Surely, when Thomas Jefferson wrote we have the right to “life, liberty and pursuit of happiness” in the Declaration of Independence he wasn’t thinking of people like my son who has Down syndrome. Still, this document and our nation’s constitution has been used as proof that my son deserves a life of choice and self-determination with needed supports.
Read MoreThe Ninth Circuit Court of Appeals ruled an Arizona school district can move an elementary student with Down syndrome to a public school outside his neighborhood. The student would receive an additional 20 minutes of Specially Designed Instruction (SDI) in an “academic SCILLS classroom” at this new school.
Read MoreSomeone recently told me that the head soccer coach at my alma mater -- Xavier University in Cincinnati -- has a little girl with Down syndrome too! I had no idea.
The Xavier soccer coach's name is Andy Fleming. He and his wife Amy have four children, and the second -- a little girl named Devin -- has Down syndrome. Since Devin was born, Andy and Amy have hosted one soccer game per year called "Devin's Game." Devin gets to go out on the field at this annual game, kick the ball around and show people the beauty (and cuteness) of Down syndrome.
A study of 99% of public schools by the United States Office of Civil Rights found that students with disabilities are restrained and secluded at a much higher rate than their typical peers. The office found that although students served under IDEA make up only 12% of the U.S. public school population, they make up 67% of students who were restrained or secluded.
That’s 70,000 students with disabilities who were restrained or secluded in the 2013-14 school year, for which the last data was recorded. Let that sink in for a moment. And assuredly there’s a lot more incidents that are not reported.
Read Mores parents of kids who are differently abled, we all strive for one common goal; inclusion and acceptance of our children. You would think it would be easy for kids to make friends with other kids or for people to accept others without questions or hesitations. However, that’s not always the case. But reaching out and educating others is something we can all do in order to help make a change. Kate Manduca, an Ambassador and contributing writer for Save Down Syndrome, did just that. She recently sent a letter to her newspaper, about inclusion and acceptance regarding individuals who have Down syndrome.
Read MoreIn August 2017 after a CBS news crew traveled to Iceland a report was released titled “Inside The Country Where Down Syndrome Is Disappearing”. Since the introduction of more advanced prenatal screening tests in the early 2000’s the vast majority of women in Iceland, almost 100%, who received a positive prenatal test for Trisomy 21, also known as Down syndrome, elected to terminate their pregnancy. On average, only 2 babies are born per year with Down syndrome in Iceland. Geneticist and founder of deCODE Genetics, Kari Stefansson, has studied nearly the entire Icelandic population’s DNA and has his own perspective on the advancements made in medical technology.
Read More“Decades ago, people with Down syndrome were institutionalized at birth. Doctors believed that people with Down syndrome "could not learn, could not add value to the world and could not be employed."
Obviously, this is extremely untrue. Thanks to full inclusion into mainstream schools, people with Down syndrome are learning right alongside their peers -- and doing great. Thanks to the generally positive nature and bright light of people with Down syndrome, they are adding exceptional value to the world. And, thanks to employers that recognize that people with Down syndrome are not only employable but also valuable assets to a workplace, many businesses have opened their doors to employ countless people with Down syndrome.”
On January 10, 2019, Patsy and Albert Christy plead guilty to wreckless homicide for abusing and neglecting their son, Logan, for 20 years until their abuse lead to his death. Logan was kept in his room with a padlock on the door. The window to his room was shattered, the floor covered with glass and feces, since he was locked in and unable to use the restroom. Logan had been starved, and kept from water. At the time of his death, he had also contracted pneumonia, most likely from the winter air coming through his broken window. For all of this, Patsy and Albert Christy were each only sentenced to 5 years in prison with the option for parole by the following April.
Read MoreIf your child has health problems due to Down syndrome (heart conditions, thyroid issues, etc.), there are lots of financial aid options available to help you pay for anything associated with these health problems. There are a few steps you have to take to get approved for one of these options.
Read More“In Iceland, every single baby – 100 percent of all those diagnosed with Down syndrome – are aborted”. (Bell, L. 2017, para 2). The statistics are chilling, and the rest of the world is not far behind, “98% in Denmark, 90% in Great Britain and the USA” (Bell, L. 2017, para. 6-7). Advocates and families of children with the gift of Down syndrome are shouting their child’s worth in any forum possible, in hopes of saving a life that is truly worth living. Having a child with a disability can be challenging, but, also one of the most beautiful and rewarding experiences to be encountered. Children with Down syndrome teach patience, unconditional love, how to see abilities, not disability; and that a person’s worth is not measured by their intelligence or societal standing, but, by their determination, capacity to spread kindness and joy and to truly see the good in everyone. The medical community needs to be educated on how to deliver a complete diagnosis that presents the positive side of a life with Down syndrome to expectant families.
Read More“As he grew older and around 2 y/o he started to have trouble going to the toilet. He would scream in pain and it was glaringly obvious something wasn’t right. We took him to the doctors between the age of 2 and 4 at least 20 times. Always the same answer. He has Ds and constipation was a side effect. We placed our trust in the professionals. I will never forgive myself for that. After multiple trips to the hospital A&E and being made to feel like we were wasting their time. The look and lack of belief in what we were telling them was so evident. Our son was not the weight his age should have been but still it took us 2 years to get a serious appointment to have a look at the problem…”
Read MoreWorld Down Syndrome day unofficially began in 2005 but was then recognized by the WHO in 2007, the United Nations in 2011 and eventually became a worldwide day of awareness. Being held on March 21st of every year, it signifies the 3 copies of the 21st chromosome.
Read MoreThe word retarded first originated as a medical phrase, “mentally retarded,” from the mid 1890’s which was synonymous for slow or delayed. This term was originally used as a replacement for other derogatory terms at the time like moron or idiot. It wasn’t until the 1960’s that this term took on an entirely different meaning used to insult people.
Read MoreMany of the facts people know about Down syndrome are actually stereotypes, or are “facts” based on observing the impacts of discrimination and mistreatment. Here is a list of facts that you may not know and as we confirm others we will add them here.
Read MoreWhen you research Down syndrome online, you will come across several images that will catch your eye. They all have the same format: a sketch of a baby with Down syndrome surrounded by manifestations of Down syndrome. The format is not the only thing these images have in common. They all contain at least one piece of outdated, and sometimes incorrect, information, as well as a sketch depicting someone with Down syndrome that is offensive to say the least.
Read MoreAs soon as I heard the beginning of Jan’s story, I needed to know the rest. I was fascinated by the idea that she had been on this journey for so long—and especially that she chose to take her son with Down syndrome home in a time when the vast majority of kids born with Down syndrome were taken away shortly after birth and put into institutions.
When I met Jan, I think I asked her about a million questions. I wanted to know all about her journey with her son—how it was to raise him, what he’s like now and what advice she had for me as I started on my own journey raising a child with Down syndrome.
Read MoreHamilton County School District in Tennessee wanted to place Luka for half his day in a self-contained classroom in a school outside of his neighborhood. “The segregated class follows no state curriculum or standards. There’s no homework or grades. No accountability,” Luka’s mother Deborah Duncan explains. Knowing Luka would not receive a Free and Appropriate Education in the Least Restrictive Environment if he stayed, Deborah moved her son to a Montessori school where he continues to attend today.
Read MoreIf you ask any parent of a child with Down syndrome what their child’s biggest delay is, the answer most often is speech. Expressive language seems to be a near-universal issue for kids with Down syndrome, and their understanding of language far outstrips their ability to express their wants, needs and emotions by the time they are two.
Read MoreIt began last August when CBS News “On Assignment” reported the birth rates of people with Down syndrome diminishing to nearly zero in Iceland. The headline read: “’What kind of society do you want to live in?’: Inside the country where Down syndrome is disappearing” the short version is this quote:
Read MoreOctober: known for ghosts and ghouls, pink ribbons and puzzle pieces. More often than not, when people think about October, Halloween, Breast Cancer Awareness and Autism Awareness (in Canada) come to mind. People don’t often realize that October is also Down syndrome awareness month. Before having my daughter, Charlie, I had no idea there was even a whole month dedicated to recognizing Down syndrome. How can I expect those who don’t live within the Down syndrome community to know this when I didn’t? Simple - by Advocating.
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