Wednesday, October 9, 2013

Truth or Dare

"The great enemy of the truth is very often not the lie, deliberate, contrived or dishonest, but the myth, persistent, persuasive and unrealistic."  
-- John F. Kennedy

Tell me the truth...
stop and really consider it.
How do you feel about Down Syndrome?

Does it gross you out?
Frighten you?
Disgust you?
Make you uncomfortable?

Time for a little truth telling.
I'm gonna keep it real and hope you last until the end.

Do you dare?

Down Syndrome is not frightening.
It's not the problem.
It most certainly does not warrant the death penalty or loss of life in utero.
The problem is the pervasive and concrete-like myths that persist.
Time for a little jack-hammering.

Myth #1:  "They are so happy."

Ummm....not so much.  Patrick has the full deli counter assortment of emotions: anger, loneliness, joy, confusion, sadness, happiness, calm serenity, extreme excitement, embarrassment, love.
Yes, what ticks him off is not what ticks you off...but isn't that true of your other friends and family?
He does not sit around in a perpetual dumb happiness every day -- in fact, that whole idea is just plain silly.

Myth #2: "They are stubborn."

People with Down Syndrome are under a microscope.  
Like it or not, they are held to higher standards behavior-wise than the typical population.
Imagine a line full of kids.
Imagine all of them pushing, poking, and acting unruly.
Who gets nailed almost every time??
Yep, the kid with DS.
He (or she) is easy to spot...I get it...but it's a bummer.
Being "stubborn" could also be called being persistent, having perseverance, demonstrating grit (the hip word in parenting if you haven't gotten the memo)...but almost always, in reference to children with Down Syndrome it is labeled "being stubborn".
I don't buy it.

Myth #3: "Children with Down Syndrome are a burden."
Honestly, this is the one that really prevents children with DS from living a full life.
Children (Down Syndrome or not) are NOT a burden.
Every single child on our big blue marble is a remarkable, stunning, one-of-a-kind gift to all of us.
They are gems...rare and beautiful.
How is that burdensome??

Is there more work involved with a child with Down Syndrome??
Does that make it not worthwhile??

Don't you have to dig deep (and hard) for diamonds??
Aren't our kids more precious than diamonds??

If I could crush this myth into diamond dust I would...because this is the vortex of all prejudice.

If people consider you a burden, then you don't get equal access.
Heck, you don't really deserve to live.
If you are trouble, people avoid hanging out with you.
If you are difficult, well then, it's easy to leave you out, exclude you and close doors of opportunity.

Today, this very day, I spoke to two different moms about their children with Down Syndrome and their education.  Both of them are fighting for the chance to have their child fully included in the typical classroom.  One is in second grade, the other in fifth.  One lives in Florida, the other in California.

Honest, gut-level truth right now: their child is not the only struggling student in their class.
Their child could very well be a better reader and yes, a better student, than another child in that class.
Their child is the one singled out.
The one that needs to prove their worthiness to even get access to the regular room.
Because of the pervasive prejudice that continues to this very day.

Here's my truth and I've been a mom to someone with Down Syndrome for 14 years...
so, I'm not Polly-anna, crazy-in-love, rose-colored glasses girl...
just a mom who lives with her gem everyday.

This is my truth.
I don't notice Down Syndrome in my child.
I notice Patrick.
I can see him, his whole beautiful self, clearly.
That is the blessing of loving someone.

I don't believe any myths now about anybody.
Because the myths that people tell me about Down Syndrome are so far off the mark that it's offensive.

My heart got bigger when Patrick was born.
My citizenship with the world was not only renewed it caught fire.

I see myself in every mother...
the one who forgets her child in a car...
the one who doesn't have enough food in the fridge...
the one who can't figure out which end is up and is so clouded in judgement she believes not living is an option.

My truth is clear.
But I wonder about the others...
who will share their truth??

Who will dare to consciously, mindfully crush to dust these pervasive, destructive myths.

Only with truth can freedom ring.

Just a brother with two sisters: truth.


  1. Thank you for speaking your truth...if more people just looked at each child, deep into their eyes, and believed in them, the world would be a much happier place.

  2. Jennifer, You are so so right!! If each child just had one person who really loved them, advocated for them and nurtured them what a world we would have. It seems so wrong that some kids have two people who do that and some kids have none. :( Thanks for taking the time to comment! ~Beth