Being Nice Isn't Nice

My heart is so heavy today.

Discouraged.

Worn down.

Feeling like I was scaling a mountain and I fell...way, way down...and I'm stuck.

I recently listened to this podcast about expectations.

It is amazing and terrifying and profound.

It tells the story of a man who lost his eyes to cancer before he turned two...both eyeballs removed.

Completely blind.

Only, not really.

Because, like all two year olds, he adjusted.

He intuitively started clicking and making noises to echo-locate in his world...just like bats.

He got so good at it that he uses a cane as a very minimal guide often just holding it up by his side.

He can ride a bike.

Yes, no lie.

This blind man, rides a bike on his own by clicking as he goes.

He maneuvers through his world, very capably. 

He has his freedom...

but because this is so rare for blind people, he goes around the world explaining how it can be done.

Proving all of us who don't know any better, wrong.

So, all of us, with our über compassionate hearts who want to reach out and hold a blind person by the elbow and guide him along, take it all down a notch right now. 

It's not necessary.

What does Daniel Kish need from us?

Opportunity.

An open mind.

Equality.

To be seen.

*****

I have a son with Down Syndrome.

His name is Patrick.

He is 15 years old -- capable and reliable and smart.

He's someone who always knows where his cell phone is -- much better than me in that regard --

and charges it up faithfully.

Patrick, as you may know, loves theater and Shakespeare and being in plays. He's been in over twenty performances of all kinds.  He memorizes scripts; writes his own scripts; plans cast lists and eagerly awaits the latest soundtrack from his latest Broadway favorite.

I know that's not the message that most of the world gets when you find out about 

Down Syndrome...but it's the truth.

Yes, he needs to be supported in his learning.

But in his living?

He is fine. Thank you very much.

He just needs to be seen.

He needs to be given opportunities and support.

But isn't that what we all need?

Tonight was the play that Patrick has been preparing for since early November.

He didn't get a part so he was allowed to do tech.

He was excited to be in charge of a spotlight.

The only problem was...he wasn't in charge of a spotlight.

He was in charge of following along in the script and cueing the student who was using the spotlight.

Ummm...that's not a job.

We all know that the student doing the spotlight knew the cues and needed no reminding.

I am cringing thinking of Patrick taking this job so very seriously, offering the cues, while the student who was doing the spotlight just played along.

That job which was no job sent a devastating message of incompetence and unreliability to every single student performing in the play...and every audience member...and every faculty member.

That message isn't one of inclusion.

It's one of exclusion.

A message of being set aside.

A message of:

you're only good enough to breathe the same air...not actually work on the same play.

Ironically, the play is called Metamophoses.

So much change and growth could have happened.

Should have happened.

But people who had very good eyesight turned out to be unable to see. Blind to the opportunity.

People with very big hearts and genuine concern for students tried to be nice.

But nice isn't nice.

Reinforcing stereotypes is never nice.

Lowering your expectations is not compassionate.

The result of these good intentions: people in the margins stay right there.

*****

I don't know how you help someone to see.

How you change a perception.

All I can do is show up with my kid and hope for the best at every opportunity.

He knows what to do.

He just needs a chance...

a chance to be seen.

God bless Patrick.

Who took his job that wasn't a job and did his level best.

That's all you can ask of your child.

But I can ask the world to do better.

I can ask the world to blink.

Rub your eyes.

Pause for one minute and contemplate who you are not seeing.

Who do you overlook -- even with good intentions?

Who sits on the margins of your world?

Can you expand your view of the horizon a little bit more?

Who can you reach out to and lift up?

World, open your eyes.

You are missing out.

******

*UPDATE*

Sometimes, very rarely, things tie up with a bow.

They circle around and make sense.

This is one of those times.

After an early morning email to the director with many of these same thoughts enclosed, 

the director, kindly, thoughtfully, responded with his eyes wide open.

He had a second chance and he used it.

Tonight, the last night of the play, Patrick worked the spotlight.

Someone else read the script.

He stood on a cafeteria table...

"it gave me balance" he delightfully noted,

and used the pink or blue lens and shone that spotlight right where it needed to go.

He did it.

Awareness + second chances = opportunity

I'm grateful for a director who was willing to think about it.

Grateful for kindess.

Grateful for grace in the ordinary.

All my heart can say is thank you.

Hanging Out With Eagles

Today was another one of those hold-your-breath-its-really-happening days.

I've been letting Patrick hang out on his own at home.

Just like with typical kids, there's no manual for kids with Down Syndrome.

No rule book.  No cheat sheet.

I really wish there was, trust me, because most of the time my parenting tactic is: 

guess --> see what happens and hold your breath --> adjust.

I try not to be too crazy cautious with Patrick.

That alone is a leap of faith...and a generous reliance on the rest of humanity 

out there in the big, bad world, 

and it's oh so hard.

Not hard for him by the way...just hard for me.

Anyway, he's been on his own at home, probably watching too much TV but learning to have independence.

Today I had to run around and do errands and thought that might be a good chance for Patrick to hang out on his own.

Every other time I've left him, I've found him watching TV or on the computer when I get home.

Today I found him cooking.

He made his lunch.

It was a gourmet sandwich of tuna and turkey. 

He found some tortilla chips and some cream cheese and thought that might be a good combo as well.

When I got back, he had that smile on his face that feels so great to see.

The I-did-it-and-I'm-awesome smile.

As a parent, there is nothing better.

When they're toddlers or preschoolers, you see that look all the time.

As a school age child, occasionally you see it and boy, does it feel amazing.

As your kid gets older and older, it's like a rare sighting of Sasquatch,  you're not even sure if you've seen it...many, many times, their eyes are down and they are smiling to themselves...sometimes there's a perfect moment and your eyes catch each other and you telepathically high five -- with a goofy grin across your face.

Maybe it's because every single step forward is hard won for Patrick, 

or maybe it's because I just don't have any reference points on my trail...

no cute pile of three rocks showing me I've made it to the next spot,

for some reason, the most basic steps forward to independence are marvels and wonders.

Every time, it makes me value my own independence.

It's pretty amazing I can live on my own, navigate the world, pursue my dreams and help my kids and John to work toward theirs.

I don't need much support...but maybe that's because I've been allowed to hang out with eagles my whole life...

there was no question I would fly.

But when you're born with a disability, people want you to hang out with the chickens...

they want you to earn your way to the eagle's nest.

You need to prove your worthiness.

*****

Sometimes, you don't even get to hang out with chickens...you are thrown away, discarded and worst of all disregarded.

Here's a real life example of what just happened to a baby that had the audacity to be born with Down Syndrome while his twin sister did not.

*****

So today, Patrick made his lunch, watched the clock, got his stuff together and 

headed off on his bike to camp.

I hounded him to make sure and text me when he got there.

He promised he would,

and he did.

Later he texted me this costume pic...technology is amazing.

...another trail marker...

three pretty rocks.

Presume competence.

Offer supports.

And then,

...hang out with the eagles, my boy...

Fly, Patrick, Fly.