Just Shine

I am sitting in the MIX...the George Mason University study space...after just dropping Patrick off to his George Mason LIFE program interview. 

On that summer day in July 1999 when Patrick was born,
George Mason LIFE was also in its infancy...almost no other post secondary programs existed in the United States for students like Patrick.

Nobody on the west coast knew of George Mason...or of this possibility...or of what could be.

We heard the word “Sorry” a lot.

“I’m so sorry” they would say as they looked at my sleepy brand new baby.

The incongruence of that never made sense.

Pro-Tip #1: if you see a tiny baby say only one thing: CONGRATULATIONS!

Yes, even if the baby has a heart defect and needs open heart surgery right away.

Yes, even if the baby has Down Syndrome.

Yes, even if the future is unknown.

Say CONGRATULATIONS...because what it has taken for this little sprite to land in our midst is worthy of congratulations.

It’s a miracle.

And the miracle is no less miraculous if the sprite lasts one day among us or lives for 75 years.

Miracles are miracles and they should be noted.

*****

Patrick left his icy cold water (one of his favorite things on the planet) in my bag...
 I text him...asking if he would like me to drop it off.

No response.

The guy is busy with a college interview.

What am I thinking?

I take a swig, just to be close to him.

*****

This moment is so bittersweet...six weeks after Patrick was born I went to my OB/GYN follow up appointment. I took my little baby in a bucket with me...my sweet tiny baby boy who would need open heart surgery in just three more weeks.

The OB/GYN did not know how to speak of Down Syndrome or heart defects or any other “abnormalities”...the privilege of working in a first world hospital made difficult conversations rare, I guess...or maybe there is no training for this...but what she told me in those aching awkward minutes has stayed with me.

She was trying, really she was.

I know this.

And still, it was a stabbing wound, no matter how unintentional.

She said, “Well, I know we all fear our kids growing up and going away and well, that won’t be something you have to fear with your baby. He will always be with you...and I think that’s great.”

Future doctors of the world, take note: this is not something you tell a sleep deprived, anxious, mom of a newborn facing open heart surgery and two other little ones at home.

THINK THIS TO YOURSELF.

You don’t have to try so hard...

Refer back to Pro-Tip #1...say Congratulations...and win the Oscar, mean it.

Even mumbling something about how cute the baby is would work.

As soon as my OB/GYN said this I wondered if that was true...and that’s the beauty of humanity.

We don’t have to believe the stuff they tell us.

We can notice the gates as they are being put up...we can plan to knock them down...or find the entrance.

I have wondered about that prediction for 18 years...but around year 6 I knew it was wrong.

Patrick has no interest in hanging out with me.

After three years of leukemia treatment as a toddler, it was time for Patrick to start kindergarten.

He hadn’t felt good for three of his six years.

Half his life.

I could have home-schooled him...or figured out a modified kinder program for him...but he was determined to go to school with his big brother and sister.

I still consider that one of my greatest acts of kindness as a mom.

I wanted to play with my guy.

I wanted the fun...the laughter...the joy of a healthy Patrick.

I wanted it for me...just me.

He wanted it for the world.

And so I had to follow his lead and find a way to make that happen.

He never looked back.

He never cried to come home...or told me he missed me.

But, trust me, I squeezed him tight every afternoon.

Kindergarten was the preamble to what is happening now...and I feel the same way.

He is following that big brother and sister again...and he knows he’s ready.

Me, not so much...but it can’t be about me, can it.

Getting ready this morning for his George Mason interview, lying in a hotel bed across from me,
he smiled his sleepy smile...one that only a mother knows.

I got up and walked over to his bed and I gave him a good morning hug and I looked at his sleepy eyes up close.

“Patrick, I haven’t told you how proud I am of you. You did such a great job at your Clemson interview and I am so proud of you.”

“Why?” He asks...and I weigh the two opposing ideas: he really doesn’t know or he just wants to hear great things about himself...the reason doesn’t matter and I smile...

“Because your job as a person is to shine your light...you are the only one with your light...and you shined it so bright Patrick that not only could I see it but the Clemson people could too.”

He smiled.

He knew I was right.

Some people ask what the whole point of living is and I think it is just to shine.

There is so much darkness.

So much woundedness.

Too much suffering.

The only way forward is to shine...shine so bright that they need sunglasses to stare.

So, friends, let us work to find more ways for our kids to shine...more ways for ourselves to shine...Patrick is going to find his way, really, it’s pretty obvious now...we all must find our way.

Moments before the Clemson Interview...anxiety free...ready to shine.

Step 1: Just Shine.

On this cloudy day in Fairfax, Virginia, I need my sunglasses.

I Know She Can Do It...But, Why Do I Have To?

courtesy of Katie Daisy Art

One day after I came home from dropping her back off at college to begin her sophomore year,
I steeled myself for the pain of the fridge.

Like the ice bucket challenge, I knew it was going to take my breath away, make me cringe, force me to do something I really didn't want to do at all.
I was going to have to deal with the ingredients...
her ingredients.

You see, my little chickadee likes to bake.
She bakes when she's bored.
She bakes when she's nervous or stressed-out.
She bakes for no reason...just to get a nice smell in the house.

Someday, she is going to make her own family very very happy.

Now, you understand my thickening middle.
When you next see me, just smile with understanding and kindness...please?

In that fridge, I found ricotta.
(For the record, never, in my adult life have I purchased ricotta.
Mary Kate has purchased more in her teen life than most non-Italians have in their whole life.)
For Ina Garten's Ricotta Orange Pound Cake...or maybe that's Giada's recipe?
I found chocolate frosting...left over from Patrick's Heart Day cake.
I found a whole tray of Lonna's insane pumpkin bars only partially eaten.

We are human after all -- our stomachs are finite.

What's a mom to do?

I lingered over the ingredients but knew they needed to go.

She's not going to be back until Thanksgiving...and by then it will just be gross.
Better to dive in right now, peel off the band-aid and face the truth.
She's gone -- for awhile.

Four plates at our table, not five.
No more blaring country music when I start my car.
No more moments of friction for dirty dishes, underwear lounging in places it shouldn't or endless TV marathons.

Dang it.

I know.  I know.
It's what you want and hope and pray for.
This is a very good problem to have.
She's happy.
She's found her spot.

It's just that I'm not in it.

My girlie and I go round and round.
Ours is not the companionable, mellow, obedient, docile relationship that some mothers and daughters seem (from the outside) to have.
Mary Kate and I have contentious, fractious moments.
But she trusts me with her confidences.
She shares herself.
She makes room for me...and if that isn't the biggest gift ever for a mom,
well then I can't think what it could be.

We just want a tiny, little bit of room.
A text.
A funny phone call.
A silly facebook inbox.
A tweet.
A shout out.
An Instagram shot, tagged with a hilarious hashtag.
Any tiny morsel.

Cause you know why?
You've got the whole kit and caboodle from us over here.
You have our whole heart.
Our full attention.
Our breath inhales and exhales with thoughts of you.
All the time.
Even when you think we aren't looking...
we are.

So baby girl, while I know you are flying high.
Send a feather or two to your ground crew.
We already miss you and it's been two days.

Dang it.

Be careful.
Be safe.
Be noble.
Be great.
Be smart.
Be funny -- that's a for sure.
Be honest.
Be gentle -- to others AND yourself.

But don't forget to just be.

Just sit in that wonderful quiet and know yourself.

You're pretty great.

Go show the world.

Your fan club awaits.

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.

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 go...it 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.
Magical.

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 singing...giving 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.

Sixty Years Later...

God, I love this man...who uses intercourse and injustice in the same quote and rocks it like no other? MLK.

Here's a trick question:

Do you know what Supreme Court decision was remembered yesterday?

Have you ever heard of Brown vs. The Board of Education?

1954 is when it all went down.

Sixty years later we are still talking about it and yes, still celebrating the decision.

Sixty years ago segregation got the boot.

Sixty years ago.

Sixty years ago a grandson of a slave, Thurgood Marshall, stood in front of the United States Supreme Court and argued against allowing segregation in schools to continue.

The Supreme Court unanimously agreed.

--> SEPARATE BUT EQUAL HAS NO PLACE! <--

Do you hear that?? It has no place.

Sorry to yell but this is something that educators are still talking about.

And I wanna know why.

Sixty.freaking.years.

Today, of course, thanks to Thurgood, it is taboo to suggest that a child of color should be removed to a separate learning area just because of the color of his skin.

But that doesn't stop the system from having an overabundance of children of color identified as needing special education services and then removing them from the classroom that way.

Segregation is alive and well and yes, educators, very well-intentioned ones, try to use the whole separate but equal idea in a subtle way.

They say things like:

Your child will receive special services in the separate classroom.

We can meet your child's needs better in a smaller classroom.

The "educational gap" is too big and your child needs to go to a different classroom.

It's all crap.

SIXTY years ago it was decided.

We all get to learn alongside each other.

Everyone.

In the same classroom.

I sure wish schools would get the memo.

No special room.

No special class.

Nothing special...just the regular class.

That's all we want.

All our kids need.

We have thirty years of educational research that support the sixty year old decision.

We know what works.

Separate classrooms don't.

Engagement, technology, teaching with supports, visual aids, music, clear, specific feedback

these are the things that matter.

It really isn't hard.

We just need access.

Sadly, people with intellectual disabilities get denied access to their neighborhood classrooms all the time. 

Still, 60 years later.

So I'm writing this as a message in a bottle.

Thurgood went to battle.

He had the strength of the Constitution and common sense on his side.

He won -- unanimously -- 60 years ago.

If he can win,

so can we.

Fight the system.

Demand to have your child placed alongside his typical peers.

Don't back down.

Share the stories of success.

Follow the ripple of inclusion.

Watch your child grow and thrive.

If he doesn't.

Don't give up.

Tweak and adjust.

Believe.

It can happen. Successfully.

The Supreme Court is on our side.

Federal Law is on our side.

We are on the side of love, acceptance, tolerance and inclusion.

That's the side that matters.

Be their voice.

Speak truth to power.

Watch with wonder as miracles happen.

That's the grace-in-the-ordinary...it's right in front of us.

Thanks to Thurgood.

He's Not Broken, Your System Is

"You are here to allow the divine purpose of the universe to unfold.  
That's how important you are!" -- Eckart Tolle

So, my kid is graduating 8th grade.
He's moving to high school.
Leaving the only school he's known for 9 years.

He's excited about it.
He's ready for an adventure and the thrills of high school that he has watched happen with his brother and sister: proms, dances, dates, football games, hanging out with friends --
independence.

His speech teacher that he has had since he was two said it best:
"He's excited because every change he has had up until now has made his world bigger and better."
He thinks change is good.

He's upset to say good-bye to his beloved friend and aide, Sarah.
He's not too sure of how to get to his new school...or what to do once there.
He's trying to picture it and he can't.
But overall, he's pretty excited for it.

Then we went to his first hour of formal testing...with a stranger...who gave him candy...and let him quit when he said he didn't know the answers anymore.
Would she let any typical kid quit??
Is that being nice...or is that having low expectations?
Is this test just a self-fulfilling prophecy?
Sure feels like it.

My kid needs to enter a system...a formal system that specializes in disability...a system that prefers to segregate...
and list all of the things Patrick can't do.

I look at all of the things he can do.

A system that wants to prove its value and needs to keep perpetuating this myth of can't.
The myth of "experts".

I'm the expert on my kid.

I don't need a special ed credential to know what's the right placement for him.
It's the one he's had since kinder -- fully included, with support, in his class with his typical peers,
100% of the time.
That's been working for nine years.

On May 1st, I'm going to sit in on a meeting filled with strangers...who will list all of the various gaps in my son's knowledge.

The gaps identified, by the way, from tests that are created for people with 46 chromosomes, not 47.
They're "standardized" but for what kind of kid??
Someone with autism, sensory processing disorder, cerebral palsy, Down Syndrome?
Is this a one-size-fits-all test??
If so, how can it measure anything meaningful?


They'll be overly polite.
They'll make comments about how charming Patrick is.
They'll smile...and act as if they know what's best for him educationally.
When they don't have a clue.

If I could, I would dismantle this system.

All children would start in their neighborhood school, in the typical classroom.

No one would have to earn their way in.

I'd train every single teacher in the country in good teaching practices...teaching teachers how to be engaging, how to mix up their class time with active/passive learning, how to monitor and give meaningful feedback, how to use technology to teach, reteach and assess for understanding.
I'd encourage creativity and cooperation and constructivist learning.

If every teacher knew how to extend a lesson and scaffold a lesson and offer support to all learners, we wouldn't need special ed...
which by the way, isn't freaking special.at.all.

Imagine all the money we could save if we didn't test and create goals and retest every three years.
Not to mention the time.
Precious time being wasted so the system can prove over and over how valuable it is...
when the results STINK.

75% of people with intellectual disabilities are UNemployed. 
--> 75% <--

Completely intolerable.

3/4 of the people in your system do not end up working...
hello...
why do you hold on to the outdated (and educationally false) notion that separate is equal??

25% of students with intellectual disabilities are fully included in school.
and...
25% of people with intellectual disabilities are employed.
Isn't that an amazing coincidence??

Does it take a graduate degree to connect those dots?

Why do we have this system again??

I know I will have parents tell me amazing stories of amazing special ed teachers doing heroic things...
even a broken clock is right twice a day.

There are good people...terrific educators...heroes...in a terrible system.

I don't want to dismantle the people.
Just the system.

I want to crush the oppressive bureaucracy of deficit thinking.

A system that itself is disabled --
blinded to the many things the student can do, in favor of underlining and in bold all of the many things the student can't do.

 I view Patrick as a violet living in a daisy world.

He isn't a broken daisy.

He's rare and beautiful and exceptional in his violet-ness, just hanging out with the daisies.
Our garden is better for the variation in the beauty.
Our world is better with it...it is the very definition of grace-in-the-ordinary.

Can you see his violet beauty?
Or do you see a broken daisy?
He's not the one who's broken...your system is.

"Peace requires everyone to be in the circle -- wholeness, inclusion."  -- Isabel Allende

Why It Matters

When Patrick was in kindergarten we needed some sort of incentive that he was willing to work for.

  We needed a pay out.  

Since I didn't want an obese child, the pay out couldn't be candy.  

Who am I kidding, Patrick is not candy focused, he's all about the carb.  

He, for sure, would have worked for a fresh baguette every day but I just couldn't do that.  

So we brainstormed and perseverated and finally landed on the library.  

Patrick and I could go to the library every day after school if he had a happy face day.

Oh, those happy face days!  

That meant that Patrick had listened, worked hard and kept it together.  

It also meant that he came in from recess on his own -- a true trial for Patrick -- 

since he couldn't distinguish when his time was up. 

If he saw anyone on the playground, he thought it was his time to play too.

At first, going to the library was a big deal.  

We celebrated!  

We cheered.

We did the happy dance.

And then we waltzed right in and Patrick spent a delicious amount of time 

l-i-n-g-e-r-i-n-g

over the videos and DVD's,

like a guy named Patrick at a bakery filled with croissants and baguettes and other sourdough options.

He relished the moment.

He perused and paused and savored so many choices.

The library was his spot.

Like all favorite memories, the library still makes him happy but it's no longer something he works for.

His happy face days are the norm now.

The library is just a pit stop on our way to the park...or a place to go to directly if there's research for a school project involved.

And so yesterday I casually suggested that we go to the library while Caroline had basketball practice.

Since he is still known for his slow pace of perusal, I was a bit worried we might be cutting it too close.

But we gave it a try.

Like a salmon finding its place to spawn, without thought, he honed himself straight into the kids' section and started the monumental task of choosing a video.

It only took about 5 minutes and we were done.

He had nothing.

"So, what do you think?" I asked.

"I need the computer." he replied.

so causal...so big

He gets on the computer and types in his item: Macbeth.

He finds all sorts of options but zeroes in on a Macbeth video in the adult section...we repeat the call numbers to ourselves over and over as we cross through the library.

We find the Shakespeare section and attempt to locate the video.

Nothing.

My mind: tick tock, tick tock

I suggest that we can put in a request for it and he agrees.

We walk right up and talk to the librarian who happens to be a young guy -- 

note to self: when did that happen??

He says it should be on the shelf...he meanders over to the section with us, finds it for us  

(library newbs) and Patrick is smiling...fired up...for Macbeth???

We don't have time that night to watch the show.

So I wake up to my husband leaving for work and telling me, 

"Yeah, Patrick is fully dressed and watching Macbeth."

Weird.

I come out a half hour later to check on Patrick and he's engrossed...

full middle English +Shakespearean drama + early morning = confused momma.  

I shake my head and keep my morning pace.

He comes out for breakfast asking questions.

"Who killed Macbeth?"

My mind needs simple gimme questions like, "Where's the toast?"

I do what all motley, sleepy, busy parents do...I tell him to Google it.

He does.

Fascinated he tells me that Macduff kills Macbeth -- 

because Macbeth had killed Macduff's wife and son.

I start to get interested.

I can't help it...

this whole weirdness is also super cool.

It starts to break through my early-morning mind fog: my kid is curious about Shakespeare?!?

I tell him that Macduff got revenge on Macbeth.  I ask him if he knows what that means.

He pauses and lets me continue...Macbeth gets killed because he killed other people...he had it coming.

He understands...and he reveals others that Macbeth has killed, Duncan and one other whose name I can't understand.

But here's what I do understand.

Talking to my 14 year old son about the plot of Macbeth in the early morning time before school was an unanticipated miracle.

My son has Down Syndrome.

The statistic most often given is that women who find out they are carrying a baby with Down Syndrome abort that baby 90% of the time.

I like to think that number is a little high...but if it's 75% or 50% it really doesn't matter.

Women are terminating their wanted pregnancies because of fear.

Because they don't think they will be talking Shakespeare to that child, ever.

Because they can't imagine someone with Down Syndrome being clever or funny or 

independent 

with dreams of their own.

Because all they know is mis-information.

My son is no "gifted and talented" child with Down Syndrome, trust me.  

But here's what he has had...access to the curriculum.

He's been fully included alongside his typical peers and exposed to rich literature, big ideas like 

social justice and freedom.  He's been in on class discussions and wrestled with morality.  

He's learned about the arts, history, science and math...just like any other kid at his school.

Once in awhile, his curiosity gets the better of him and he gets sucked in.

It happened when he had to do a big project about New York City in 5th grade.

It happened when he pretended to attend Apple Valley (a school set 150 years ago) in 3rd grade.

It happened with the Terra Cotta Warriors and with 6th grade science camp and music.

And now it's happened again with Shakespeare.

The problem with limited curriculum for people with cognitive disabilities is that we limit the menu.

I don't know if Patrick will become a vegetarian, passionate about mangoes or obsessed with granola.

Who am I to decide??

He gets introduced to new foods all the time...that's part of living.

It's the same in school.

People like Patrick deserve to have the same menu as anybody else.

We can't know what will intrigue or light the fire of anyone's mind -- people like Patrick most of all.

If you would have asked me if Patrick would love Macbeth, I would have guessed no.

I would have guessed wrong.

People like Patrick love learning; they light up with excitement when they figure it out.

Just like anybody else.

People like Patrick deserve more opportunities and more depth and more enrichment in school.

Why??

Because we can never guess or know what will touch their hearts and speak to their soul.

Their individual passion and interest is unpredictable and incongruous.

Just like every human on the planet.

So, yes, it matters if people like Patrick get to learn alongside their typical classmates.

Yes, it matters if opportunities are limited.

If the curriculum is watered down and dull.

No mind should be wasted.

Nobody should be denied.

We should all get the chance to hate Shakespeare...or in Patrick's case, love it.

It matters.

The Wide Open Day

Don't think -- Just GO.

Today we had a wide open day...miraculous, really.

No obligations.

No soccer.

No birthday parties.

No chores that couldn't be avoided.

As Caroline would say, "No, must-dos."

So...what do you do with a wide open day?

So many times I fritter it away...cleaning a dirty bathroom, putzing about the house, wasting time on the computer or just letting time play its game of endless one minute and gone the next.

Because John had something fun he was doing with a friend, I decided I wanted to try a hike.

I decided this late in the day...after lounging and putzing.

I prodded the kids along and went to my favorite deli to get a picnic to go.

In my mind we were going to go on a hike...something that is not our normal but something I'm hoping to make a real part of our lives.

I found the name of a trail,

The Independence Trail.

How could we say no?

My life vest was that it was a completely accessible trail.  

The first wheelchair accessible wilderness trail in the United States -- and it was only 2 hours from my house.

If someone in a wheelchair could do this hike, we could too.

So, armed with some bottles of water, a yummy picnic and some willing participants I started driving.

We made it about halfway when Caroline piped up that she was hungry.

Patrick too.

So, using my GPS in my phone I found a random park in a random town.

Turns out it really was only a patch of a park.

It had a path, it had a creek and some pretty fall trees...but not for long.

It was pretty tiny.

And it looked like some homeless people thought it was their park.

Of course, I had two hungry kids, both on a mission, so they just walked right passed what can only be called the homeless encampment's brunch, with a look of determination.

I smiled awkwardly...feeling super self-conscious of my random kids in a random patch of green in a random town.  

It could have gotten weird.

And that's the thing with adventures, 

you find yourself in situations that don't have clear cut lines.  

Your known world doesn't really compare to this unknown one.  

You have to navigate the blurry lines, 

take your best guess and listen to your gut.

Sometimes it gets weird.

To me, the people seemed homeless and dirty but harmless -- I made my best guess.

We chose to sit downstream from them and have a picnic.

It was quiet and peaceful and that untended spot rewarded us with dancing leaves of every color falling into a tiny creek -- playing nature's version of hide and go seek.

We could have called it a day right then.

We could have been satisfied with a smaller outing and a taste of nature...

but it was a wide open day.

We didn't think too much about it...we just kept going...looking for Independence.

An hour later we found the trailhead -- those Internet directions were right after all!

It was clearly my lucky day.

Except well...Patrick had decided he'd had enough.

That picnic was about all he needed for time outdoors.

We could go ahead and hike but he would be staying in the car.

Time was not on our side.

I put on the table his choices...including his cell phone usage in the future...and still he stayed strong.

Finally, I had to pull out his favorite outing at Christmas. 

I told him he would not be attending that if he didn't find his way to the trail.

I let it sit there and then I turned my back and walked to the trail hand in hand with Caroline.

As the trailhead I started counting down from five and somehow, someway he began to run.

With a big smile on his face he started walking.
(A true Grace in the Ordinary moment, trust me.)

We had no idea where we were going or how long the trail went or what we were doing.

You have to make your peace with looking at the world and not knowing what's around the bend.

We just started walking...without any destination in mind.

Just because we could.

Just because it was a wide open day and the sun was shining and we were together and it felt right.

We found leaves that were beautiful.

We soaked in the quiet -- like dry sponges.

We sang songs and found walking sticks and noticed things.

Sometimes we hurried...curious to see what was next.

Hardly ever does this happen...but what they saw up ahead freaked them out...not in a bad way,

in a "No Way! This is Awesome way!"

Without trying, I got this shot of Caroline...

(Notice Patrick running in the background...the guy runs for no one.ever.  He was amazed!)

This amazing trail winds its way down to the river!

You can be in a wheelchair and find yourself able to get to the river, safely and easily.  

It's incredible!

I LOVE whoever had this vision, whoever created this place and the many people who must work hard to maintain it.

Thank you doesn't seem good enough.

Of course I had to go home and do a little homework.

John Olmstead, thank you for dreaming BIG.  Thank you for tirelessly and patiently working to get the property rights and the easements that allowed this trail to become this amazing spot. 

Thank you for finding a way to get to the river from up so high.

Thank you for your belief that ALL people deserve to enjoy the wilderness...really steep in nature...

not the sanitized way that so many people in wheelchairs are forced to do it...the messy, leaf-filled, acorn-strewn, golden hued path that you envisioned.

It really exists.

You did something really awesome.

You gave people who often have something holding them back a real gift of independence.

The Independence Trail lives up to its name.

I'm so grateful I had the chance to taste your bit of the world today.

It was delicious.

Every.bite.

"Climb the mountains and get their good tidings.  Nature's peace will flow into you as sunshine flows into trees.  The winds will blow their own freshness into you, and the storms their energy, while cares will drop away from you like the leaves of Autumn."
--John Muir

Get Out of the Way

"Every tomorrow has two handles.  

We can take hold of it with the handle of anxiety 

or the handle of faith."  

--Henry Ward Beecher

I've been noticing something.

Kids are anxious.

They have anxiety.

They stress out.

They freak out.

They get overwhelmed and they shut down.

For me, it seems like it's going on a lot more than it used to.

Today was the topper.

I've heard of kids being anxious...but I sat with a student teacher as she went through her class and she revealed that four of her students struggled with anxiety...and they were in elementary school!

Four in a class of thirty.

What's going on in our world??

These kids aren't hungry or homeless.

Their basic needs are met.

They have involved parents...maybe even a bit too involved.

Maybe that's the problem.

The hovering has got to stop.

Some parents actually come to school every day and eat lunch with their child.

They lurk around at recess.

I'm sorry but that would give me anxiety and I'm an adult.

WTH??

Our world is so upside down that the school hasn't stopped that madness.

The classroom teacher hasn't called an intervention a meeting and clarified the problem.

The parents keep eating lunch...and if they're eating lunch at school with their kids I don't want to think about what it's like to be at home together.

Suffocating is the word that comes to mind.

Let's chat about the message you send your kid every day you show up to school to eat lunch with him:

You can't do this without me.

You need me.

I'm crucial to your happiness.

I don't believe you can navigate this big, bad world on your own.

It's just a little too close to the mean mom in Rapunzel for my liking.

Why do we have this level of hovering??

Because the parents have lost their faith in our world.

Because of the horrendous living nightmare of 20 tiny first graders dying in their school in 

Newtown, Connecticut.

Because of 9/11 and creepy bad things that happen in our world every day.

I get it.

Bad stuff goes down to kids on a regular basis.

But guess what???

A whole lot of good stuff goes down too.

And my gut tells me it's WAY more than the bad.

We have lunch ladies, crossing guards, bus drivers, school secretaries, guitar playing music teachers, ball bouncing PE teachers, school janitors, principals, teachers and teachers aides and after school specialists just waiting to do their part.

And they DO their part.

Every single day.

Schools are safe.

Schools care.

Schools are a real place that your child can learn to maneuver and ask questions and be curious and test the waters and grow in independence every day.

But we have to let them.

We have to tell our kids by our actions that we know they can do it.

We have to give them a chance to fail.

And point out the rising sun and and the world still spinning when the failure happens.

It's ok.

They need to know they are ok on their own.

They need to have a little faith and see it all work out.

Over and over.

School's the place where that happens.

So...can you parents just take a deep breath and get out of the way??

You are literally making your kids sick.

You are disabling them.

Besides, you are just sucking the fun out of the whole thing.

And you don't want to be a fun-sucker, do you??

Tonight I'm grateful for the safety net of schools.  

I'm grateful for the many, many good people who make a school run smoothly.

I'm grateful for the welcoming smile, the hot lunches, the predictability of schedules and the comfort of belonging that comes with being in a school. 

Let's grab the handle of faith and let tomorrow shine.

It Happened!

"We all have our own life to pursue, 

our own kind of dream to be weaving...

And we all have the power to make wishes come true, 

as long as we keep believing."  

--Louisa May Alcott

Last Friday, after years and years of trying, five different bicycle camps, three different bicycles and a whole lot of wondering if it ever would happen...Patrick rode a bike.

He didn't just ride it for a short distance. He's been able to do that for awhile.  

He rode it for three miles...out on a green belt, to a duck pond and back.

He came home sweaty and wiped out...but he came back a bike rider.

Hot and sweaty...still needs to get home...but a bike rider none-the-less.

In his mind, during that ride, he made the leap.

He jumped over the mental hurdle.

He now believes he is a bike rider.

He feels it.  He knows it.

He freakin' did it!

When he rode up to our house,  I ran out the front door clapping and cheering and crying like the guy had just won MVP at the Superbowl and we were going to Disneyland.

I was jumping, hugging him, holding him by the shoulders and telling him so loud 

and so over-the-top how proud I was that he had done it.

He got that small, shy smile that they all get.

You know the one.

The smile is one part: 

"Hell yes. I know. I did it.  I'm awesome."

another part: "Still trying to wrap my head around it...hey, wait, I did it."

mixed in with a smidge of "It's really no big deal, don't know why you're freaking out."

He got embarrassed that I was making such a big deal about it.

Our neighbor who is Mr. Gruff, Let-Me-Ignore-Those-Crazies-Next-Door, actually walked across the street 

and shook Patrick's hand.

I swear that Patrick can thaw even the coldest of hearts.

It was another awesome cherry on an already huge sundae.

Sarah, Patrick's amazing aide and personal friend to all of us Forakers, was the one who helped seal the bike riding deal.

You see, when you're 14 and you know your mom wants you to really do something, you can't help it, you push back.  

It's just in your teen-age DNA to refuse.

So, I couldn't be a part of it.at all.

Even though I really wanted to in my interfering-mom-knows-best way.

I had to hand it off, like the proverbial baton at the Olympic trials, and let her run.

The chick knows how to motivate.

She used every tactic available.

Donuts, music, cheerleading, videoing, deal-making...but mostly, her own belief that he could and would do it.

Day after day throughout the summer they practiced.

Day one was rough.

He couldn't get his balance.

He couldn't fit the bike.

He didn't believe he could do it...and so he didn't.

But, like the faithful friend she is, she just kept at it.

Kept encouraging.

Kept nudging.

Kept pushing...farther and farther.

Before we knew it, he started making the mental shift.

He started telling her that he could go further.

He started showing off.

She could no longer run beside him...she needed a bike too.

And that was the day they just rode and rode -- all the way out to that duck pond.

Yesterday, Patrick in the early morning suggested that we ride our bikes to school.

I smiled.

How do I say no to that?

He's still wobbly on the take off.

He still needs waaaaaay more practice with riding on the street and navigating traffic and other distractions...but he can do it.

Now all he needs are just hours under the belt.

Because now he believes.

He is a bike rider.

And we all know that being a bike rider is way more than having a new way of getting from Point A to Point B.  

Patrick got a little more freedom last Friday.

He got a ticket to expanding his world.

Just like the gift of learning to read, riding a bike affords him a little more independence and a whole new way of seeing the world.

I've been steeped in a full, grateful heart all week.

What can you say to someone who helped your child in such a profound way?

What can you give them to show your appreciation??

I gave her the only thing I had to give: my tears and my full heart.

I looked her in the eyes and told her that the day her first child rides a bike, maybe, just maybe, she will understand what she has helped to give Patrick.

But for now, all I can do is surround her with my love and appreciation every single time I go for a ride with Patrick.

I live in a bike riding town.  

You can bet that I'll be riding with Patrick all over the place...

each time I will send some sunshine Sarah's way -- she'll feel it.

I know it.

So today I'm grateful for two blessings: Patrick's own determination and ability to just keep trying...

no matter how many times it didn't work.

And I'm grateful for Sarah's enthusiasm, her coaching, and her perseverance through some 

hot, tiring days that looked awfully bleak.

Together they made it happen.

Unbelievable what friendship, faith and determination can do.

They make quite a team.