3/21 - World Down Syndrome Day
Down Syndrome Day 2012 will be celebrated for the first time at the United Nations in New York due to resolution officially designating 3/21 as World Down Syndrome Day. In 2009 it was celebrated with the 50th anniversary of the discovery of the genetic cause of Down syndrome by Dr. Jerome Lejeune.
A Brand New Baby with Down Syndrome
When a newborn is diagnosed with Down syndrome, parents may be told about the challenges the baby and family may encounter months or years later, when they deserve more than anyone just to bask in the glow of their baby´s first days and weeks.
A Childhood with Down Syndrome
Babies with Down syndrome who grow up with friends with similar interests or geography often have more in common with their family and mainstream peers than they do with other chromosomally enhanced children and teens.
Accueillir les bébé trisomiques WBwDS / French
Si vous accueillez un nouveau né trisomique dans votre famille, vous avez probablement beaucoup de questions et d´appréhension, de même que votre parenté, amis et voisins. Traduit de l´anglais " Welcoming Babies with Down Syndrome" French translation
Adaptive Dance Classes and Down Syndrome
Children with developmental disabilities and physical challenges have shown that they can perform beautifully and express themselves through dance and theater wherever they have opportunities to show their talents and develop their skills.
Adoption and Childhood Disabilities
Information, support and encouragement should be available to adoptive and foster parents equally with birth parents who are raising children with disabilities. Overwhelmed adoptive parents, step-parents and foster parents who release the children in their care do not come to that decision easily.
Articles about Down Syndrome - Then and Now
With a greater online audience for articles and interviews about the potential and accomplishments of children and teens with Down syndrome, there is also a higher incidence of negative comment and ignorant prejudice expressed that can distract us from advocacy and awareness messages.
Back to School with Down Syndrome
If you are a parent or a teacher expecting a student with Down syndrome in your classroom and plan to help other students to include a classmate with Down syndrome, congratulations. Classroom supports and inclusion do benefit mainstream classrooms, teachers and their schools.
Bienvenidos Bebés con Síndrome de Down
Si usted está dando la bienvenida a un bebé con síndrome de down en su familia, lo más probable es que tenga muchas preguntas e inquietudes, así como su familia, amigos y conocidos.
Bilingual Children with Down Syndrome
Bilingual families whose child with Down syndrome or other developmental disability has also learned a second or third language have demonstrated the importance of giving every child the opportunity to grow up bilingual or multilingual
Book Review - Coming Of Age With Down Syndrome
There is as great diversity among parents raising children with Down syndrome as there is among individuals with Down syndrome themselves. Personalities and natural abilities or interests impact opportunities as much as parent choices. Adventures In The Mainstream is one look at transition years.
Breastfeeding Babies with Down Syndrome
Moms of babies with Down syndrome learn that the well-documented benefits of breastfeeding that have inspired new mothers for decades are especially important for their sons and daughters who may have more vulnerable immune systems, and greater challenges with motor development related to speech.
Building a Down Syndrome Library for Parents
Parents and extended family of babies and children who have Down syndrome will benefit from reading informative and encouraging books designed to help us understand and provide the best possible opportunities for their development, education and social connections.
Cataracts and Down Syndrome
Babies and children with Down syndrome have a higher incidence of cataracts. Some babies with Down syndrome are born with cataracts; there is also a slightly higher incidence for individuals with Down syndrome who may acquire cataracts during childhood or adolescence.
Celiac Disease and Down Syndrome
When children with Down syndrome are diagnosed with celiac disease, changes in diet that eliminate gluten often improve both health and behavior
Child Models with Down Syndrome Raise Awareness
Children and teens with Down syndrome have been models in catalogs and newspaper advertisements for the past quarter century, delighting and inspiring families and communities.
Childhood Apraxia of Speech - CAS
Children with verbal apraxia have a diverse set of speech and communication challenges that make it almost impossible for them to speak clearly without specific help with motor planning and other issues. They deserve community support, interested listeners, and alternative ways to communicate.
Clothing Modifications and Down Syndrome
Some children with Down syndrome have difficulty with fine motor skills used to deal with buttons, snaps, hooks or zippers. Families may choose to have some clothing altered to avoid difficult fasteners, find special tools to help, or shop for current fashions with elastic waist bands
Children with Down syndrome and their families benefit from Dr. James D. MacDonald's 'Communicating Partners' strategies that encourage late talking children as well as their mainstream peers to be more social, responsive and conversational.
Computer Education for Students with Down Syndrome
Computers and specific software tailored to children and teens with Down syndrome have helped them change perceptions of their potential since the early 1980s. Now, researchers are considering how they can improve designs for computer interface and access for most individuals with Down syndrome.
Costumes for Children - Safety Issues
Costumes for children with special needs at Halloween, for Thanksgiving or Christmas pageants - and for all school productions - should be safe, comfortable, and fabulous
Crawling, Walking, and Down Syndrome
Young children with Down syndrome may experience delays in learning to crawl and walk, and may have unique ways to manage motor planning and movements.
Dental Work, Orthodonthia and Down Syndrome
Children and teens with Down syndrome often have a combination of issues that affect their mouths, gums and teeth. Orthodontists and other dental professionals who work with patients who have Down syndrome report positive relationships and excellent outcomes with appropriate orthodontic care.
Depression and Down Syndrome
Symptoms of depression in teens and young adults with Down syndrome may be mistaken for intentional misbehavior, laziness, regression, age appropriate moodiness, and sometimes psychosis. Even close family and long-term staff may not recognize when significant changes have had a negative impact.
Down Syndrome - Parent to Parent Contact
Families of babies newly diagnosed with Down syndrome may not have access to information or encouragement until their babies enroll in early intervention services and may be on wait lists. Parent groups rely on volunteers to put together info packets or welcome baskets and make hospital visits.
Down Syndrome and Autism Dual Diagnosis
Families whose children with Down syndrome have autism or an autism spectrum disorder can find support and information online for this dual diagnosis
Down Syndrome and Diabetes Dual Diagnosis
Only a few more children with Down syndrome develop insulin dependent diabetes than their mainstream peers. My son developed Type 1 diabetes when he was a slender seven year old, suddenly losing weight. He was diagnosed early because I read about symptoms reading about his sister's T1D classmate.
Down Syndrome and Heart Issues
Children with Down syndrome have a higher incidence of heart problems and some babies require surgery within the first year of life. Due to the great strides in surgical techniques and medical support, children's heart issues can be resolved with a quicker recovery than seems possible to families.
Down Syndrome and Spinal Concerns
Children with Down syndrome have been evaluated for the cervical spine disorder atlantoaxial subluxation for a quarter century. The 1996 evidence based guidelines for doctors are now expanded to refer to cranial-vertibral instability and spinal instabilities including occipito-atlanto deterioration.
Down Syndrome and the Acting Gene
Actors and actresses with Down Syndrome around the world are finding acting jobs in television, movies, and community theater productions
Down Syndrome and the Task of Learning
Children with Down syndrome may have delays or gaps in development due to strategies they find effective to avoid learning, working on or practicing skills. Professor Jennifer Wishart explains insightful research on how children with Down syndrome may sabotage themselves in teaching environments.
Down Syndrome Awareness
Down syndrome information and outreach advocates educate their communities, educators and legislators about issues important to families of individuals who have Down syndrome
Down Syndrome Awareness Events
NDSS Buddy Walks, Step Up for Down Syndrome events, and TwentyWonder in LA, all raise awareness and fund opportunities for individuals with Down syndrome of all ages, throughout the USA. Families of babies and young children can meet one another, and amazing teens and adults breaking barriers.
Down Syndrome Awareness March 21 and October
National Down Syndrome Awareness Month is celebrated each October in the United States. Advocates also participate in World Down Syndrome Day activites each March twenty-first, chosen because of the three copies of chromosome twenty-one.
Down Syndrome Buddy Walks
Down Syndrome Buddy Walks throughout the country have been raising awareness about Down syndrome for more than fifteen years. Most occur in September or National Down Syndrome Awareness month in October. The New York City event includes a Times Square video featuring individuals with Down syndrome.
Down Syndrome Health Issues [offsite link]
This site features articles by pediatrician Dr. Len Leshin, guest articles by other professionals, DS research abstracts, information for students writing reports, and links to other information about Down syndrome.
Down Syndrome Research - What's New?
Down syndrome research is conducted at university and medical research centers around the USA and the world. Families, therapists, educators and medical professionals can learn about past research, current studies and how this information benefits children with Down syndrome today.
Eliminating Misinformation about Down Syndrome
Misinformation about Down syndrome has been combated by famiiles, local parent groups, national and international organizations for decades, but outdated stereotypes and even urban legends continue to raise challenges for children, teens and adults who face the condition's actual challenges.
Empathy and Inclusion - Childhood Disabilities
It can be disheartening to moms of students with Down syndrome, Cerebral Palsy, Spina Bifida, Autism, Type 1 Diabetes, and other disabililities, developmental delays, or chronic health conditions, when neighbors show more compassion about pets and animals than for their children's classmates.
Executive Functioning and Behavior Issues
Families of children with Down syndrome and behavior issues may not understand the challenges of executive functioning difficulties. Our sons and daughters need to take the time they need to respond to requests or comments, prepare for new situations, or have other special needs accommodated.
Explaining Down Syndrome to Children
Deciding how to explain Down syndrome to young children may challenge the beliefs and expectations of adults who see more differences than similarities among children with Down syndrome and their mainstream peers.
Finding A New Label for Down Syndrome
People with Down syndrome elevate the quality of life and richness of experience we enjoy in our homes, schools and communities. Families of babies and young children are especially struck by the inappropriate connotations the word 'down' has in describing babies, children or adults with DS.
Fly Fishing for Kids and Teens with Down Syndrome
DownStream can ignite a lifelong passion for the sport and art of fly fishing in children, teens and young adults with Down syndrome by providing an amazing daylong event for them and their families.
Future Sibling Support and Down Syndrome
Sibling support programs help build better family relationships as well as providing willing listeners and a forum to speak for brothers and sisters of children with Down syndrome and other disabilities. As important to our children as they may be, so are our expectations of our children as adults
Getting Started - Models with Down Syndrome
Models who have Down syndrome have found work in a variety of ways. Because modeling is a business, it is important to discover how to protect individuals and their families from exploitation. Advice and planning with the help of an agency advocate like DSiAM often leads to better outcomes.
Gifts 2 - People with Down Syndrome - Review
_Gifts 2, How People with Down Syndrome Enrich the World_ is a delightful collection of stories about ordinary individuals who happen to have been born with Trisomy 21, also known as Down's syndrome. This would be a wonderful addtion to any library, doctor's office or early intervention center.
Golf for Children with Disabilities
Teaching golf to children with Down syndrome and their siblings is often as enjoyable and rewarding experience for instructors as it is for the kids; every child deserves opportunities and encouragement to show their talent and potential, and to learn to love the game.
Growing Up with an Intellectual Disability
When my son was a baby I did not consider what he might think about growing up with Down syndrome. He did let me know all along that he has a very different perspective on his life and diagnosis than I could have predicted. We are both so fortunate he had role models and media representation of DS.
Health Issues for Teens with Down Syndrome
A great deal of information available in the media about Down syndrome is meant to educate new parents and the community about appropriate medical care or therapeutic and educational interventions. Families of pre-teens or teenagers may have difficulty finding appropriate information and resources.
Homecoming, Prom, and Down Syndrome
High school homecoming stories about students with Down syndrome being elected king or queen are still rare enough to be newsworthy but it is much more common than ever before that students with DS are involved in Homecoming activities as they grow up included and supported in neighborhood schools.
Inspirational Mothers - Down Syndrome Advocacy
We can be thankful to one another for the inspiration to be the mothers our children deserve and the advocates that society demands, keeping one another reaching forward for our children and reaching back to other moms and families.
Intuition and Program Planning for Children with Disabilities
Intuition is credited with creating life changing and life saving programs for children with disabilities. Sometimes professional´s faith in their own intuition blinds them to their own prejudices and lead them to unexpected acts of discrimination.
Letter to Myself on Diagnosis Day
A question was posed recently on the DownSyndromePregnancy website - what would you tell yourself if you could travel back in time to the day of your child's diagnosis? It might be something different every time we think about our lives since; and so many new things might be added as time goes by.
Loneliness and Friendship in High School
Students with Down syndrome or other developmental disabilities may experience less loneliness and more friendships in high school than their mainstream peers, unless a club like Circle of Friends offers all students the support and encouragement found in inclusive extracurricular activities.
Maternal Differences and Down Syndrome Advocacy
Despite having in common the care and raising a son or daughter with Down syndrome, it's likely that we will get along with about 1in 10 other moms we meet in advocacy or support groups. As parents of a son or daughter with DS, our only credentials in the advocacy community are second-hand.
Memory Loss Reversed in Mice - Down Syndrome and Alzheimers Disease Research Breakthroughs
Many parents are concerned to learn that plaques that are seen in the brains of older people with Alzheimers Disease also appear in relatively young adults with Down syndrome, although fewer show symptoms of AD
Mosaic and Translocation Down Syndrome
About 8% eight percent of families learn that their baby does not have garden variety Trisomy 21 and are diagnosed with Translocation and Mosaicism varieties. Fewer than 3% are born with the Mosaic variety, but there is ongoing research, reliable information and support available for all families.
Moya Moya Disease and Down Syndrome
Moya Moya disease is a rare condition slightly more common in children with Down syndrome and should be considered if an individual with DS of any age shows symptoms of stroke, seizures, headache or continued loss of cognitive abilities. The Stanford Moyamoya Center has treated patients since 1991.
Negotiating an Inclusive Kindergarten Placement
A quarter century after children with Down syndrome and other developmental disabilities demonstrated the benefits of mainstream kindergarten for themselves and their classmates, parents are still finding obstacles to enrolling their 5 year olds in neighborhood schools with their mainstream peers.
New Down Syndrome Prenatal Testing Information
There are now 2 pamphlets available for expectant parents and medical professionals addressing the non-invasive prenatal tests for Down syndrome. Questions have been raised about factual inaccuracies and unbalanced information in the newer pamphlet available from national Down syndrome organizations
New Parent Information on Down Syndrome
Information about Down syndrome for expectant or new parents should soon be the most reliable and up to date resources available. Individuals and advocacy or support organizations often take responsibility for making information packets available for local hospitals, doctors and counselors.
Non-Invasive Prenatal Testing for Down Syndrome
The National Down Syndrome Society has established criteria to evaluate companies that develop non-invasive prenatal diagnostic tests for Down syndrome. Advocates are encouraged to contact the company currently promoting one of the first of these to be available, Sequenom.
Organ Transplants and Developmental Disability
In 1995, Sandra Jensen was initially denied a heart/lung transplant because she was born with Down syndrome and medical professionals felt she would be unable to manage post-operative care. In 2012, a young patient with intellectual disability was denied a kidney transplant even with a family donor
Pain Tolerance and Down Syndrome
Medical professionals who have been taught that individuals with Down syndrome have a high tolerance for pain are much less likely to consider basic pain management strategies for patients in their care. Some children and teens are stoic, and others lack communication skills to express it.
People with Down Syndrome Raise Awareness
Families and advocacy organizations raise awareness about the potential of individuals with Down syndrome during events year-round, and especially during October or on World Down Syndrome Day March 21st. People with Down syndrome are more powerful advocates, working or just living ordinary lives.
Person First Language and Down Syndrome
Parents of young children with Down syndrome may feel passionately about how they refer to their sons and daughters. Some advocate Person First Language and some feel that Down syndrome should be kept as a focus of their advocacy.
Plastic Surgery and Down Syndrome
Very few families of young children with Down syndrome choose to look into the option of plastic surgery to reduce facial characteristics in hopes that their children find better opportunities and less prejudice in school and community programs. Elective surgeries often carry risks with no benefits.
Prenatal Diagnosis - Down Syndrome
Advice for women whose baby will be born with Down syndrome often comes from a perspective of misinformation and discouragement rather than celebration. If your daughter, sister, friend, coworker, neighbor or relative is expecting a baby prenatally diagnosed with Down Syndrome - how can you help?
Raising Awareness About Down Syndrome
Raising awareness about Down syndrome can be as simple as pointing out the diversity with the population of babies, children and adults with Down syndrome; we already know that the potential of any individual can be enhanced by appreciation, affirmation, and opportunities.
Shoes for Children and Teens with Down Syndrome
Some children with Down syndrome have sensory issues or are especially troubled by shoes that have not been properly fitted and will kick them off at the worst possible times. Custom orthotics that fit in shoes half a size larger often help children and teens with balance and gait anomalies.
Signing, Reading and Spelling for Communication
Sign language, learning to read, write and spell, and other forms of communication are also eloquent ways to speak to one another
Social Media, Texting and Online Relationships
For individuals with a developmental disability, texting or social media offer opportunities to connect, communicate and participate without a diagnosis getting in the way. But it can be as difficult to 'read between the lines' in texts, phone calls and status updates as understanding in person.
Something for the Pain - Parent Comments
When reading powerful testimony of a father's love found in E.R. Doc Paul Austin's excerpt from SOMETHING FOR THE PAIN, it may take a second reading to learn something from his honesty. Comments at the Bloom site could result in a much greater outcome than drawing more lines between US and THEM.
Strangers Observing My Son with Down Syndrome
People in public who stare at children with Down syndrome without smiling or greeting them can make parents uncomfortable or angry. When my son was younger, I decided to approach strangers who stopped to watch him, and discovered that there are many stories out there in the world I do not know.
Teens and Pre-Teens with Down Syndrome
Teenagers and children in transition to adolescence who are growing up with Down syndrome often face the same challenges as their mainstream peers, and may also experience additional struggles that are just as important to evaluate and understand. Reliable resources are available for families.
Teething Babies with Down Syndrome
Babies with Down syndrome experience discomfort when teething just like their mainstream peers. There are safe and often effective strategies for reducing pain and comforting infants dealing with erupting teeth and associated symptoms.
The Importance of Attitudes about Prenatal Testing
Some parents and disability advocates characterize a television segment about Sequenom's MaterniT21 PLUS test for Down syndrome as an advertisement promoting negative stereotypes and misinformation. They say it was insensitive in tone, language and attitude, and lacking real parent representation.
Thoughts from the Middle of the Night
When my son was born with Down syndrome, I could not imagine his kindergarten year in a mainstream classroom, with friends and birthday parties, learning to read and write, or sharing his thoughts during story time. I thank all the moms looking forward, who are always reaching back to help others.
Thyroid Problems and Down Syndrome
Children with Down syndrome have a higher incidence of thyroid problems that can have adverse effects on their health, development and emotional wellness.
TV Actors Who Have Down Syndrome
Television actors with Down syndrome have played many TV roles, including Jason Kingsley - The Fall Guy in 1984 and Chris Burke - Life Goes On 1989 - 1993; now, Luke Zimmerman - The Secret Life of the American Teenager; also Andrea Friedman, Brad Silverman, Louise Brown, Blair Williamson and others.
Twins and Childhood Disabilities
Twins bring many unique and wonderful experiences to their families as well as greater responsibilities for care as newborns and in early childhood. Some face greater challenges due to genetic anomalies like Down syndrome, or prematurity, traumatic birth, or other issues related to multiple births.
Welcome to Holland - Today and Yesterday
The wonderful essay written by Emily Perl Kingsley has been included in many wonderful anthologies and is often included in New Parent Packets for parents and professionals sharing a newborn or prenatal diagnosis of Down syndrome. Many believe that it is as relevant today as the day it was written.
Welcoming Babies with Down Syndrome
If you have a beautiful new baby in your family diagnosed with Down syndrome, you may have questions and concerns about to find the best possible support and encouragement available for a wonderful quality of life, richness of experience, and opportunities to reach his or her full potential.
When My Son was Born with Down Syndrome
I became sensitive to certain words and phrases when my son was born and diagnosed with Down syndrome. I am grateful that his pediatrician developed his own awareness without my intervention. A good doctor can learn from every new patient. Some average doctors may overwhelm by their own ignorance.
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