Considering Termination of your baby because of a prenatal diagnosis of Down syndrome?

I get a lot of hits on my blog from googling "termination and down syndrome". I hope you look around and don't just click away. I hope you email me for a copy of the Gifts book, ask questions, research, and call your local Down syndrome association for referrals to talk to a local couple that have walked the walked. Or call me. I will give you my phone number if you email me. Yes, it's your decision. And I am not going to judge you. Bigdawg and I discussed our options when we became pregnant with Nash at my age of 39, and we decided against prenatal testing. But, again, everyday I thank god we didn't have an amnio. Perhaps we would have run scared too, and then we wouldn't have known then, what we know now. Instead of being afraid, be informed.

An ambassador against fear

The triple-screen test, baby has down syndrome, termination, ultrasound, karyotyping,amniocentesis, chorionic villi sampling (CVS), percutaneous umbilical blood sampling (PUBS),trisomy 21, Down syndrome, duodenal atresia, heart defect, brachycephaly, mild ventriculomegaly, macroglossia, abnormal facies, nuchal edema, echogenic or hyperechoic bowel, pyelectasis, shortening of the limbs. Did you google some of the terms above which can be "markers" for Down syndrome to find out more information because you may be facing a prenatal diagnosis of Down syndrome and are scared? Please read on.....and contact me for a free GIFTS book, detailed at the side bar. Educate yourself- for your family, for your unborn child. An ambassador against fear By Beverly Beckham March 2, 2008 This is what "internationally renowned" Sherman J. Silber, M.D., writes in his "completely revised and updated" book "How to Get Pregnant," published by Little Brown and Co. last August: "The biggest fear of most pregnant women is that their child will be abnormal, and the most common abnormality they worry about is Down syndrome. . . . These children are severely retarded mentally, and they usually die before their thirtieth birthday." He also writes: "We can prevent couples from having to face the horror of giving birth to children with otherwise devastating genetic defects such as Down syndrome, cystic fibrosis, muscular dystrophy, mental retardation, etc., that terrify every woman who ever gets pregnant." Silber's book has sold more than 400,000 copies. It's been translated into Spanish, German, and Russian. He's been on "Oprah," "Good Morning America," and NPR. Silber may be popular, but he is wrong. "Most people with Down syndrome have IQs that fall in the mild to moderate range of retardation. Some are so mildly affected that they live independently and are gainfully employed," says the National Institutes of Health, the federal agency that speaks with authority on this issue. "Most of the health problems associated with Down syndrome can be treated, and life expectancy is now about 55 years," says the March of Dimes. And giving birth to a child with Down syndrome or cystic fibrosis or muscular dystrophy or mental retardation is not a "horror." Not according to every woman I know who has given birth to a child with these disabilities. It takes a long time to alter public perception, to dispel these untruths. I know. My granddaughter has Down syndrome. "This is Lucy," I say to someone new and Lucy smiles, or doesn't, because she is 4 and 4-year-olds can be sweet or they can be indifferent and stare at the floor. But mostly she is sweet and says "Hi" before bolting across a room to wherever she wants to be. Mostly she makes a good impression. And this is important because Lucy may be the only child with Down syndrome this person ever meets. Lucy doesn't know that she's an ambassador. She doesn't know that how she acts may determine what a person thinks of other people with Down syndrome. She doesn't know that she's up against misinformation and fear. Lucy frightens no one. She's a pretty girl with light brown hair pulled into two pony tails, sparkling green eyes, and a knack for leaving people who meet her not sorry and sad, but happy. Amy, my friend Anne's daughter, was the same way. She had cystic fibrosis. She lived for 11 years. Too short a time. But a good time, a beloved time, not a horror. Efforts to change the way people think about kids with disabilities are slow going because there are not enough Lucys telling the world that they're OK. Lucy is not on "Oprah." Lucy is not an "expert." But the truth is that Lucy shows people that Down syndrome is not the end of the world. This truth is in books, too, and in movies and blogs and in other people with Down syndrome. But who in the general population would hunt down "Praying with Lior," a documentary about a 13-year-old boy with Down syndrome who loves to pray? Who would read "Gifts," a collection of stories written by mothers of children with Down syndrome? Who would watch "Down Syndrome - The First 18 months," an educational video put out by Woodbine House? Who will read "Road Map to Holland - How I Found My Way Through My Son's First Two Years With Down Syndrome" when it's released next month? Who will read blogs about Down syndrome just to learn? Only people who have reason to learn. The rest of the world learns as they go, believing the facts that some "expert" gets wrong. So misinformation lives and old beliefs endure and negativity reigns. On paper, kids with disabilities do not make a good impression. On paper, Lucy is all negatives. Low muscle tone. Speech delayed. Cognitive impairment. Slow to walk, to learn, to grow. Even her almond-shaped eyes are a negative, though God knows why. They are beautiful, like her mother's, bright and full of wonder. But in person? Lucy charms. In person, Lucy is just a person, 4 years old, saying her hellos, then racing away to discover the world. http://www.boston.com/news/local/articles/2008/03/02/an_ambassador_against_fear/?p1=email_to_a_friend Beverly Beckham can be reached at bevbeckham@aol.com. Listen to Beverly's weekly podcast at boston.com/news/podcasts.

World Special Olympics in China- Get it Down 31 for 21 : Post 3

Click on the button for more information on th Get It Down- 31 for 21 challenge! One of our local Special Olympians is in China for the World Special Olympics so I have been following it today. His name is Sam McNew and he is an awesome weight lifter. He was recognized by the House in Indiana. Go Sam! The 2007 Special Olympics World Summer Games will be held in Shanghai, People's Republic of China, from 2-11 October 2007. The event will mark the first time the World Summer Games will be held in Asia, and only the second time they will be held outside the United States I heard a news segment on CNN news and it was all agush about the huge turn out in China for the opening ceremony; how Special Olympics is such a growing event because intellectual disabilities are so more accepted now; more opportunities etc. How China is now accepting those with intellectual disabilities so that they aren't sent off to live in institutions. I just found this article on Wall Street Journal that states Over the past few days, Mr. Hu has been photographed spending time with China's mentally disabled population, praising people who work with them and promising more help. As recently as the 1990s, a senior Chinese leader said China had no mentally disabled. As in many countries, traditional values shamed families with disabled members. Many mentally disabled people were literally kept out of public sight, with some families not admitting to their existence. But attitudes are changing and the Special Olympics seem to have capped a turnaround in China, at least at the top. All I could think of was the fact that if this were so, if intellectual disabilities are so more accepted now that a World Special Olympics brings in more than 80 thousand to the opening ceremonies in a country that just started accepting those with intellectual disabilities and bringing them "out of the closet", then what in hell is happening in the US? We have had legislation on the books for more than 32 YEARS allowing children with disabilities to be educated among all students, yet we still struggle with our kids. We have had early intervention services in place for 32 YEARS and yet we can't find speech therapists or get appropriate medical assistance for our kids. And yes, the best of all, if the intellectually impaired are so more "accepted" now then why is the termination rate at 90% in the US and more detailed prenatal testing being pushed. Just doesn't make sense. Unless you consider the dichotomy we deal with every day. We have two visions. One from the medical community when there is a prenatal diagnosis and a couple of scared parents, and one from the public relations desk when those same kids are in classrooms, doing sports, and getting married. So we need to know how to get the PR into the medical community and this is more than just the GIFTS book. It has to be huge. I know part of the assistance will be with NDSS and NDSC combining forces which I hear is coming soon. So for now, enjoy the World Special Olympics. And Go Sam.

Dallas Morning News letter to the editor

Virginia Arbery: Ending Down syndrome pregnancies bears all the marks of a pogrom 09:06 AM CDT on Sunday, July 8, 2007 The year Julia was born in New Hampshire, 1987, I was the only geriatric pregnancy in the state issuing in a Down syndrome child. When I recovered from the pediatrician's insult – I was 37 – I learned from him that the other nine mothers in the state to deliver Down syndrome babies were still in their 20s. I asked him why this was the case; conventional wisdom had led me to believe that the likelihood of giving birth to a Down syndrome child increased with maturity. When he told me that most woman over 34 usually had amniocentesis done to avoid giving birth to a Down syndrome child, I was stunned. After first being dismayed by – what to call it? – my demographic solitude, I soon turned my attention to what Down syndrome meant practically for my new infant. The books we quickly read, and the instruction from excellent social services helped us. Operating outside the realm of reason and structure were other powerful supports – call them graces. At the end of Julia's first week, I learned that a publisher friend of ours had lost his wife to colon cancer. We had known them since graduate school, and the widower came over to tell us that his wife gathered their eight children around her bed to pray for Julia and us every night of that first week. Even as she said goodbye to her own children and to the infant she had given birth to – an operation might have saved her and killed the baby inside of her – Susan was thinking about our challenge. I felt a liberating happiness over Julia, as did our little girls and their dad, for reasons too deeply private to explain. Julia's life soon began to bring out the excellences of others. She brought our little college community even closer together, a joy to the students and a prize to anyone who held her. Early Intervention trained us to stimulate areas of her brain by waking up facial muscles, working to get her to sit up or to crawl – a task she never mastered, scooting instead with her two hands and bottom. I would go from teaching the Declaration of Independence and the Federalist Papers, to a large room uptown with five other mothers propping up their floppy babies. Nothing else has ever quite brought home the meaning of "all men are created equal endowed by their Creator with certain unalienable rights and among them are life, liberty, and the pursuit of happiness." We were all working for that fullest expression of life and happiness for our babies. I thought about the "prudent" mothers who had aborted their own children with Down syndrome. I grieved for those who, exercising their reproductive rights – a new appropriation of the older notion of liberty, which was rooted in duty – would never know the profound satisfaction of raising such a child. I will never forget Julia's first birthday with all her sisters around her. When we finished singing happy birthday, Julia put her hands together and clapped for the first time. Of course, we all cried on cue. Things that were so ordinary for the others became accomplishments – triumphs. Julia slowed us down, and, instead of waiting for each stage of development to naturally emerge, we would coax it along, beckoning it with intentionality and art. She taught each child an intelligence of the heart, and she began to teach me patience. Each member in our family could give a personalized account of his or her relation to Julia. Every daughter, for instance, has a perspective on her own vanity because of her. Julia expected to be 3 inches taller when she turned 16; I solved that problem by buying her 3-inch platform wedges. But often it's not that simple. For instance, on the way to school she will pull down the visor mirror, look at herself, and say, "When I get to heaven, my eyes are going to be like my sisters', and I am going to be 5-foot-11, and my voice is going to sound like Kelly Clarkson's." I tell her that God made her the way she is, that she wouldn't be Julia any other way, that we love her just as she is, and that she is beautiful. Of course, not everyone thinks that way. Some told me I should not make the same mistake twice – to have my tubes tied. I'm glad I didn't. Our one son was born after Julia, when I was 40, and our seventh daughter – now a sophomore at Ursuline – two years later. Our son just graduated from Cistercian Preparatory School. Over the past few years, he and his classmates have helped to organize the bi-annual Down syndrome Dance. Will's friends love Julia, and she shamelessly loves them back. They'll all be here at her 20th birthday party Tuesday. She will probably sing "Desperado," as she did at the recent graduation of two of her sisters, belting it out on key and bringing the house down. I understand that the American College of Obstetricians and Gynecologists is offering women a safer method than amniocentesis to determine whether a child has Down syndrome. The College makes the argument that it is more responsible to inform parents of their options beforehand so that they can decide whether or not to let the baby live. This argument shakes me to the core, for it bears all the marks of a pogrom – the license to be aggressive against the most benign population conceivable. Until now I have never been an advocate of special needs' issues. I have quietly reared my daughter and her brother and six sisters. But I can remain silent no longer. Twenty years ago, many of Julia's potential friends who are like her were intentionally eliminated, perhaps out of fear or perhaps out of a desire for a regular family with regular children. I think of those thousands of children who will never change those families for the better. They will never be at a Down syndrome dance, never hug their grandmothers, unafraid of their wrinkles or of people's imperfections. Who will love us as well, as simply, with such undesigning candor if we invent a world protected from our difficult blessings? Ironically, scientific work on turning off the additional action of the genes that cause cognitive impairment in Trisomy 21 now offers more hope than ever before, especially at Stanford School of Medicine's Center for Research and Treatment for Down Syndrome (dsresearch.stanford .edu). More research dollars are going into killing these children before they are born than into this noble project of helping them. And why? Because citizens value their freedom? Are my husband and I less free because we might have Julia with us our whole lives? Hardly. We would probably be enslaved to many more false notions of reality. In any case, we must trust that there will be a meaningful work and life for Julia. Maybe one of her sisters will take her in. Maybe she'll live in a group home. These are all decisions we will have to make as a couple, as a family and with Julia. These will not be easy decisions. One thing is sure, though: She is our defining blessing. How could we have known that in advance? To accept her full humanity is to accept our real selves in all our imperfections. My son put it well in describing how Julia likes to personalize her lead pencils, tapping them on the table top as they become characters in her daily life – at school or at home. We will sometimes hear ourselves oddly repeated in her animated version of our loss of temper or other foibles. In describing this game Julia plays, our son wrote that as she taps her pencil people, she taps into us. Virginia Arbery teaches in the Master of Humanities Program at The University of Dallas and is the mother of eight children. Her e-mail address is varbery@sbcglobal.net. ____________________________ Edited 7/10/07 I emailed Virginia Arbery that Monday morning with the following: As a mom with a child with Down syndrome, advocate and contributor to the new book Gifts: Mothers Reflect on How Children with Down syndrome Enrich Their Lives, I thank you for writing your letter that appeared in the Dallas Morning News. I am hoping articles such as yours, along with our Gifts book help in some way to assist those with prenatal diagnosis to see how our children are not a burden, and to let the new recommendation on prenatal testing go to the way side for some parents to be. Our goal is to have a copy of this book in every obstetricians office and every Ds Outreach and support group. Together maybe we can make a difference, as you already have with writing this article and having your child in the 1980's; paving the way for us. thank you again, and I hope you don't mind that I posted your letter on my blog. Jan Huffman, mom to Nash 6 Her response: No, No, not at all, Jan. Thank you for the important work that you are doing. For years I have been teaching college students and teachers political philosophy and literature. I have trusted that my teaching about natural law and valuing life would change the tide. I know that I have impacted my students through the works they have read, but in this article, I had to directly and publically face the assault on our children. I truly appreciate the work you have done and are doing and am humbled by it. Best, Virginia

So you have a prenatal diagnosis of Down syndrome...

and are considering termination. You ask yourself, what kind of life would my child with Down syndrome have? What burdens would he or she place on our family? Oh, he/she will suffer so termination is best for him/her. Before you make that decision, spend some time really researching, meeting other parents of children with Down syndrome, and read THIS BOOK. and if you have a prenatal diagnosis and want a free copy of GIFTS, just email me. If you need a quick fix, READ THIS. Usually the decision to terminate has to do with your fears, and your inability to see potential in your unborn child with Down syndrome that is the factor in your hesitation to give birth to your child. Thanks Dave for the lesson......... Well Look At That Everybody noticed. Everybody stared. Eventually even me. We stopped at Petro-Can to fill up the car and had to wait until a lane cleared by the pump so we could pull in. We'd passed several other stations without line ups, but here we sat. Joe collects Petro-Points and refuses to gas anywhere else. It's one of his, um, quirks. I didn't notice anything at first, then I saw a young guy about twenty staring intently at something. I put my eyes on his gaze and slid along to see the object of his attention. "Oh, stop," I thought to myself. He was staring at a man, about the same age as he was, with Down Syndrome who was pumping gas into a car. "Surely," I thought, "people are used to seeing the disabled amongst us being out and in the community doing every day things." Then I noticed that everyone else was staring too. Really looking at this guy. This was more than "Wow look at the disabled guy pump gas." This was something else. So I took in the whole scene. He was pumping gas into a car. The car was empty. Forgive me for what I thought, but I thought that his mom or dad was probably in the service center going to the washroom. He finished pumping gas, went in to the little kiosk and paid. Now, I understood what people were looking at. staring at, seeing. He got into the car, on the driver's side. Started the engine. Drove off. Even I reeled at that. I had heard of people with Down Syndrome driving, but I'd never seen it before. My automatic assumption was that he was a passenger. That because he had Down Syndrome he'd never ever be in the driver's seat. They weren't staring at him. Those people at the gas station. I think that something different was going on. They were re-evaluating eveything they ever thought about someone with Down Syndrome. They were ripping apart pre-conceived notions. They were having prejudice challenged. Admittedly, so was I. Damn. Just when I thought that I had it all together, some guy with Down Sydrome drives me off the road. Makes me realize how deep my own prejudices run. I wonder, though, about the effect he will have. On me, it was immediate. I reached inside myself and raised the bar - set expectations higher - not for them - for me. But I wonder if that twenty something guy who's stare I'd noticed. Should he ever get the news that his wife is carrying a baby with Down Syndrome, will he remember the guy with the car, pumping gas. The guy who drove off. The guy who is living a life, unpredicted. The guy doing things, unexpected. The guy who dreams, unencumbered. I truly hope so.

Why I contributed to the GIFTS book.........

This is why....to give one perspective. This is too what I believe Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome, a growing group of parents are seeking to insert their own positive perspectives into a decision often dominated by daunting medical statistics and doctors who feel obligated to describe the difficulties of life with a disabled child. Prenatal Test Puts Down Syndrome in Hard Focus By AMY HARMON Published: May 9, 2007 A group of parents are trying to present positive perspectives on having a child with Down syndrome.

Beyond the Diagnosis

WTHR Channel 13 Indianapolis is currently running a three part series featuring............Down syndrome! The beautiful and talented anchor Andrea Morehead (who is visibly pregnant now, and of the wonderful age of 44) is presenting this series titled "Beyond the Diagnosis". As it is explained on the Channel 13 website: In this three-part series, Andrea Morehead talks to families with children wtih Down syndrome about the challenges they face as they try to change people's perceptions. Beyond the Diagnosis - Part One - Meet Lilly Roush and her parents, Liz and Matt. They talk candidly about the prognosis at birth, the medical challenges along the way and how their unwavering love gives them hope that Lilly will achieve goals beyond their dreams. Beyond the Diagnosis - Part Two - In Part Two of Beyond the Diagnosis, Andrea Morehead brings you the story of LaDonna Baker, who in her mid-forties was told about the Down Syndrome prognosis in her third month of pregnancy. She speaks candidly about how she found out. Her son, Aaron, has faced medical challenges since he was born and is currently at Riley Hospital for Children. LaDonna says she wouldn't change a thing. Andrea also will explore the controversy surrounding genetic testing and counseling for all pregnant women, regardless of age. You'll also meet a woman who is a national spokesperson for Down Syndrome and offers hope for families. Beyond the Diagnosis - Part Three - Katie Cortelyou is breaking down barriers every day. As a person with Down Syndrome who works at a local hospital, she touches lives all the time and challenges people's perceptions about what people with Down syndrome people can accomplish. She also gives hope to parents of children with Down Syndrome by volunteering at a local clinic. (edited to person first language) Andrea and I have emailed and I provided the GIFTS information as well as the DADS, and IDSF. I told her congratulations on her pregnancy! But I didn't ask the real question I wanted to ask......so its wait and see.........

Lucy is Learning, are the Doctors? and more....

This editorial was in the Boston Globe this week. It brings home the point of fear with prenatal diagnosis. Basic, primal fear. Fear of the unknown and the uninformed that result in termination of a baby with Down syndrome. I said it in my chapter in the GIFTS book that Ms. Beckham references in her article, that I am so, so thankful that we chose- yes chose as I am pro-choice - to not have invasive prenatal testing when I was pregnant with Nash. I might have been caught up in this fear. We made our choice, a choice to have Nash. We thought through the options we were given at the time prenatal testing was brought up by our OB. We chose- Nash. If you are reading this because you did a search for markers for Down syndrome (nuchal fold thickening, cardiac anomaly, Duodenal Atresia, hyperechogenic Bowel, bilateral renal pyelectasis, brachiocephaly, and choroid plexus cysts femur or humerus length below the fifth percentile, pleural effusion, intracardiac echogenic foci among some) and facing a prentatal diagnosis of trisomy 21 please do your baby a favor. Meet other parents of children with Down syndrome. Those that have had benefits of the federal law IDEA and now have their children included in regular classrooms, enjoying parties and sports activities, and living life. Talk to those that have accurate information on the health issues that might, yes, might, be associated with your unborn child. I say might because our son is very healthy, and many, many are that have Down syndrome. Call your local Ds chapter or NDSS for a new parent packet and more information. Or email me. Don't make a decision based on fear of the unknown. ____________________________________ BEVERLY BECKHAM Lucy's learning. Are doctors? The Boston Globe February 4, 2007 When I brush my granddaughter Lucy's hair and put it in a ponytail, I always kiss the back of her neck. And she giggles. She is 3. She talks. She dances. She goes to school. She plays house and tea, and kickball and follow the leader. She loves books and "Bambi" and church and playing with her cousin Adam. Lucy has Down syndrome. She looks and acts more like a 2-year-old than a 3-year-old. But is this so awful? Don't we say, "Children grow up too fast"? Lucy isn't growing up too fast. She's taking her time. She had heart surgery when she was 2 months old. It was awful, but she survived. And so did we. Hospitals are full of children with problems. Should they all be eliminated before they are born? Future screening tests may make this possible. Imagine if doctors told every parent all the things that could happen to their child. He might get cancer at 1, or diabetes at 2. Or asthma; it's rampant, you know. Or encephalitis. Or meningitis. He could lose his sight, his hearing, his ability to walk, to talk. He could have an allergy and bite into a peanut butter sandwich and die at school one day. Some women would choose not to have children. For decades, doctors frightened women into believing that babies with Down syndrome were better off in institutions. They can't learn, they told women. They'll ruin your life. Pretend you never had him. And because doctors knew best, many women did. Of course, now we know these doctors were wrong. They continue to be wrong. Now they're identifying Down syndrome in the womb so that these children don't have to be born. In December, the American College of Obstetricians and Gynecologists gave its imprimatur to a simple new test that screens for Down syndrome in the first trimester of pregnancy. Down syndrome, also known as Trisomy 21, is a genetic condition in which an extra chromosome alters an individual's physical and mental development. Women 35 and older are routinely screened later in a pregnancy. But the screening has many false positives, so to be certain, women have amniocentesis. Some 85 percent abort when told that their baby has Down syndrome. That's how frightened pregnant women are. The new screening is a blood test combined with an ultrasound, which measures the back of the fetal neck. Thickness there is a marker of Down syndrome. I kiss Lucy's neck and think of this. Women abort babies with Down syndrome because they are afraid. They are afraid of mental retardation. They are afraid of stares and "We're sorrys." They're afraid their child won't go to a prom. They're afraid of everything. And too many medical professionals don't assuage that fear. They stoke it. Most doctors are unduly negative when diagnosing Down syndrome. Two surveys of more than 1,000 mothers conducted by Dr. Brian Skotko of Children's Hospital and Boston Medical Center document this. One mother told how her genetic counselor "showed a really pitiful video first of people with Down syndrome who were very low tone and lethargic-looking and then proceeded to tell us [in 1999] that our child would never be able to read, write, or count change." Information that is not only negative, but wrong. People fear what they don't know. And people, doctors included, don't know enough about Down syndrome. A little known book, "Gifts," may change this. Subtitled "Mothers Reflect on How Children with Down Syndrome Enrich Their Lives," it is the work of 63 women who were afraid, too, before they brought their children home and loved them. A collection of short essays, it could be called "If I knew then what I know now." It is affirming, honest, current, and, unfortunately, out of print. But Woodbine House in Bethesda, Md., is reissuing it in July, and every member of the American College of Obstetricians and Gynecologists should read it. Because doctors need to learn what these women know. That children with Down syndrome are just children, full of life and curiosity and wonder. Some may have health problems, but the problems are treatable. They grow at a slower pace, and statistically may have shorter life spans , but so what? They're turtles, not hares. They're in the race with everyone else, but they go at their own pace. And they will get to the finish line in their own good time -- if they are given the chance. Canton resident Beverly Beckham can be reached at bbeckham@globe.com. Listen to Beverly read and talk about her columns in her weekly podcast at boston.com/news/podcasts. © Copyright 2007 The New York Times Company