In this blog post I want to share some basic facts about Down Syndrome, but what I do not want to do is bog you down with endless statistics, share every medical prognosis under the sun that could happen, and all the other things that are usually shared at the time of a diagnosis. You can simply turn to google for that. My hope for writing this is to bring humanity to this genetic condition that has brought so much bright light to our world.
Lesson one, Down Syndrome, also known as Trisomy 21, is not a disease, people do not "suffer" from it and calling it a disorder only casts a negative light. It is a condition or you can simply call it a syndrome.
Down Syndrome happens during early cell division after conception resulting in a third copy of the 21st chromosome.
There is no known cause according to scientists, it is nothing the mother did during pregnancy. 3% of individuals with DS have what is known as "Translocation Down Syndrome" which is inherited from parents while the remaining 97% is completely random.
October is an exciting month in our community when lots and lots of families rally together to celebrate our children and family members exactly as they are. We celebrate their resiliency, their infectious joy, and their inherent worthiness to be respected and valued in society.
Advocating for our children will look different for each family. We are called to stand up for those with Down Syndrome because they have to fight for their own basic rights; equality in medical treatment; being called demeaning words; a history of being taken from their families and institutionalized with coercion; and access to fair and equal education (among others). The historically accepted form of treatment has improved greatly over the last 20 years, but we still have a long way to go.
Facts about the recent history of people with Down Syndrome living in the US:
** People with Down Syndrome were referred to both in social and medical settings as "Mongoloids" & "Mongoloid Idiots" up until 1965 when WHO requested to abandon the term because it was causing embarrassment to the people of Mongolia and greater Asia. Interestingly, this change was not because of its derogatory nature, or out of respect for those with Down Syndrome, but rather for the people of Mongolia who didn't want to be associated with people who have trisomy 21. At that time it was renamed after the British physician John Langdon Down who did so much of the original research on the genetic condition. Unfortunately, even with the change of name the use of Mongoloid continued being used well into the 80s. This is even noted in renowned pediatric cardiologist Dr. Hisashi Naikado's book "Healing Hearts". His book is a compilation of eight mother's stories who all had children with congenital heart defects. One of those mothers was Karen Ellis who had her son Phillip when she was 21 years old in 1980 in Arlington Texas. Phillip's diagnosis of Down Syndrome was not known until birth. Karen and her husband Jim were given this knews when the hospital pediatrician said "your son is a mongoloid. As a way of introduction. Do you know what that is? He needs to go to the Children's hospital in Fort Worth. He's what we call Mongoloid and there might be something wrong with his heart"
Once Phillip arrived at the children's hospital the receiving cardiologist told Jim Ellis, " Your best bet is to just leave your baby here and forget you ever had him. He'll be nothing but grief and pain to you, and his heart defect will kill him."
The Ellis family then transferred his care to Dallas Children's where Dr Naikidoh would become his surgeon and greatest medical advocate in a time where that was not usual.
Philip had heart surgery and he did not die like the first cardiologist predicted. He lived a full life making a huge impact on the medical community and advancing research that has benefited our family and many others today. I encourage you to get a copy of "Healing Hearts" to read the full story yourself. Dr Nikaidoh was present for rounds every day as a mentor to the staff when Annie was recovering from her open heart surgery and to know that such an incredible man and physician was caring for her brings me the greatest comfort.
** In 1960 the average life expectancy for a person with Down Syndrome was 10 years old, in 1980 it went up to 28, today it is 60 years old (CDC & Nationwidechildrens.org) How could such large jumps in longevity happen?
Access to equal medical treatment
The miracle of open heart surgery advancements
The end of children being taken away from their parents at the time of birth and placed in institutions
No, babies and children being institutionalized did not happen 100 + years ago like one might think.
"Historically in the United States, the majority of people with Down syndrome and other intellectual and developmental disabilities were kept in inhumane institutions where they were deprived of education, healthcare and even plumbing.In the United States, until the 1980s and in some cases as late as the 1990s, the way in which people with Down syndrome and other intellectual disabilities were treated represents a shameful chapter of inhumanity and discrimination in our country.The Global Down Syndrome Foundation is dedicated to improving the lives of people with Down syndrome and to ensuring the atrocities endured by people with Down syndrome in the United States (and that continue in other countries today) are never forgotten and therefore never repeated." (Globaldownsyndrome.org)
It's very bizarre as Annie's mom to envision the conditions of these abusive institutions and then to picture the beautiful view of the hundreds that gathered this past weekend for the Step Up for Down Syndrome 5k & walk with their team shirts, balloons and love. It is such an alarming contrast. Or to imagine the complete lack of expectations that individuals with Down Syndrome would never talk or walk and to then think of the physical, occupational, and speech therapy we have access to and the difference it has made to help Annie reach her fullest potential.
I want to take this opportunity to thank every mother, father, and family member of a person with Down Syndrome who endured the hardest, darkest days of the past with love and determination. Thank you for speaking up when it was so far from the norm and certainly not socially accepted.
** 67% of babies diagnosed with Down Syndrome will be aborted in the US today. This in large is a decision made out of fear. In many cases, it is the way in which the physician presents the diagnosis or even persuades the expecting parents. Access to accurate, non biased, up to date resources for parents is absolutely needed and just.
**In 2013, only 9 years ago, the Federal government officially changed the terminology from "mental retardation" to "intellectual disability".
Lets talk about the word retarded. It was used as a general term for hundreds of years for those with intellectual disabilities. The word itself means "delayed, slowed, to keep back, hindered". A heavily negative connotation grew with the term and into our culture today.
Urban dictionary says it is "a word used to desribe someone who is profoundly stupid. A type of stupidity that is an insult to intelligence itself."
Think of the context in which the word is used:
"My mom is making me go to this retarded event, Im so mad"
"Do you really not know how to do that? are you retarded?"
Every single time, no matter the example, the word is tied to something that is disliked, undesirable, negative, annoying etc. Now, would you want your child called a word that embodies all of those terrible associations? Please cut the R word out for good and do not let it be part of your children's vocabulary.
One of the most incredible ways our family has been able to advocate and shift the narrative around Down Syndrome is by simply sharing day to day life with Annie through social media. It is a real, genuine look into what life actually looks like raising a child with DS and not what the doom and gloom of google says. I want to close by encouraging you to admire individuals with Down Syndrome. Many have been through some medical challenges, especially early on. All have put hundreds of hours into therapies to reach those developmental milestones like eating, crawling, walking and talking. People with Down Syndrome are STRONG, undeniably kind and usually very funny! If you do not know someone with Down Syndrome you are missing out! Seek friendships, your life will be richer for it.
Thank you for taking the time to read this and for considering all information shared. This October we celebrate Down Syndrome awareness month and cheers to a more inclusive future!