|People with Special Needs Down Syndrome Report||
|VOL. 19 #2||ISSN 0731- 566X||May 1999|
CHOLINERGIC THERAPY FOR DS. Most of the following information comes directly from a research letter on pages 1064-5 in the 3-27 LANCET and is the only published letter on the subject according to the authors. The address at the bottom of the letter is the DS Clinic, Box 3528, Department of Pediatrics and Clinical Trials Unit, Department of Psychiatry, Duke University Medical Center, Durham, NC 27710. The authors enrolled four adults with DS and family members living in the same home in a prospective open trial of donepezil (the brand Aricept was approved three years ago for people with Alzheimer's disease and you can get written information on it by writing P. O. Box 3002, Colmar, PA 18915-9919). The authors point out that there are a number of similarities between DS and AD, including cholinergic deficits. Based on the results of their small observational study, the authors recommend a larger randomized placebo controlled study of cholinergic therapy on DS. The article includes age, sex, baseline intelligence quotient, weeks on donepezil, and the three sub scale ratings (communication, daily living skills and socialization) both at the baseline and after six months. I recommend that you ask your librarian to help you get a copy of the full letter.
MAY READER'S DIGEST DS ARTICLE. They claim to be the largest circulation magazine in the world and their periodic coverage of various disabilities including DS may be one of the reasons. Meg Laughlin's "WHAT LOVE CAN BUILD" on pages 78-84 is about Agustin, who was born 6-22-88, and was the first child of parents who had both been married before. Delia hid the DS from the dad and wrote on a note: "You and I are going to share the world that a tiny chromosome will not control us." What a wonderful attitude! Carlos realized there was a problem when Agustin didn't talk at 20 months and Delia spilled the beans.
A staff member at the University of Miami Mailman Center for Child Development told Carlos that Agustin at age three was unusually bright for a child with DS, and the most important factor in how well he did would be how his parents and teachers worked with him. (I heartily endorse that philosophy). Carlos is a machinist and he wanted Agustin to follow the trade, too. By age 5 Agustin was fluent in English and Spanish with an I.Q. of 70. At 6 he could read and write. At 7 he started having problems, so Carlos helped him build a child's crane, and devoted more time to him.
One day Agustin drew attention to a Case Tractor and although Carlos wanted to take time off work to help build the tractor, Delia was skeptical until she read "Ride A Wild Horse" by Hannah Kahn, whose daughter also has Down syndrome:
"Ride a wild horseDelia sold her piano and the sofa to help with finances. Carlos determined that the tractor would be like the picture of the Case, but scaled down and with a 5 HP motor so Agustin could drive it. They built it working all day with Agustin putting in and tightening bolts and suggesting parts that could be used. After six months the Carricaburu's had an inaugural drive with Agustin as the first driver. Agustin did what the author said "few people with DS get to docontrol."
against the sky
hold tight to his wings
before you die
whatever else you leave undone
once ride a wild horse
into the sun."
SPECIAL SCOUTS. It's a national program, but few Scout Districts can find scoutmasters or sponsors. One branch of the LDS church sponsors the troop of which Lew Hathaway has been the scoutmaster for seven years. There are 27 scouts in the troop, aged 12 to 62. It includes 5 Eagle Scouts with four more on the way. He says "They love you no matter what and they don't hold grudges." From the column Joan Meeks sent, I gather all 27 may have DS, but it doesn't flatly say so and to my knowledge the Boy Scout organization doesn't endorse a program exclusively for people with DS. If you are inclined to try to help establish a similar program in your area, you can contact Charles Trentelman, who wrote the article, via firstname.lastname@example.org.
SEGREGATION DISTORTER GENE (SI). Many readers understand why I seek information on natural methods of preventing any one chromosome getting more than one gene and an article by James Crow in the 3-12 SCIENCE relates somewhat, but the author, a University of Wisconsin genetic staff member, writes about a gene that comes from a fruit fly and not a human. Some day geneticists will find out how and why trisomies occur in humans.
BOOKS AND VIDEOS ABOUT PEOPLE WITH CHALLENGES. Write McGowan Publications (P.O. Box 3, Brooks, GA 30205 or call 800-897-0999) for a free catalog. Many were published by Woodbine so call them too 800-843-7323 and get their newest catalog.
CHILDREN NEED BOOKS AND ATTENTION. I believe in early intervention and can't see where an infant or child could be hurt by it. I also think some developmentally delayed children can't share or show their appreciation for their caregivers, but nevertheless gain from attention. A few minutes of thoughtful attention daily may be enough; neglect is a killer. Ability to love, trust and develop lasting relationships doesn't come instinctively (gleaned largely from a Knight Ridder Tribune article by Elsa Arnett). The need for books might be an overstatement, but the value of books can hardly be denied. Write to the National Assessment of Educational Programs and ask them (your librarian can get the address or contact information) or contact Claudia Brinson at P. O. Box 1333 Columbia, SC 29201 - Email email@example.com. Read to your children and read to yourself!
MICROORGANISMS. The April BIOGRAPHY (pages 52 - 58 ) article is about them and Dr. Gerba. It says they are the third leading cause of death in the U.S. He identifies the leading offender which are mostly bacterium. He is a microbiology professor at the University of Arizona and says they will be the leading cause of death in the coming Century. Page 57 contains his 13 rules for combating contamination. BIOGRAPHY costs $18 for 12 issues (P. O. Box 7418, Red Oak, IA 51591-2418).
MOST WOMEN WITH BIRTH DEFECTS HAVE NORMAL BABIES. That is the caption on an AP article I read in April and since I had pondered the article in NEJM (NEW ENGLAND JOURNAL OF MEDICINE), this is somewhat an overview of both. The basic reason I kept the original article is I thought either Victor Bishop or I might be able to elicit from the senior author the basis of the statement on page 1059 of NEJM that: "For a few defects (e.g., Down's syndrome) the ratios were low despite high survival rate." I'm quite sure it relates to survival and number of births, but if they have the facts on all the women in Norway with DS, who gave birth between '67 and '82, with rates of survival and childbearing computed well into the '90's, along with the risk of birth defects in their offspring, it would be quite revealing. They grouped their subjects based on 24 categories of birth defects.
SSI. The Credit Union was supposed to automatically transfer Robert's share of our housing expense (currently $450) but it was inadvertently not done and that caused his resources to exceed the $2,000 limit. I filed an appeal, but SSI said because the transfer wasn't made he wasn't entitled to SSI for the month of March and will have to repay what he has received. Previously, they did much the same, but they then corrected an underpayment by Social Security and the month that they made the correction had to be repaid. Don't count on Social Security for compassionate consideration!
U. S. SENATOR DASCHLE LEADS NSU FORUM ON EDUCATION. On April 1, with little notice due to the Senator's national commitments, the conference room at NSU was filled and he made his presentation. It was so compelling that about all the students and faculty members present joined in on searching for and explaining ways to improve the national education program. It was taped and the video shown on the NSU channel so all interested in the area could see it. We publicly thank NSU, Senator Daschle and Dr. Paul Deputy for their efforts. If you are concerned with the overall national educational programs you can write Senator Daschle directly at the U.S. Senate or via us. We have the picture of the Senator and Robert when Robert graduated from the same Aberdeen Central High School that the Senator had graduated from a decade or two earlier. We know he is sincere and improvement of education is one of his top priorities, including, of course, special education.
FARE FOR ALL. It is a self-help, non-profit food program in North Central States. The Aberdeen program has expanded since its inception. All qualify who volunteer for two hours of volunteer service and pay $16.50 for about twice that value in wholesale food. Call 800-582-4291 if you want information on starting a program. Robert and I have enrolled for the "regular" 13-17 item package. They also have several other packages ranging in price from $8 to $16.50. Distribution takes only a few minutes once a month. Mike Port started the program 13 years ago and is the current Director.
NEW DS SUPPORT GROUP. I attended an inaugural meeting at the Methodist Church in Aberdeen and believe they will become a viable group. It is first ever in North Central South Dakota and although the sparse population will likely prohibit it becoming as large a group as the one my family and I joined in the DC area when Robert was a baby, many people will find answers, have others to communicate with, and hopefully, add to the prospects for people with DS. No membership parameters have been established yet, but it will likely target parents of children from birth through post secondary age. Education was the major item at the meeting and I hope Steve and Sylvia Trident who have been subscribers for most of Tony's life got help in resolving the question of whether to press for inclusive education for him in the nearest elementary school where his sister attends or stick with the segregated system that Robert participated in. Sylvia approved the preceding comments. Everyone had their "say" or the opportunity to be heard. We will be pleased to print articles about other DS support groups and eagerly request them.
THE CIRCUIT. This free publication comes from the SD Parent Connection (3701 W. 49th Street. #200B, Sioux Falls, SD 57106-4209). Naturally, they accept and need donations. Their Home Page is www.sdparent.org. They have expanded over the dozen or so years I have known the organization, but they are still trying to establish a statewide database of parent support groups and in the Spring issue I learned for the first time of their efforts to produce a directory of families in the state who have a child with disabilities. It also noted several groups that relate to and are perhaps affiliated with public education. They identify the site: www.freedom forum.org as the site to get on a free mailing list and obtain a copy of AMERICA'S TELABILITY MEDIA. Similarly, contact for free Cleft Palate Foundation information is given at 800-242-5338 or firstname.lastname@example.org. Also, for those wishing to be included in a study of family involvement in services for children with mental health problems they list the Research and Training Center on Family Support and Children's Mental Health http://rtc.pdx.edu as the place to contact.
BOILS/FOLLICULITIS? Robert has had sores that have been called Folliculitis, Boils and even a form of Impetigo (however they aren't contagious), since he was a child. The April MAYO CLINIC HEALTH LETTER has an article on boils that says in part: "...begins under your skin when bacteria infect one or more of your hair follicles. A boil tends to grow rapidly, fill with pus, then burst, drain and heal. All this happens within about two weeks..." Soak the area with a warm washcloth or compress for about 30 minutes. This may cause the boil to disappear or, more likely, to burst and drain. Robert uses a topical prescription called Clindamycin phosphate made by Greenstone. Check with your physician if the patient has diabetes or is taking immune suppression medication. The Mayo letter says you should do this too if the boil is located on the spine or on the face, causes pain or worsens rapidly, hasn't disappeared in two weeks, or is accompanied by fever or has redness surrounding it, or reddish lines spreading from it. Recently, one of our subscribers mentioned that her twenty year old daughter (who also has DS) has a similar problem:
"I've previously read in your newsletter a concern about boils, so it sounded like a problem for many people with Down Syndrome. I am very interested in any information that might help with this problem. She has had them off and on but this past year they have become a major problem."
"My daughter is 20 years old and the boils and skin problems are mainly under the arms and in the private areas covered with a bathing suit. However some are lower on the legs and scarring quite badly. Since she swims with Special Olympics, it is difficult for her and she walks around with her towel until she jumps into the water."
"My daughter is extremely modest and will not let the doctor take a look unless she has a boil under her arm. I did take her to a naturopath and she suggested equal parts of bentonite clay and goldenseal root powder, mixed with a little water, to help bring the boil to a head. It looks like mud and my daughter just had a fit about using that on herself. She is very good about personal care, so I needed to have some ideas that she can feel good about using herself. So I talked to a registered nurse who has a son with Down Syndrome and she was using prescription Bactroban on the sores and Lac-hydrin 12% lotion all over the areas that usually have the skin problems, once every day or two. I just took my daughter to the nurse practitioner and she prescribed those two items to try. My daughter is on a high dose of vitamins, along with enzymes etc. for digestion so I am concerned about why the skin problems. What causes this to be such a problem for young people with Down Syndrome? Does this condition last through their lifetime or is it mainly a problem during the young adult years, like acne? Are there ideas for prevention of the problem, rather than just some medicine to apply after the fact? Are there other suggestions from your readers?" Dottie Nash, 6735 50th Ct. SE, Olympia, WA 98513.
THE Arc GOVERNMENTAL AFFAIRS OFFICE. As we have noted, Robert's older brother is Chairman of the Governmental Affairs Committee of the Arc Upper Valley in Grand Forks, ND. Peter is now a middle-aged man, who is the Media Coordinator for UND and who also teaches an English class. He attended an Arc Conference on Governmental Affairs recently. He will be helping with a seminar May 21 - 22, in Grand Forks. Think back a half-century if old enough or as far back as you can and you will recognize that Society has been increasingly considerate of disabled children. The captioned organization deserves much of the credit. If you want their position paper on related current efforts, write to 1730 K Street, N.S., Suite 1212, Washington, DC 20006; Email to email@example.com net or check www.Thearc.org/ga/Governmental_Affairs.html [No longer available].
NLM. The National Library of Medicine is the world's largest research library in a single scientific professional field. NLM is where Robert's dad was the night he came home from the hospital after birth. Check out their home page: http://www.nlm.nih.gov.
THE FIBROMYALGIA ADVOCATE. The author is a young female physician (D. J. Starloyl, M.D.). You can write to her at New Harbinger (publisher of this 377 page letter sized book). You can order the book or any of the other books Harbinger published, (including an earlier book she authored on FM by calling 800-748-6273). They cost less than $20 but with $3.80 for postage and handling they can be more expensive.
MENTAL RETARDATION. For most of my productive life this term has had an extremely strong association with the Arc. Now the national Arc is taking pros and cons to be considered at their fall meeting when they decide whether to change the term in official ARC usage. For many decades, the ARC has worked with the national and local educational, legal and governmental systems to benefit people with the captioned and related conditions. Join today and become a dues paying advocate for people with special needs.
GENETIC DATABASES. This title is considered much broader by me than the new Icelandic law. The Icelandic scientist, Kari Stefensson, who hopes to find facts of value to those with a multitude of physical maladies has my support, but according to a message from another scientist, Bogi Anderson, (University of California, San Diego, Cellular and Molecular Medicine, 9500 Gilman Dr. West, LaJolla, CA 92073-0648) who published a letter on it in SCIENCE, it does not seek informal consent and makes no special provisions (except that parents can decide for their children) to protect those who may have difficulty making an "informed" decision about opting out of the database. He feels it raises questions about the rights of people like those who have DS.
Some of Bogi Anderson's other comments follow: "As a scientist, I am greatly opposed to unnecessarily restricting research, and obviously it can be of great benefit for people and children with Down syndrome to provide their health records for research. However, I am troubled by the Icelandic database because deCODE plans to sell subscriptions to the database to insurance companies and HMOs. In addition, the Icelandic government plans to use the database to "control health care." Obviously, the information obtained from health records of individuals with Down syndrome could be used "against them" as a group by insurance companies and the government."
"Furthermore once data is entered into the database, it will not be allowed to be removed. Let's say that the parents of a child with Down syndrome allow their child's data to be entered into the database, then that individual can never have the data removed, even if he later decides that he does not wish to participate in the database. Thus, the law in Iceland allows people to be investigated despite their objections."
"To opt out, patients have to take an initiative and there is no plan in the law to give people objective information about the risks associated with the database. I have argued that there should be informed consent, that special provisions should protect those incompetent of making an informed consent and that individuals should be able to withdraw all data at any point. These are strict, but necessary provisions because:
FEDERAL GOVERNMENT PROVIDES INCOME SUPPORT FOR THE DISABLED. On Page 6 of the January STATE HEALTH WATCH a half page article provides facts and numbers. You probably can get reprint authority from Karen Wehge at (404) 262-5491 or through ILL.
ABLE TO WORK. The 1-25 TIME has an article so titled but on the Contents page it is listed as BUSINESS: Helping the Handicapped Go Back to Work, and since none of the 5 pages are numbered, you have to estimate its location. anyhow, thanks to TIME for reporting at length on the subject. Marriott International gets praised as it should. The article is concluded with a box containing access information on EEOC and the Job Accommodation Network, including 800 number.
GETTING READY TO WRITE. The entire Fall PARENT NEWS published by the Center for Persons With Disabilities of Utah State University, is devoted to this topic. The newsletter is available free or in alternative format (6848 Old Main Hill, Logan, UT 84322-6845). Their web site is http://www.cpd.usu.edu. Most developmentally disabled children need help to have a successful school experience and get along in the world. They say, and we echo "By supporting handwriting instruction at home, you can greatly enhance your child's chances of success."
CEREBROSPINAL FLUID. Many people are aware of this clear, colorless liquid that constantly bathes the brain and spinal cord; however, few know much more and even those attending the Society for Neuroscience symposium a few months ago recognize the need to learn more. The symposium grew out of interest in the suprochrosmatic nuclei (SCN) which controls circadian rhythms in our brain. Pages 58 & 59 of Vol 155 of SCIENCE NEWS tells much of what is now known about CSF. One scientist from Stanford notes that decline in production of CSF with age and this may contribute to dementia.
THE MOTHER'S BOOK OF HOME MEDICAL TESTS. H Haessler, M.D. and R. Harris are the authors; they previously authored MEDICAL TESTS YOU CAN DO YOURSELF. Although the maximum target age isn't stated, infants and toddlers appear to be the targets of this production. It's published by NTC/Contemporary Publishing Group and sells for less than $20. It is easy to read and although it is sans Index, there is an adequate Contents. Of course it really isn't written only for mothers.
DR. WINNIE KING/ASK THE FAMILY DOCTOR. Dr. King had a TV program on DS and had another physician on the program with her. The guest physician endorsed swimming as particularly good exercise for people with DS, and Dr. King strongly endorsed early intervention. The NDSS 800 number was provided (800-221-4602). It is easy to tell Dr. King loves kids including those with DS. Thanks Dr. King and NDSS for helping make that program possible.
NEW VACCINES. This is an AP Special Features item taken from THE DAILY JOURNAL (P. O. Box 1200, Devils Lake, ND 58301). They are intended to protect children against everything from ear infections and the flu to meningitis. I didn't find the article as explicit as most medical journal articles but gather that one of the primary new vaccines relating to ear infections won't be available until fall. I believe it is aimed at Streptococcus pneumoniae, which causes 40% of ear infections as well as pneumonia bacteremia (blood poisoning) and bacterial meningitis. The vaccine has proven 100% effective in preventing meningitis and bacteremia, but the results aren't all in for ear infections and pneumonia. We thank Kathy Sividal, Publisher of the Journal and the Associated Press for the article.
The GRAND FORKS HERALD Pulitzer Prize Winning newspaper, reports a chicken pox vaccine was developed a couple of years ago to prevent major complications of the pox. In North Dakota, it is given during the first year checkup and/or during preschool and at age 13. A blood test can measure immunity.
RECOGNIZING SPEECH DISORDERS. This article is one of the AP Special Features. So is the NEW VACCINES article so if you put out a periodical, you probably want to ask the Associated Press to send you all subsequent articles relating to your subjects. This one says that developmental articulation disorders affect a child's ability to produce speech that is easily understood; children can also have difficulties regulating the pitch, volume or quality of their voice. Language disorders occur when it is hard for children to put words together to convey their ideas and communicate meaning. Characteristics of language disorders include improper use of words, inability to express ideas, inappropriate grammatical patterns, reduced vocabulary and difficulty following directions. It lists guidelines for normal speech starting at four months and concluding with the statement that around their first birthday, many children are able to say their first words. We recommend that if you have doubts about a child's development, you seek guidance from the closest "Birth to Three" organization or something similar.
CAVITIES STOPPED BY BACTERIUM. There is much to be done but C. Wee on P. 22 of the 1-9-99 SCIENCE NEWS reports Streptococcus mutants by a new peptide.
THE GENETIC GODS. The '98 Harvard book mentions DS a few times and says on p.67 "The physical and psychological hallmark of Down syndrome include distinctive craniofacial and neuralogic anomalies that stem ultimately from metabolic imbalances due to the extra gene copies and their protein products." We have been writing on the subject for more than a quarter of a century hoping that is known by readers. The author is John Advise, a Professor of Genetics, and although the book isn't easy reading, ask your library to get it for you through ILL if you want to learn more about genetics.
ANTIBACTERIAL OVERKILL. That's the caption we used to announce the problem in our December issue. Dr. Etingen answered the question as to whether she recommends antibacterial soap in the January WOMEN'S HEALTH ADVISOR (P. O. Box 421235 Palm Coast, FL 32142-0235) partially as follows: "Triclosay behaves like an antibiotic...some antibacterial products for situations in which a house member is particularly vulnerable to bacteria... Otherwise, bacterial infection can be avoided simply by washing your hands."
SPECIAL POPULATION CATALOG. FlagHouse has put out the nicest, most complete catalog of sundry products for institutional use I have seen. To get a copy of it or their Rehab, Physical Ed and Recreation, Sports and Play, or Furniture Express catalogs, call 800-793-7900.
DEAFNESS, CULTURE OR DISORDER? Jay Tolson in the 3-1-99 US NEWS AND WORLD REPORT titles his page 58 article "Can the quietest war be brought to an end?" I have written before that "signers" frequently consider themselves part of a vibrant culture and not victims of a disorder. They have company from many others, including some friends of mine who stutter, have different sexual drives, etc., and fight efforts to "fix" them rather than interact with them as they are. Tolson says a recent study established that infants who don't start developing language by the sixth month suffer permanent cognitive deficits. He also mentions a Federal bill to implement infant screening for which only 20% of newborns now undergo. The question is, should children with profound hearing loss be taught sign language or be started on the audist path. For almost two decades such devices which stimulate the auditory nerve to provide stimulation have been implanted in babies only one and a half year old with remarkable effectiveness. Also, he says there is a possibility of regenerating inner-ear hair cells through genetic engineering. I had the opportunity to hear the first deaf president of Gallaudet a few years ago and have known many other brilliant deaf people. It seems clear to me that our Society can "do" both implantation and sign language and that many of us are willing to learn and use appropriate "survival" signs.
EXPECTING ADAM: A TRUE STORY OF BIRTH, REBIRTH, AND EVERYDAY MAGIC. Copyright © 1999 by Martha N. Beck, Ph.D. ISBN 0425174484. Reprinted with the permission of Times Books, a division of Random House, Inc. The author kindly provided us with the following excerpt:
My son Adam was diagnosed with Down syndrome two months before he was born, one gray winter day when I was a doctoral candidate at Harvard. Only hours after hearing the news, I waddled my pregnant self over to the library, hoping that researching my baby's condition could somehow calm the storm that raged inside me. As I walked across the campus, where I'd been a student since I was seventeen, the thought that my son would never go to college not any college numbed me, body and soul, until I hardly felt the cold.
Just outside of Harvard Yard, I stopped to drop some change into the outstretched hat of a ragged homeless man. He looked at my abdomen, flashed me a huge smile, and said, "Congratulations, Mamma!" I glanced around, not realizing for a moment that he was talking to me. I had already stopped believing that my pregnancy merited congratulations. At that moment, I thought of Adam as though he were a Christmas present that had broken before it was even unwrapped. If that man only knew, I thought bitterly. Now, more than ten years later, I love the memory of the homeless man and his cheerful greeting. It's like looking back on a time of sickness to remind myself of the joy of getting well. Remembering my dread and fear helps me appreciate, all over again, the incredible gift I was given when Adam came along.
I felt this was especially keenly the Christmas when Adam was five. As usual, all three of my children arose at an ungodly hour and descended on their gifts like locusts on an alfalfa field. Along with most other American parents, my husband John and I had spent a good part of the previous month tracking down the items our children had requested in their letters to Santa. Katie, the oldest, had asked for a set of bird calls she'd seen in an FAO Schwartz catalogue. Five-year-old Lizzie wanted one of those dolls they advertise on Saturday morning cartoons, the ones with repulsively cute names, that have been engineered to mimic the least pleasant behaviors of real human babies. I think that year Lizzie's doll had an anxiety-related bedwetting disorder or something. Adam wanted a whole brigade of toys with names like Cretin Slime Monsters.
In the proud tradition of delayed gratification my husband John had inherited from his Nordic ancestors, the children opened their presents one by one. Katie went first. The FAO Schwartz bird call set had turned out to cost several hundred dollars, so John and I had purchased what we thought was a reasonable facsimile. It didn't cover quite as broad an ornithological spectrum as the pricier set, but it could produce a great duck sound, a good owl, and several very convincing songbirds. When she saw it, Katie's face fell. It is an awful thing to see your kid's face fall on Christmas morning.
"Don't you like it?" I asked anxiously.
"No, no, it's okay. I like it." Katie smiled a stalwart smile, but her lower lip trembled ever so slightly. I began to feel that we should perhaps have taken out a second mortgage to pay for the FAO Schwartz bird-call set.
Lizzie went next. She tore the gift wrapping off her bedwetting doll, and then she, too, developed that troubled look around the eyes.
"What's the matter?" I said.
"Well," said Lizzie, "it's not exactly what I asked for."
John, who had fought his way through about seventeen toy stores looking for that particular doll, burst out, "I thought you wanted a Tiny Whiny Princess Wee-Wee!"
"I did," said Lizzie in her precocious little voice, "but I wanted the one with the pink jewels, and this one only has the purple jewels."
Within minutes, both the girls had reconciled themselves to their gifts. Like their pioneer forebears, many of whom had died crossing the Great Plains on foot in the dead of winter, dragging their possessions behind them in handcarts, my daughters were able to steel themselves to the brutal realities of an imperfect world. This was good, because I had been on the verge of sending them both to military school.
Now it was Adam's turn. He fished around under the Christmas tree until he found a package with his name on it. He tore the paper off, holding his breath, and foundbatteries. An eight-pack of double D's, still encased in plastic.
"Oh, honey," I said, "that's not the real present. The real present is"
But Adam didn't hear me. He was staring at those batteries as if they were so magnificent he couldn't quite take them in. His mouth fell open in astonished ecstasy as he held the batteries up to the light.
"Oh, wow!" he said. "Oh, wow! Mom, look! Batteries!" (Actually, it sounded more like, "Mom, ook!
Aggabies!" but the meaning was clear.
Before we could divert his attention to any other gift, Adam leapt to his feet and began running around the house, locating every appliance, tool, and toy that ran on batteries. The whole time, he babbled excitedly about all the things he could do with this fabulous, fabulous gift. As we watched, it began to occur to all of us "normal" people in the family that batteries really were a pretty darn good Christmas present. They didn't look like much, on the face of it, but think what they could do! Put them in place, and inanimate objects suddenly came to life, moving, talking, singing, lighting up the room. Something about Adam always manages to see straight past the outward ordinariness of a thing to any magic it may hold inside.
So this has become part of my holiday ritual: every winter I go back to that terrible December day when I learned that I was about to become the mother of retarded child. I hear the homeless man saying, "Congratulations, Mama!" and I remember the spasm of anguish I felt as I thought how wrong he was. Now, I like to believe he was on a truer wavelength than I had ever visited. I imagine him knowing the whole story, and showing the same astonished delight I saw in Adam that Christmas morning when he unwrapped his batteries. This little boy may not look like what you asked for, the homeless man might have told me. He may not have the features you requested, or be able to perform all the right Harvard tricks. But put him in place, and he will light up your life. You have no idea how much magic is in him.
FROM MILK TO TABLE FOODS: A PARENT'S GUIDE TO INTRODUCING FOOD TEXTURES (Disability Solutions. January/February 1999, 3(3): 1-9, Joan E. Medlen, R.D.) 9220 S.W. Barbur Boulevard, #119-179, Portland OR 97219-5428. (503) 244-7662 URL: http://www.disabilitysolutions.org E-mail: firstname.lastname@example.org, fills the void of what little information available to parents explaining what to look for when introducing new textures to children with Down syndrome. Mouth and tongue control while eating suggestions: a) Check your child's positioning, b) Your baby should be able to look straight ahead at the person feeding her, c) Spoonfuls of food should be small, d) Present the spoon from slightly below your baby's mouth, e) Remove the spoon straight out from mouth, f) Watch your baby's cues, and g) Watch for signs of fatigue. To promote chewing or tongue coordination and encourage eating skills: a) Place your thumb on chin, below lip and gently encourage jaw movements with an up and down action, b) Place food between gums or molars on one side of mouth, c) If child favors chewing on one side of mouth, place food on the other side, d) Offer appropriate finger foods, e) Do not mix food textures! and f) Encourage side-to-side tongue movement. Other helpful hints: a) Learning to eat is a messy, messy process, b) Children with Down syndrome often take longer to progress from baby food to regular table foods, c) Try to make mealtime pleasant, d) Adjust seating position, foot rest, and upper body support as child grows, e) Eating takes time for children and adults with Down syndrome, f) Offer new foods one at a time, g) Establish a family meal time. EATING HABITS OF YOUNG CHILDREN WITH DOWN SYNDROME IN THE NETHERLANDS: ADEQUATE NUTRIENT INTAKES BUT DELAYED INTRODUCTION OF SOLID FOOD (Journal of the American Dietetic Association. July 1998; 98(7): 790-794, Erica Hopman, RD, et al.) investigated the nutritional status of 44 Dutch children with Down syndrome (birth to 4-year-olds) and 37 healthy control subjects without this syndrome and concludes that while Down syndrome does not affect the prevalence of breast-feeding, it does significantly delay the age at which solid food is introduced, which can be deleterious to oral-motor development and pre-speech therapy should be considered. The authors quote Pipes and Holm (Feeding children with Down's Syndrome. Am Diet Assoc. September 1980; 77: 277-282) who suggest that because parents of a child with Down syndrome are told to expect retardation in their child's development they are vulnerable to treating their child like an infant with the outcome of providing a more baby-like menu. Emmanuel progressed from Gerber® cereals for the baby's first two years to crayons (favorite color: pica) and Play-Doh® (ages 2 & up, therefore right on schedule according to the labels), neither of which servings are specified in the food pyramid, a glaring omission. Please contact us with the nutritional information of these non-toxic comestibles or for applying to the National Endowment of Arts. Pipes and Holm retrospective review of 49 children with Down syndrome between the ages of 6 months and 6½ years seen before 1970 showed that 80% had problems related to food or feeding. The incidence of obesity in Down syndrome was reduced, but not eliminated, with an interdisciplinary intervention program with the participation of a nutritionist, a nurse, an occupational therapist, and a pediatrician, focused on the nutrient intake, oral motor development, and parent/child interaction during feeding. In LA PREVENCIÓN DE LA ALIMENTACIÓN (Revista Down, Julio 1998, N° 9, 10-11, M. Brancal Boldori) the author states that tongue laterization and rotary chewing is not accomplished by 71% of the children with Down syndrome by the age of 4 years; and 31% by 5 years, but proposes that this can be remediated by a gradual feeding intervention. In SOCIAL DEVELOPMENT AND FEEDING MILESTONES OF YOUNG DOWN SYNDROME CHILDREN (American Journal of Mental Deficiency 1981, Vol. 85, No. 4, 410-415, S.M. Cullen & C.E. Cronk, et al.) early feeding milestones were about 35% later than usually observed, while feeding milestones at 12 to 18 months were delayed by about 10%; after 18 months, a delay of 20 to 30% was noted. The authors conclude that adequate parental follow-through influences learning of self-help skills. DIETARY ADEQUACY, FEEDING PRACTICES, AND EATING BEHAVIOR OF CHILDREN WITH DOWN'S SYNDROME (Journal of The American Dietetic Association, August 1976, Vol. 69, 152-156, S.D. Calvert, V.M. Vivian, G.P. Calvert) is a study where data was collected by interviewing 40 families with a child one to twelve years with Down syndrome. Eating a limited variety of food; consuming too few fruits and vegetables; and difficulties in using eating utensils, eating foods served to the family, and chewing foods were the eating habits and problems most frequently identified by parents. To summarize, children with Down syndrome usually do not have severe feeding difficulties; however, hypotonia, open mouth posture, poor tongue control, and global developmental delay associated with Down syndrome reduce oral-motor effectiveness (Kedesdym J.H. & Budd, K.S. Childhood Feeding Disorders (1998) Baltimore, MD: Paul H. Brookes).
MENTAL HEALTH ASPECTS OF DEVELOPMENTAL DISABILITIES (MH/DD) is the first and only journal exclusively devoted to the mental health needs of persons with mental retardation and developmental disabilities. MH/DD is a peer-reviewed interdisciplinary publication, with four issues per year. The journal will provide clinical reviews, case studies, treatment reports, drug information updates, teaching guides, clinical tools and commentary on key mental health topics with the aim of tying research findings to clinical practice. Topics related to pharmacotherapy, psychotherapeutic techniques, diagnostic issues, and behavioral interventions will be strongly represented. Areas requiring further research will be highlighted, and diverse perspectives on critical issues of clinical importance will be encouraged. For subscription information contact: Psych-Media, Inc. P.O. Box 57, Bear Creek, NC 27207. (336) 581-3700; Fax: (336) 581-3766. E-mail: email@example.com URL: http://www.mhaspectsofdd.com/
MUMS is a national Parent-to-Parent organization for parents or care providers of a child with any disability, rare disorder, chromosomal abnormality or health condition. MUMS' mission to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition. Through a database of over 13,500 families from 42 countries, covering over 2300 disorders, very rare syndromes or undiagnosed conditions can be matched. Parents can then exchange valuable medical information, as well as, the names of doctors, clinics and medical resources or research programs. Families provide each other with emotional support and they don't have to feel so alone when they have each other to reach out to in time of need. MUMS networks with other organizations which do matching, thus expanding the possibilities of finding a match. MUMS also connects parents with support groups dealing with their child's specific disability or assists them in forming a group. The newsletters allow families to share and speak out about issues affecting their lives. Annual subscription: $10 for Parents, $20 for professionals. Matching service is free.
For more information contact, Julie J. Gordon, MUMS National Parent-to-Parent Network, 150 Custer Court, Green Bay, WI 54301-1243. (920) 336-5333; Fax: (920) 339-0995; E-mail: firstname.lastname@example.org URL: http://www.netnet.net/mums/
CELEBRATING LIFE is a bi-monthly publication of American Life League, Inc. P.O. Box 1350, Stafford, VA 22555. (540) 659-4171, E-mail: email@example.com URL: http://www.all.org. The March/April 1999 issue has 4 articles pertaining to Down syndrome: 1. Miracles all Around by Barbara Curtis, E-mail: firstname.lastname@example.org an account of her son Jonathan's graduation from kindergarten. 2. Beautiful, One Day at a Time by Cynthia Kidder, E-mail: CYNKIDDER@aol.com who has been producing the Beautiful Faces Calendars and note cards for five years (Band of Angels Press, 3048 Charlwood Drive, Rochester Hills, MI 48306, (800) 963-2237. URL: http://www.bandofangels.com). The article includes photographs taken by Kendra Dew. 3. The Beauty of Childlike Faith by Lisa Marie Contini, a story of the author's friendship with twenty-five-year-old Larry Guerra. 4. Lighting a Candle of Hope by Dr. Margaret White, who started a fund after her daughter Anna was born in England in 1988. The three goals of the Anna Fund were at the time: 1.Pay fares for children to see Dr. Lejeune in Paris. 2. Help fund Dr. Lejeune's research. 3. Educate the medical profession about what could be done to help children with Down syndrome. Clinics following Professor's Lejeune's methods have been founded in Malta, Italy, Chicago, New York and Delhi. Dr. Tony Cole, from the initial clinic, has found that forty percent of children with Down syndrome have low serum iron and six percent have high blood cholesterol. My son Emmanuel's blood test at age 26 months values: Cholesterol: 200 mg/dL; LDL: 144 mg/dL; HDL: 46 mg/dL.
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 in Disability Solutions, Jan/Feb 1999. In Chapter 2, Down Syndrome and the History of Community Banishment, Kliewer notes that Buck (1955) and Butterfield (1961) published accounts of individuals with Down syndrome who demonstrated competencies beyond what was generally believed possible. In both case studies the subject was brought up and maintained as a central member of the immediate family and was expected to participate in the general functions of the household. High expectations had been part of each of their lives. Roy I. Brown in Quality Of Life And Down Syndrome: Relevance to Research and Practice, a chapter in DOWN SYNDROME IN THE 21ST CENTURY: 1st Biennial Scientific Conference on Down Syndrome (1998) has the following observation: My own view is that if partnership does not take place when the individual is an adult it may frequently result from expectancies prevailing during the early years of the child's life. For example, the attitudes of parents are not only affected by their own internal value systems, but are influenced by those who, in their eyes, have a major weighting in terms of authority and advice, i.e., doctors, nurses and teachers. Their views will have a profound effect over the years and will either upgrade or degrade the development of any positive views held by the parents. This in turn influences what the individual with Down syndrome expects of themselves.
FORTHCOMING & NEW BOOKS ON DOWN SYNDROME
THE HANGASHORE (1998). Geoff Butler. Tundra Books of Northern New York. ISBN: 0887764444.
DOWN SYNDROME IN THE 21ST CENTURY: 1st Biennial Scientific Conference on Down Syndrome (1998). Down Syndrome Research Foundation and Resource Centre. ISBN 0968478301.
CONTINUITY AND CHANGE IN THE SOCIAL COMPETENCE OF CHILDREN WITH AUTISM, DOWN SYNDROME AND DEVELOPMENTAL DELAYS (1999). Marian Sigman, Ellen Ruskin. Blackwell. ISBN: 0631215913
A MINOR ADJUSTMENT (1999). Andrew Merriman. Pan Books. ISBN: 033036748X.
DUSTIN'S BIG SCHOOL DAY (1999). Alden R. Carter, Dan Young, Carol S. Carter. Albert Whitman & Company. ISBN: 0807517410.
NEW JERSEY WRONGFUL LIFE LAWSUIT. Excepted from the Star-Ledger, Somerset-Hunterdon section, March 18, 22 & 25, 1999. Michael Imbergamo 3rd, the South Bound Brook boy whose Down syndrome prompted his parents to sue their obstetrician, will never live alone, marry or hold gainful employment, a physician testified yesterday.
Dr. Leon Charish, a pediatric neurologist from Long Island hired by the boy's parents, testified via videotape that people with Down syndrome usually don't live past age 55 because "their nervous system is so compromised."
The doctor's statements moved the 4-year-old boy's parents, Michael Imbergamo and Deborah Campano, to tears.
They are suing Dr. James Delahunty for malpractice, accusing him of putting his anti-abortion views before the family's interests.
Campano, 34, had previously testified had she known about her son's Down syndrome, she would have terminated the pregnancy. "We didn't want to bring a handicapped child into the world". Had the doctor not assured her everything was fine, "I would have aborted it's too much responsibility."
Another defense witness, Dr. Thomas Westerman of Shrewsbury, testified that Michael is well off in some respects despite the effects of Down syndrome. The ear, nose and throat specialist said Michael's breathing problems were corrected when his tonsils and adenoids were removed.
The boy's hearing is normal, Westerman said, bristling at a suggestion by Vivian Demas, the attorney for Michael's now-divorced parents, that people with Down syndrome are "harder to treat."
"In my experience, they're usually very cooperative, loving people, who appreciate somebody doing something for them, so they're usually easy to take care of," Westerman said.
IMPROVING THE COMMUNICATION OF PEOPLE WITH DOWN SYNDROME (Baltimore, MD: Paul H. Brookes, 1998) J. F. Miller, M. Leddy & L.A. Leavitt, (Eds.) list on page 255 the following strategies that families can use to enhance communication with their children. 1. Language levels are selected relative to the child's ability to understand the message and not with regard to the child's ability to produce messages. 2. The families have realistic communication goals for children. 3. The families expect all children to learn to read. 4. The families focus on understanding the content of children's messages and should not be as concerned with the forms that children's messages take. 5. Hearing testing is scheduled every 6 months until the child is 8-10 years of age. 6. The families provide children with frequent and varied experiences outside the home.
NUTRIENT INTAKE AND OBESITY IN PREPUBESCENT CHILDREN WITH DOWN SYNDROME. (Journal of the American Dietetic Association, Dec. 1996. Luke, A., Roizen, N.J., Sutton, M., & Schoeller, D.A.) was a study designed to examine the body composition and energy and nutrient intakes of prepubescent children with Down syndrome compared with that of control children to understand dietary barriers in the treatment or prevention of obesity in this population. The study subjects included 10 prepubertal boys and girls with Down syndrome 5 to 11 years old. When obesity is defined as an index for ratio of weight to height greater than 1.2, 50% of those with Down syndrome were obese, regardless of the growth charts used, compared with 30% of the control subjects. Children with Down syndrome may have an inherent metabolic risk factor for expending less total energy because of their lower resting metabolic rate, which places them at risk for developing obesity. The authors suggest that any weight management program tailored to children with Down syndrome include a balanced diet, individually prescribed, that incorporates nutrient-rich, natural food sources of nutrients and a daily vitamin/mineral supplement. Increasing physical activity adapted to the individual child's age and ability is also important, because it provides an increase in energy expenditure without necessitating a decrease in energy intake. In Weight Management in Down Syndrome: The Early Childhood Years (Disability Solutions, Nov/Dec 1997, 2(4)) Joan E. Medlen states that recent research suggests that children with Down syndrome have a lowered basal (resting) metabolic rate than their "normal" peers (Luke, A. et al. Energy Expenditure in Children with Down Syndrome: Correcting Metabolic Rate for Movement. Journal of Pediatrics, 1994, Vol.125, 829) and suggests the following list to help parents provide healthy eating habits: 1. Providing scheduled meal and snack times. 2. Limit eating to few areas of the house. 3. Let kids help prepare meals and snacks. 4. Do not use food as a reward. 5. Do not offer food unnecessarily. 6. Remember there are some situations that are nutritional "goners."
Linares, R and Castro, A. (Is Weight Controlled Suitable in Down Syndrome People? Ital. J. Intellect. June 1998, 11(1): 19-22) is a study in which 251 people with Down syndrome took part in Spain in 1993. 193 were obese and 54 were on a diet. 29 practiced a sport. For persons over the age of 18, the height for males (n=77) was: 153.34 cm ± 6.52 (min/max: 132-170); for females (n=63) 139.54 cm ± 5.97 (min-max: 125-156); weight for males (n=71): 69.10 kg ± 13.05 (min/max: 40.5-106); for females (n=58) 162.34 kg ± 14.06 (min-max: 30-94).
DOWN SYNDROME is the title of Chapter 17 by Dr. Nancy J. Roizen, in CHILDREN WITH DISABILITIES (Baltimore, MD: Paul H. Brookes, 1997, 4th Edition) which describes a) the methods used in prenatal screening and diagnosis of Down syndrome, b) the physical characteristics of Down syndrome, c) the medical complications of this disorder, d) the typical cognitive, developmental, and behavioral characteristics of a child with Down syndrome and e) the approaches to intervention. Dr. Roizen concludes that by ensuring optimal audiologic, cardiac, endocrinologic, ophthalmologic, and orthopedic functioning, children with Down syndrome have the opportunity for good health and developmental functioning. The recommendations for preventative health care for children and adolescents are summarized in a table based on the format of the American Academy of Pediatrics. A similar paper published in the January 15, 1999 issue of American Family Physician, Primary Care of Infants and Young Children with Down Syndrome by Rebecca B. Saenz, M.D., which was mentioned in the previous issue, can be found at: http://www.aafp.org/afp/990115ap/381.html and stresses that routine health maintenance is important because infants and children with Down syndrome are more likely to have otitis media, thyroid disease, congenital cataracts, leukemoid reactions, dental problems and feeding difficulties.
FAMILY VALUES by Michael Bérubé, e-mail: email@example.com in Down Syndrome. A Promising Future, Together, edited by T. J. Hassold and D. Patterson (New York: Wiley-Liss, 1999) is a follow-up essay on Life As We Know It: A Father, a Family, and an Exceptional Child (New York: Random House, 1996) and an update on James' relation to his brother Nick as a role model and a reminder to check the emotional status of families who have children with disabilities. The essay ends with an account of James' answer at daycare to what he wanted to be when he grew up. After the other children gave stock answers: cowboys, fire-fighters, ballerinas, the teachers politely asked James, not sure that he would understand the question. James answered immediately with one word, "Big." Not only had James understood the question, but he came up with an answer that readjusted everyone else's parameters of what that question meant. James wants to grow up, he wants to be healthy, he wants people to treat him well. In saying he wanted to grow up big, James was no longer the "special needs" child, he became the normal child, the universal generic Child.
MEGAN O'HARA, WHEATIES HERO by Peggy O'Hara as told to Anne FitzPatrick (Catholic Digest, March 1999, 44-51. URL: http://CatholicDigest.com) is the story of Megan O'Hara, commencing from the dire expectations of the hospital's medical experts: "She'll probably never walk" and "It's doubtful she'll ever develop understandable speech. You may be able to manage a couple of years, but you'll eventually have to place her in an institution." Megan, now 23, after many Special Olympics medals and having her picture taken for a special edition Wheaties cereal box, spends much of her free time speaking in schools and events with her low-key, "anybody can do it" attitude. "Some kids used to say I was different. A retard," Megan tells audiences, recalling some taunts of the past. "But I'm not a retarded, am I?" More than a question, however, her words are a statement of faith in herself and God.
THE POTENTIAL OF GENE THERAPY FOR DOWN SYNDROME (Down Syndrome Quarterly, Dec. 1998, 3(4) 1-10. Denison University, Granville, OH 43023.) Summary kindly provided for us by the author, Thomas J. Torda, e-mail: Thomasjtor@aol.com.
As the father of a 7-year-old boy with Down syndrome (DS), I was intrigued to read in the recent book Altered Fates: Gene Therapy and the Retooling of Human Life, by Lyon and Gorner (NY: WW Norton & Co., 1996 and 1995) that the 1990s gene-therapy revolutionbesides well-publicized forays into treatments for a variety of illnesseseven holds forth the potential of treatment for DS.
Historically, DS genetics research began with early-80s mouse studiesby Dr. Charles J. Epstein of UC San Francisco and his colleague Dr. Yoram Groner of Israel's Weizmann Institute of Sciencefocusing on the destruction caused by 50 percent too much (corresponding to the third human chromosome 21, or HC21, in people with DS) of the enzyme copper/zinc-containing superoxide dismutase.
A major milestone in DS-genetics research was reached in 1992: completion of a physical mapping of HC21 by Daniel Cohen, Ilya Chumakov, and colleagues at the Paris-based Centre d'Etude du Polymorphisme Human (CEPH, now known as GenSet), in conjunction with many researchers and institutes in other countries. This milestone, announced in October 1992, represented the first fruits of the Human Genome Project, well ahead of its original goal of completing physical maps of all human chromosomes by 2005, and now aiming for this goal by 2002-03.
Several milestone genetic maps of the DS chromosome region of HC21 were published by American, Canadian, Australian, Israeli, Japanese, and Italian researchers in 1994 on. These findings, achieved via the yeast artificial chromosome (YAC) technique, often targeted the neurotransmitters glutamate and acetylcholine. Specific genes studied included the beta-amyloid precursor protein (APP) gene, apolipoprotein E (apoE) gene, Ets2 proto-oncogene (mutant gene promoting cancer), DYRK (dual-specificity tyrosine phosphorylation-regulated kinase) gene, "minibrain" gene, TPRD (tetratricopeptide repeat D) gene, and several others. [For the latest list of the many genes now linked to DS, go to the Research section of the following web site: http://www.dsresearch.org/].
A major breakthrough for potential gene therapy in general was the development of the first human artificial chromosomes (HACs) by a Case Western Reserve University (CWRU)/University Hospitals of Cleveland/Athersys, Inc. partnership. This development, announced in April 1997 in the journal Nature Genetics, will have important applications in the repeatable construction of delivery vehicles for genetically engineered substances.
Some of the 50-75 DS-genetics papers published very recentlybetween June 1997 and December 1998are highlighted. The researchers writing these papers come from the U.S., Spain, Japan, France, and the U.K. Recent advances in molecular neurogenetics, including the transplantation of fetal neurons, are covered from a Scientific American article published in June 1997. Also highlighted is a recent reviewwritten by gene-therapy patriarch Dr. W. French Anderson and published in the 30 April 1998 issue of Natureof the progress of gene therapy in general.
The final sections focus on the June 1998 announcement of the National Institutes of Child Health and Human Development's $10 million grant to Denver-based Eleanor Roosevelt Institute (ERI) for a genetics-based 5-year study of learning in people with DS. The particular interests of ERI President/Senior Fellow (and study leader) Dr. David Patterson are covered in depth, via major quotations from an article he published in the NDSS Conference: The Future Is Ours (July 9-11, 1998) proceedings. This article is entitled "New Opportunities in Research for Down Syndrome and Their Ethical and Social Implications."
It is noted thatwith the geometric progress in the pace of genetic-engineering and gene-therapy developmentsit is reasonable to conclude that Americans will see gene-based treatments for certain characteristics of DS and its associated Alzheimer's disease within the foreseeable future, possibly even within a few years.
ERRORS. After being marked for deletion by both proofreaders, the "a" inadvertently starting the word stigmatic wasn't removed from our final copy due to technological reasons. However, it was deleted from the copy put on the Web site. We also corrected the EXCEPTIONAL HEALTH CARE address to read Suite 275, 45 Park Place S., Morristown, NY 07960-9886. Due to my age it seems prudent to anticipate further errors so let us know and they also will be corrected. Sorry about getting old, but I will try to live with the problem!
JOURNAL WATCH AUDIOS. These cassettes will bring you 60 minutes of summaries of reports in more than 50 major medical journals. They are written by practicing physicians and you can earn two category ICME credits all from A-D.F. (a non-profit subsidiary of the California Medical Association, 1577 East Chevy Chase Dr., Glendale, CA 91206). Just ask and you can get a free sample cassette. I was sent one of the two produced in February. It's easy to read and hear why ADF has continued doing such work for half a century, but it is produced for progressive physicians and researchers and probably will convey little knowledge to anyone not properly trained academically for such work
NO MORE GAMBLING. Robert, on the Ides of March (3-15), at the breakfast table, was disgusted with gamblers and gambling and wanted an article on it in this issue. He had probably heard on his wake-up radio that there were no winners on the video lottery as he mentioned that, but he had calls yesterday from some of his friends and perhaps they had gambling problems. Disabled people certainly should be protected from the gangsters that run gambling operations. Robert called one of the numbers in a sports magazine and the gangster at the other end apparently thinks he has been talking to an easy victim as he calls for Robert frequently and isn't concerned about our pleas about an invasion of privacy, stalking, etc. Our advice is never let any of these people get your phone number (don't call them) and "there is nothing for nothing"!
TO BE INCLUDED. The February EXCEPTIONAL PARENT (pages 48 - 50) has this personal narrative about Karen Gaffney most of which was authored by her. She has DS and is a student at Portland Community College. It is worth reading so if you don't subscribe to EP try to get it through ILL.
SUBSCRIBERS, FEEL FREE TO COPY, REPRINT. Before I turned DS NEWS over to the DS Congress I was informed by several people that they had copied and distributed many copies. Without that visibility DSC probably would never have been established. I think I have always encouraged publications to reprint or modify articles without my approval and saw that several do so, but since my address was not provided, I asked that whenever possible that ordering information should be provided.
The last few years of our publication has been put on The Riverbend Down Syndrome Association Web site at: .
As long as we receive $100 or more in donations between issues, we will continue to publish and are pleased, honored, and rewarded when copies are made and distributed. We don't want readers to be pressured to pay a portion of our costs and are particularly appreciative of those (most) who send $10 or more (we recognize them as partners as we couldn't proceed without their assistance).
SUBSCRIPTION COST. We only ask for $1 an issue or $5 per year. Our true "partners" send more, but we don't want anyone else to pay for your subscription. Kosovo reminded us that there may come a time when we will either have to put up or shut up and although the analogy is frail since our only alternative appears to: cease publication, reduce the frequency and extent of coverage, or convert to first class mailing for only those that subscribe and thus reduce our outreach (for instance this issue is going to all the DS Clinics listed in the '95 Woodbine House book on Medical & Surgical Care for Children with DS) If you know of others, send us the address and we will send them a free copy of our next issue. Send the check to PWSN/DS Report, 1409 North First Street, Aberdeen, SD 57401. The number after your name reflects the last digit of the year the money was received, the month in which it was deposited and the amount. For instance 965 means you send $5 in June of '99. If the number is followed by a plus sign, it means you have given previously.
AUGUST 26-29, PCMR SYMPOSIUM. It will be at the Washington Court Motel in DC (800-321-3010) and costs $225 (AAMR, P. O. Box 1202, Washington, DC 20013-1202), but will likely get you on the right start for the coming millennium.
PRE MEMORIAL DAY AAMR NEW MILLENNIUM MEETING. It will be May 24-28 at the Hilton New Orleans Riverside Hotel (www.aamr.org). Ask for a preliminary program (AAMR, 444 N. Capital Street WW# 846, Washington, DC 20001-1512). Most of the top officials concerned with MR will be there. I have enjoyed the several annual AAMR conferences I have attended and if I should get to GO I certainly would see the film "Best Man" which shows how Philly (now 70, who has MR thrives). Thursday evening and earlier that day I would sit in on the Visual-Motor and Spatial Cognition Skills in DS sessions, and have seen the posters on "Reading in Children With DS." Earlier in the PM I would have participated in "Lifespan Predisposition For Overweight and Obesity in DS" session. It would be a very busy day as there are at least a half dozen sessions that interest me greatly. Frank Murphy is Chairperson of the AAMR DS Special Interest Group.
FEDERAL INCOME TAX. SSI money isn't counted and that is true too of money from a sheltered workshop (but IRS isn't quite as clear about that). SSDI and any other disability payments must be reported, but there is an "earned income credit" that offsets that; also, there is a credit for the elderly and disabled. Anyhow, Robert's tax return was more complicated this year so I sent a letter with the request that IRS compute any credits (there should be no question about the one for the disabled), and suggested that they henceforth hold that returns are not required for disabled people with total income of less than $8,000 (including SSI).
|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: May 4, 2003.|