What it is to be a "Downs"

I just finished reading "The Shape of the Eye" by George Estreich...I don't really know how to review the book, I'm not good at "reviews"...And I almost always love and hate a book for different reasons...I loved Bloom because I could relate to the birth story of Nella, I hated that it was kind of silly...I loved A Good and Perfect Gift because it shared so much emotion, I wasn't crazy about the amount of religion that was talked about in it...So this book was the same, I loved some of it and other parts not so much.
It is hard to "review" someone else's personal experience.... At first I found this book rather dull...I almost didn't finish it...This book is not an "easy" read...It is a book that evokes a lot of thought...I found myself rereading and then highlighting certain passages...And while it was full of details of daily life which I found tedious and not all that interesting...Nearer the end he wrote many things that left such a profound impression on me, that I thought it worth the read overall.

I want to start with the passage that hit me the most...The one that made me go back and reread other parts. He is talking here about how John Langdon Down lumped our children together in one group, or "family" separate from everyone else...How children with Ds looked more like each other and not like their parents.

"Whatever the name applied to the condition-Mongolian idiocy, Down syndrome, trisomy 21 - The people bearing it's traces remain a family apart. They inherit Down as their second surname. It accompanies the family name, on medical charts, insurance forms, IFSPs. 

It names a timeless genealogy, a parentless family, in which there are no Fathers or Mothers, only children who - in Down's view-resemble each other more than they do their own brothers and sisters.

In the current debates over naming, in the rejection of something as small as an apostrophe, is the desire to reclaim a child from diagnosis." (pg 198)

It was the last sentence that had me in tears...The first passage in this book that truly struck a cord with me.

"The desire to reclaim a child from diagnosis"

When Russell was put in my arms for the very first time he was my own...My son...A part of our family...He was Russell Bradley Chillihitzia.

Hours later as the Doctor stood by my bed examining my boy, slowly, methodically...I felt something slipping away...When she turned and asked me "Jennifer, does he look like your other children?" I felt him slipping even  further...And finally as she sat down on my bed, and quietly told me she suspected Down syndrome, I felt him being torn away from me...Torn away and replaced by a diagnoses.

Just as Estreich wrote above, at birth my son was given another surname...A name that follows him every where through life. For every appointment Russell has, every Hospital visit, every Therapy session, every form, every file...It will begin with his name and end with "Downs". 

When people see him they see a cute baby who has Down syndrome. When we register him for school, he will be Russell Chillihitzia with the word "Downs" written somewhere on the form.

The diagnosis claims him.

As I read through this book I ran into certain passages that almost explained why I felt that way...In this book there is a lot of history on Down syndrome and how it came to be recognized...We all know that it was a man named John Langdon Down who first "discovered" in a sense, Down syndrome. He worked in a "Asylum for Idiots" ( gotta love the wording back then)  in Surrey.

He noticed that one group of patients had similar features and characteristics with one another...That because of their slanting eyes and overall appearance they appeared to be of the "Mongolian" race. Thus sprung the name "Mongolian idiots"

The way Estreich describes why it is important to know of John Langdon Down and the history of  Down syndrome is amazing...It's a perfect description.

"John Langdon Down is usually described as the condition's discoverer, as if the chromosome were an exotic continent, and he were the first explorer to reach it. But the children existed before they were discovered; What changed, after Down, was the way they were know. 

Like other explorers, Down both named and described the territory he found, and though we have rejected the name he chose, the terms of his description are still with us.

Our patterns begin with him." (pg 183)

He goes on to say that the discovery of the 47th chromosome is rather new medically or scientifically, but the  way Down syndrome is described or talked about is very old. And this is so true.
How many of us when our children were born were terrified of the imagine of Down syndrome we had in our minds...The outdated, misconceptions that we thought were true?

In the book Estreich describes going to the library and reading text books written on Down syndrome...He reads the descriptions which are grossly outdated and "deeply flawed" as he put it...How years ago the IQ of a individual with Ds was written down to be between 20-50...This is now known to be untrue...The physical description of a person with Down syndrome...And the mean life expectancy being about 17years and only 8% living past 40. We know that fact to also be untrue...And yet there they were, all these untruths and misconceptions written down in a book published in 2006!

My first experience with the untruths of Down syndrome...The first words I heard that made me feel Russell slip away from me, away from our family and into a world of his own...The first thought that made me feel he was so very different from us...
"Does he look like your other children?"
And I will never forget the day when months later I took this picture and cried as I looked at it thinking...They were wrong...They were so very wrong...He does look like us.
It was my moment of "reclaiming him from the diagnoses."

In one part of the book Estreich writes about how his daughters both inherit certain things....But because his daughter with Down syndrome is born with "a recognizable genetic disorder" as a result "She also inherits a history of , misunderstanding-and our anxieties about what our chromosomes have to do with who we are." (pg 214)


The way he words things is what makes this book so incredible to me...His words resonated deeply with me in certain areas.

The beginning of how people perceive Down syndrome comes directly from how John Langdon Down described people with Down syndrome...It all starts with him.

When he wrote his paper "Observations on the Ethnic Classifications of Idiots" he was stumped as to how Caucasian parents could give birth to children who appeared to be of Mongolian decent. He describes how these children looked nothing like their families, but more like each other than anything else. When writing his paper he does not talk of different people with Ds in the group, he picks one boy...One boy to represent the whole...Because in his own words...

"They present such a close resemblance to one another in mental power, that I shall describe an idiot member of this racial division, selected from the large number that have fallen under my observation"  (pg 194)

And how Estreich phrases this next sentence is powerful...

"With this stroke, Down personifies the syndrome, creating an everybody of idiocy, blurring child and diagnosis into a single, representative type." (pg 194)

And there you have it...The beginnings of why our children are referred to not as individuals, but as "Downs" or "They's"...Or "Children like these"...Why we hear things like "This is typical of Downs kids"...Or "Downs kids are always so happy" or "I know someone who has a Downs"


In that moment, in that one written paper, John Langdon Down told the world how our children should be seen...He told the world that they were all so similar that one could stand for another...That they were not individuals with different strengths and weaknesses, that they were essentially just one group of people...And all this time later...Into a new century, over decades, this is how our children are still seen today.
This is how the Medical community refers to our kids...They are simply "Downs kids"...Everything we hear about our children starts with "Downs kids need help with this, or that" "Downs kids are at higher risk for this, or that"
No longer individuals...But referred to as "They" or "Downs"

And as I sit and ponder all these things and let them sink in I am angry at John Langdon Down...I am angry because I feel he stole my sons identity before he was even born. His words mapped out how my son would be seen today...How he would be spoken of, and thought of.

I am sad that he never had the chance to just be Russell. He was born a "Downs"

And that is why I am so passionate about how we speak...How I want people to refer to my son as having Down syndrome, not that he is a "Downs". I am in a way trying to reclaim him from the diagnosis.
This is the reason why we as parents of children with Down syndrome DO need to care if people speak correctly...What would have changed between this wording below to what it is now, if no one said it wasn't right...If no one started the change...If no one corrected the words.
Again, Estreich's  words are more powerful than my own...

"What could be starker than the difference between Mongolism and trisomy 21, between idiocy and disability, between a Mongoloid idiot and a person with Down syndrome?" (pg 197)


Estreich talks about the future of those with Down syndrome...How Dow syndrome is viewed in different lights...One being as a "Element of a diverse humanity" and the other as a "Defect to be eliminated"....How the very survival of our children will be from how they are seen in this world...The light that is shed upon them.

" If our Technologies are to benefit people with Down syndrome, then their lives need to become more real to us. Science can illuminate one part of that reality, and technology can affect it.
But only story can convey it." (pg 208)


So true.
The Doctors know what they know about Down syndrome...They can tell you all the medical things our children may face...They can describe how our children's bodies work...They can tell us the life expectancy...But they cannot convey a story to us. They cannot tell us how much worth our child has...They cannot tell us how amazing and fulfilling our children's lives can be....

That is our job. It is our story to share.

We do this by educating people about Down syndrome...We do it through our blogs, through books written and experiences shared...We do it through Buddy walks and celebrating WDSD.
We do it through loving our kids and showing the world how incredible they are.

It is up to us to convey the story.

This book left me with a feeling of pride for who Russell is...For all that he faces...And with a desire to help him be seen as a person first. I will leave off with another phrase by George Estreich that I loved.

"It is not only the chromosome, but our response to it, that shapes the contours of a life." (pg 238)