Riverbend Down Syndrome Association Web Site en-US http://www.riverbendds.org Copyright © 1997-2012 Riverbend Down Syndrome Association. All rights reserved. Sun, 11 Dec 2011 14:45:00 CDT 563219 webmaster@riverbendds.org (Victor J. Bishop) http://www.riverbendds.org/images/riverbend.png http://www.riverbendds.org 18 18 Riverbend Down Syndrome Association http://www.riverbendds.org/jorgensen.html http://www.riverbendds.org/jorgensen.html Cheryl.Jorgensen@unh.edu (Cheryl M. Jorgensen) Sun, 11 Dec 2011 14:45:00 CDT Reprinted with the permission from Down Syndrome News, the newsletter of the National Down Syndrome Congress. Part I - Vol. 32, 2009, No. 2; Part II - Vol. 33, 2010, No. 1. Arguments against inclusive education are often rooted in firmly held attitudes and information that is prejudicial and inaccurate. [...] In conclusion, if working to include students with DS seems an uphill battle against old prejudices and myths and you are tempted to give up the struggle, remember the wisdom of an old Japanese proverb: Fall seven times, stand up eight. http://www.riverbendds.org/donate.html http://www.riverbendds.org/donate.html Sun, 31 Jul 2011 16:10:00 CDT Your donation will greatly help the Riverbend Down Syndrome Association provide support and information to parents of children with Down syndrome in Southwestern Illinois and enrich the lives of our children so they may reach their fullest potential to lead an independent life within the community. http://www.riverbendds.org/dec10.html#nienhaus http://www.riverbendds.org/dec10.html#nienhaus puttinfordownsyndrome@yahoo.com (Tim Nienhaus) Sat, 08 Jan 2011 14:00:00 CDT Special thanks goes out to Dan Polites, the golf pro and clinic instructor, and the staff of Clinton Hill Golf Course for making the event run smoothly and for going the extra mile to make it a special event for everyone. The event was a huge success. We had 119 golfers at the event and 7 individuals in the golf clinic. http://www.riverbendds.org/dec10.html#skramstad http://www.riverbendds.org/dec10.html#skramstad sskramstad@gmail.com (Sherry Skramstad) Sat, 08 Jan 2011 14:00:00 CDT Upon arriving at the National Down Syndrome Congress (NDSC) convention in Orlando, FL, I first visited the exhibitors' tables to see what was available and what types of books were offered for sale, as compared to mine. I met Dr. Brian Skotko, whose research I quoted in my book, as well as Mary Perry, who wrote a book similar to mine, about her older brother who had Down syndrome and how she and her family grew up on a farm in Alaska, also in the mid 1940s. http://www.riverbendds.org/dec10.html#varnet http://www.riverbendds.org/dec10.html#varnet tvarnet@ssvlegal.com (Theresa M. Varnet) Sat, 08 Jan 2011 14:00:00 CDT As a parent of a 42-year-old daughter challenged with intellectual disabilities, I used to lie awake at night worrying about who is going to look after Jennifer when my husband and I die. Parents often worry about unknowns such as where their adult child with life-long disabilities will live; who will advocate for their child; and what kind of vocational, recreation, residential and support services will their child need and receive. Parents will gain great peace of mind if they take the time to plan for their child's future while they still have the health, time and energy to do so. http://www.riverbendds.org/golf.html http://www.riverbendds.org/golf.html vbishop@gtec.com (Victor J. Bishop) Sun, 07 Nov 2010 23:55:00 CDT Around age 10, if not hopefully way before, parents with a child with Down syndrome make the transition from therapy to sports and recreation; from aquatic therapy to swimming; from hippotherapy to horseback riding. It was readily apparent from Emmanuel's first golf range practice that he had an innate ability to swing a golf club. It is in his genes. http://www.riverbendds.org/aug10.html#becker http://www.riverbendds.org/aug10.html#becker Tue, 02 Nov 2010 21:45:00 CDT There were five of us around the table: my husband, myself, my mother, and two medical students who had been assigned to dinner at our house. One of them said, "My parents always wanted more for me-a better education than they had, and a better job, and a higher salary. A better life. So isn't it hard to have a child with a disability? Don't you want so much more for her?" These young men were in the midst of a pediatric rotation, and they had one day to learn about children with disabilities. They had arrived at our house in the late afternoon. Penny, our three-year-old daughter, who has Down syndrome, greeted them. "Hi," she said, her neck craning to see their faces. Soon enough they were sitting cross-legged on the floor, with Penny pouring tea and offering "tookies." http://www.riverbendds.org/aug10.html#hasamear http://www.riverbendds.org/aug10.html#hasamear Tue, 02 Nov 2010 21:45:00 CDT "Joe Boss Kane," his nametag reads. Staff and other volunteers describe him as a volunteer with a good heart and a sense of humor. "He is the official second boss around here," said Susan Jolley, executive director at Crisis Food Center Inc. The pair started coming together to the center shortly after Joe's younger brother, Jack, finished his service hours at the center for confirmation about three years ago. http://www.riverbendds.org/aug10.html#skramstad http://www.riverbendds.org/aug10.html#skramstad sskramstad@gmail.com (Sherry Skramstad) Tue, 02 Nov 2010 21:45:00 CDT When Wendy left her elementary school special class, at age seventeen, she was given a Certificate of Attendance in lieu of a diploma. Passing judgment on the value of her twelve years of education, Wendy said, "I learned how to salute the flag, make Kool-Aid and play the phonograph. It was just babysitting service!" Those words haunted me into my adulthood and, I'm sure, played some part in my later decision to become a special education teacher. http://www.riverbendds.org/daugherty.html http://www.riverbendds.org/daugherty.html montreatman@aol.com (Paul Daugherty) Fri, 17 Sep 2010 22:05:00 CDT Remarkable Families Symposium, Cintas Center, Xavier University. April 3, 2009. http://www.riverbendds.org/may10.html#hicks http://www.riverbendds.org/may10.html#hicks slp@learninglanguagetogether.com (Jill Hicks) Tue, 13 Jul 2010 21:15:00 CDT Our children with Down syndrome have a particular profile of learning strengths and characteristics. Being aware of this learning profile and adjusting our teaching style accordingly will give our children the greatest chance of a successful, happy learning experience. If we use the techniques of errorless learning and explicit error correction in conjunction with allowing for delayed response time, we can optimize the learning experience. http://www.riverbendds.org/may10.html#berube http://www.riverbendds.org/may10.html#berube mfb12@psu.edu (Michael Berube) Tue, 13 Jul 2010 21:15:00 CDT The 8th Annual Coleman Institute Conference on Cognitive Disability and Technology. Boulder, CO. October 16, 2008. http://www.riverbendds.org/monari.html http://www.riverbendds.org/monari.html martinez@math.unipd.it (Elisabetta Monari Martinez) Sun, 11 Apr 2010 21:00:00 CDT There is a common opinion that mathematics is difficult for persons with Down syndrome, because of a weakness in numeracy and in abstract thinking. Since 1996, some single case studies have suggested that new opportunities in mathematics are possible for these students: some of them learned algebra and also learned to use equations in problem solving. Here an educational study with 15 teenagers with Down syndrome is presented: fractions, percentages, first degree equations and problem solving with equations are taught and learning is monitored. http://www.riverbendds.org/march10.html#beckham http://www.riverbendds.org/march10.html#beckham bevbeckham@aol.com (Beverly Beckham) Sun, 21 Mar 2010 20:15:00 CDT Five hours in a car. It's a long time for a 5-year-old to be confined. But Lucy never complained. Not a tear. Not a tantrum. Not even a pout. My granddaughter was happy, listening to Rodgers and Hammerstein's "Cinderella," (sung by Julie Andrews; the child has good taste) and singing along. She ate chicken fingers in a nice restaurant overlooking the water, then she was back in her car seat, singing again. http://www.riverbendds.org/march10.html#radmacher http://www.riverbendds.org/march10.html#radmacher barbradmacher@hotmail.com (Barb Radmacher) Sun, 21 Mar 2010 20:15:00 CDT Book Excerpts from The Message Glorious http://www.riverbendds.org/march10.html#dean http://www.riverbendds.org/march10.html#dean rick.dean@cjonline.com (Rick Dean) Sun, 21 Mar 2010 20:15:00 CDT Like so many loved ones of Alzheimer's patients, Jim Stevens' family members cherish those increasingly rare moments when he cuts through the fog of the awful disease, however briefly, and takes delight in the company of once-familiar strangers. Sometimes, something as simple as a can of soda will jog forgotten memories. http://www.riverbendds.org/march10.html#shaddock http://www.riverbendds.org/march10.html#shaddock Fri, 19 Mar 2010 23:35:00 CDT The Dakar Framework (World Education Forum, 2002) committed nations to education for all. The Forum spoke of an 'education geared to tapping each individual's talents and potential, and developing learner's personalities, so that they can improve their lives and transform their societies'. Clearly there is a huge gap between aspiration and need on one hand and legislation, policy and funding on the other. This brief paper comments on current trends in the provision of lifelong education for people with an intellectual disability, with particular emphasis on the needs of young people transitioning from school to work. http://www.riverbendds.org/longvidadose.html http://www.riverbendds.org/longvidadose.html Sat, 23 Jan 2010 20:30:00 CDT Longvida is the most bioavailable form of curcumin, an powerful antioxidant with experimental evidence decreasing amyloid plaques. http://www.riverbendds.org/longvidaab.html http://www.riverbendds.org/longvidaab.html Sat, 23 Jan 2010 20:30:00 CDT Longvida journal abstracts. http://www.riverbendds.org/dec09.html#gautier http://www.riverbendds.org/dec09.html#gautier marthe.gautier@free.fr (Marthe Gautier) Wed, 20 Jan 2010 22:45:00 CDT Fifty years ago, I was co-author of the first paper asserting the presence of a supernumerary chromosome in Down's syndrome (called mongolism in France at that time). This first autosomal chromosomal abnormality was called Trisomy 21. It seemed to me historically interesting to bring my own testimony as an actor in this discovery. http://www.riverbendds.org/dec09.html#brignoli http://www.riverbendds.org/dec09.html#brignoli Mon, 18 Jan 2010 15:50:00 CDT Dear Dragen, Remember when you asked me, "Write me a letter about death"? I didn't forget. So here is your letter about death. In the Bible it says, "The Lord, our God, holds the keys of death." This is true and real. This is what God promises us. And Jesus promises us. And Jesus always tells the truth. Because he is truth, he cannot lie. When it is time to die, Jesus will come with a key to the door of death. He will open the door and then together with the angels and saints and Mary, the Blessed Mother, you will float up over the rooftops and trees and everything, and you will just float up to heaven with Jesus. You can just relax, because Jesus will do it for you. http://www.riverbendds.org/dec09.html#lane http://www.riverbendds.org/dec09.html#lane yumaschin@aol.com (George Michael Lane) Mon, 18 Jan 2010 15:45:00 CDT In endorsing the book, Cardinal Justin F. Rigali, Archbishop of Philadelphia says, "A Different Kind of Perfect presents the compelling memoir of a family's journey through suffering and sacrifice as they seek to remain faithful to the Church's teaching on the inviolable dignity of all human life. http://www.riverbendds.org/dec09.html#cole http://www.riverbendds.org/dec09.html#cole purplemonkey003@yahoo.com (Debbie Cole) Mon, 18 Jan 2010 15:10:00 CDT As an occupational therapist and a parent of a child with Down syndrome, I would like to share my thoughts about negative portrayals of sheltered workshops and day programs. There are currently many adults with Down syndrome who are happily and productively employed at area sheltered workshops. These employees are working at a level commensurate with their intellectual abilities. They and their caregivers feel that they are being challenged appropriately. http://www.riverbendds.org/billings.html http://www.riverbendds.org/billings.html billingskc@gmail.com (Doug Billings) Sat, 07 Nov 2009 14:00:00 CDT Children are wonderful and awesome portals. When we gaze upon them we can be transported to alternate states of consciousness. We can see glimpses of the divine spark - the essence of God. I have two sons. Grant is fifteen and Michael is six. Grant is a typical high school sophomore. (Notice how I didn't call him a "normal" high school sophomore - I'll explain later). Michael has Down syndrome and is as equally wonderful, loved and welcomed as his brother. Both have shown me glimpses of the divine. Each is unique and innocent in his own way and have many times over shown me pathways to God. http://www.riverbendds.org/sept09.html#donald http://www.riverbendds.org/sept09.html#donald edonald@bnd.com (Elizabeth Donald) Sun, 18 Oct 2009 01:05:00 CDT She brought home two medals. And she did it, in part, for her father. It's a tough time for Karrie. Her father, Richard Brown, is currently in hospice. Her mother, Sue Brown, said they weren't sure Richard would make it through the weekend while Karrie competed. "But he wanted her to go; we're doing this for Dad," Sue Brown said. Karrie has Down syndrome and mild autism. http://www.riverbendds.org/sept09.html#beckham http://www.riverbendds.org/sept09.html#beckham bevbeckham@aol.com (Beverly Beckham) Sun, 18 Oct 2009 01:05:00 CDT Blessed is a word I find myself saying a lot lately. How blessed I am. How blessed my family is. How blessed we are to have Lucy. Six years ago, I didn't feel blessed. Lucy, my first grandchild, my daughter's child, was 12 hours old when we learned she had Down syndrome. We wept. Three days later, we were told she had holes in her heart and would need surgery. We took her home and fed her and held her and rocked her and sang to her. And we prayed. http://www.riverbendds.org/sept09.html#frankel http://www.riverbendds.org/sept09.html#frankel TFrankel@post-dispatch.com (Todd C. Frankel) Sun, 18 Oct 2009 01:05:00 CDT Pujols, playing first base about 40 feet away, reached Tepas first. He knelt beside him. He urged him to lie down. Pirates first base coach Perry Hill arrived next. He grabbed Tepas' feet. Hill had never seen a fan suffer a fall like that. Stadium staff ran over. Trainers from both teams and paramedics crowded around Tepas. Pujols still knelt by his head. http://www.riverbendds.org/pickard.html http://www.riverbendds.org/pickard.html bethpickardflute@live.co.uk (Bethan Mair Pickard) Tue, 29 Sep 2009 20:10:00 CDT The musical reactions of individuals with Down's syndrome have provided the inspiration and foundation for numerous research studies during the twentieth century, although definitive conclusions on the topic have yet to be reached. Much of the existing research is outdated, referring to a society in a time gone by, when unique and beautiful individuals were sadly segregated from their families and communities and herded together in institutions around the country. This study aims to draw information from past research but also to begin original work in a modern day setting, acknowledging the current situations of people with Down's syndrome. http://www.riverbendds.org/sierk.html#I http://www.riverbendds.org/sierk.html#I Jon@SierkPediatricDentistry.com (Jonathan Sierk) Sun, 13 Sep 2009 20:15:00 CDT Children with Down syndrome are at an increased risk for developing problems with their teeth and gums. Early preventive dental care and rigorous home hygiene will help reduce many of these problems and eliminate some of them entirely. This article will relate the problems children can develop, describe how Down syndrome can complicate the oral condition, and finally instruct children and families on how to care for the teeth at home. http://www.riverbendds.org/sierk.html#II http://www.riverbendds.org/sierk.html#II Jon@SierkPediatricDentistry.com (Jonathan Sierk) Sun, 13 Sep 2009 20:15:00 CDT Early preventive dental care is very important to the health of children with Down syndrome. A child's first dental visit can cause anxiety for parents, the child and dentist alike. The purpose of this article is to explain why early dental care is important for children with Down syndrome, to describe the typical first dental visit for young children, and finally to give suggestions about what can be done to make a child's initial visit to the dentist a positive experience.