MedWorm provides a medical RSS filtering service. Over 6000 RSS medical sources are combined and output via different filters. This feed contains the latest medical blog items that have been tagged with 'down syndrome'. Sat, 03 Sep 2011 02:09:50 +0100 http://www.medworm.com/index.php?rid=4498303&cid=t_112701_112_f&fid=34971&url=http%3A%2F%2Fdoctorandpatient.blogspot.com%2F2011%2F02%2Fwhy-dont-you-have-copy-of-your-ivf.html I see patients who have done IVF cycles in other clinics all the time. How they responded in the earlier IVF treatment cycle provides me with valuable information, based on which I can tailor a better treatment protocol for them.One of the basic questions I ask them is - Please tell me more details about your earlier IVF cycles . What were the meds which were used for superovulation ? What was the dose used ? How many follicles did you grow ? How many eggs were collected ? What was the E2 ( estradiol) level in the blood ? How many embryos were transferred ? What was the embryo quality ? DO YOU HAVE PHOTOS OF YOUR EMBRYOS ? What was the endometrial thickness ?Can you please show me the printed treatment summary from your IVF clinic ?Many of them look at me blankly. ( I am sure some of them ... The Patient's Doctor blogs http://www.medworm.com/rss/comments.php?id=4498303 Sun, 20 Feb 2011 03:01:00 +0100 4498303 http://www.medworm.com/index.php?rid=4230156&cid=t_112701_87_f&fid=39187&url=http%3A%2F%2Fgetbetterhealth.com%2Fan-interview-with-a-developmental-disability-nurse%2F2010.12.05 For my first interview, I thought I’d interview someone who would tolerate my novice interviewing abilities — my mother. Ginny, RN, BS, DDRN has been a nurse for over 30 years, most of that time in the Intensive Care Unit. (The apple did not fall far, did it?) She currently works as Developmental Disabilities Nurse and has done so for nine years. A developmental disability is defined by Wikipedia as “a term used in the United States and Canada to describe life-long disability attributable to mental and/or physical impairments, manifested prior to age 18.” Ginny says that her clients have a range of mental and physical disabilities including cerebral palsy, Down Syndrome, mental retardation, and autism, with autism being the most prevalent. Her clients live in normal houses a... Better Health blogs http://www.medworm.com/rss/comments.php?id=4230156 Sun, 05 Dec 2010 22:00:12 +0100 4230156 http://www.medworm.com/index.php?rid=3625779&cid=t_112701_150_f&fid=35777&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FPharmalot%2F%7E3%2FQsRJ70WHp98%2F You better watch out, you better not lie. Here’s the reason I’m telling you why - the US Securities and Exchange Commission is threatening to come to your town if you lie about your data. The SEC has just charged Elizabeth Dragon, a former senior vp of R&D at Sequenom, with lying during at least three public events where she made presentations to analysts and investors about a prenatal test for Down syndrome. She pleaded guilty and is now barred from serving as an officer or director of a public company, but didn’t admit or deny any of the charges. A financial penalty comes later. Dragon claimed the test could predict whether a fetus had Down syndrome with almost 100 percent accuracy, but the SEC issued a statement charging Dragon knew the test was “far less ac... Pharmalot blogs http://www.medworm.com/rss/comments.php?id=3625779 Wed, 02 Jun 2010 21:09:29 +0100 3625779 http://www.medworm.com/index.php?rid=3136614&cid=t_112701_111_f&fid=36048&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAHeartyLife%2F%7E3%2FBGgesr1ruaw%2F When a woman is pregnant, in her mind, her baby will be perfect. But perfect isn’t always what we think it will be. Sometimes, our perfect baby is born with a problem, such as spina bifida (hole in the back) or missing a limb, or a heart defect. Birth defects can sometimes be prevented and January is National Birth Defects Prevention Month. The goal of the month is to educate as many people as possible, not just mothers, about prevention of preventable birth defects. Taken from the National Birth Defects Prevention Network, here are 10 important facts you should know about birth defects: 1 Birth defects affect one out of ever 33 babies in the United States and is the cause of death in one of every five infant deaths. 2 Folic acid (folate) is a vitamin that all women of childbearing ... A Hearty Life blogs http://www.medworm.com/rss/comments.php?id=3136614 Sat, 02 Jan 2010 10:41:36 +0100 3136614 http://www.medworm.com/index.php?rid=2846442&cid=t_112701_111_f&fid=36048&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAHeartyLife%2F%7E3%2FSB3XZQaBmSk%2F Among the health issues being noted in the month of October is Down syndrome, or trisomy 21. Down syndrome is a chromosomal disorder that results in physical and mental challenges for the child born with it. The National Down Syndrome Society says that one out of every 733 babies born in the United States has Down syndrome and there are currently about 400,000 Americans living with it. Physical problems Many children with Down syndrome are perfectly healthy, but more often than not, a child with the disorder will have some physical problems. The most common ones are: Heart defects, ranging from mild to severe Intestinal (bowel) problems Vision problems; many people with Down syndrome must wear glasses Hearing loss Frequent infections People with Down syndrome are also at higher risk for ... A Hearty Life blogs http://www.medworm.com/rss/comments.php?id=2846442 Wed, 30 Sep 2009 06:50:08 +0100 2846442 http://www.medworm.com/index.php?rid=2745525&cid=t_112701_111_f&fid=36048&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAHeartyLife%2F%7E3%2Ff4Jvq4b3k6E%2F Here’s some positive news for loved ones with Down Syndrome. A new wellness center will be opened in Chesterfield, Missouri, that will be devoted especially to adults with Down Syndrome. The center will be named for St. Louis Cardinal Albert Pujols, who has a daughter with Down Syndrome. The clinic will be the first of its kind in the state, and will focus exclusively on the lives of adults with Down Syndrome. The site is expected to attract many medical experts in Down Syndrome from all over the state. The center opens in November. Image: sxc.hu. Post from: Blisstree Down Syndrome Center for Adults (Source: A Hearty Life) A Hearty Life blogs http://www.medworm.com/rss/comments.php?id=2745525 Sat, 29 Aug 2009 22:48:29 +0100 2745525 http://www.medworm.com/index.php?rid=2715740&cid=t_112701_146_f&fid=38266&url=http%3A%2F%2Fsleepeducation.blogspot.com%2F2009%2F08%2Fsleep-apnea-in-adults-with-down.html A small study in the Aug. 15 issue of the Journal of Clinical Sleep Medicine shows that untreated obstructive sleep apnea is common in adults with Down syndrome.Results show that 94 percent of people with Down syndrome had OSA; 88 percent had at least moderate OSA with an apnea-hypopnea index of more than 15 breathing pauses per hour of sleep; 69 percent had severe OSA with an AHI of more than 30.This was much higher than the reported rate of OSA in the general population; it is estimated that at least two percent of middle-aged women and four percent of men have OSA.“Patients with Down syndrome have a great deal of risk factors for OSA,” senior author Dr. Carole Marcus told the AASM. “It was surprising how severe the illness was, and how the OSA was unsuspected by their caregivers.�... Sleep Education blogs http://www.medworm.com/rss/comments.php?id=2715740 Wed, 19 Aug 2009 16:37:00 +0100 2715740 http://www.medworm.com/index.php?rid=2637959&cid=t_112701_131_f&fid=34989&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FGeneticsHealth%2F%7E3%2F-Akq6-PAgBs%2F I was just reading about how prenatal screening can eradicate genetic disease (and reported it too) when I read another article that casts doubt on the entire procedure of pre-implantation genetic diasnosis (PGD). Used with in vitro fertilization, PGD is a biopsy of the developing embryos to look for signs of abnormalities. Obviously, only normal embryos are then implanted into a woman’s uterus to ensure that no abnormality will be present in the child. However, new studies on mice suggested that PGD can affect fetal, neonatal and adult development. The scientists found that biopsied embryos implanted after PGD result in lesser number of births. Adult mice that have been biopsied as embryos also showed neurodegenerative disorders disorders like Alzheimers and Down Syndrome, according ... Genetics and Health blogs http://www.medworm.com/rss/comments.php?id=2637959 Wed, 22 Jul 2009 03:46:00 +0100 2637959 http://www.medworm.com/index.php?rid=2441268&cid=t_112701_87_f&fid=34825&url=http%3A%2F%2Fwww.wesleyjsmith.com%2Fblog%2F2009%2F05%2Fpersona-non-grata-people-may-hold-key.html Well this is ironic: People with Down syndrome--against whom a concerted pogrom is being waged to wipe off the face of the earth via genetic testing and eugenic abortion or infanticide--may hold the key to an effective treatment for cancer. From the story: Scientists may have solved the mystery of why people with Down's syndrome seem to have a lower risk of some cancers.The extra copy of chromosome 21 which causes Down's appears to contain a gene that protects from solid cancerous tumours, tests on mice suggest. The gene seems to interfere with signals a tumour relies on to grow. The finding raises hope of new ways to prevent and treat cancer.At least some catch an important ancillary point to this story: Writing in the journal, the researchers, led by Dr Sandra Ryeom, said: "It is, perhap... Secondhand Smoke blogs http://www.medworm.com/rss/comments.php?id=2441268 Sun, 24 May 2009 06:24:00 +0100 2441268 http://www.medworm.com/index.php?rid=2089878&cid=t_112701_87_f&fid=34825&url=http%3A%2F%2Fwww.wesleyjsmith.com%2Fblog%2F2009%2F01%2Fnhs-breakdown-communication-breakdown.html I feel like ripping my hair out! How can something like this happen in a civilized country? Martin Ryan, who could not swallow after a stroke, was allowed to lie in a bed and starve to death over a period of 26 days! And surprise, surprise--he had Down syndrome. From the story:Mr Ryan, who had Down's syndrome, died in hospital in Kingston-upon-Thames. An internal inquiry by the hospital found that doctors had thought nurses were feeding him through a tube in his nose. By the time they found out this was not happening, he was too weak for an operation to insert a tube into his stomach.He died in agony five days later. Mr Ryan's distraught family, from Richmond, South-west London, are convinced he could have been saved by the correct treatment.One relative said of him: 'Martin will always be... Secondhand Smoke blogs http://www.medworm.com/rss/comments.php?id=2089878 Fri, 09 Jan 2009 05:11:00 +0100 2089878 http://www.medworm.com/index.php?rid=2052846&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2FXbfiuGrc-08%2F The Women’s Rights blog over at Change.org has a post about the Top 10 Moments of Feminism in 2008. The selection of Sarah Palin, Governor of Alaska, as Senator John McCain’s running mate sparked (I guess that’s an understatement) lots of discussion in general, and certainly in the autism and disability community, and in particular regarding Palin’s baby son Trig, who has Down Syndrome. Would you consider the choice of Sarah Palin, special needs mother, as a Top 10 Moment in the annals of special needs families in 2008? Tags: alaska, asd, asperger syndrome, autism, change, children, disability, down syndrome, Family, feminism, Health, john mccain, sarah palin, women's rightsShare This (Source: Autism Vox) Autism Vox blogs http://www.medworm.com/rss/comments.php?id=2052846 Thu, 18 Dec 2008 17:00:46 +0100 2052846 http://www.medworm.com/index.php?rid=2046638&cid=t_112701_87_f&fid=34825&url=http%3A%2F%2Fwww.wesleyjsmith.com%2Fblog%2F2008%2F12%2Faustralian-experts-want-to-target-down.html Can you imagine the if " the experts" suggested that genetic tests be done on all pregnant women to screen for supposedly undesirable racial characteristics or a propensity for homosexuality (if that could be done), with the goal of vastly reducing the number of babies born with those traits? There would a clarion outcry.Well, that is precisely what is happening in Australia, only the targets are unborn babies with Down syndrome, people that "the experts" want very much to cull from society by preventing most from ever being born. From the story: AUSTRALIA urgently needs a national screening policy for Down syndrome, experts say, after international research showed it could halve the number of babies born with the incurable genetic condition. Access to the four tests that help detect if a ... Secondhand Smoke blogs http://www.medworm.com/rss/comments.php?id=2046638 Thu, 18 Dec 2008 02:26:00 +0100 2046638 http://www.medworm.com/index.php?rid=2021584&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2FfTz9KniIb6s%2F , also known as the Kennedy-Brownback bill, authorizes the use of federal funds to train doctors to inform parents about Down syndrome or other prenatally and postnatally diagnosed conditions with up-to-date information on child development and life expectancy. If funded at the recommended $25 million over five years, the bill would provide for referral networks, to connect parents who’ve recently received a diagnosis with parents of older children, as reported in today’s Eagle Tribune (North Andover). Dr. Brian Skotko of Children’s Hospital Boston—who has a nephew with Down syndrome—published a study of the results from a survey of more than 1,000 mothers (2005): The central question was about how medical support could be improved for mothers who received a D... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=2021584 Sun, 07 Dec 2008 18:08:47 +0100 2021584 http://www.medworm.com/index.php?rid=1999139&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2FPFKbscC6jug%2F A new national strategy for screening for Down syndrome in Denmark has halved the number of Down Syndrome births and led to a 30% increase in infants diagnosed with the condition. The Danish National Board of Health issued guidelines for prenatal screening and diagnosis for Down Syndrome in 2004; these guidelines (from Science Daily) included the offer of a combined test for Down Syndrome (based on combination of maternal age, plus serum and nuchal screening) in the first trimester. This test gave women a risk assessment for Down Syndrome at an early stage in the pregnancy. Women whose risk was higher than a defined cut off were referred for invasive diagnostic tests (chorionic villus sampling or amniocentesis). The study is published in the November 27th British Medical Journal.It was rec... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=1999139 Sun, 30 Nov 2008 18:32:37 +0100 1999139 http://www.medworm.com/index.php?rid=1990545&cid=t_112701_87_f&fid=34825&url=http%3A%2F%2Fwww.wesleyjsmith.com%2Fblog%2F2008%2F11%2Faustralia-allows-family-with-child-with.html This is a follow up of an earlier post discussing Australia's refusal to grant a German physician and his family permanent residency because his son has Down. Well the light of publicity apparently so embarrassed the country that the decision has been reversed. From the story:A decision to deny a German doctor and his family permanent residency because his son had Down syndrome has been overturned by the immigration minister.Bernhard Moeller, a specialist physician, moved his family to Horsham, in Victoria's west, two years ago to help fill a doctor shortage. But the Migration Review Tribunal (MRT) yesterday upheld the immigration department's decision to deny Dr Moeller's permanent visa application because his 13-year-old son has Down syndrome and was deemed a potential drain on the healt... Secondhand Smoke blogs http://www.medworm.com/rss/comments.php?id=1990545 Wed, 26 Nov 2008 22:30:00 +0100 1990545 http://www.medworm.com/index.php?rid=1990547&cid=t_112701_87_f&fid=34825&url=http%3A%2F%2Fwww.wesleyjsmith.com%2Fblog%2F2008%2F11%2Filliberalism-of-lefts-eugenics.html I am a man with deep connections to the political left, for example, writing four books with Ralph Nader. But those Movement (not Nader) ties frayed and then snapped, first due to the Left's embrace (before the disability rights movement engaged the issue) of assisted suicide, reinforced subsequently by its (general) support for eugenics ideas and disdain for what I now call human exceptionalism.These prejudices have infected the health care and governmental systems in the West, as we have discussed here repeatedly, a point also made in a column published in the very left wing UK newspaper The Independent by a columnist who tends to push against the leftist tide. In "Shame on the doctors prejudiced against Down Syndrome,"Dominic Lawson writes: For make no mistake: despite all the progress ... Secondhand Smoke blogs http://www.medworm.com/rss/comments.php?id=1990547 Wed, 26 Nov 2008 17:33:00 +0100 1990547 http://www.medworm.com/index.php?rid=1984960&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2FrIzsMU6Hswg%2F More children with Down’s Syndrome are being born in the UK, according to today’s Times Online. Widespread screening was introduced in 1989, and led to a steady fall in new instances of Down’s syndrome. From 717 babies born with Down’s that year, the total decreased each year, to 594 in 2000. During the next six years the birth rate for children with Down’s rose by 15 per cent, reaching 749 in 2006, the most recent year for which figures are available from the National Down Syndrome Cytogenetic Register. It’s noted that, while most women who receive a prenatal diagnosis of Down’s Syndrome choose not to have the child, “many are now deciding to give birth.” Carol Boys, chief executive of the [Down’s Syndrome Association, had not expected the r... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=1984960 Mon, 24 Nov 2008 19:36:48 +0100 1984960 http://www.medworm.com/index.php?rid=1924399&cid=t_112701_87_f&fid=34825&url=http%3A%2F%2Fwww.wesleyjsmith.com%2Fblog%2F2008%2F10%2Faustralia-children-with-down-syndrome.html This is shameful eugenics, morally akin in my view, to laws in the USA that barred disfavored nationalities and Jews in the years running up to World War II. A German family has asked for permanent residency in Australia and the country said no because their son has Down syndrome. From the story:A German doctor hoping to gain permanent residency in Australia said Friday he will fight an immigration department decision denying his application because his son has Down syndrome. Bernhard Moeller came to Australia with his family two years ago to help fill a doctor shortage in a rural area of Victoria state. His temporary work visa is valid until 2010, but his application for permanent residency was rejected this week. The immigration department said Moeller's 13-year-o... Secondhand Smoke blogs http://www.medworm.com/rss/comments.php?id=1924399 Fri, 31 Oct 2008 16:20:00 +0100 1924399 http://www.medworm.com/index.php?rid=1895043&cid=t_112701_131_f&fid=34989&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FGeneticsHealth%2F%7E3%2Fq27N3Quhfbc%2F Medications that have been slowing the mental decline in Alzheimer’s patients are showing promise as drugs that can boost the mental skills of children with Down Syndrome. Two of those promising drugs are Aricept and Exelon, which were found to increase skill levels of Down syndrome children in small clinical trials. Aricept and Exelon are FDA-approved drugs for treating Alzheimer’s. Doctors had observed that adults with Down Syndrome were developing Alzheimer’s disease at an earlier age than the general population. The drugs were given to children, in appropriate doses, to test if they could delay the development of the illness. The results surprised the physicians. In a very short period of time, the children’s communication skills and understanding improved. Dr... Genetics and Health blogs http://www.medworm.com/rss/comments.php?id=1895043 Wed, 22 Oct 2008 08:24:32 +0100 1895043 http://www.medworm.com/index.php?rid=1873107&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2FR4jlPirM3Kc%2F Currently, there’s no prenatal genetic test for autism. Long ago (as in “around the time I first started writing this blog”) I referred to such testing as “fighting word“: While some would welcome the notion of knowing that a child-to-be would have a disability, others have been quick to point out the possibility of people choosing to abort a fetus if a disability were detected. In the October 13th Babble, an online web community for a “new generation of parents,” Karen Dempsey writes about Choosing (a) Life: They said our baby would have Down’s; we said we understood. We had no idea. Having conceived her second child after a year of infertility treatments, Dempsey was concerned that the “risks of amniocentesis outweighed the chances it... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=1873107 Tue, 14 Oct 2008 06:46:53 +0100 1873107 http://www.medworm.com/index.php?rid=1873109&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2FnZDAe0tweKo%2F Says Janice Nodvin, program director of the adult Down syndrome program at the Institute for the Study of Disadvantage and Disability, a nonprofit advocacy organization based in Atlanta, about her now 29-year-old son Evan in today’s Atlanta Journal-Constitution: “Evan is a man, and he should always be treated as a man, even though we sometimes have to help him out.” While doctors predicted that Evan would not live until adulthood, he now works at a senior adult day care center, lives on his own, takes public transportation, votes. The Atlanta Journal-Constitution article is about the issues facing the aging parents of developmentally disabled adults and also notes that ….Nodvin said, transitioning her son into the community has been a tricky dance. Without a persona... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=1873109 Mon, 13 Oct 2008 21:03:41 +0100 1873109 http://www.medworm.com/index.php?rid=1798018&cid=t_112701_87_f&fid=34825&url=http%3A%2F%2Fwww.wesleyjsmith.com%2Fblog%2F2008%2F09%2Fattempt-to-id-babies-with-down-for.html According to a UK study, the concerted drive to prenatally detect Down syndrome or other anomalies through genetic testing aimed at eugenic abortion is also causing the deaths of babies who have no disabling condition through miscarriage. From the story: Two healthy babies are miscarried for every three Down's Syndrome babies that are detected and prevented from being born, research has suggested...DSEI chief executive Frank Buckley and Professor Sue Buckley, who conducted their research using a database at London's Bart's Hospital, also point out that 95 per cent of women deemed to be high risk by the blood test will not be carrying a baby with the disorder, yet most go on to have the tests."The screening for Down's syndrome has consequences for every pregnant woman," they said. "You cann... Secondhand Smoke blogs http://www.medworm.com/rss/comments.php?id=1798018 Wed, 17 Sep 2008 02:54:00 +0100 1798018 http://www.medworm.com/index.php?rid=1775597&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2FWzPUvEiUjuQ%2F Without Trig, Governor Sarah Palin’s infant son who has Down Syndrome, what might discussions about her being Senator John McCain’s running mate be like? Gov. Palin’s older sister, Heather Bruce, has an autistic child, an article in today’s New York Times notes: Before her son was born, Ms. Palin went to extraordinary lengths to ensure that his arrival would not compromise her work. She hid the pregnancy. She traveled to Texas a month before her due date to give an important speech, delivering it even though her amniotic fluid was leaking. Three days after giving birth, she returned to work. But with Trig in her arms, Ms. Palin has risen higher than ever. Senator John McCain, the Republican nominee for president, says he selected her as his running mate because of h... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=1775597 Mon, 08 Sep 2008 11:00:47 +0100 1775597 http://www.medworm.com/index.php?rid=1754774&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2Fx7BUrH3HJiQ%2F So as you may not, or may, have noticed, there is still some wonkiness going up with this blog. The good folks who handle are matters technological, software-related, and the like, have been working hard to migrate b5media’s blogs over to a new server and all should be well, webpages should load and updates occur, very soon. One (”adverse effect?“) of the server migration has been that the sidebar (to your right) has not been updating with recent posts and recent comments. So if a comment is left on a post written a couple weeks or months ago, unless you’ve decided to sit down and read every single post (which I don’t recommend; some posts are more post-worthy than others), some good comments will go missed. I’ve rounded up a few of them below, with a bi... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=1754774 Wed, 03 Sep 2008 05:00:45 +0100 1754774 http://www.medworm.com/index.php?rid=1639275&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2F339987202%2F Writer Ann Bauer’s adult son is autistic and, in an article in today’s Washington Post, she writes about the question that are always just under the surface of my conscious thoughts: What happens to Charlie after Jim and I are not here? Bauer, the author of the novel A World Ride Up the Cupboards, has described a terrifying episode in her family’s life, when her son (at 17) was misdiagnosed as psychotic and had autistic catatonia. She’s also written about the struggle to find and help him keep a job, and how, too often, she’s gotten the message that Autistics Need Not Apply. But the struggles are also because of the world we live in, a world that talks about “raising awareness” but has yet to provide sufficient (or even adequate) and appropriate se... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=1639275 Sat, 19 Jul 2008 16:55:14 +0100 1639275 http://www.medworm.com/index.php?rid=1546745&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2F320647674%2F Are disability dolls a “blessing or a sick joke“?, the June 25th Times (UK) asks. There are dolls with prosthetic devices, dolls with Down Syndrome, and Chemo Friends for kids with cancer (and back in 1997, Mattel came out with Share a Smile Becky, in a wheelchair). My Autism Dolls makes ragdolls from puzzle piece fabric, and My Sibling Dolls come with stories about the special needs of siblings with developmental differences and are assembled and packaged by special needs teens and adults. Not sure what an autistic doll would look like—-like any doll, I would say (we’ve always been more of a stuffed animal household). More about the “niche marketing” of disability dolls at What Sorts of People. Tags: asd, asperger, autism, autism blog, cancer, disabili... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=1546745 Thu, 26 Jun 2008 16:37:55 +0100 1546745 http://www.medworm.com/index.php?rid=1536713&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2F317263971%2F A study underway at the University of Michigan seeks to get 60% of kids with disabilities (Down syndrome, autism) riding a bike in five days. Afterwards, the children are  tracked for a year to chart the effects on their emotions and intelligence. Kinesiology division professor Dale Ulrich is overseeing the study; he started to work with a program called Lose the Training Wheels under retired engineer and professor Richard Klein several years ago. The June 20th Detroit Free Press quotes Laura Bailey of the University of Michigan News Service as saying that “just 10% of kids with Down Syndrome can ride a bike, and autistic children have similar issues.” Just 10%—-I don’t know the source for this figure, and I don’t know the percentage of autistic children who ... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=1536713 Sun, 22 Jun 2008 16:30:46 +0100 1536713 http://www.medworm.com/index.php?rid=1419626&cid=t_112701_87_f&fid=34825&url=http%3A%2F%2Fwww.wesleyjsmith.com%2Fblog%2F2008%2F05%2Falaska-governor-walks-walk-gives-birth.html I don't like to comment about issues involving individual family matters, but this is an exception: Alaska Governor Sara Palin and her husband have welcomed a new baby with Down syndrome into the world. From the story:The doctor's announcement in December, when Palin was four months pregnant, presented her with a possible life- and career-changing development. "I've never had problems with my other pregnancies, so I was shocked," said Palin, a mother of four other children. "It took a while to open up the book that the doctor gave me about children with Down syndrome, and a while to log on to the Web site and start reading facts about the situation."The 44-year-old governor waited a few days before telling her husband, Todd, who was out of town, so she could understand what was ahead for t... Secondhand Smoke blogs http://www.medworm.com/rss/comments.php?id=1419626 Mon, 05 May 2008 03:15:00 +0100 1419626 http://www.medworm.com/index.php?rid=1152562&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2F217229324%2F Yes it’s for the exercise and with the hope of Charlie picking up some new skills of catching and throwing and shooting: These are all reasons why we signed Charlie up for Special Olympics basketball. But it’s also for the reason that Gemma Gallagher states on watching her 14-year-old son, David, playing basketball with the University of Albany women’s basketball team: “Often while watching David, I can see that he wants to be a part of something, but doesn’t have the ability to relate mutually with others…….In reality autism interferes with having real friendships. We’ve just been watching and enjoying today so much. Just seeing him smile makes this a good day.” Charlie did not walk up to any kids last Wednesday and say “hi&#... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=1152562 Tue, 15 Jan 2008 20:30:59 +0100 1152562 http://www.medworm.com/index.php?rid=1142467&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2F214686515%2F Shane Graham had Down’s syndrome, autism and sickle cell anemia and was one of 11 disabled children from New York who had been adopted by 62-year-old Judith Leekin. Today’s Associated Press reports that Leekin used four aliases to make money on the subsidies totally over $1.2 million for the children’s care. She adopted them between 1988 and 1996 and moved them to Florida in 1998 Nine of the children (aged 15 to 27; many have “mental and physical handicaps”) are in Florida state custody; one 19-year-old is on his own—-and Shane Graham is missing. authorities are considering a murder charge against Leekin as they try to find the 11th child, a boy named Shane Graham who would now be 19. He was last seen with Leekin in 1999 or 2000. The other adopted chil... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=1142467 Fri, 11 Jan 2008 00:17:43 +0100 1142467 http://www.medworm.com/index.php?rid=1121744&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2F208089588%2F Whether in Piscataway, NJ or in Bahrain, school is the start. The Sneha centre for children with special needs is the only centre of its kind for specially challenged expatriate children in Bahrain. Pakistani Mohammed Rafeeq, a welder in Bahrain, could not afford the fees which were more than his salary. The Gulf Daily News notes that his 5-year-old daughter, Iman, has autism and Down Syndrome; she takes “medication everyday” and also, her father notes, “’stands in the sun for several hours without eating, drinking or caring about the heat.’” The Sneha centre is open only for a few hours in the morning (9am - 11am) and one hopes it will make at least a small difference for Iman and her family. The staff at the Sneha centre are volunteers from the Indian ... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=1121744 Sat, 29 Dec 2007 16:07:08 +0100 1121744 http://www.medworm.com/index.php?rid=1101495&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2F202089749%2F Will 2007 go down as the year in which interest in autism reached new heights? Autism has become an issue on the platforms of presidential candidates. This year saw the introduction of the Expanding the Promise for Individuals with Autism Act of 2007, which, if passed, would provide some $350 million in supports and services for autistic persons and their families. The Combating Autism Act (CAA) was signed into law by President Bush almost a year ago on December 19, 2006; this year saw the meeting of the Interagency Autism Coordinating Committee (which was authorized by the CAA) to develop a Strategic Plan. In February, the Centers for Disease Control and Prevention presented new statistics showing that the prevalence of autism in children is now 1 in 150. From January on, a number of book... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=1101495 Tue, 18 Dec 2007 09:00:13 +0100 1101495 http://www.medworm.com/index.php?rid=836890&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2F151335722%2F Two recent posts here about playwright Arthur Miller and his son, Daniel Miller, who was placed in a “home for infants” in New York City soon after his birth, have provoked much discussion. What happens to a family when a child with developmental delays—Daniel Miller had Down syndrome, my son Charlie has autism—is born? Suzanna Andrews’ September 2007 Vanity Fair article suggests that one reason Daniel Miller was institutionalized was due to concerns that Miller had about how his daughter, Rebecca Miller, might be affected by growing up in a family with a disabled child: A friend of Inge’s recalls visiting her at home, in Roxbury, about a week later. “I was sitting at the bottom of the bed, and Inge was propped up, and my memory is that she was h... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=836890 Sun, 02 Sep 2007 18:45:36 +0100 836890 http://www.medworm.com/index.php?rid=835495&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2F150628316%2F New York Times theater critic Jason Zinoman reflects on the September 2007 Vanity Fair article about Arthur Miller and his son Daniel in A New Stage for Arthur Miller’s Most Private Drama of Fathers and Sons. While Zinoman notes that Daniel had been “something of an open secret for years,” he also says in the same sentence that “most people did not learn” about Daniel until the recent Vanity Fair article—but not included in that phrase “most people” would be the disability community, who had indeed been aware of Daniel’s existence. Zinoman records the reactions of those who knew Miller—”It’s a subject that most people who knew Miller would rather not discuss”—and of others, such as James Kirchick in a blog on Comm... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=835495 Fri, 31 Aug 2007 18:00:12 +0100 835495 http://www.medworm.com/index.php?rid=828184&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2F149298685%2F 45 years ago, playwright Arthur Miller institutionalized his infant son, Daniel Miller, at a state facility in Connecticut. Miller did not mention his son in his own autobiography and did not visit him. 40 years ago, Lena DeRose gave birth to her sixth child, Randy who, like Daniel Miller, has Down Syndrome. Notes the August 28th Daily Herald (Utah): [Now 84-year-old Rose] has had her son by her side since the day four decades ago when she told off a doctor for suggesting she leave her newborn in the care of the state. “I said ‘How can you insult me like that?’ ” Facing the ravages of age, including death, groundbreaking parents like Lena [sic] are among the first who have to ask themselves what will happen to their 40 and even 50-year-old mentally disabled sons or... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=828184 Tue, 28 Aug 2007 17:30:14 +0100 828184 http://www.medworm.com/index.php?rid=805989&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2F145257139%2F Charlie looking over at me as he sat eating watermelon and a hamburger at the table this evening, his eyes big, his face happy and all of him deeply tanned from ocean swimming and time on the beach: It’s the kind of moment that you hope you can always remember, Charlie enjoying the things he likes (and that I know he likes) and revelling in his latest new endeavor, surfing. When I see him sitting there at the table of the beach house, when I think of all the time traveling we have spent together, it is impossible for me to imagine life without Charlie. And yet I can imagine it, knowing that, in a previous generation, a child like Charlie would have been institutionalized. Like Jim’s first cousin, JP. Like Daniel Miller, the son of playwright Arthur Miller. A feature article in ... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=805989 Fri, 17 Aug 2007 16:41:51 +0100 805989 http://www.medworm.com/index.php?rid=773387&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2F139760377%2F 100,000 children with intellectual and developmental disabilities were housed in 162 state facilities—some say as many as 200—-across the US in 1967. This was the “height of institutionalization,” notes today’ s CNN.com. The CNN.com story, Families get help finding loved ones lost in institutions, focuses on the efforts of some families seeking to reconnect with relatives who were sent to institutions many, many years ago. Jeff Daly, who last saw his sister, Molly, when he was six years old in 1957, has made a film about his efforts to reconnect with his sibling, Where’s Molly?. Molly, born with a club foot and a lazy eye, was three when she was sent away to live at Fairview; the CNN.com story notes that “When she was around 2, records show, docto... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=773387 Thu, 02 Aug 2007 00:37:21 +0100 773387 http://www.medworm.com/index.php?rid=549042&cid=t_112701_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2F109837748%2F My son Charlie can talk. Most of what he says are requests for things he would like (from “ketchup!” to “Mommy’s hand” to “practice piano”). When it comes to talking about what part of his body might be bothering him—-if he has a headache or stomache, for instance—or what happened earlier in the day (at school, in particular), the language is not yet there. Consequently, I rely on communicating with his teacher frequently (mostly via email). Facilitating more interactions and even actual visits of parents in schools and school staff at home have been another way. I was reminded of this while reflecting on soometing I posted about a few days ago, a program in which graduate students in special education and psychology are matched with fa... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=549042 Tue, 17 Apr 2007 19:29:45 +0100 549042