. You are a great person. My family and I are truly greateful for your time.
DISTURBANCES IN THE MOTOR BEHAVIOUR OF CHILDREN WITH DOWN'S SYNDROME: THE NEED FOR A THEORETICAL FRAMEWORK is a literature review in Physiotherapy, January 1998, Vol. 84, No. 1, p. 5-13 posits that the reduced postural tone, e.g., trunk rotation and extension, and joint laxity adversely influences balance and leads to compensatory (extended spinal column to roll), static and symmetrical movement patterns. The motor development of children with Down syndrome follows its own specific course, negating the mantra that our children develop normally, only slower. In particular, the sequence of developmental skills mastered by children with Down syndrome, dependent on postural control are acquired later and differs from that of children with no developmental disability. Our children adapt their motor behavior to accommodate their motor disturbances, e.g., hypotonia, inadequate proprioceptive feedback, and instability. Taking these motor problems into account, influencing developing motor patterns is desirable. The authors, P.E.M. Lauteslager, A. Vermeer and P.J.M. Helders conclude that research into the effects of such a form of intervention is needed. Patricia C. Winders, PT, author of Gross Motor Skills in Children with Down Syndrome, Woodbine House, 1997 stated at the July 1998 NDSS Conference that the goal of physical therapy in the early intervention period is not to accelerate the rate of acquisition of gross motor skills, but to minimize the development of abnormal compensatory movements to which children with Down syndrome are prone which will become the source of physical problems later in life. It is unlikely that physical therapy, no matter how intensively applied, can fundamentally alter the rate at which gross motor skills are going to be acquired. This is primarily a function of tone and cognition, conditions that are not amenable to physical therapy intervention. Winders classifies, a posteriori, hypotonia in four tone categories according to average age which walking (15 feet unassisted) is achieved: mild: 21 months; moderate: 25 months; moderate to severe: 32 months; severe: 59 months. The average walking age, according to Winders' data, for Down syndrome as a group, is 26 months, standard deviation is 9 months and the normal range is 17-35 months. In a follow up to above Physiotherapy article, P.E.M. Lauteslager, B.A. Bakker and M.E. van den Heuvel mention in Physiotherapy for Children with Down Syndrome: The Development of a Method (Down Syndrome Behind the Dykes. Research in The Netherlands. VU University Press, Amsterdam 1998) that there are 12 studies since 1970 of the effect of intervention on the motor development of young children with Down syndrome where short-term effects are generally favorable but no long-term benefits have been demonstrated. The authors from Holland (a country made famous by Emily Perl Kingsley) propose a framework for measuring and interpreting the measurements of effects of motor intervention based on a specific measuring instrument they developed: the 'Basic Motor Skills of Children with Down Syndrome' (BMS). Provisional results appear to be positive where 18 children showed an accelerated development during the treatment period (13 weeks) and slowed downed during the rest periods. Therapy transfer to parents and their participation were considered essential to the treatment.
DOWN SYNDROME AMONGST US. Sarah Sander, E-mail: email@example.com, edits this publication of information, chizuk and shared experience. The magazine covers a large spectrum of disabilities and handicaps, especially within the Orthodox Jewish Community. Back issues are available and a 3-issue subscription is $15.00. Send payment to DSAU, Inc. 32 Rutledge Street, Brooklyn, New York, 12211. (718) 834-2055. Fax: (718) 834-5255. For subscriptions in Israel contact Mr. S. Rubin at 011-972-2-653-5399.
In Issue #6 of Down Syndrome Amongst Us, Rabbi Canvasser, E-mail: firstname.lastname@example.org, shares his understanding on what the Torah tells him on how to deal with the question on "What is it that Hashem wants from me and wants me to learn?" The worldview of Rabbi Canvasser is that whatever G-d does, it is good and that G-d does not make mistakes. Our knowledge is not the same as G-d's knowledge and therefore there are some things which, from the perspective of our eyes would look "bad" and which we can learn to see through G-d's eyes and know them as good. Also, the goodness of what is in the world has to do with it being ultimately purposeful-again, something which within our limited temporal perspective may be difficult to see, but is a knowledge which one can kind strive for. Rabbi Canvasser quotes Cliff Cunningham, Down's Syndrome: An Introduction for Parents', Brookline Books, 1996: "Bringing up any child is a challenge. Whether bringing up a child with a handicap is a greater challenge, or just a different challenge from bringing up an ordinary child, is a matter of opinion. But bringing up a child with Down syndrome is not only a challenge to cope, and provide the child with the best available opportunities to grow and develop-it is a challenge to the set of values by which we judge others, and decide what we want from life." Rabbi Canvasser knows that "his daughter will have certain kinds of limitations" but ".... in one way, we feel that the burden of educating our [non-disabled] son [my daughter's twin brother-both born to us after nearly 20 years of marriage] weighs more heavily upon us; not in the sense of physical effort but in the sense of the diligence required to be sensitive to HIS more subtle special needs [...] G-d willing, just as our son will learn to accept his limitations and celebrate his abilities, so too, will our daughter learn to accept her limitations and to celebrate her abilities."
AAMR AUDIO CASSETTES from the American Association on Mental Retardation 122nd Annual Meeting relating to Down syndrome: Health and Aging Among Adults with Down Syndrome: Alzheimer's Disease and Other Concerns. Frank Murphy, Ira Lott, Wayne Silvermann and Nicole Schupf; Judgement on Alternative Therapies. Allen Crocker, Kent MacLeod, George Capone. To order contact Five Star Conference Recording & Duplicating, P.O. Box 188164, Carlsbad, CA 92009. (800) 350-TAPE.
BOOK REVIEW. Schooling Children with Down Syndrome. Toward an Understanding of Possibility. Kliewer. C. 1998, NY: Teachers College Press, ISBN: 0807737313. E-mail: Christopher.Kliewer@uni.edu. In Chapter 2, under the subsection, The Impact of Evolution on Interpreting Human Beings, Kliewer quotes Steven A. Gelb, E-mail: email@example.com (Mental Retardation, 32(1), 1-9, 1995) that those who supported evolutionary degeneracy hypothesized that degenerates were atavistic reversions to earlier evolutionary stages. Furthermore, S. A. Gelb, in The Problem of Typological Thinking in Mental Retardation (Mental Retardation, 35(6), 448-457, December 1997) notes that racial typology in mental retardation persists and contrary to popular belief, the presence of extra chromosomal material in the genes of persons with Down syndrome does not directly produce a clear-cut type. The physical markers associated with Down syndrome are not directly mapped from genes, and there is more variation among persons with Down syndrome, as well as overlap among the general population, than generally supposed. Gelb argues against the mindset that is still prevalent which sees people as belonging to a type, rather than being an individual who may share some, but not all, characteristics with other people who are classified together in the manner that J. Langdon H. Down assigned a "ethnological classification of idiots". The most lasting legacy of Down's classification was the term mongolism, which persisted until the 1970s and was brought to its absurd logical conclusion by Thomas A. Merton, in Mankind in the Unmaking. The Anthropology of Mongolism (Fairlight, Australia 1968) who reckons that there are two distinct mongolism types, the Equatorial (subtyped into the Negroid and Melanesian) and the Eurasian and, in an atavistic fit, correlates these types respectively to the chimpanzee and the orangutan and provides side by side photographs of babies with Down syndrome with their primate homologues for our viewing pleasure. A year after Merton's monograph, in 1969, Autosomal Trisomy in a Chimpanzee: Resemblance to Down Syndrome was published in Science 165: 1010-1012 by McClure, H, et al., sparing us of Merton's further atavistic theories on the subject.
THE EDUCATIONAL CHALLENGES INCLUSION conducted by Gloria Wolpert, Ed.D. for the National Down Syndrome Society (NDSS) can be ordered for $13.00 from the National Down Syndrome Society, (800) 221-4602. The study results are based on 125 parent responses and 120 teacher responses where 90 are parent/teacher pairs and provides suggestions for classroom practice for attention, memory, concept attainment, mediational strategies and paired associates, transfer of learning, motivation, reading and math skills. Statistics: 88% attend neighborhood school, 82% had classroom aides, mean age of child was 9.3 years and mean grade was 3.8. Following are the suggestions for concept attainment as per Piaget's stages: 1. Children with Down syndrome learn best by active participation, rather than sitting and listening. 2. Allow for manipulation of concrete materials to solve problems and maintain interest. 3. As learning occurs in an ordered sequence, tasks should be presented step by step, making sure that the child has the pre-requisite concepts for the next step or level. 4. Be guided by the individual's mental age: his/her logic, interpretation of the problem and expression of an answer may be different than what is expected from chronological age. A detailed report of the challenges of inclusion encountered by teachers and students alike is found in Tácticas y estrategias para la integración de los alumnos con síndrome de Down in Síndrome de Down: biología, desarollo y educación, Masson, 1997 which proposes the gradual abandonment of textbooks, emphasize functionality in the curriculum, teaching to the student's interest and motivation, learning how to learn, and to encourage the cooperation between students.
FORTHCOMING & NEW BOOKS ON DOWN SYNDROME
Fine Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals. Maryanne Bruni, BSc OT(C). Woodbine House, 1998. 1 (800) 843-7323. E-Mail: firstname.lastname@example.org.
Improving the Communication of People with Down Syndrome. Edited by Jon F. Miller, Ph.D., Mark Leddy, Ph.D., & Lewis A. Leavitt, M.D. Paul Brookes, 1998 ISBN 1-55766-350-5.
Stories of Rhonda: A Down Syndrome Child. Rhonda Michelle Kamuda with Steve Shipp. Quips Books, 1846 E. 3rd St., Suite 101, Tempe, AZ 85281.
We'll Paint the Octopus Red. Stuve-Bodeen, S. & Devito, P. (Illustrator). Woodbine House, 1998 ISBN 1890627062. 1 (800) 843-7323. E-Mail: email@example.com.
THE CHALLENGE OF LINGUISTIC MASTERY IN DOWN SYNDROME was presented by Anne E. Fowler, Ph.D. at the NDSS 11th International Down Syndrome Research Conference on Cognition and Behavior in November 1997 and mentions interviewing a group of five impressively articulate and literate young adults, aged 17 to 21 years that had acquired the receptive vocabulary of a typical 11 year old, the arithmetic skills of a 9 year old, listening and reading comprehension skills near an 8 year old level and reading skills in word recognition and decoding exceeding 12 year old levels. The possible explanations for the challenges faced by persons with Down syndrome in attaining full linguistic mastery are verbal memory capacity (often measured with digit span tests) and grammatical proficiency. Jean A. Rondal, Ph.D., Dr. Ling. in Cases of Exceptional Language in Mental Retardation and Down Syndrome: Explanatory Perspectives (Down Syndrome Research and Practice 5(1), 1-15, 1998) lists the possible factors in MR/DS exceptional language cases: 1. Particular educational factors: No; 2. Left-hemispheric cerebral dominance: Probably necessary; 3. Cognitive functioning (general): No; 4. Working memory (phonological loop): Possible contributing role; 5. Brain architectural characteristics: Likely. Results of pathological studies of the brain of persons with Down syndrome reveal major anomalies: arrested maturation of neurons and synapses around birth, reduced brain weight, reduced neuronal densities, decreased synaptic density and presynaptic length, hypoplasia of the frontal lobes, narrowed superior temporal gyri, delayed myelination of nerve fibers between the frontal and temporal lobes, hypothalamic and hippocampal abnormalities, and diminished brain stem and cerebellum have been reported. It is reasonable to assume that the brain problems of typical individuals with DS seriously undermine the development and functioning of the language brain structures. Rondal concludes that those individuals with DS and exceptional language abilities have been genetically spared.
EVENT-RELATED BRAIN POTENTIALS DURING AN EXTENDED VISUAL RECOGNITION MEMORY TASK DEPICT DELAYED DEVELOPMENT OF CEREBRAL INHIBITORY PROCESSES AMONG SIX-MONTH-OLD INFANTS WITH DOWN SYNDROME by J. H. Karrer, Ph.D. and R. Karrer, Ph.D. was the opening presentation at the NDSS 11th International Down Syndrome Research Conference on Cognition and Behavior. The results of this study using measures of the electrical activity of the brain called ERPs (event-related potentials) show that infants with Down syndrome have deficits in adapting their neural responses to repetitive stimulation at an early age. These observations support the concept of altered inhibitory processes and less efficient memory processes in the brain of infants with Down syndrome. There were no significant differences of visual attention between infants with and without Down syndrome during extended experience with visual stimuli.
DOWN'S HEART GROUP is a registered charity encouraging research into the heart problems in Down syndrome and aims to provide support and information to families who have children with Down syndrome and an associated heart condition. The Down's Heart Group publishes an information packet with the following of topics notes: Fact sheet, Book List, Cardiac Catherization Test, Ventricular Septal Defect, Tetralogy of Fallot, The Normal Heart, Persistent Ductus Arteriosus, Atrioventricular Septal Defect, Atrial Septal Defect, Drugs Used to Treat Children with Heart Conditions, The Heart Team, Intensive Care, Medical Terms Explained, Pulmonary Hypertension, and Eisenmengers Complex. These topic notes have been posted at http://www.riverbendds.org/cardterm.html or can be obtained by contacting Penny Greene, National Administrator, 17 Cantilupe Close, Eaton Bray Dunstable, Beds, LU6 2EA, United Kingdom. 01525 220379; Fax: 01525 221553; E-mail: firstname.lastname@example.org.
BAKER DOWN SYNDROME CENTER publishes a newsletter and offers parent packets on health care guidelines, preventative medicine checklist, recreational activities and nutritional information. Service referrals to other organizations. Contact: Nancy Hodges RN, E-mail: email@example.com, 1621 Euclid Avenue, Suite 514 Cleveland, OH 44115. (216) 621-0221 or (800) 899-3039.
CONTINUED PUBLISHING, PERIODICITY, PRICE. We need letters, new and renewal subscriptions, etc., indicating interest in the publication. Assuming they are forthcoming we will continue to adhere to our informal every-other-month schedule (last year at this time there were 7 issues) and the price remains at $1 per issue with our guarantee also continuing under which we will refund $1 for all issues not mailed if we cease publication, except for $2. Each label contains digits which in sequence reveal the year the last contribution was received, the month it was received and the amount received.
CONTINUING PUBLISHING/SOCIALISM. The two are related as in a capitalistic society, any activity not valued has a short life. Although in the last almost three quarters of a century I have seen that happen many times and perhaps the biggest example was on the closing of the Navy wire rope (cable) factory. The products produced by the factory were clearly not necessary after the wars, but the people on the payroll and the politicians that supported them fought hard to continue. Anyhow, if we don't get some new or renewed subscriptions, the latest mailing increases will toll the death knell for this publication; if you want us to continue, put a check in the mail.
WHAT WOULD GOD DO? Although it is preposterous to even think such a question new reports and conjecture seemingly need Divine Intervention if a thinking person is to proceed. Both 11-16-98 versions of TIME and U.S. NEWS & WORLD REPORT contain articles on the newly found methods of preserving embryonic stem cells. Some of the captions and sub-captions follow: Heartbeats In a Dish, The Biological Mother Lode; Researchers Grow Cells That Form the Bases of Human Life. Joseph Shapiro, in a separate U.S. NEWS article asks: "Will parents seek tailored babies in hope of erecting a taller, faster, or smarter child? Will the unscrupulous attempt to create human-animal hybrids?"
Arc ENDORSED INSURANCE. They sent Robert more material on insurance including a letter of appreciation from someone proably like me who said among other things: "No one knows the frustration of looking for health, life or community care for our special ones. I have been turned down by so many insurance agencies and had just about given up." My son is 26 years old, is a citizen and deserves coverage like everyone else. Arc President Quincy Abbot included an informative letter which indicates the guaranteed acceptance aspect ends 12-1-98 so if you want direct information call 1-800-503-9230. Semi-annual premiums vary from ages 2 - 70, from $31 to $100 depending on whether five or ten thousand dollars coverage is selected. Any Arc member, whether significantly challenged or not, is eligible. Generally, no complicated applications or physical exams are required.
ADD BIOLOGICAL SIGNATURE. Stanford researchers in the PROCEEDINGS OF THE NATIONAL ACADEMY OF SCIENCES say a functional MRI will likely permit a valid and consistent diagnosis versus a subjective diagnosis. However, few hospitals have functional MRI equipment and the cost could be prohibitive. If interested in ADD we strongly encourage the reading of the 7-page special overview in the 11-30-98 TIME entitled "The Age of Ritalin."
|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: July 25, 2005.|