Monday, May 27, 2013


It's been well over a month since Wyatt's surgery.  I am starting to feel like myself again only now, after two sun-filled weekends at home.  According to the experts, this is a 'normal' reaction after an extended period of stress, after a perceived threat (in this case, to a loved one).  Despite my profession, I have to keep reminding myself that a low period after a time of intense stress is to be expected.   It's a natural reaction, especially when you consider that my [often precarious] work-life balance was tipped dramatically in one direction then quickly pushed back again. After the surgery, I was going along at a pretty good pace too, or so I thought... until I found myself in an empty room, unsure what to do, straining to hear anything over the silence and my own breathing.  The sudden absence of a presence, one that had haunted us for over two years, left a void that I had to fill.  Over time I did that.  I've made it my own.  After spending time with my family, after spending time in the garden, I feel better.  I feel more like myself; our family life has cautiously settled back into its own rhythm.  Wyatt's progress has been a big part of that:  his rapid healing, his adaptation, his overcoming of things like sore muscles and wired ribs that feel weird has helped us all maintain some clarity as we assume our 'new normal'.  Our post surgical normal.  Our brave new world.

The idea of "normal" seems to have became a theme in the time since my last post.  I swear, I'm running across examples and discussions about this all over the place.  This concept of normal vs broken seems to be a real thing in the DS community (if you can even call it a community any more).  When you think about it, it's no wonder really; after thousands of years of looking at those with Down syndrome and those with intellectual disabilities as "less than" or "broken", modern society is struggling to give these ideas up.  These concepts are familiar and comforting, like an old blanket.  However, it is time to evolve and "put away childish things", as it were.  People with intellectual disabilities are here, have value and worth.  Different.  Equal.  Not separate.

I will agree that the extra chromosome gives a lot of unknowns, a lot of variables.  My first, "typical" child was a "What to Expect..." baby.  Every month there would be a new list of goals, of things he "should be" doing, things he "might be" doing and things that would be coming up soon. Spoiler:  he didn't follow the lists.  Quinn was barely starting to walk at 18 months, but had the vocabulary of a child much older.  He didn't play with toys conventionally either, preferring to figure out how they worked and then make some kind of art statement out of them.  

What we've realized with Wyatt is that development is non-linear.  It is fluid.  He does not progress along a predictable path towards a readily recognizable outcome.  It may take him months to finally realize that tapping his spread palm to his chin means "mother", but in a short period of time can polish off a few skills that took his typical siblings months to reconcile. Instead of sitting still while he recovered from open heart surgery as he could no longer crawl, he instead adapted and learned to "scoot'.  Holy cow is that kid fast.

Even amongst children with DS, there are no set rules.  Not so long ago, pediatricians everywhere adopted a series of Down syndrome growth charts, which for chart/graph minded people like pediatricians, seemed to be a good thing.  It helped everyone to get over the idea that kids with DS were "poorly" due to their (generally) smaller stature when compared to their more typical peers.  These charts are now falling by the way side as not every kid, especially the ones with DS, adheres to a regular growth pattern.  None of my kids have, that's for sure.  Growth charts are a touchy subject with me anyway as I am the Mom of two preemies.  I've found myself shifting from foot to foot with irritation at a number of appointments, as I watch my two obviously thriving children not "measuring up" to what some chart has to say about "healthy growth".

Wyatt, even with his (previously) busted heart, is not broken or deficient.  He does look slightly different than other children I guess.  Most people that see him or his pictures want to nibble him, so I can only assume that he's a pretty good looking kid (which, as his mother I suspected all along).  None of my three look exactly the same...  Quinn is currently in a bag-of-antlers stage, with stunning blue eyes that make you want to fall in and drown. He's also in that stage where some of his teeth are loose, some are sticking out at odd angles and the new ones look like they belong to a horse.  Zoe has my olive complexion.  She has straight hair--which is a sharp contrast to both her brothers and their blonde curls--and soft brown eyes that can go from molten chocolate to granite in seconds. She can also do bridged lateral push ups between the couch and the coffee table.  Genetics are a wonderful thing.  However, due to some physiological differences, Wyatt is considered to have a "visual disability".  It is "visual", as you can see it and therefore--if you talk to a large (ignorant) percentage of the population--get to pass judgement instantly on his abilities by just looking at him.  A casual glance at his twin would not reveal that she has a lisp or delays in her speech or hand tremors that often occur with prematurity.  However, Wyatt, due to the shape of his eyes and his button nose, perhaps the way he holds his mouth or curls his toes, is immediately "recognizable".

There are no delusions about the future.  Wyatt may develop some behavioral problems, that is true.  Having been in Mental Health for years, the place where people with "outbursts" of all shapes and sizes end up, I've had my fair share of experience in this area.  I also know how many of these come about and how easily many instances can be both exacerbated or prevented.  He may not face this, either.  He may speak 'clearly' by conventional standards, or not.  Perhaps he will not speak at all.  Regardless, he will be able to communicate his wants, needs and desires quite well.  You will need to possess the willingness to listen.  It doesn't take much really, other than an attention span and patience that lasts more than a beat or two.  I also won't know until they are grown up whether any of them will have schizophrenia (as I have two cousins with this), will suffer from depression, have diabetes or cancer.  There are variables with all my kids, just like your genetic code will dictate whether your kids will develop the issues that occur in your family. 

I guess, in my mind, that's what really set the "This is Down syndrome" list of illnesses and disorders away for good.  Yes, my kid does go to a lot of doctors.  So do I, when you think about it... and I consider myself to be a reasonably healthy person.  To put it another way, here is a list of things that can "go wrong" if you happen to have Trisomy 21.  Here's a list of things that can "go wrong" if you are human:

It's a big list...

Homo sapiens are a diverse bunch, full of colours, shapes, sizes and bodies that ultimately break down, no matter how much we exercise or how organic our produce is.  Or how many chromosomes we may or may not have.  We are all broken, if that is the criteria you use to determine worth.

I think the sooner that we as a species, realize that all of us have equal value, the sooner we will stop hearing stories like this one, where a hotel in Spain refused to allow children with Down syndrome as they would be "disruptive".  We'll stop perpetuating myths that our kids with intellectual disabilities have an unholy attraction to water or wandering;  kids without DS can drown and bolt without warning just as easily.  I know this, I was that kid.  I would routinely wander off, especially in public.  My mother can tell you many stories about how I would hide in clothing racks or just get lost, period.  My mini-me daughter is shaping up to be the same too, which is going to mean a lot more grey hair in the future (assuming it doesn't just give up and fall out).  Everybody wanders and gets confused by their surroundings from time to time.  If you don't believe me, watch a security camera in a hospital for a length of time.  Trust me, I've seen some things...

Normal, as they say, is simply a setting on the washing machine.  When it comes to people, there really is no such thing.  We're all bags of quirks and "illness" and here for a very limited time.  That includes our members with developmental delays and intellectual disabilities.  There is no "less than".  There is no broken.

There is life:  messy, glorious and mostly mercurial.

[Originally appeared on Down Wit Dat]  

Tuesday, May 7, 2013

An Open Letter to Congressman Van Hollen regarding the Robert Ethan Saylor Case

May 7, 2013

Dear Congressman Van Hollen,

The Down Syndrome Collective, a group of over 2,000 advocates for the full inclusion and human rights of people with Down syndrome, urges you to secure an independent investigation into Robert Ethan Saylor's homicide. Nearly 4 months ago, Robert Ethan Saylor died at the hands of off-duty Frederick County Sheriff's deputies Lt. Scott Jewell, Sgt. Rich Rochford and Deputy First Class James Harris. The local law enforcement community in Frederick has not brought justice to the Saylor family. 

The refusal of the local State’s Attorney, Charlie Smith, to prosecute this homicide—instead using the veil of grand jury proceedings—gives rise to the unfortunate appearance of local law enforcement protecting its own. Smith’s statement following the grand jury hearing demonstrates his eagerness to adopt a narrative exonerating his law enforcement colleagues at the expense of a young homicide victim. By inaccurately stating that Saylor was "compromised by his Down's Syndrome [sic]," Smith has shifted the blame for Saylor's death onto his genetic condition rather than the improper restraint technique employed against him. Saylor was left face down and died of positional asphyxia, a known risk to all people. Most importantly, it remains unclear why Saylor was restrained at all over the cost of a movie ticket. 

Almost exactly two years ago, you honored the 20th anniversary of the Americans with Disabilities Act, acknowledging the need for such legislation because “Americans with disabilities were too often denied the opportunity to fully participate and integrate into our society due to intolerance and unfair stereotypes.” Allowing blame for Saylor's death to be falsely placed on his genetic condition is an example of the same intolerance and unfair stereotyping you denounced. Only an independent investigation can reaffirm Saylor's equal rights as a human being.

Underscoring the need for an independent investigation is the revelation by local media that Saylor suffered a fracture to his throat, with bruising indicating he was still alive at the time of the injury. The article goes on to report, “Experts say it's hard to know how it happened without an investigative report to show what came into contact with Saylor's throat.” Therefore, an independent investigation is the first step towards ensuring justice for the Saylor family.

We ask you to hold the Frederick County law enforcement community to a higher standard of conduct. Without your action, an unarmed man will have died in Maryland's 8th district over the price of a movie ticket without so much as a meaningful investigation. Please reaffirm the right of every person in Maryland to live. Help secure an impartial investigation into Robert Ethan Saylor’s homicide.


The Down Syndrome Collective

Wednesday, May 1, 2013

Down Syndrome Uprising's Advocacy Blog Symposium

Before work, after the dishes, in the doctor's office, when the kids are sleeping, at the hospital, hiding in the linen closet, at a traffic stop - What Does Your Ever Day Advocacy Look Like?

Do you change laws, minds, or the world?
Advocacy and activism mean different things to different people. For two weeks, Down Syndrome Uprising will be holding a blog symposium to celebrate everyday advocacy in all its forms.

Add your Down syndrome advocacy posts to the "linky" below and read some excellent posts from all over the world.

This Blog Symposium brought to you by:

Down Syndrome Uprising

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