237 Books About Down Syndrome You Should Definitely Add to Your Library

A common question among parents in the Down syndrome community is, “What are some books including kids with Down syndrome?” Regardless of what online support group you’re in, there’s always a post naming off several books that promote inclusion and the disability community but those lists never quite capture the vast collection that actually exists. Nelly Pujalt, mother to two year old Ariel, took several days and put together an entire document containing the name of every book she could find. It’s “a collection of books relating to Down syndrome for children, parents and professionals for a variety of subjects such as behavior, sexuality, dating, education, memoirs, resources and children’s books.” We’ve posted the entire list here for your reference. - Lindsay Robertson

Advocacy and Awareness, Inclusion, EducationNelly PujaltJuly 6, 2020Awareness, educationComment

When Doctor's Said No, The Bythewood's Said Yes

Abortion is a common go-to for those in the medical field. Within the Down syndrome community, many parents hear it suggested one time too many. "Your baby has a 90% chance of having Down syndrome. We recommend abortion.” “There are several Down syndrome markers present. We recommend having an abortion.” “Down syndrome means an unhealthy and difficult life. We recommend abortion.” This is a huge concern for those in the disability community and an issue many are trying to correct by educating medical professionals and the general public.

Instead of taking the doctor’s advice when the Bythwood’s were told there was nothing they could do for their baby, they went a different route. They decided to lean on hope and turn to their religion.

Discrimination, Genocide, Advocacy and AwarenessLindsay RobertsonJune 29, 2020discrimination, abortion, AwarenessComment

An Entire Community In Mourning

As a member of the Down syndrome community, I’m heartbroken and outraged at the same time. As a mother, I’m scared of the world my children are being raised in. As an individual who cares, I’m pissed off that there isn’t more awareness being made focusing on these three kids. Why are these cases not national news? Why don’t they get the same attention as any other murdered child?

For those reasons, I’m going to share the information I’ve found on two of these cases below (you can find information on Kylee Willis here – Adam Hughes’ preliminary hearing is scheduled for June 19th, 2020. He has been charged with “assault on a child causing death.”) and the link that includes the contact information for those working on each case as well as examples of the letters that you can send if you’d like to reach out and help make a difference.

Discrimination, Advocacy and AwarenessLindsay RobertsonJune 1, 2020Down syndrome, awareness, advocate, discriminationComment

"More Alike Than Different:" What Does it Actually Mean?

There are a lot of different mantras or phrases that come along with the Down syndrome community: "the lucky few," "downright perfect," etc. One of these phrases is "more alike than different."

When Alice was born and someone told me that she will be "more alike than different" and said that she would walk, talk, go to school, etc., it did give me a lot of relief. I was happy that she wouldn't be an outcast.

Advocacy and AwarenessAnn PoirierMay 20, 2020Down syndrome, advocate, awarenessComment

The Top 5 Down Syndrome Myths Debunked

Down syndrome definitely has a certain stigma. There are lots of misconceptions surrounding it. Countless myths. That's why so many people are so scared of it. In that spirit, I want to go through the top five myths about Down syndrome and correct them. You likely won't find these answers on Google or in textbooks or at doctors' offices. But I spend 99% of my life with an adorable little girl with Down syndrome, and this is the reality.

Advocacy and AwarenessAnn PoirierApril 13, 2020Down Syndrome, facts, educationComment

The History of Down Syndrome

Did you know that Down syndrome is named after a British doctor named Dr. Down? Or that the earliest known case of Down syndrome traces back to the year 500? Or that today is the absolute best time to have a child with Down syndrome? Keep reading to learn a comprehensive account of the history of Down syndrome -- from the year 500 to the present day.

Advocacy and Awareness, GeneralAnn PoirierMarch 16, 2020Down Syndrome, History, AwarenessComment

21 Ways To Prepare and Celebrate World Down Syndrome Day 2020

There are tons of ways to celebrate WDSD. The list below is just 21 of those ways to give you a head start to preparing and planning for 2020’s World Down Syndrome Day Celebration!

10 Blogs We Think You Should Also Follow

When it comes to special needs and Down syndrome, there are literally hundreds of blogs you can follow; From funny, heartfelt and inspirational to educational and knowledge-based. We know how hard it is to find blogs that really pull you in, make you feel a part of the family and leave you waiting anxiously for the next post. We also know that sometimes it’s impossible to find a blog that gives up-to-date information on current happenings or opinions on books and helpful materials. So we decided to make it a little easier for you.

Advocacy and AwarenessLindsay RobertsonFebruary 17, 2020Blogs, Down Syndrome, family, Awareness Comment

15 Reasons Why You Need To Watch The Peanut Butter Falcon Right Now

If you haven’t yet seen the movie, you’re missing out. Big time. But don’t just take my word for it. Instead, I turned to the Down syndrome community and asked them to give me one good reason why the public (you if you’re one of the few who has yet to see it) needs to watch The Peanut Butter Falcon. This is what they had to say:

This movie shows what a relationship should be like between an individual with Down syndrome and a typical person. People with Down syndrome want to be treated like everyone else. This type of relationship was beautifully displayed in The Peanut Butter Falcon! - Lauren D.

Inclusion, Advocacy and AwarenessLindsay RobertsonFebruary 10, 2020Inclusion, Down Syndrome, AwarenessComment

Clearing the Way for Systems Change in 2020

11-year-old Salome is a female of color with a disability. English is a second language for her immigrant parents, and her extended family lives far away. Many students like Salome and their families are disenfranchised by the special education process, and don’t feel like they can adequately advocate for inclusion and proper supports under the law.

“I’m always mindful of our privileges and challenges,” says Salome’s mother, Catalina Angel. “In many ways we are like any family with dreams of a good future and in may ways we struggle in a place where we constantly have to demonstrate that we have worth.”

Education, Advocacy and AwarenessCourtney HansenFebruary 3, 2020Inclusion, advocacy, EducationComment

New Year, New Goals

We have been restructuring our organization, as well as our website, and so we apologize for our delayed absence. Save Down Syndrome’s blog posts will continue to be posted every Monday and we hope that you’ll continue to follow along.

We are so thrilled to share with you all of our accomplishments from 2019 made possible by our fellow advocates and to share our goals for this new year!

Advocacy and AwarenessLindsay RobertsonJanuary 20, 2020Nonprofit, Down Syndrome, Goals, Awareness Comment

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.

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.

Advocacy and Awareness, InclusionCourtney HansenAugust 12, 2019Advocacy, Awareness, Activism, Down syndromeComment

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.

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.

Advocacy and Awareness, EducationLindsay RobertsonJuly 22, 2019Abuse, discrimination, Down Syndrome, educationComment

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.”

Discrimination, Advocacy and Awareness, InclusionMallory BlackwellJuly 15, 2019Inclusion, Acceptance, Awareness, Down SyndromeComment

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.

Advocacy and Awareness, InclusionAnn PoirierJune 17, 2019down syndrome, news, advocacyComment

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.

Advocacy and Awareness, InclusionKate ManducaJune 3, 2019acceptance, advocacy, Education, down syndrome, InclusionComment

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.

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.