Odhran Varney: How Medical Professionals Couldn't See Past A Diagnosis

“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…”

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The Spread The Word To End The Word Campaign and Why It's So Important

The 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.

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The New Educational Graphics

When 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 They all contain at least one piece of outdated, and sometimes incorrect, information, as well as a sketch depicting someone with Down syndrome that is offensive to say the least.

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An Open Letter to American Girl

Madison’s younger sister, Charlotte “Charlie,” is fascinated by Madison’s American Girl doll. She wants one for herself. Madison has asked me time and time again why American Girl has dolls in wheelchairs or with arm crutches but they don’t have the option to buy a doll with Down syndrome. “I don’t know,” I’ve told her. “Maybe they just haven’t met the right person with the right story,” I’ve said. This isn’t true but I don’t have the heart to tell her that the company doesn’t see the value in adding a doll that looks like her sister just yet.

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Save Down Syndrome: Goals for 2019

We want everyone to know that they are not alone in their efforts to save Down syndrome- we are here with you, and we are doing this together. That is why we always want to be open about our actions and ideas. In this article, we have outlined our biggest goals for 2019.

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Kaitlin PepperComment
Happy Holidays from Save Down Syndrome!

As the year ends, we think about all our organization is appreciative for and our relationship with our ambassadors, our community of advocates and our followers are just a few. Your continued support has made Save Down Syndrome successful and we would like to extend our sincere thanks. We are grateful for each and every one of you.

From Save Down Syndrome and our Ambassadors, we wish you a very Merry Christmas and a Happy New Year!

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Lindsay RobertsonComment
My interview with Jan Worthington, a trailblazer for the Down syndrome community

As 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.

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Teen with Down Syndrome Wins Inclusion Case in Federal Court

Hamilton 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.

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A Case For Teaching Sign Language To Children Who Have Down Syndrome

If 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.

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Dear Iceland, Meet My Son with Down Syndrome


It 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:

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It's Buddy Walk Season, and We're Celebrating

October: 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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Financial planning for your child with Down syndrome

When you have a child with Down syndrome, one thing that worries you everyday is their adulthood and future. The best thing we can do for our children’s future is making their finances secure. No matter how much or how little support they need in their adulthood, no matter who their caregiver is, having money in their name will make their life easier, open doors, and create opportunities.

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Intervention? How early and how much will it impede in our lives?

When should you start early intervention?  Just like that extra chromosome, it’s different for every child. Studies show early intervention does make a difference. The evaluator will come to your home to observe your child and will then make recommendations. The recommendations will include what type of therapy they need at the moment and how often, if at all.

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