There's a Difference Between Tolerance and Acceptance

"Tolerance is another word for indifference." 

--W. Somerset Maugham

Sometimes a mother's heart gets rubbed raw.

Sometimes she witnesses some sort of interaction with her child, like a bird observing her nest from a distant tree branch, and an ache begins.

Patrick lives in a world of acceptance.

He's been fully included in his school since kindergarten and now he's in 7th grade.  The kids know him there.  They encourage him.  They support him.  He has quite a solid group of kids that he can say are friendly to him every single day and he has a couple good friends.  

For ANY 7th grader, that's darn well wonderful, let alone someone with a disability.

But in other parts of his life he has to get out there and mingle with other kids who don't know him as well.  He loves to sing and act and participate in plays or musicals. Those he performs in after school with a wide cross section of kids.  He's gearing up for a big performance and had his dress rehearsal tonight.

I brought him his dinner thinking he might need a little fuel to carry him through the long practice.  I brought along some ice cream sandwiches for the rest of the kids.

I found him sitting a distance off by himself while the rest of the cast was gearing up to take a cast picture.  

Sometimes you're just a 7th grader with angst.

Sometimes you're a kid that is easy to overlook.

Sometimes you're tired and hungry and just plum out of the oomph it takes to be you today.

In this moment, I'm sure it was a lovely combination of all three.

But it was hard to see...

and probably even harder to live.

Patrick perked up when I got there...and right there is the grace in this story.

[Can I say for the record that I LOVE this about him...he doesn't hold back when it comes to the people he loves. 

He greeted me with gusto.  I always feel a certain 

Ro-Sham-Bo competition when this happens -- like I have to shazam-out my rock to his paper -- and I always, always lose.  

The guy has greetings down to an art.]

Instantly, he joined the cast picture.  

He thanked me for my sandwich dinner and was thrilled to pass out ice cream sandwiches.

The kids were very polite.  Every single one of them said thank you.  

They were genuine in their appreciation.

And that's when it hit me.

It's not enough to just tolerate someone's presence.

There is an entirely different vibe to acceptance and you must feel cocooned in a comfy fleece blanket on a windy winter night when you are appreciated.

Being accepted is something every human craves desperately.

Watching junior high kids with their hair styles, clothing options, and music selections you get a bit of insight into how bad they want to feel part of "it".

It's a bit heartbreaking.

Watching Patrick go through it, there's a layer of sadness in addition to the angst.

It's not enough to just be tolerated, especially now.

Right now, acceptance is what he needs.

But not just him.

Patrick is my mirror to the rest of the world.

He's my headlights in the darkness.

With him along for the ride, I notice more.

I am acutely aware of when I am merely tolerating people and when I hand them the key to my city and smile or laugh with acceptance.

I can't help it.

With my new eyes, I notice the old lady alone in the waiting room and pause to make eye contact with her, forgoing my personal luxurious magazine moment for a chance to dole it out.

I can feel the sting of being left out for people who can't speak our language fluently.

I cringe when I see anyone on the sidelines of life merely being tolerated...the gay, the homeless, the sick, the obese, you name it...we have a lot of people on the sidelines.

It's good to have a seat at the table...but you need a fork, a serving of food and someone next to you making conversation to be a part of the party. 

That's our next step...serving the people at the party and making real conversation.

Let's move toward acceptance.

Let's watch ourselves and notice how often we send out the message of real appreciation, 

not just tolerance.

Tolerance is overrated.

We all need to be valued and cherished.

Accepted and Appreciated.

I'm going for the two A's...how about you?

Have a Coke and a Smile

"What's great about this country is that America started the tradition where the richest consumers buy essentially the same things as the poorest.  

You can be watching TV and see Coca Cola, 

and you know that the President drinks Coca Cola, Liz Taylor drinks Coca Cola, and just think, you can drink Coca Cola, too.  A Coke is a Coke and no amount of money can get you a better Coke than the one the bum on the corner is drinking.  

All the Cokes are the same and all the Cokes are good." 

-- Andy Warhol

I don't know about you, but where I live Coke is on the way o-u-t.

Nobody drinks it.  

Everyone shuns it.  

If you didn't know better, you'd think it had some actual cocaine in there the way people react.

Around here, children can never have a Coke.

Like chocolate decadence cake, it is hardly ever seen and rarely tasted.

It's a forbidden fruit.

I'm old school.

Yes, I still drink Coke.

(sssshhhh, keep it on the down low...because it is a serious personal flaw)

I have Coke in my fridge regularly.

I do allow children to drink it -- on occasion -- OK, every Friday night.

I'm not belittling childhood obesity.

I'm not a fan of High Fructose Corn Syrup.at.all.

I could use more exercise and could be in better shape...

but there's something about an ice cold Coke that is delish.

And lately, I've been dividing people up into two groups:

those who will have a Coke and a smile and those who don't.

When I visited my friend Beth in the hospital for the first time with her daughter Chloe, I bought her a sandwich at Subway.  I stood there in front of the drink cooler and toiled.  

Was she a Coke drinker or not?

Would she be offended if I offered her a Coke?

What would she think of me?

I chose the Coke.

Turns out I guessed right...she's a Coke drinker.

When the guy who was landscaping my backyard was sweltering under a broiling sun stood up to take a break, I offered him a Coke.  Or a water.  Both would be ice cold.

No question: he went for the Coke.

He gave me a smile.

Yes, we bonded...under the guise of Coke.

When the guy who was crawling under my house and fixing my rogue ventilation came up for air, 

I offered him a Coke.

I didn't even cringe. 

I knew he was one of us.

He guzzled that sucker so fast I felt bad...the man was parched. 

I should have asked sooner.

Turns out that Coke is a pretty great ice breaker.

It leads to conversation.

It helps a busy person to pause, take a break, and enjoy something simple.

It can definitely help strangers reach out to one another.

Just like the smiley revolution, I think passing out Cokes on a hot day might bring about serious world peace.  Or maybe it would help us see we're not so different -- that we really can stop and drink and relax together even if the only thing we have in common is the item we're drinking.

I know, I know.

Coke is bad for you.

It's bad for our kids.

We should be drinking water, or kombucha, or chai or green tea.

Or maybe milk.

I still say that it is a nice part of life.

I'm grateful for the many Cokes I've shared.

I'm grateful for the smiles.

I'm grateful for the fun times, the popcorn, the movies, the pretzels and the deliciousness that Coke brings with it.

I like the way I can break down barriers with a simple question:

"Would you like a Coke?"

More often than not, the answer is yes.

Those are my kind of people.

Come on over any time...free Cokes all around.

Like Oxygen

"Smile, breathe and go slowly." -- Thich Nhat Hanh

My sister, Mary Claire, and my mom, Linda -- December 2012

For the past few days I've been reading about other people's mothers.  They've distilled their mom's wisdom into some bits and pieces.  They were able to list particular traits or sayings that their mother's had that were carefully passed on to them.

I tried to think of personality traits of my mom's.  I tried to see if I could chunk out the wisdom. 

I decided that it was impossible.

The presence of my mother is like oxygen.

I simply know it is there.  I take it for granted.  I never consider what it must be like to have no oxygen. I try to take deep breaths and acknowledge the ever present, life-affirming place that oxygen plays in my world but that's as far as I get.

I don't want to consider gasping or begging for oxygen.

So...for today, again, I'm not going to.

Call me childish.  Call me foolish.  

I accept it.

I need my oxygen.

I will however share here a few things that oxygen has given me.

1) The giggle: if you have enough oxygen, you have enough air in those lungs to giggle.  My mom is the best giggler I know.  You actually CANNOT get her going or she will not stop.  It gets awkward and embarrassing...especially in mass.  We have been the recipients of many evil eyes, trust me.

2) The snack: if you have oxygen, then you will need a snack.  Guaranteed.  If you are out of sorts, you are probably hungry.  If you are going on a trip, however short, you MUST have snacks.  If you are on a road trip and don't bring a cooler full of treats well then you have shirked your God-given duty.

3) The ability to choose the right pen -- it's always about the right pen.  If you have enough oxygen, then you have the ability to consider your pen options.  Color coordinate your written word with your stationery, please.  It's the least you can do.  It really does make an impression.

4) The love note: with oxygen, you can definitely find the time to write a little note on a napkin.  It doesn't have to be fancy.  A little "Isle of View" (say it fast) and you're good to go.

5) The ability to enjoy my freedom: Get out there and do something with that oxygen.  Go see something.  Go visit someone. Cheer for your team.  Make the most of it and get going.

6) The chance to be nice:  if you can breathe, well then, you can be nice.  Simple as that.

7) Constancy: yep...I've never known life without oxygen.  Never struggled for it.  Never knew that you could fight for it and never know it.  

My world is full of my mom's amazing presence.  

She is always there, thinking of me, hoping for me, rooting for me. 

Today, I am grateful for my deep-filled lungs of oxygen...otherwise known as my mother's love.

Ready...breathe.

Inhale gratitude, exhale judgment.

My Ugly Shoes

I have a friend named Beth who has a daughter that has been battling childhood cancer since last August.  She is finished with treatment but still fragile.  Any illness is a worry.  Any weird symptom takes her to that dark place.  Anything but her daughter being her bouncy, joyous self brings the shadows, the worry and the heartache.

I know it well.

May 16th, 2002, Patrick was diagnosed with Acute Lymphoblastic Leukemia.

August 2nd, 2005, he finished all treatment.

He is considered cured.

Yep. Miracles happen.

Smart people, devoted researchers, tender nurses, vigilant doctors change lives and create some sort of critical mass.  A deadly diagnosis just a few decades ago is now curable.

It's a hellish process but you get there.

Here he is:

Celebrating St. Patrick's Day 2013 at a pub with his dad and big brother.

He gets to live his life. Try new things.  Contemplate girls and dances and traveling and what high school will be like.  

He has a future...because somebody lost theirs.

I can't help but hold close all of the children who came before Patrick.  Those that tried new treatments, new tests, new therapies and got to the point that they'd try anything.

Those that knew they wouldn't make it and still they tried.

Not long ago, childhood leukemia was a death sentence.

For some types, it still is.

But the people at St. Jude's kept at it. 

They wouldn't give up.

St. Jude, the patron saint of lost causes, let them keep trying.

St. Jude's Hospital in Memphis, Tennessee, still takes the lost causes of children's illness.

They still work tirelessly on the most devastating diseases.

They work miracles everyday.

St. Jude's is special, very special.

I like to tell this story so that people can stop feeling just good about St. Jude's and can start to feel in awe.

There was an incredible research scientist that was from Australia.

There was no hospital in Australia that was like St. Jude's.  Nothing even close.

He decided to take all of his training and his passion and move back to Canberra to replicate St. Jude's over there.  

He got big donors.

He got amazing researchers together.

He built a state of the art research center for Australia.

For six years, he gave it a go.

It failed.

This doctor who gave all of himself over to this mission had this to say about it:

"There is no place like St. Jude for a scientist.  There is a terrific atmosphere in the highly interactive clinical and basic science programs, and the tremendous levels of funding make it all possible for me to do my research without interruption." 

--Dr. Peter Doherty, Nobel Laureate in Medicine, St. Jude Children's Research Hospital.

Dr. Doherty doesn't say it out loud but I will.  Something very holy and sacred is happening at St. Jude's.  Something that is intangible.  Something that can't be researched or itemized but something that everyone who has been there knows...a greater power is part of the solution there.

Patrick's amazing doctor, Dr. Jolly, did a three year fellowship at St. Jude's.  He knows.

We know.

Patrick benefited directly from that research and that sacred work.

He has his life today because someone dared to fight against the lost cause of leukemia.

Today my friend, Beth, posted this poem:

SHOES
I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I don’t think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
I can tell in others eyes that they’re glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I’m not the only one who wears these shoes.
There are many pairs in this world.
Some women ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.
-Author Unknown

I know those shoes well.  They've been at the back of my closet for awhile, but I still know them.

I wish I didn't.

However, I'm grateful today for all of the others who have worn those same shoes before me.

Those that took a chance and searched for the impossible.

I'm grateful to the mothers and fathers who had nowhere else to turn and were welcomed into St. Jude's.

I'm grateful to Danny Thomas for creating a powerful place of hope and care for the worst cases and the most desperately ill children in our country.

I'm grateful for miracles, most especially the one who shares my world. 

**If you want to say thanks, send a donation to St. Jude's.  Trust me, they will use your money well.**

Joy

                                                    

Here is my joy...

 I call him prozac with fur.

Three years ago he was born...he entered my life 1023 days ago.  There has not been a single day that he didn't add a little bit of joy.  Many, many days he's added big heaping gobs of joy to my life.  As a matter of fact, my love is irrational, biased, over the top and just plain sloppy.  

I like it that way.

I'm officially one of those dog people. And guess what, my dog is one of those kinds...the one who sticks by me, follows me around the house.  Wherever I am, he is.  

Do you notice my pile of clothes in the background of this pic??

 Yeah, me neither.

That's how it goes with Buddy.

He makes it all better.

When one more piece of crap piles on an already bad day and my tears can't hide anymore...little padded paws come and check on me.  They don't tell me to hush.  They don't ask me to explain or need me to think.  A pair of chocolate eyes just looks at me...a wet nose nudges...this unbelievably wise and gentle soul just bears witness and comforts.  He's just there.  Present in the moment.  That alone is enough.

I want to bring him to every hurting place on our planet.  I want him to comfort sad kids, lonely old people, angst-ridden teenagers...even my crabby, weird neighbor.  But then, I wonder.  Maybe his comfort is made for me alone.  (Well, I can't leave out the rest of my family, but you know what I mean.)  Maybe dogs and our other bright spots in our day are just that...our individual, made-just-for-us-in-this-crazy-universe kind of joy.  

Maybe our dog is like our fingerprint...personal, identifying and only ours.

It's a mystery.  

One of my very favorites.  

I waited a long, long time to get a dog...too long.

I'm so very grateful for him.

Grateful for his effervescence.

Grateful for his willingness to just hang out with me day in and day out.

Grateful that somehow our worlds collided and I get to be with him each and every day.

I marvel at the sheer luck...but maybe it is something bigger.

Maybe something, somewhere, knew I needed this kind of love.

Maybe, just maybe, it was meant to be.

Buddy...

Separate is NOT Equal...We Know This...Let's Move

"We conclude that, in the field of public education, the doctrine of "separate but equal" has no place. Separate educational facilities are inherently unequal." 

United States Supreme Court, Brown vs. Board of Education (1954)

19freaking54.  What on earth are we still talking about 59 (!) years later?

Why is there any question how children are educated and why children are educated this way?

Why??

Because old habits die hard and ignorance and preconceived notions die even harder...or maybe they never die.

We have students separated from each other. All sorts of students.  We have the students that are identified as "gifted" (based on their performance on an exam) separated in my town from the rest of the students.  This is a big controversy here.  Ironically, this spot is a fully inclusive district for students that have identified special needs.  Those students are included in the regular classroom, no questions asked.  

How refreshing.

In other districts, if you have a child with an identified disability you have to fight your way into the regular kindergarten. As if all of those other typical kids entering kindergarten spoke coherently, had well-developed social skills, knew all of their phonemes and were ready to read. Ask any kindergarten teacher about her typical class.  She (or he) will tell you of the wildly differing abilities of the students.   This, in fact, couldn't be a better time to allow students with special needs into the regular classroom...but often the parents of these kids feel cornered into a separate classroom known as an SDC class (special day class -- that sounds super equal to the typical kindergarten class, right?) 

Wrong.

Here's the deal...separate is not equal.

It was true in 1954 and it is still true in 2013.

Let's look at the data.  We have 30+ years worth now.

It's overwhelming.

"The largest study of educational outcomes of 11,000 students with disabilities, the National Longitudinal Transition Study, showed that when students with disabilities spent more time in a general education classroom they were more likely to score higher on standardized tests of reading and math; have fewer absences from school; experience fewer referrals for disruptive behavior; and achieve more positive post-school outcomes such as a paying job, not living in segregated housing, and with having a broad and supportive social network. These results were true regardless of students’ disability, severity of disability, gender or socioeconomic status."

Also, the data is substantial for non-disabled students within that same classroom -- they do better too.  Together, they also are learning how to live with each other in a positive way so the social implications are huge too.

(cited by Cheryl M. Jorgensen, Ph.D., University of New Hampshire)

In a nutshell, if a student with disabilities is in a fully inclusive school environment they have a better chance at:

1) finding work

2) making friends

3) living independently

4) having a serious and lasting relationship

In short, they get a real chance at freedom.

That is exactly what Brown vs. Board of Education was fighting for...freedom.  They were fighting for a real chance.  Fighting for some hope.  

Fighting for the opportunity to become the person they were meant to be.

We ALL deserve that chance.  Kids with disabilities are no exception.

At two different places, with two different groups of educators I was pleading my case this week. On my way to speech #2 in the car I was practicing my presentation out loud.  Out of annoyance and silliness at having to say that "separate is not equal" in another room of educators in 2013, I decided to call myself The Lorax.  

Only instead of speaking for trees, I'm speaking for something even more important: kids.

Who doesn't want to find work, make friends, live independently, or have a serious relationship?

Nobody.

All people want is a chance.

That's all anybody deserves.

It's a given.  We figured it out 59 years ago...

can we please follow through?

Imagine how amazing our world would be if we used the vast and amazing and exponentially growing technology to actually serve our students in inclusive classrooms.

Imagine not having to prove yourself just to get through the door?

Why should ANY kindergartener not be included?  

You tell me.

Why should any student be told you're not good enough?

Why should any student have a separate education?

We have a beautifully written law called the IDEA (Individuals with Disabilities Education Act).  It was ground-breaking legislation in 1972.  And it stated boldly:

 “Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society. Improving educational results for children with disabilities is an essential element of our national policy of ensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities.”

WOW!!!

That right there is telling the students with disabilities to come out of the shadows. 

Get out there and "fully participate".

You are part of us.

You deserve every opportunity.

19freaking72. That's when that law was written. 

Why are we still talking about it?

Open the doors.

Let the students into the very same classroom as all of the others.

Use technology.

Use the best practices for teachers that we know work.

Give supports to the students who need it.

Use the internet to connect with educators who are doing it right this minute and doing it well.

Watch the magic.

Watch the typical students rise to the occasion.

Give them that chance.

Watch the students with disabilities rise to the occasion.

Get ready to smile and know joy and see social justice and educational equity in action.

Full inclusion's time is now.

Ben Franklin said it best:

"There are three types of people: the immovable, the movable and those that move."

Let's move.

It's Where's Waldo!  Can you spot the kid with a disability during PE?

They are all just having fun...they all deserve to...together.

Slip Sliding Away

"Darn the wheel of the world.  Why must it continually turn over?  

Where is the reverse gear?" 

-- Jack London

We negotiated.  She wanted a shower.  I wanted to give her a bath.  We compromised as we fortunately can often find our way to do: I'd wash her hair in the tub and chat for a minute.  I'd enjoy her hair, her little face wet with water, her closed eyes and lashes laden with dew drops. I'd notice her leaning her head way back, letting me rinse and rinse and rinse long after it was necessary.  I'd wash her face and touch those cheeks and suck up that smell of cleaning away the grime of the day and getting ready for the night.

After that, she'd get to have a shower on her own.  I'd set it up and hand her the soap and give her the freedom of water rushing down, time alone lost in her thoughts, the privacy and big-ness she is ready for and waiting for.  Darn.

I remember reading a long time ago that we make a big deal about the beginnings.  We take photos of the first day, the first time, the first class and we record them.  But no one gives us the memo on the last day, the last moment, the last time.  Hardly ever can we tell that it's ending.  It just slip slides away...morphs into something new and before we know it, it's over.

Because I've done this a few times, I'm more aware of the endings as they approach.  I'm on the look out now.  I know.
I can feel it and now I take the mental photograph.

I can't tell you how many baths I've given but I am my mother's daughter and she loves a clean child.  She scours the fingernails (I still remember my fingernails hurting from her own fingernail cleaning underneath mine), washes behind the ears and inside the corners of the eyes.  She gets in every nook and cranny and the result is a very clean child.  

I am the same. 

 I never minded giving baths.  I loved the forced opportunity of stopping and slowing down and cleaning and caring for my babies.  I cherished the smell of a fresh-from-the-the-tub child.  I snuggled in bath towels as long as possible, giggled at the naked adorableness, watched those bouncing booties...but now, twenty years into it, my time is running out.

I know.  I know.  Get over it.  

It's not that big a deal.  But for me, it's another reminder that the joy of babyhood, toddlerhood, preschoolerville and yes even early elementary school is on its way out.  My chickadee is turning seven in just a few weeks and her patient tolerance for my intensive mothering in the bath department is going down the drain...the final whirlpool is beautiful.  It's all very very good.  I'm just noticing.

So, today, I'm grateful for the few baths I have left.  Grateful that I have had the joy and chance of bathing four kids.  Grateful for the bounty of clean water that I so often use with the barest of acknowledgements, knowing there are millions of mothers who would love nothing more than to put their baby in a hot bath and scrub them clean.

Today I'm grateful for my baby and my ability to finally see the bend in the road and know that it's all changing...as it should be...

in all the right ways.