Blogging Against Disablism Day, May 1st 2008

I’m gonna go all political on you today, this glorious day of Blogging Against Disablism Day (and for a chance for a first edition copy of GIFTS drop me a comment, see below) Let me ask this. Have you chosen your presidential candidate? Here in Indiana, we get to participate in the Primary vote next Tuesday May 6th. Quite exciting actually. Did you know Obama is the only candidate that is behind Fully Funding the Individuals with Disabilities Education Act, IDEA? If you haven’t seen Barack Obama’s plan, then go to BARACK OBAMA’S PLAN TO EMPOWER AMERICANS WITH DISABILITIES . Here is his position on Fully Funding the Individuals with Disabilities Education Act: Barack Obama has been a strong and consistent advocate for fully funding the Individuals with Disabilities Education Act (IDEA). Congress promised to shoulder 40 percent of each state’s “excess cost” of educating children with disabilities, but it has never lived up to this obligation. Currently, the federal government provides less than half of the promised funding (17 percent). Children are being shortchanged, and their parents are forced to fight with cash-strapped school districts to get the free and appropriate education the IDEA promises their children. Fully funding IDEA will provide students with disabilities the public education they have a right to, and school districts will be able to provide services without cutting into their general education budgets. In addition to fully funding IDEA, Obama will ensure effective implementation and enforcement of the Act. IDEA reaches every public school. Approximately 12 percent of public school students receive assistance through special education. When IDEA was passed in 1975 the law included a commitment to pay 40 percent of the average per-student cost for every special education student. That commitment has never been met. Congress is currently funding IDEA at less than 18 percent. See the impact on your state of proposals to reduce the federal share. No, I have never voted for a Democrat for President. But if Barack Obama, former Civil Right Attorney, gets there, yes, he will get our vote. And I work for a Republican Attorney General! Yes, that is just how important this election is for fully funding IDEA. Really. Now lets hope we can scrape up enough money to buy gas get to the primary on Tues. May 6th _____________________ Oh and on this wonderous of Blogging Against Disablism Day, May 1st 2008, just leave a little note and I will put the names into a hat and have the Nash man pull out a winner for a fantastical GIFT....the unique first edition of Gifts: How Children with Down syndrome Have Enriched Our Lives Copyright 2006 by Booksurge LLC Winner to be chosen on Mothers Day. yeah, how lucky are you all today? A little politics and a big ol' GIFT.

GIFTS: Mothers Reflect on How Children with Down syndrome Enrich Their Lives NEWS

GIFTS has been chosen for two awards! 2008 National Parenting Publications Awards (NAPPA): Gold Award 2008 Mom's Choice Awards: Silver Recipient, Special & Exceptional Needs There will be a GIFTS signing set up by Woodbine Publishing at the 2008 NDSC Conference in Boston. We are planning to attend, as BigDawg is going to be presenting with the DADS group at the conference, so I will be there to sign. Now that will be a bit strange.Also, GIFTS II is being published in Spring of 2010. No children featured in GIFTS will be featured in GIFTS II. Woodbine is hosting a contest to solicit cover photos for Gifts II. If you would like more information email me at jehjms@yahoo.com. Here are the submission guidelines for GIFTS II: The second volume of Gifts will include stories about individuals with Down syndrome written by a wide variety of people, including: family members (such as parents, siblings, and grandparents) friends (such as neighbors, babysitters, and other associates) professionals (such as teachers, doctors and nurses, and therapists) **PLEASE NOTE** Because most of the stories in the first volume of Gifts are mothers' accounts of adjusting to their young child's diagnosis, Gifts Volume II will include stories that offer other perspectives and experiences. We are especially interested in stories about school-age children, adolescents, and adults. While mothers' stories in these categories will be considered for inclusion, the collection will emphasize stories written by other family members, friends, and professionals. TOPIC CATEGORIES Please write about one of the following gifts: Acceptance Describe how this individual exemplifies healthy acceptance of self, of others, and of life in general. How has he or she helped you to make peace with the circumstances in your life? Courage Describe how this individual has shown courage in the face of difficulty. What has he or she taught you about meeting life's challenges? Friendship Describe what this individual has taught you about being a true friend. How does he or she exemplify the values of kindness, cooperation, and/or trust? Awareness Describe how this individual has opened your eyes. As a result of your relationship with him or her, what truths do you now understand? What beauties can you now see? Joy Describe how this individual brightens your days. How has he or she brought love, laughter, and/or happiness into your life? Your story should describe how an individual with Down syndrome has enriched your life. Your story must be unpublished, or if it has been published you must own the full rights to the piece. Your story must contain a clear main idea supported by examples. Your story should employ creative writing techniques such as the use of descriptive language, symbolism and imagery, and dialogue. Remember the first rule of creative writing: show, don’t tell. Your submission should have a descriptive title, an engaging beginning, and a concise, memorable ending. Compose your story in a plain, 12-pt. font using a word processing program. Single-space your text. Leave an empty line between paragraphs; do not indent or use any tabs. No handwritten submissions will be accepted. Submissions must be between 500 and 2000 words in length (1-4 single-spaced pages). Include the following information in the upper left corner of the first page of your story: Full name, street address, phone number, email address, story title, topic category, and word count. Do not send your file as an attachment. Copy your entire file and paste it into the body of an email. Put your last name and the title of your story in the email subject line, like this: mylastname_mystorytitle. Send the email to gifts.volume.2@gmail.com. Submission Deadline NOW EXTENDED to September 1, 2008. You will be notified through email regarding your submission's status by January 1, 2009. If you have questions, please contact Kathryn Lynard Soper, editor, at kathryn_soper@segullah.org.

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.

It still gets me - Get it Down 31 for 21: post 14

This Montage still brings lumps.

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.

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.

GIFTS in the news

Seeing the light: Mother of a child with Down syndrome says parents should enjoy the journey and a quote from my excerpt of Gifts is included in the article: "He has taught me a lesson I still work through every day — that the value of a life, a human, of a child, is measured not by how much he or she can accomplish, but how much he or she can teach others about what really matters." — Janine Steck Huffman

GIFTS feedback

I haven't shared much I have gotten in the form of feedback from the GIFTS book on my site. Most is here.... But personally I have received some emails and even a phone call as a result of my chapter in GIFTS. I wanted to share one email from this week. I am so thankful GIFTS is doing its intended work! Hi, Jan - My husband and I live in Fort Worth, Texas, and have two children. (name deleted) (our little guy with Down syndrome) will be 3 this summer and (name deleted) is 8 months old. A few weeks ago a friend gave us a copy of Gifts. As I thumbed through it adoring all the pictures in there, I have to admit that Nash's stuck out to me the most - so cute! I began scanning your entry and noticed the connections... I attended IU in Bloomington and most of my immediate family still lives in the Indianapolis area. I checked out your website and enjoyed seeing all the pictures of Nash and all the work you and your husband do with the IDSF and other groups. Thanks for sharing your story. Name deleted thank you for your emails.......

Beyond The Diagnosis Part 4

Tonight on our local news channel in Indianapolis, WTHR, lead anchor, Andrea Morehead, conducted part 4 of her "Beyond the Diganosis" series. Here are parts 1-3 Here is the one tonight, which also promoted GIFTS. Welcome to the world Maison ! I requested that Woodbine send a copy of GIFTS to her and she emailed that she loved it. Thank you for showing the GIFTS of our children Andrea.

GIFTS......it's here

republished by Woodbine, just in time for therecent New York Times article by Amy Harmon, covering the American College of Obstetricians and Gynecologists new screening procedure for Down syndrome and a few of the GIFTS contributor's views on this recommendation.... I was contacted as a Pro-choice contributor to GIFTS by Amy Harmon and we had a little interview over the phone on Thursday. There will be a follow up article in the NYT on Sunday on the ACOG recommendations and pro-choice views. I don't know if I will end up in the article or not. But I do know Ms. Harmon is trying to make this a pro-life vs pro choice issue. I simply told her I didn't see the ACOG recs as a pro choice or pro life issue- I see this as an education issue. Educate those that get a diagnosis of Ds with the right information; don't scare them. Give them real people who have been there, done that. Not a pat on the back, and an "I'm sorry". Give them examples of real life situations, where we live everyday with our children and adults with Down syndrome and we are not suffering, we thrive and actually have fun, enjoy life, and THEY are living proof that choosing termination is not the best option for THEM. And personally, the 90% termination rate for those that receive a prenatal diagnosis of Down syndrome is very misleading. There are many, like us, that did not choose to have prenatal testing. We CHOSE not to have an amnio. Our CHOICE was to have Nash. A child. We ended up with Nash, our child, who happens to have Ds. I am thankful everyday I didn't have an amnio. We made our choice. To have a child. And we hit the jackpot.

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.

Barnes & Noble to feature new edition of GIFTS

The new edition of GIFTS will be featured on the New Release table at Barnes & Noble from June 5 through June 18! That means the book will be placed on a table at the front of stores along with other new nonfiction. Then, in July and August, GIFTS will be given top-shelf placement in the Children with Special Needs section of the store. These are fantastic publicity opportunities that could have a big impact on the future of GIFTS. The bookselling industry works by a "sink or swim" mentality. If GIFTS sells well during its debut period, it will have a longer, more visible existence in Barnes & Noble, and will be more likely to have a strong presence in other bookselling venues as well. Many of us in the Down syndrome community went looking for a book just like GIFTS after our child's diagnosis, and couldn't find one. By purchasing copies of GIFTS and encouraging others to do the same, we can ensure that the thousands of parents who will be in our shoes in the coming months and years will be able to find the support they need. We are grateful to those who purchased copies of the first edition of GIFTS. The royalties have been used to provide copies of the book to Down syndrome support groups across the nation; we hope that these organizations will buy multiple copies of the book to give to new parents. But even if you already own a copy of the book and don't desire to own another, there are many ways you can put extra copies to good use. Donate a copy to your local library, hospital or clinic, and/or DS support group. Give copies to friends or family members. The royalties from these sales will be used to get books in the hands of parents in need. Each of us can make a difference by buying and sharing copies of GIFTS. Head into your local Barnes & Noble store in June and put your consumer dollar to a worthy cause! Together we can convince the world that the life of a child with Down syndrome is something to celebrate. Kathryn Lynard Soper, Editor