Monday, May 2, 2016

Accidental Ambassador

When I was pregnant with Lily and researching Down syndrome I often saw the same sentiment expressed by parents.

"Going out in public is like going out with a rock star."

And it is kinda true.

Everywhere we go people know Lily by name.

At the school, at the gas station, at the grocery store.

They know her by a name and are always happy to see her.  I will even have cashiers on break stop us as we shop or come by my aisle as I am waiting in line to talk to Lily.  When she is not with me they ask where she is.  I am forbidden to stop at the gas station to buy a soda without her.

She's a rock star.

But with that comes this pressure.

Right now she is precious and adorable and full of smiles.  They are always happy to see her.  Will they be as happy to see her when she is a defiant three year old with (hopefully) word and (hopefully not) tantrums.  When she is a big girl?  When she is a teenager?  When she is an adult?  Will they be happy to see her?  

I feel like every interaction someone has with Lily is a chance to shape how they feel about Down syndrome.  

And I want their experiences to be positive.

So there is pressure.  Suddenly we are DOWN SYNDROME.  And the way Lily acts will become the idea that person has of all people with Down syndrome.

She must be very clean.  Her clothes must be cute.  Her hair must be done.  She must be smiling.

Because if she is perfect they just see a cute kid.

But if she is dirty.  If she is disheveled.  If she is acting like the naughty two year old she is they no longer see a kid.

They see a diagnosis.

They don't think she had to be taken out of a concert to roam the lobby because she is two and there are five other two year olds in the lobby and this is typical two year old behavior.  She couldn't sit through the entire concert because she has Down syndrome.  She isn't dirty because she is two.  She is dirty because she is disabled and no one loves her enough to keep her clean.  Any negative attribute is no longer a typical part of human development.  It is caused by her diagnosis, and her diagnosis alone.

She loses her identity as a human being.  As a person with dignity worthy of compassion.

She becomes a diagnosis.

And it makes me so mad and sad and tired.

Being Lily's mom isn't hard.  Being Lily's mom with the expectations and attitudes of society is hard. 


  1. I am so glad you wrote about this! It will help me to make sure I do not share that thinking. That is so much pressure on a family!

  2. I learn so much from every family, and very person I encounter who is a person before they are a diagnosis. This kind of article is exactly what so many people need to read...need to learn.