Posts in Advocacy and Awareness
Why People First Language Is So Important

What is “People First Language” and what does it mean? People First Language refers to the individual first instead of their diagnosis. For instance, you would say, “Charlie has Down syndrome,” NOT “The Down syndrome kid, Charlie.” People First Language eliminates stereotypes, generalizations and assumptions about individuals, instead making the conversation about that person versus making it about their diagnosis. All people with Down syndrome are not alike, just like all people who have Autism are not alike. They each have their own personalities and characteristics making them, you guessed it, an individual.

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When Being "You" is a Form of Activism

You know what’s ice cold these days? The newest trend since goths vs. jocks? Being yourself! The art of self-promotion is palpable; just look on social media. Everyone is selling a version of themselves; the more unique, the more dope. Many people with disabilities also develop and embrace an innate sense of self. My son and many kids and adults I’ve met with an extra chromosome love who they are. They truly are dope! The problem is they’re often not allowed to be themselves and still fit in. The trend doesn’t extend to them.

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Dear Doctor

When we had Alice, all of the doctors in the hospital were incredibly negative with us. They told us that she had Down syndrome in a very depressing way. They did not congratulate us. They told us they were sorry. They acted like it was the end of the world for us. I would have given anything in that moment for one sliver of hope... but the doctors didn't give it.

As I've met and talked to so many other moms of kids with Down syndrome, I realize that 99% of them had the same experience. This is wrong, and it needs to stop.

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Recognizing Trauma In Individuals With Intellectual Disabilities

From talking to a wide number of parents, care-givers, family members, healthcare professionals and the like, recognizing trauma in individuals who are intellectually delayed, or those who may be nonverbal, is a big concern; “What if something happens and we can’t tell?,” “What if they can’t express what’s going on and it continues?” The list of questions and concerns over this one topic are endless and I’ll admit, I’ve thought about it myself. As a mother of a daughter who has Down syndrome, the very last thing I want to think about is the possibility of some kind of abuse occurring and my daughter unable to tell me about it.

So what can we do? We educate ourselves on the signs and symptoms of abuse and the steps we take if it does occur.

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Everyone Has A Voice

"This is a common misconception about all kids with disabilities, that they can’t or won’t learn, especially if they are non-verbal. When the most amazing teacher came in to the FLS class last year, she saw these kids as who they really were, and within one year of this new teacher, every single kid in the class grew leaps and bounds. Julia, who also has Down syndrome and had never been able to communicate now was pointing to “yes” and “no” cards, and making decisions for herself. That gave her so much confidence that she soon became the sassiest teenager I’ve ever met, sneaking out of the room when no one was looking and licking folders when she didn’t want to do her class job. But the biggest change was in Josue.”

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Individuals with Down syndrome Making Headlines

Someone 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.

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Inclusion; It All Starts With a Hello

s 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.

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A World Without Down syndrome?

In 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.

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Patsy Christy: Possibility of Shock Parole

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.

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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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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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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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