|People with Special Needs Down Syndrome Report||
|VOL. 19 #1||ISSN 0731- 566X||February 1999|
PRIMARY CARE OF INFANTS AND YOUNG CHILDREN WITH DS. Rebecca Saenz, MD, wrote this 1-15-99 AMERICAN FAMILY PHYSICIAN article and the two patient information handouts that follow it. We strongly endorse it and certainly hope that every support group obtains a copy and makes its existence known. Subscription information can be obtained from 8880 Ward Parkway, Kansas City, MO 64114-2797 but probably any library can get a copy for you.
WHO? Many readers already know more about the World Health Organization and its new Director than most people, but for those of you interested in what a prestigious M.D. says, get the Jan-Feb PUBLIC HEALTH and read the Editor's report on his trip to Geneva with a positive review of Dr. Brundtland's actions and analysis of how she is reorganizing WHO. I was invited to her home many years ago in Norway before she became Prime Minister and reported that although the institutions for developmentally disabled people in Norway were "squeaking clean" few parents seemed enrolled and active in improving life for such people. However, she did well what most professionals throughout the world thought should be done; fortunately in the USA we had already started moving developmentally disabled people back to the community and assisting families to take the prime responsibility for them with Medicaid and SSI assistance. Anyhow, to get Dr. Anthony Robbin's excellent article write him in care of the journal at room 1855 Kennedy Federal Building, Boston, MA 02203, or Email him at email@example.com.
If you wish to read Dr. Brundtland's address to the WHO staff, contact; URL http://www.who.int/director-general/speeches/1998/english/19980721_hq_staff.html.
THANKS AND CONGRATULATIONS BRENDA DOSS. She is the new Arc President. Like many before her she is the parent of a young lady who has Down syndrome. Like my son, Robert, I assume Robin is the major motivater for Brenda, but others with as much motivation still don't attend meetings, subscribe to periodicals providing current information or join organizations like the Arc. For those of you like Kaye Edwards who had her letter reprinted in the Winter issue of the Arc TODAY suggesting that the Arc doesn't serve people like her son, I can only say that words draw no boundaries and if her son wasn't being served by the Arc, her letter wouldn't have been printed. Perhaps it will lead to an improved "inclusion" statement, but those of you demanding an exact answer to "Whom does the Arc serve?" aren't likely to be satisfied. I was part of the power group that in 1973 got the key target group changed from "Children" to "citizens" but now in the expanding universe, I'm much less concerned about missions as I am accomplishments. You should expect accomplishments from Brenda and the rest of us in the Arc constituency including Robert, who has been both a member and a client of the Arc for more than a decade. I believe his interests were served by the Arc before birth and as for most of the half century that the Arc has existed. If you know of someone who might want to be considered for the vacant Arc executive director position, write Brenda at P. O. Box 1047, Arlington, TX 76004. You can send Email to her and/or the Arc at: firstname.lastname@example.org. Their Home page is at http://www.thearc.org/.
Brenda clearly has a dream that all of us will work together to improve the lives of all people with disabilities. So, Brenda, consider calling or writing the heads of all current organizations serving such people and offering to collaborate in holding a joint meeting with them. Without question, the Annual Convention should usually be held outside of Texas in various parts of the USA. Somewhat similarly, offer to assist in setting up regional centers for organizations servicing the disabled with the Arc as a major force; I should think a majority of the directors and National Committee Chairman would endorse a program attempting to establish a consortium even though participation would vary from region to region.
Liz Moore has moved towards returning the house organ to the driving communication force of the organization, but the Arc TODAY is too big (the paper was the same sized tabloid as ours was but with even more pages and I had many complaints of over-writing). A monthly is the best vehicle to make members realize they are part of a movement, but even a bimonthly would be a significant improvement in attempting to field an effective team.
So that you know the "thanks" wasn't strictly regular social behavior, I want to state that anyone (such as I) reading your background will know you haven't ducked agony; I commiserate with you and hope that the same strengths that have allowed you to excel for half a century will stay with you just as long in the coming century.
WHAT WOULD GOD DO? This so captioned article with background information on stem cell research was in our December issue and we still haven't an answer to the question, but NIH says they will sponsor such research. They recognize it is an ethically sensitive situation, but now consider that it is legal even though tax money can't be spent on research using human embryos. An individual with the National Conference of Catholic Bishops has been quoted as saying NIH thus will reward those who destroy embryos by paying them to develop the cells and tissues they have obtained by destructive means. The U.S. Senate takes on long-term ethical questions such as this and could initiate action that would stop the NIH action. Let one or both of your Senators know of your interest in this matter and ask that they keep you informed.
GENETICS 1998. Page 33 of the January DISCOVER contains nine of the most significant new findings according to Josie Glausiusz. She reports that a mutation of PAK3 on the X Chromosome seems to be involved in receiving signals by neurons in the brain; the mutation hinders the normal responses thus decreasing the neurons' efficiency and leads to learning and behavioral problems. A gene (SPCH1) on Chromosome 7 has been linked to language development; carriers of a mutated form have severe problems with grammar and language. Their speech becomes incomprehensible to the untrained ear. It will help researchers find the developmental pathways of speech. Ask your librarian to get the magazine (or just page 33) and read her synopsis of the other seven breakthroughs.
EATING DISORDERS/FIBROMYALGIA. These conditions have little to do with developmental disabilities, but I have acquired considerable knowledge of them and am willing to respond to letters. We particularly are interested in patients with such problems who may also be developmentally delayed. Fortunately, there has been progress and anyone concerned with eating disorders should write Dr. Pamela Keel, 1102 William-James Hall, Department of Psychology, Harvard University, 33 Kirkland St., Cambridge, MA 02188. She is the only one of the five authors of the Jan ARCHIVES OF GENERAL PSYCHIATRY (Keel, Mitchell, Miller, Davis & Crow) article titled "Long-term Outcome of Bulimia Nervosa" listed to coordinate reprints. See the February ARCHIVES OF GENERAL PSYCHIATRY for a positive research report on Bulimia.
CARE TRAK. If you care for someone who has AD, DS, Autism or wanders for other reasons, call 800-8424537 and ask Michael Chsylewski to send you the "Relax" flyer and other information on their electronic movement monitors.
VENTER? The WASHINGTON POST article on him by Justin Gillis was reprinted by USA WEEKEND at the end of January. We have mentioned his work from time to time, but generally only alluded to his genetic findings and endeavors as few knew of J. Craig Venter. He has announced that his laboratory will decode the human genome in 2002 (three years before the USA Human Genome Project is scheduled to be completed). They unraveled the complete code of the Haemophilus influenzae bacterium; the first genetic code of a complex, free-living organism and is the only lab in the world to have published a genetic sequence for more than one free-living organism (Treponema pallidum was their seventh). Will this lab identify the genetic causative component of DS and decode it?
DELAYED SPEECH AFFECTS BOYS THE MOST. If his speech is slow, it may not lead to language problems. Your reactions on this one are sought.
DS ADVOCACY-SELF ADVOCACY TRAINING. NDSS will take applications for only 125 people March 7 - 9 at the Holiday Inn, On the Hill in Washington, DC. Call 800-221-4602 if interested ASAP, but at least during February.
IRS/EIC. People caring for a disabled child can claim him for earned income credit. Call IRS if you have questions.
DOWN SYNDROME. The sub-title is: A PROMISING FUTURE TOGETHER. We mentioned in our December issue that the book was published by Wiley-Liss on the proceedings of a NDSS Conference. As you might suspect, Section VIII "Transition to Adulthood" was of immediate interest to George, Marjorie and Robert Johnson; it consists of only two chapters, the first of which is "Life Issues of Adolescence and Adults with Down Syndrome" by Dennis McGuire and Brian Chicoine of the Adult DS Center of Lutheran General Hospital. One of their first major messages is: "People should be allowed challenges and independence in their lives, but not at the risk of their own health and safety."
Another major message is: "Similarly to retirees in the general population, older adults with DS, who remain active are more likely to live longer and healthier lives." They found only 123 adults with DS showed a loss of skills out of 447 sampled and only 9% of the 123 were diagnosed with AD. There were 53 over 40 years with skill loss and 21% of them diagnosed with AD. The remaining 42 over 40 years of age showed a positive response to medical and mental health treatments or to remedial treatments for sensory impairments.
We took particular notice of the admonition: "Problems arise when changes in schedule and routine occur, especially major changes such as leaving school, entering a group home, or unexpected changes such as an illness or death in the family." And "Because time and familiarity are so important in the development of friendships, life changes that separate friends may be devastating."
The other Chapter in Section VIII is attributed to Kathleen McGinley, who is the Assistant Director of the Washington, DC Arc Governmental Affairs Office. Robert's brother Peter had lunch November 20th with her associate Paul Marchand at the DS Conference in Grand Forks. Her presentation was titled "Where Do People Want to Live? Can They Make It Work?" She made the point that disabled people face a housing crises and that individuals with disabilities and their supporters do not consistently speak about their needs with senators, congressmen, etc. She clearly says people with disabilities and their families should be involved with advocacy groups such as NDSS and the Arc. I'm going to send Peter these two Chapters and a letter I recently sent to HUD Secretary Cuomo and the YMCA, Salvation Army, B'nai B'rith, Goodwill and Catholic Charities, who are grantees that will share in the effort to assist persons with disabilities pay for housing. I'm sure Paul and Kathleen did Trojan work in getting the President to release another $130,000,000 extra on 11-28-98. You will want to read the other 30 plus chapters so contact NDSS, 666 Broadway, New York, NY 10012-2317 or John Wiley & Sons, 605 3rd Ave., New York, NY 10158-0012.
DS HEART DEFECTS. This is very important as about 45% of the babies with DS are born with heart defects. There is an improvement in survival and quality of life but for a Century such problems inevitably led to early death. Those facts should be called to the attention of physicians examining babies with DS and he/she should make a referral to a pediatric cardiologist if the heart appears to be defective. Robert's girlfriend died in October of heart failure, but she didn't have corrective heart surgery. Several years ago the daughter of one of the most concerned couples we have met had a similar fate. Since DS presents itself consistently (about once in 1,000 births) it would be nice to have a packet available containing excerpts on heart problems from such books as BABIES WITH DS, or MEDICAL AND SURGICAL CARE FOR CHILDREN WITH DS. (Call 800-843-7323 or write Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817 for availability information about the books). Check out the UK Down's Heart Group pamphlets.
ROBERT'S SLEEP CLINIC AND NUTRITIONAL EVALUATIONS. This was his first polysomnogram, but we have published nutritional recommendations several times that followed lymphocyte growth tests. Donald Counts, M.D. with the Nutrition Clinic at the University of Texas (TI-27, Biochemical Institute, Austin, TX 78712-1096) suggested 25 mg. of vitamins B1 and B6 daily, along with 100 mg. of pantothenic acid and 100 mg. of vitamin B12. He recommended 25 mg. of B2 morning and evening, 1500 mg. of calcium with 750 mg. of magnesium daily in divided doses, 420 mg. of phosphatidyl choline every other day and 500 mg. of L-asparagine three times daily with meals. Also, Robert should take a tablespoon of olive oil daily or other oleic acid. Although the clinic has had many subjects with DS, there has been no published reports we are aware of reporting on their common nutritional makeup so we definitely believe no care giver should assume these recommendations should apply to others with DS.
David A. Thomas, M.D. evaluated Robert's polysomnogram and his assessment was: Severe apnea with hypoxemia and snoring-related arousals; he recommended CPAP at 12-cm water pressure. We will report in our next issue on any further developments and comments from readers.
SISTERS OF SAINT FRANCIS OF ASSISI. This organization was founded in 1849 and has funded and sponsored 10 organizations which I generally have reported on. For instance, this article is prompted by HIGHLIGHTS, which Robert gets from St. Coletta of Wisconsin; they support people with developmental challenges to attain their highest level of human potential and spiritual awareness. I assume the Cardinal Cushing School (which is another of the 10 sponsored organizations and where Chris Burke got much of his education) has a similar goal. Several of the St. Coletta students with pictures in HIGHLIGHTS appear to have DS and seem happy and satisfied. There will be a new four-year college at St. Colettas (Chiara) affiliated with Cardinal Stritch University (a sister corporation) serving individuals 18 - 30. They also have a program for people who are Autistic (Aspine). Dr. Diana Jones is Chiara's Director of Programs. It will emphasize "hands on" learning in a chosen career track and also build confidence along with increased skills. During the first three years, all students will live in dormitories at the St. Coletta campus. In later years, some students will prefer community living near the University of Wisconsin - Whitwater or Cardinal C Stritch University in Milwaukee. The college will be modeled after the Threshold Program at Lesley College in Cambridge, MA. Enrollment will be limited to 26 students. For more information and/or get on the mailing list contact Dr. Jones at 920-674-8452.
HAND FUNCTION IN THE DOWN SYNDROME POPULATION by Sandra J. Edwards, E-mail: email@example.com, and Mary K. Lafreniere is Chapter 16 in Hand Function in the Child edited by Anne Henderson and Charlane Pehoski, 1995, St. Louis, MO: Mosby. In a literature review they cite the following: the normal hand a birth contains 27 bones, but in Down syndrome it may only consist of 23 bones at birth, in addition, the development of ossification may frequently be delayed and irregular. (Erhardt, 1992; Benda, 1969). The width of the palm is the single most important variable relative to strength and that both grasp and pinch strength could most accurately reflect the actual use of the hand (Ager et al., 1984). This information would allow therapists to determine normal and dysfunctional strength and establish sound treatment goals as the anatomic components of the hand can affect the functional use of that hand. For example, in Down syndrome, the capitate, one of the seven carpal bones, is often small and slow to develop, compromising functional stability. Over time, grasp and prehension in the Down syndrome population eventually mature to "normal" levels. (Thombs and Sugden, 1991; Moss and Hogg, 1981). This may be due to the eventual growth of the carpal bones and the added stability they provide for normal hand function. To improve hand stability and grasp strength, the therapist should introduce tasks that require pronation, supination, and wrist flexion and extension, which ideally lead to consistent use of the transverse palmar grasp for writing. Moss and Hogg (1981) observed in children with Down syndrome the persistence of reverse transverse grip. None of Emmanuel's occupational therapists has measured his grip strength, which can be used to document improvement from treatment, nor have they measured his hand width. The following activities: 1 to 5 (5 to 12 months) and 6 and 7 (12 to 24 months) are suggested to enhance hand development of children with Down syndrome, where all objects and toys must be of adequate size and shape for the child's hand. 1. Reach and grasp. 2. Reach and grasp from a container. 3. Transfer an object. 4. Grasp, place, and release. 5. Grasping an object in each hand simultaneously. 6. Development of pincer grasp. 7. Placing an object on top of another. Maryanne Bruni, BSc OT(C) in Fine Motor Skills in Children with Down Syndrome (Bethesda, MD: Woodbine House, 1998, p. 143) summarizes the following fine motor development points for the infancy to 2 years stage: 1. Encourage your baby to weight bear on her arms and hands. 2. Encourage your baby to reach up with her hands when she is on her back. 3. Provide supportive sitting positions so your baby can begin to develop accurate reaching and eye-hand coordination. 4. Provide toys that your baby can easily grasp with both hands, pass from hand to hand, and put in her mouth. 5. Show your child how to take things out and put them into containers. 6. Provide activity boxes and cause-effect toys. 7. Encourage your child to point at pictures and things, and to poke her fingers into holes. 8. Encourage finger feeding, and introduce a child's spoon and small cup. 9. Provide some sensory play experiences. 10. When your child is grasping something and banging it, make sure her thumb is around the toy, not tucked into her palm.
LEARNING TO READ AT AN EARLY AGE: CASE STUDY OF A DUTCH BOY by Erik A B de Graaf (Down's Syndrome: Research and Practice 1993, 1 (2) 87-90). Two weeks after my son Emmanuel's second birthday, he began to sight-read in Spanish: papá, mamá, té and the letter H (hache) and in English: up. The case study follows David de Graaf, born on February 29th, 1984, beginning when the author and father learned about the ideas of Glenn Doman (How to teach your baby to read. New York: Random House, 1964) and subsequently followed the method espoused by Sue Buckley [S. Buckley (1983). Reading and language development in children with Down's syndrome: A guide for parents and teachers. Portsmouth, England: Portsmouth Polytechnic] and Moira Pieterse from Macquarie University in Sydney, Australia [M. Pieterse and Y. Center (1984). The integration of eight Down's syndrome children into regular schools. Australia and New Zealand Journal of Developmental Disabilities, 10, 11-20], by first applying picture and then whole word flash cards in four basic steps: matching, selecting, naming and comprehending. De Graaf states that reading proficiency might be used to increase speech production, that is, the primary objective is reading to speak. Leslie Duffen, in a personal communication, states that speech is the most important social tool, and literacy is the most important educational tool. Reading, for our children, may be an important input to the development of speech, without which social contact, beyond infancy, is virtually impossible. Not every child with Down syndrome will be able to learn to read but for those who can, reading may well improve speech and thus help with social contacts. P. Oelwein's workshop, Teaching Reading to Children with Down Syndrome at the NADS 1998 Conference provided the following sight reading program: A. Introduce individual words, moving from simple to complex responses: 1. Match; 2. Select; 3. Name. B. Increase choices, 1:1, 1:2, 1:3, and 1:4. C. Provide practice, matching, selecting, and naming. D. Make lotto games with words and pictures. E. Plan for practical use of words introduced. F. Make simple books using the words the child is learning. G. Maintain a word bank of the words the student reads. H. Continue to add meaningful and useful words. I. Play games for comprehension.
At the age of four and a half, David spoke about 70 words; at the age of 5 years and 8 months, David could spontaneously pronounce all the graphemes of the Dutch language and read well over 100 words; at the age of 8 years, David is still ahead of the reading level of his class, who are two years younger. In a recent personal communication, De Graaf reports that David is now almost fifteen, cycles 12 miles on his 21-gear to his secondary special school and cannot stress enough the importance of David's early reading abilities, enabling him to go to a regular basic school, read subtitling on TV, to work on his own with computer programs, reading books and - most importantly for him - the TV guide.
EARLY INTERVENTION IN DOWN SYNDROME: BRAIN DEVELOPMENT AND AGING is the alpha and omega chapter by Ira T. Lott in Down Syndrome. A Promising Future, Together, edited by T. J. Hassold and D. Patterson (New York: Wiley-Liss, 1999). The reader is referred to Effectiveness of Early Intervention for Children with Down Syndrome (S. Hines and F. Bennett, Mental Retardation and Developmental Disabilities Research Reviews 2:96-101 (1996)) where virtually all the studies showed some benefit, even if objective testing failed to demonstrate a difference from control groups. Lott poignantly hopes that more convincing answers about the timing of intervention will be generated with carefully designed research. Although no prospective studies demonstrate that any particular intervention effect has been established and despite the general lack of robust findings in long-term IQ advantages of early intervention for children with Down syndrome, Lott does his best to put positive spin on this sad state of affairs by citing Weiglas-Kuperus et al., 1993: In highly stimulating home environments, children of very low birth weight have been found to catch up on measures of cognitive delay and Black et al., 1995: Early home intervention stimulation programs have been shown to reduce developmental delays experienced by low-income infants with nonorganic failure to thrive. But my son Emmanuel weighed in at 7 lbs. 11 oz. and does not qualify for SSI, so a reference to infants with cerebral palsy would have made a stronger impact. G. M. Naganuma in Early Intervention for Infants with Down Syndrome: Efficacy Research (Physical & Occupational Therapy in Pediatrics, Vol. 7(1), Spring 1987) also concludes that research is needed to identify therapeutic techniques and strategies appropriate for this population so that individuals involved in the care of an infant with Down syndrome will have objective guidelines for establishing intervention programs. J. G. Wishart in Early Learning in Infants and Young Children with Down Syndrome (The Psychobiology of Down Syndrome (1988) L. Nadel, Ed., Cambridge: MA: The MIT Press) warns that lower expectations often adversely influence slow and unsatisfactory development and cites Krasner (1985) who suggests that parents of children with Down syndrome are just as susceptible as others to hold stereotyped views on Down syndrome and that young children with Down syndrome seem to learn quickly that others' expectations of them are low, which in the long run can be counterproductive, reducing the development of efficient, self-initiated learning strategies. Wishart proposes that Down syndrome development may well differ in very fundamental ways from that seen in normal development. If process of cognitive development are different in Down syndrome infants, it may be possible to improve further on their developmental prospects by more careful structuring of learning environment to their particular needs and skills, in contrast to the deficit theory, based on pyschometrically-based mental age scores, which leave little room for optimism over chances of ameliorating development in children with Down syndrome. The deficit theory is seen as a slowed-down version of normal cognitive development, only progressing more slowly to a lower ceiling; Wishart states there is very little direct evidence to support the "slow development" theory. Wishart lists: a) Lack of consolidation of early learning; b) New learning avoidance; and c) Mis-use of social skills in learning contexts, as areas where learning in Down syndrome differs from "normal" infants. Early Intervention with Children with Down Syndrome - Past and Future Issues by C. Nilholm (Down Syndrome Research and Practice (June 1996), 4(2) 51-58) is a third-order literature review, in that it reviews previous meta-analysis, that is, those that argue that while early intervention in Down syndrome does seem to yield measurable results, at least in the short term, further conclusions regarding effectiveness seem to be premature and cites Marfo and Cook (1991) that the "efficacy" issues seem to be a typical American preoccupation and early intervention can be considered legitimate on other grounds, such as in terms of humanistic values. As the "efficacy" issue has been tied to economic resources, the quest to prove the efficacy of early intervention programs has become vital. However, in this way, more important research concerns might have become neglected, such as more specific questions concerning training methods. Nilholm cites Guralnick and Bennett (1987) and Marfo and Cook (1991) where the target of intervention is no longer the child, but the parent-child dyad and therefore the need for measures of family functioning. I am trapped by the Heisenberg Uncertainty Principle: parental involvement has a positive effect on early intervention, minus the knowledge of suspect long term benefits. Not one to regret that dolphins do not swim in the Mississippi, so Emmanuel can frolic with them to enhance neural growth, I strive to ensure Emmanuel's wellbeing and independence after my death.
Recent findings from Alzheimer disease literature suggest that education may have protective effects toward the onset of dementia. It is Lott's speculation that early intervention and its potential effect on synaptic development may contribute to a neuronal network that is more recalcitrant to the onset of clinical dementia in Down syndrome at older ages.
VOCABULARY INTERVENTION FOR CHILDREN WITH DOWN SYNDROME: PARENT TRAINING USING FOCUSED STIMULATION by Luigi Girolametto, E-mail: firstname.lastname@example.org, E. Weitzman and J. Clements-Baartman (Infant-Toddler Intervention. 1998, Vol. 8, No. 2, pp. 109-125) was a study sponsored by a grant from The Hospital for Sick Children Foundation, Ontario, Canada. The results provide data on the short-term efficacy for children with Down syndrome at the one-word stage of language development, above and beyond the children in the control group who continued to receive language intervention and presumably continued to make developmental gains. Because mothers were inconsistent in their use of sign language during the first half of the program, no conclusions can be made about the children's learning patterns in terms of favoring spoken versus signed words. The hypothesis was that mothers in the experimental group would reduce their overall talkativeness, use less complex language, and use more focused labeling than the mothers in the control group. The authors state that this is the first controlled study to document the positive effects of treatment on target word learning with children with Down syndrome and provides preliminary data for the effectiveness of using parent training and a focused stimulation approach. Future research will be needed to demonstrate whether this model produces long-term changes in vocabulary and language development. The treatment program was from Hanen® [http://www.hanen.org] with three modifications: 1. From a list of 20 target words, 10 were selected as most likely the child would be most motivated to learn. 2. New routines were introduced that permitted modeling the target words many times, e.g., repeating the word at least 5 times in a short interaction while the child was focused on the object. 3. The use of signs, as words were spoken, to be consistent with the objectives of the children's preschool programs. The mothers in the experimental group underwent training to use naturalistic strategies throughout the day that were associated with optimal language development. It is suggested by L. Smith, et al. in The Emergence of Language Skills in Young Children with Down Syndrome (The Psychobiology of Down Syndrome (1988) L. Nadel, Ed., Cambridge: MA: The MIT Press) that child-parent interaction factors may have longer-term effects on the speech development of children with Down syndrome. It appears that young children with Down syndrome make their own deficient learning environment by giving their parents less opportunities to interpret their behavior as communicative. Parents should be trained to encourage the regulation of joint attention to advance the acquisition of shared meaning between parents and their young children with Down syndrome.
MY SISTER IS SPECIAL. Following is an introduction provided to us by the author, Larry Jansnen, E-mail: Larry833@aol.com.
After reading My Sister is Special to a third grade class, one little guy raised his hand and asked unabashedly, "Is it contagious?" What a wonderful opportunity to talk about how we are all different and special; to overcome fears and prejudice with fact and dialogue; and to build a bridge of communication with children.
When my daughter, Rachel, was born in 1978 with Down syndrome, the doctor actually asked me if I was going to "take her home" or "put her in a home." I was stunned. She was my daughter; of course she would be a part of the family. I didn't know too much about "mongoloids" as they used to be called, so I looked for a book that would help. I wanted something that would explain things to me and to my children about disabilities.
I didn't find exactly what I wanted, so I was motivated to write My Sister is Special, which was published in 1984. It sold 30,000 copies, and was out of print for several years before I was called on to do an update in the fall of 1997. I am very pleased with the outcome. In it, I talk about disabilities in general and Down syndrome more specifically.
As you can see, it is an excellent way to start a discussion with preschool through elementary children. I have read the book for many classes at elementary schools, and it opens frank communications that lead to the kind of education which overcomes prejudice and fear. Down syndrome support groups around the country have also found this a useful tool in talking to their own children, relatives, and friends. It is a bridge to discussion, open communication, and helps pull people together.
Rachel went to Special Education classes. She is trainable handicapped, which means she has lower function than others with Down syndrome do. There is a wide range of capabilities. She did get to go through the traditional "graduation" at her high school, walking across the stage in cap and gown-a highlight of her life. She now attends Chisolm Life Skills Center, a preparatory program for special education people to prepare them for life and jobs at different levels. I suspect Rachel will always live at home due to her limitations-especially in speech. She is now 20 years old, and a delight, most of the time. She has a good sense of humor and a loving personality. I am blessed to know her.
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, was recently reviewed Barry M. Mitnick in December 1998 issue of Down Syndrome Quarterly. In Chapter 3 Kliewer describes a news bulletin that appeared in Exceptional Parent magazine that described a film about a child with Down syndrome ("What's Happening", 1993). The brief item suggested the child had learning disabilities. In response, an irate member of the Learning Disabilities Association of America demanded that Exceptional Parent editors be more sensitive to the learning-disabled population by clarifying that Down syndrome is actually a form of mental retardation, not a learning disability and while admitting she knew nothing about the child or film in question, she stated, "To equate learning disabilities with retardation is to do damage to a generation of hard-fought and hard-won initiatives of the Learning Disabilities Association and parent-members like myself". The editors of Exceptional Parent responded by thanking the writer "for an important correction!"
Mary Wilt, E-mail: email@example.com, in the on-line Parent Advocate News (Vol.1, No. 5, November 1998) in her essay, Disability Pecking Order also refers to this incident, tactfully not identifying the magazine in question, as follows: Her child had learning problems, but thankfully was not mentally retarded and she was tired of people confusing the two. Is there a pecking order in the disability community? Are some disabilities better than others? Is a learning disability better than mental retardation? Is the person with LD therefore better than the person with MR? Do kids with LD then deserve more services than kids with MR? Is a person in a wheelchair who doesn't have MR better than a person in a wheelchair who does? Then there is the Mark King saga, who has Down syndrome and is hearing impaired, and has been denied entrance to the Maryland School for the Deaf because of restrictions concerning multi-handicapped children in the admission policies.
A disability community where discrimination and prejudice exists is on weak moral grounds to demand or expect anything.
FORTHCOMING & NEW BOOKS ON DOWN SYNDROME
Bryan, J. (1999) Living with Down Syndrome. Raintree/Steck Vaughn. ISBN 817255699.
de Graaf, E. A. B. (1998) Down Syndrome Behind the Dykes: Research in the Netherlands. Amsterdam: Vu University Press. ISBN 9053836101.
Gordon, M. A. (1999) Let's Talk about Down Syndrome. Rosen Publishing Group. ISBN 0823951979.
Lorenz, S. (1998) Children with Down's Syndrome: A Guide for Teachers & Learning Support Assistants in Mainstream Society. David Fulton Publishers. ISBN 1853465062.
Riemenschneider, S. (1997) Down Syndrome Pioneer. Self published. Chambrel, Suite 149, 100 Brookmont Road, Akron, OH 44333 or contact the author's editor and advocate, Dr. Marion Stroud at (303) 336-1654.
Utterback, R.O. (1997) Through the Eyes of Tim. Self published. ISBN 096605590X.
RECENT VIDEOS ON DOWN SYNDROME
Angles Do (1998) Family Planet Music, P. O. Box 950760, Lake Mary, FL 32795-0760. (800) 985-8894, E-Mail: firstname.lastname@example.org
Inclusion: Jon Meets His Expectations (1998) 22 minutes. Mr. Reid, Swampscott High School, 207 Forest Avenue, Swampscott, MA 01907.
Journey of a Lifetime... Beginning with the End in Mind (1998) 60 minutes. Karen Gaffney Foundation, 1328 NW Kearney, Portland OR 97209. (503) 973-5130, Fax: (503) 973-5130, E-mail: email@example.com, URL: http://www.karengaffneyfoundation.com/
Promising Future Together (1998) 20 minutes. National Down Syndrome Society, 666 Broadway, 8th Floor, New York, NY 10012-2317. (800) 221-4602
BILINGUALISM AND DOWN SYNDROME. In Nonverbal Communication and Early Language Acquisition in Children with Down Syndrome and in Normally Developing Children (P. Mundy, C. Kasari, M. Sigman and E. Ruskin, Journal of Speech and Hearing Research, Vol. 38, 157-167, February 1995) 13 out of the 37 children with Down syndrome recruited for this study were from English/Spanish bilingual homes. The authors state in the preliminary analysis: The most important findings here may have been that the English-only versus English/Spanish bilingual subgroups did not display differences or initial or follow-up language scores, nor did home language experience interact with group membership to affect Reynell performance. The data of this study suggested that some of the processes involved in the expressive language delay of children with Down syndrome appeared to be associated with problems in an earlier nonverbal phase of communication development, therefore supporting the hypothesis that the acquisition of nonverbal communication skills provides an important foundation for the emergence of language. The results suggested that sex, language in the home, ethnicity, and mother's level of education were not significant effects in the outcome of expressive language in children with Down syndrome.
PEDIATRIC NEUROLOGIC PHYSICAL THERAPY edited by S. K. Campbell (New York: Churchill Livingston, 2nd Edition, 1991) has Chapter 6 dedicated to Down syndrome by S. R. Harris and A. M. Shea which focuses primarily on the physical therapist's assessment and treatment of children with Down syndrome and case studies are used to exemplify the therapist's role. One of the primary goals in conducting physical therapy assessment is to establish programming objectives that will serve as the framework for the plan of treatment. Qualitative assessment of older children with Down syndrome should include gait analysis and task analysis of fine motor activities, such as shoe tying or pre-vocational skills. Physical Therapists should provide musculoskeletal assessments such as posture screening and range of motion evaluation of hips and knees and should be acutely aware of the increased risk for atlantoaxial dislocation. Citing E. T. Bersu (1980) anatomic research on Down syndrome revealed frequent absence of certain muscles, such as the palmaris longus; extra muscles, including the supernumerary forearm flexors; and the lack of differentiation, i.e., fused together, of distinct muscle bellies for zygomaticus major and minor and levator labii superioris which are facial expression muscles.
The remaining material was written by GRJ:
AMERICAN ACADEMY OF FAMILY PHYSICIANS/CME Theodore Kastner, M.D. edits EXCEPTIONAL HEALTH CARE and distributes printed quizzes which lead to Continuing Medicine Education credits for family physicians who successfully answer the questions derived from recent issues of EHC. One such question relates to treatable cases of dementia in adults with DS and another relates to tumors in DS. EHC costs $55 per 12 issues and past issues are available at less cost (45 Park Place South, #275, Morristown, NY, 07960-9886). Dr. Kastner believes: (1) It is difficult to diagnose AD in people with DS; (2) Other illnesses than AD are likely to be associated with dementia in people with DS; (3) the younger the patient, the more likely the presence of a treatable cause of dementia. We think EHC is succinct and clear. Dr. Kastner's articles on the effectiveness of early intervention; the management of epileptic aphasia, tic disorders and anxiety; managed care, children with special health care needs and the use of secretin in Autism are a ll well-documented and clear. EHC not only helps physicians consolidate and increase their knowledge of developmentally delayed people's health care needs, but they are great help to general enhancement of awareness of such needs by the general public.
DICTIONARY OF EUPHEMISMS. Both Down's syndrome and Person with a disability were listed and seemed adequately defined. I couldn't see why they were listed, but after reading the Introduction, I concluded that the author listed terms she considered euphemisms and recognized many would be challenged. Her first listing was abattoir which may be a euphemism in her mind and was a useful word in Panama, but not one used much in the USA since it is a French word. I certainly don't recommend or endorse this book.
AJMR '98 V.102 #6, PAGES 547-551. It contains a research report that shows the prevalence of electrophysiological carpel tunnel syndrome (CTS) is high in individuals with DS. Forty-eight of the 85 people in Aarhus, Denmark (population 614,000) with DS participated in the study. The researchers concluded that CTS arose spontaneously in most subjects. They say "Carpel tunnel syndrome is easy to detect with non invasive methods and easy to cure." Reprint requests go to JensErik Just Christenson, Klinesk Neurofysiologisk AFD-30-63 Rigshospitalet Blegdonsvel 9, 2100 Copenhagen, Denmark.
SUPPORT GROUPS. I noticed in the Aberdeen American News (11-9-98), a four paragraph article on a new support group and thus I want to again encourage anyone without such a group within commuting distance to start one. In addition to local newspapers sometimes the local cable TV company or a local TV station will also announce the formation and meetings of such groups without charge. Robert started a PEOPLE WITH DOWN SYNDROME group a dozen years ago, and although it didn't do what we had hoped it would, he put money he received in its name at a local bank and has had free checking since then. Also, the organization with our address and phone number has been listed without charge under the "community services" section of the phone books. Personally, I was active in the ARC support group long before he was born in my hometown (Grand Forks, North Dakota) and have been active in the Brown County Arc for the 20 years we have been here. There have been many advantages and many great people that otherwise we would have missed. Give it a try; it would be as easy to withdraw as it is to affiliate. The new group has behavior problems as the catalyst, but if you start a group you can establish the parameters and target any problem that a support group could likely help with.
SEE ROBBY RUN This article is on the last page (132) of the March RUNNER'S WORLD. Robby has DS and is 10 years old.
FIBROMYALGIA HANDBOOK. The exact title of the second edition by Gayle Bockstroms is WHEN MUSCLE PAIN WON'T GO AWAY. It only costs $13 and is published by Taylor of Dallas (1550 W. Mockingbird Lane, Dallas, TX 75235. She likely has had the condition for several decades. She mentions Dr. Rubin in the Introduction, and although he is recognized as a co-author his personal contributions to the book are not clear; his general address is given at the Texas College of Osteopathic Medicine, but there are no exact addresses or phone numbers. However, the book contains several hundred resources with excellent contact information. Gayle notes she finally got full disability and no longer has to worry about paying bills each month. She says: "Don't let FM control your life." She endorses the Arthritis Foundation. We definitely recommend that if you are concerned with FM or any of the other components of a neuroendocrine-immune dysfunction you get this book.
SPECIAL OLYMPICS WORLD GAMES, NORTH CAROLINA '99 Robert bought a neat sports shirt distributed by "Team USA - S. Dakota" and wore it to the dinner and dance at the S.D. State Special Olympic Bowling Championship. Joan Meeks wrote that Amy did well with the Utah Special Olympics and enjoyed seeing her friends, many of whom she now sees infrequently since graduation from high school. We noted many of our old friends who volunteered to make the SD Special Olympics Bowling Championship a fun experience for all.
MIRACLE KIDS The July PARENTS has this article by Muborak Dahir and of the 4 heroic stories Kelly Gamble age 2 with DS, is the star of one. I believe that Dahir's estimate of the annual number of DS live births in the U.S is about 250,000. One mother says her support group gave her answers to all her questions.
CALL FOR PAPERS. Contact Leanne Fenez, St. Amant Conference Program Chair, 440 River Road, Winnipeg, Manitoba, Canada R2M 329 for details. It will be October 8, 1999 and we believe it will not only be worthwhile for you, but will make a major difference for people with mental disabilities. We likely could schedule several sessions on DS; if this interests you and our help is sought be assured. Write "right" now for particulars!
DAKOTA LINK AND TRANSITION NEWS. We don't think this is a free subscription. It is mailed and produced quarterly by Black Hills Special Services, but send correspondence to 435 S. Chapelle, Pierre, SD 57501. Dave Vogel is the Director of both Dakota Link and the Transition Project; he has been blind for 25 years.
AAMR MEDICINE DIVISION. Sandra Friedman, M.D., M.P.H. is the President and Robert is one of the members who gets her newsletter. For many years, her predecessors in this association were the only professionals doing research and clinical work with developmentally disabled people. Robert sends her a copy of his publication and we both ask physicians with questions or breaking information about such conditions to Email her at: firstname.lastname@example.org or by phone at (617) 355-6513. Their annual meeting will be May 24 - 28 in New Orleans.
"A TUMOR PROFILE IN DOWN SYNDROME." AMERICAN JOURNAL ON GENETICS. 1998;78:207-216. This article demonstrates that a wide range of information must be used to develop health promotion and disease prevention priorities for specific disabling conditions. For Down syndrome, this study suggests that clinicians must be alert to the occurrence of tumors developing in the fetus, the neonatal period, and early childhood. (So says Dr. Kastner who edits EXCEPTIONAL HEALTH CARE (Suite 275, 45 Park Place S., Morristown, NJ 07960-9886).
AAMR MAY 24-28 NEW ORLEANS MEETING. AAMR is the only interdisciplinary professional and scientific organization dealing with mental retardation. The association has 16 divisions and special interest groups including Administration, Community Services, Communication Disorders, Education, Gerontology, Legal Process & Advocacy, Leisure & Recreation, Medicine, Nursing, Nutrition & Dietetics, Physical & Occupational Therapy, Psychology, Vocational Rehabilitation, Religion, Social Work, and a DS Special Interest Group.
Copies of the Preliminary Program, including housing and registration forms, may be obtained by writing to AAMR, 444 North Capitol Street, N.W., Suite 846, Washington, DC 20001-1512 or by calling AAMR's National Office on its toll-free number, 800-424-3688, or by Email email@example.com.
PARENT CENTERS' ALLIANCE. I don't know the politics or other motivation of the key people behind the organization that published this new periodical, but Paula Goldberg of the Pacer Center is the executive (4826 Chicago Ave., S., Minneapolis, MN 55417-1098) and is undoubtedly involved as that is the return address. V1 #2 contains an extensive update on IDEA. This issue says the Alliance was started with a 5 year 1.8 million annual U. S. Department of Education grant. Another partner in the coordinating Alliance is NDSC. The Alliance Web site is http://www.taalliance.org and Email firstname.lastname@example.org. You can call Joel Johnson at (888) 248-0822 (toll-free) if you need help in getting the Web site or wish to communicate in regard to the Alliance.
OUR TARGETED READERSHIP. Victor Bishop asked who it was before he joined us and the answer he got was uncertain except for the point we don't write down to anybody, and we don't want to duplicate the seeming feat of one father of a child with DS, who is syndicated and must delight in including in a couple of words in each article that few can understand without a dictionary. I will send a copy of his recent column on the careless trashing of parts of 54 fetuses titled "Many Who Favor Right To Life Are Kindly, Peaceful:" which is provocative and an unstated warning to all who "hope" for good things that hoped for anticipated good results of laws have to be enforced. Anyhow, closer to our subject, let me state that if you have views on what we should be doing and about whom, please direct them to Victor. Since I started writing about developmentally disabled people and the condition at fault in '72, I have attempted to identify and encourage free individuals and organizations with progressive views to expose more people to those views and vice versa. I'm happy with what has occurred. Most of our papers go to Californians followed closely by New York and although I have lived in both states as well as Illinois, Washington, and others, along with the Panama Canal Zone and Japan, I don't attempt to target a geographical area. I did bombard South Dakota, but North Dakota has produced more subscribers than either Minnesota or South Dakota. Some subscribers are well educated and sophisticated whereas others have been on welfare, in prison and others, hopefully, on their road to better things. I suspect two grandparents and some parents of people with DS have been our most significant principal supporters, but all we ask is $1 a copy as we can continue if that amount is received from those who receive copies and ask those of you who don't get anything from our publication to let us know so we can quit wasting paper and effort. We thank all who have sent us any funds or have provided visibility to the publication.
MAGGIE'S HEART SURGERY AND ADOPTION. The December McCall's uses 8 full color pictures and only a couple of paragraphs to tell the story of Leah and Joe Pullaro, who adopted Maggie knowing she has DS. Two years ago in "The Couple Who Couldn't Stop Giving" McCall's told about the family (which included two of their own children) who had adopted three special needs children. The Pullaros were told Maggie had DS, and the need for heart surgery, (which Maggie got two weeks after the adoption). She amazed the doctors with her quick recovery. Maggie will 6legally be a Pullaro in a few months.
ADD BIOLOGICAL SIGNATURE. Stanford researchers in the PROCEEDINGS OF THE NATIONAL ACADEMY OF SCIENCES says 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."
DS - HOW FAR WE HAVE COME, BUT THE END IS NOT IN SIGHT! In our '79 Funk & Wagnall Encyclopedia (the year we moved to Aberdeen to retire), they still continued to reference the condition by the stigmatic name but in parenthesis it says (referred to as Down's Syndrome in medical literature). Now it is listed as Down syndrome and the stigmatic former label isn't even mentioned. However, then it still was said to be "accompanied by severe mental retardation." It says "the intelligence quotient usually ranges between 20 and 50 and in rare cases reaches 65, whereas I suspect with current methodology children with DS are recognized as being only mildly retarded with I.Q's rarely recorded within the range cited. It also says "Mongolism is not amenable to medical treatment but they can expect to live much longer than they did in the recent past when the average life expectancy was about 14 years." Thanks to proper recognition from the medical community, people with DS have had many associated maladies corrected or are under treatment. I suspect their life expectancy is now 50 or more years and when new cardiac procedures can be applied through Bout the country it will rise again. More and more people of Robert's age and background are continuing their education at sheltered workshops, adult basic education programs and in technical colleges and universities, although few of the largest universities have tailored programs for them. I remember years ago that the doctor who was perhaps the USA's early interventions and education leader said: "We haven't found a limit" to the question of "How much can a child with DS learn?" Robert enjoys his weekly ABE two-hour course and all of his academic courses at the ATC as well as the medical, social and recreational programs. He continues to progress. Consider helping the closest DS Support Group a little more. People with DS could start the new century on a higher plateau if their self-esteem is enhanced and their communities provide services that might enable them to live a more normal life.
BACTERIA. In our last issue we mentioned Dr. Bakin's research report relating to AD. As promised I sent him that copy of our publication and Emailed him information on my friend Dr. Al Rosanova's '72 AAMD presentation on the Possible Viral Etiology of DS. I don't recall Dr. Rosanova mentioning the possibility of the organism he found in cultures from people with DS being a bacterium, but perhaps that is what he found. In any case, I recommend that you look up bacteria in a library or at least check it out in an encyclopedia. They were listed as among the smallest living cells in our encyclopedia; they were considered the course of all infections until viruses were found. More than a century ago Pasteur found that heat could stop the virulence of anthrax bacteria.
IDEA REGULATIONS. Although Congress set a December 1, 1998 deadline, they aren't out yet. If interested in special education, we recommend that you ask your State for a copy of the regulation when issued.
TURNING VS PROGRESSING. Scot Hicks in an article on the dedication of the new multi million dollar facility for Hillsdale Academy (he is the Headmaster) included the following close to their Morning Prayer:
'Tis a gift to be simple,He concluded with:
"Tis a gift to be free,
"Tis a gift to come down where we ought to be...
(Where) to bow and bend we shan't be ashamed,
(And) by turning, turning, we come round right.
UND PRESIDENCY OPEN. As a graduate with a scholarship fund in my name, it is logical that I hope progressive people concerned with superior post secondary education and conversion of disabled to productive people, apply. It is the only ND institution offering degrees in medicine and law; it has more than a dozen other doctoral programs. Applications and inquiries should be sent to Dr. Harvey R. Knull, Box 8178, Grand Forks, ND 58203. Although not a common event, the UND recently accepted a $100 million dollar gift from a former goalie, Ralph Englestad, much of which will be used to build one of the best hockey arenas in the world. We have published several outstanding treatises by advanced UND Special Education students.
Northern State University just inaugurated Dr. John Hilpert as the 14th President and we think he will be both challenged and rewarded. Part of my motivation for encouraging applications for the UND presidency comes from the following paragraph on p. 14 from the new book titled THE MOTHER'S BOOK OF HOME MEDICAL TESTS FOR INFANTS AND CHILDREN: "There are some disorders that, unfortunately, cannot be corrected. Among these are the chromosome abnormalities such as Down's syndrome, or mongolism, and deformities involving the spinal cord--most notably, the condition known as spina bifida. This malformation of the spinal cord leaves the nerves that provide feeling and motion to the lower half of the body totally disrupted. Most chromosome disorders and major spinal cord abnormalities can be diagnosed early enough in the pregnancy so that a decision about continuing it or not can be made." Dr. Hoessler should have prefaced it with the words "At this time" and should have omitted the archaic term mongolism or indicated that it was a former referent. Actually, the negativity of that term fits in with the negativity of the paragraph. I could chronicle many medical problems that have been corrected, but two of the biggest diseases in my lifetime were tuberculosis and polio. Such conditions would never have been treated if all professionals just gave up. I don't want to suggest that descendants of Genghis Khan might attack the USA if we continue to stigmatize them with a medical condition deemed disabling by our Social Security system, but why agitate anybody? All disabling conditions can be ameliorated, but it likely will take professional education.
THE GALE ENCYCLOPEDIA OF MEDICINE. There are 5 volumes in the '99 book and you can write them at 27500 Drake Road, Farmington Hills, MI 48331-3535. The Down syndrome coverage is quite good. However, educators will have to respond as to whether children with DS fall within the trainable or what I suspect is generally true, the educable range. It is a good medical encyclopedia, but if there is any question check the matter out with your physician.
CDC'S FIRST 50 YEARS. An article on this by the Director (David Satcher, M.D. Ph.D, 1600 Clifton Road NE, Atlanta, GA 30333) states that CDC grew out of WWII malaria control programs and now encompasses programs to reduce chronic conditions and congenital defects. Several years ago, as (a result of their studies on DS, I announced that the incidence had decreased from 1 in 600 births to 1 in 1,000. Why not write CDC about any particular condition of concern to you?
REGIONAL DS SUPPORT. Because there are few national geographic boundaries to states we recommend that existing groups consider expanding their service area to include nearby states or an expanded territory within the state. NADS (National Association For Down Syndrome) is an example. Actually, it is the oldest "National" DS organization in the USA, but rather than push its "National" role it was a primary factor in getting the DS Congress, now NDSC established. It since has expanded services greatly to those within the broad multi-state area and I personally feel many remote states (such as the Dakotas) have been served well from them even though we have a few local DS support groups. They have had outstanding annual DS conferences for three decades and have published accurate informative news letters even longer. They had 862 people attend their October conference from a dozen states. The Adult DS Center (1255 Milwaukee Ave., Glenview, IL) contains a waiting room open to all NADS members which contains a VCR, xylophone, video, bulletin board and the NADS lending library with books as well as a binder with articles by Drs. Chicoine and McGuire. We strongly recommend that everyone within their service area send them $15 and join with them in their work for people with DS (P. O. Box 4542, Oak Brook, IL 60522-4542).
NATIONAL LIBRARY OF MEDICINE (NLM). It is the world's largest medical library. The NLM has more than 5 million items in the collection, and many of its databases are available to the public on the World Wide Web. The NLM maintains several project groups, including new research in telemedicine, biotechnology, applied informatics, and next generation Internet. This is where I was the night Robert came home after his birth. Doctor Hans Zellweger taught me how to find their facts on DS.
STRATEGIES FOR TEACHING EXCEPTIONAL CHILDREN IN INCLUSIVE SETTINGS. Even if you aren't an educator you likely know someone who could profit from this book. Inclusive education is expanding. A librarian probably can get it through ILL or from the Love Publishing Company in Denver.
WHAT READING RESEARCH TELLS US ABOUT CHILDREN WITH DIVERSE LEARNING NEEDS. Availability of this '98 book can be found through Erobaum Publishers, 10 Industrial Ave., Mohwah, NJ 07430.
VISIBILITY. DOWN SYNDROME AMONGST US gave us a half page plug. We appreciate all accurate references to our publication. The only funds we have received in February was a $5 check from Jacob Kagan but we anticipate a total of $100 before putting out our next issue so unless you are a current subscriber, please send at least $1 if you want the next issue. The "plug" said I started this publication, but Lois Sollie now Professor Emeritus of NSU, (who then was the acting chief of the cognizant function at NSU), was the Editor and either founded it or was the co-founder. Previously, I had such a relationship with Mary Coleman, M.D. when we founded DS-PAPERS AND ABSTRACTS FOR PROFESSIONALS. Prior to that, I was the founder of DS NEWS, which is still being published by NDSC almost exactly the way I did it. C Lois still proofreads every issue and we again want to also recognize: Peggy Mueller, who proofreads; Donna Steckler, secretary at the Zion Church who produces the copies; Jim Rappe of the NSU print shop, who complies with the USPS regulations and gets the publication to them; and to the USPS for getting the issues to you. The plug recognized Victor Bishop, but please note that he provided pages 5 - 10 of this issue. Don't forget Robert is the manager, who collates the paper, and signs all checks.
MOTHERHOOD AFTER 35. This is the first book on this subject I have endorsed since Robert was born; my wife was older than 35 when Robert was conceived. I was pleased to conclude that the Obstetrician was an anti-abortionist. For a time, after the birth I did volunteer work for the March of Dimes, but felt that generally "prevention" at that time actually was a death warrant for fetuses that were unusual. This seemed an affront to the Commandments and the frequent entreaties in The Bible to "fill the earth." Now, I recognize that though adoption has solved lots of problems for lots of people, I recommend that course for anyone pregnant if it seems likely that a baby can't be nourished. However, there are some pregnant women who probably should consider abortion.
On page 101 of the captioned book, the mother had gone through a series of tests in a previous pregnancy so decided that even though her chances of having a baby with DS had gone up from 1 in 287 to 1 in 100, she opted out of all further testing. On page 97, there was a communication problem with screening test results; (something similar was described on pages 89 and 90), and it clearly stated that for every ten with a raised AFP level, nine will have a normal baby. On page 79 there is an overview of DS and the story of a mother, who was so mad she refused to see the baby until one day she looked at her sleeping and fed her; when her husband came in she said: "We have to keep her - she needs us more than anyone." The husband said, "That's what I've been waiting to hear." The author, Maggie Jones, has three children and is a freelance writer. The book is published by Fisher, 4239 W. Ina Road, Suite 101, Tucson, AR 85741.
FORTHCOMING ARTICLES. This subject will receive double coverage in our next issue. Of course, if you have items for which you seek reactions, contact either Victor or myself:
DISABILITY FUNDING NEWS will be extracted from and pertinent details on contacting them will be provided.
GENETIC DATABASES AND REGISTERS will be discussed with pros from Icelandic officials and their new law and cons from scientist Bogi Anderson of the University of California.
Recognizing Speech Disorders
Getting Ready to Write
The Kiplinger Washington Letter
The Genetic Gods|
Robert's Heart Monitor
Bottom Line Persona
|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: June 1, 1999.|