Monday, June 30, 2014

The End of Cute; The Beginning of Awesome!

"It's the heart afraid of breaking, that never learns to dance,  
It's the dream afraid of waking, that never takes the chance, 
It's the one who won't be taken, who cannot seem to give,
and the soul afraid of dying, that never learns to live.
 When the night has been too lonely, and the road has been too long,
and you think that love is only for the lucky and the strong, 
just remember, 
in the winter, 
far beneath the bitter snows, 
lies the seed that with the sun's love, 
in the spring, 
becomes the rose."
--The Rose, sung by Bette Midler 

Way back in 1999, when Patrick was just a few months old, I read this essay by a father who had an 18 year old son with Down Syndrome named Ned.
It's titled "The End of Cute" and I have to say that the title alone has haunted me.
Here's the link to read it in its entirety:

At the time, I had a six year old, a four year old and a brand new baby...I was drowning in cute.
I was soaked in imaginative worlds, fairy tales, magic and just plain adorableness.
The thought of having that era come to an end was stomach-twisting.
Contemplating my adorable three-some as teen-agers was located somewhere on the continuum 
of cringe-worthy and full on freak out.

I couldn't imagine the controversy, the angst, the embarrassment and the fear...

funny, since I was already living it.big.time.

Teen-agers are just bigger kids.

More capable, more thought-provoking, more powerful in almost every way.

They are damned amazing.

And yes, crazy-making too.

But I am here to say that although cute does end...
it gets awesome.
WAY more awesome.

I wish I had known that.

Teen-agers have a bias against them...our culture pretty much complains about them, 
blames them and points to them as our downfall.
That's hogwash.

The teenagers and young adults I know are more culturally aware, more sensitive to every single kind of prejudice around, more focused on truth, more globally aware, more able to solve their problems and search for answers than most adults I know.

I have extreme joy knowing that they are coming behind us.
They want to make the world a better place.

They don't just travel to Europe, they volunteer in orphanages and elephant sanctuaries 
or reach out to people in poverty.
They find a way.
They work together.
They believe it can be solved.

Patrick, my son with Down Syndrome who is one day away from being 15, didn't just go to a camp.  He spent time writing a letter to a family that has a brand new baby with Down Syndrome, letting them know all about his life and what he is passionate about.

Yep, he gave back.

And he can cook, and spend hours listening to music or writing scripts and dreaming of what will be.

He's like pretty much any teen-ager I know and you're right, it's not cute...
in fact he'd be offended if I told him he was cute.

  He's awesome!

The process of watching your child become an adult is humbling, fascinating, and a wonder.
Having a front row seat is a gift.

You get to guide, struggle, recommend and nudge.
The real control starts to fade away.
And that's where it gets interesting.

No, it's not always easy or smooth...but neither is parenting a toddler.
 I have had times where I've been yelling so loud that I thought someone might knock on my door and ask what the heck was going on.

I've sobbed at the changes, been sleepless with worry and had moments of sheer panic...
but didn't I have that with my two year old too?

The stakes are higher.
It isn't cute.

But I'm here to say that I've lived with three teen-agers and have one more waiting backstage and 
it's nothing to dread.

It's freaking awesome.

Happy 15th Birthday, Patrick! Happy 19th Mary Kate and Happy 21st Half Birthday, Jack.
You're not cute (well maybe a little, I am your mom after all)
...but you are awesome!

Monday, June 23, 2014

The Leap

When Patrick was born I was convinced that my world had just grown smaller.
Shrunken to such a small spot that I was certain I would never make another friend.

I cried about that loss.

Sorry for myself and my baby that wouldn't have any friends.

Only one word can claim that moment: irony.

Hey 1999 Beth, I'd like to fill you in on a little secret: you got it all backwards.

The truth is that the connections that have happened because of Patrick are literally in the hundreds.
The friendships we've made are constant and so utterly unlikely that only in the weirdest, most cosmically perfect way does any of it make sense.

It takes a leap of faith...and certainty in the net.


Years ago I heard about an amazing organization called Camp PALS.

Jenni Newbury Ross started the camp at age 15 with a friend.
Her idea: stop having situations where typical people come to "serve" the poor and disadvantaged people with Down Syndrome.
Blow apart the myth that people with Down Syndrome need your pity.
Come as a person willing to make a new friend.
Find fun things to do together, as a group, as teams and in partners so that you get to really know the person and hopefully, in all the fun, the disability falls away and you have the joy of just knowing someone new.

That was eleven years ago.

Today, Camp PALS has six camps offered throughout the summer all across the United States.
Campers come from all over and counselors do too.
Counselors and campers are paired up one to one and share a dorm room on a university campus.
Together they spend a week, having a blast.
Karaoke  is usually a nightly event.  Singing and dancing happen spontaneously.
Fun is a given.

So, in January I signed Patrick up for Camp PALS Chicago and asked my friend who lives in
New Jersey if she would want to have her daughter go too.

Last week, we met in Chicago and traveled to adorable Elmhurst College, and received this welcome.

Their theme: "This is your place."

We had no idea how it would was a leap of faith,
a best guess, a wish and a whole lot of crossed fingers. 

Turns out it was like so many things on this amazing journey of loving someone with Down Syndrome.
It was way better than we ever could have imagined.

What are the five things that everyone at Camp PALS values?
They are welcoming, accepting, passionate, genuine and fun.

Pretty great trademark qualities.
Everybody I met had them in spades.

I wanted to hang out there, but I wasn't invited.
And knowing my mom-place, I said good-bye as cheerfully as possible and made my way back to the city of Chicago for a seven day wait.

It goes without saying that Patrick had a blast.

Chandler and Patrick, friends forever.
But more than having fun, Patrick found out what it felt like to be part of a group that is welcoming, accepting, passionate, genuine and fun...wait, he's those things too.
Maybe, Jenni took a look at her brother, Jason, (who has Down Syndrome) when she was looking for important qualities in the people she wanted to represent Camp PALS.
As a sibling, she knew the secret: if the outside world could really know Jason as a friend,
the world would be a better place.

Here's a Camp PALS classic:  one of the days of camp was Camp Day at a  AAA baseball game.  Tons of other camp groups were there besides Camp PALS.  Suddenly, there was a downpour.  Everyone had to take cover.  The other camps were counting off, trying to line up and be orderly.  The Camp PALS group just started dancing in a circle and everyone in the group a chance to shine...encouraging them by naming them in the song.  Some kids from other camps came up to the dancing circle and asked what camp this was and when could they sign up. :)

Together we're better.


I want to thank Camp PALS for the extraordinary opportunity of an inclusive camp
filled with amazing people.
Thank you for the long hours of hard work behind the scenes to make everything run so smoothly.
Thank you for the incredible photos, the inspiring videos, the texts during the week to let us know it was all going great.

Thank you for your gracious hospitality.

Thank you for making it really "their place" and for giving a whole bunch of people the chance to come together in friendship and fun....a chance for independence and inspiration...a chance to dream of what the future could be like.

Most importantly, thank you for following your gut and working to make our world more inclusive -- more welcoming, accepting, passionate, genuine and fun...qualities I'm gonna focus on for a while thanks to you.

Thank you for being our net.
You're amazing.