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

No One Is Alone

"Sometimes people leave you halfway through the wood.

Others may deceive you.

You decide what's good.

You decide alone.

But no one is alone."

--Into The Woods

So tonight Patrick had to write down all of his various entries that would be placed under his name on his yearbook page.

He's in 8th grade in a K-8 school...the top of the heap.

It's the big time.

First he had to list his interests.

Basketball, swimming, drama, musicals, music, traveling and Broadway made the list.

He wanted to add that he was a "love expert" (his favorite phrase from the movie Frozen, other than "Let It Go" the Oscar award-winning theme song from it) but I told him that it would be vetoed by the yearbook editors.  

They're picky this year.

Next, he had to list people he most admired:

Sarah, Steve, Ashley, mom and dad. Jack, Mary Kate, Caroline and Miah.

First off, can we chat?  Are John and I a two-for-one deal??

Are we not separate entities?

Not in Patrick's mind on this day or so it seems.

Miah's name made me smile...Miah placed Patrick in her list of people she admired in last year's yearbook.  I forgot that kindness but Patrick did not.

Finally, we had to think of an inspirational quote.

We started talking about favorite lines from movies and plays.

He was really pulling for one of the many funny lines from Frozen by Olaf the snowman but I told him those yearbook editors wouldn't go for it.

So he turned to his old stand by, perhaps his favorite Broadway play of all, Into the Woods.

Just like that, it appeared.

Like a comic strip speech bubble above his head:

"No one is alone."

As soon as he said it, he knew that was it.

He tumbled and tossed some others around:

"Opportunity is not a lengthy visitor." being a solid number 2.

But he just kept coming back to the fav.

No one is alone.

Truly, no one is alone.

This child of mine, so divinely placed, just knows how to get to the heart of what matters.

I cried in the days after Patrick's birth, believing, however erroneously, that I would never make another friend...that Patrick was my barrier, my wall, my fortress.

Honestly, I couldn't have been more 100% wrong.

I would laugh at the old me...right out loud in an exuberant way...knowing the life I have right now...so full to the brim with new amazing, heroic, inspirational people that have crossed my path all because of Patrick...if I didn't cringe at the sheer number of abortions caused by that same fear and prejudice.

I want you to know..no matter how afraid you are...no matter how unsure...no matter what is going down in this difficult journey we call Life...that Patrick speaks the truth.

No one is alone.

You may feel isolated.

You may feel like a freak.

You may feel unlovable, unknowable, unforgiven but that is just the story you tell.

As they say so wisely in Into the Woods:

(and perhaps this is my favorite quote)

Careful the tale you tell,

that is the spell.

Children will listen.

So tonight, another sprinkle of glitter came my way on my path of Life.

More sparkle...more light...more love.

Once again, I thank my teacher...

or should I call him my bridge, my crossing, my light at the end of the tunnel.

Whatever the metaphor, in this month of celebrating people with Down Syndrome, 

tonight I am profoundly grateful for my front row seat.

Life

What do you think makes for a happy life?

Truth is...it's not much.

Something to love.

Something to hope for.

Something to do.

Those are the "grand essentials" of happiness...if you have that, you are pretty much batting 1000.

Sometimes we go through times where we are out of balance:

I have too much to do and nothing to love.

My dreams feel out of reach...my "hope for" is a joke.

My "something to do" feels mind-numbing and monotonous.

But, the process of life forces us to find a way to make room for the big three.

And when we do...it's magic...poof: happiness.

So, on this anniversary of the biggest decision of our courts to allow abortion to be legalized I want to ask all of you...

are we better off choosing death over life?

Does our world see the sacredness of life?

In our world of technology and amazing photography we can all clearly see that life in utero is most definitely going on in there.

We have fingernails and toes and full 3-D images that show perfect profiles of the children within.

Can we at least establish that the "clump of cells" concept is out dated?

That's no clump of cells...there's a full fledged human in there.

Now, that human might not be convenient.

It might be the object of very bad timing.

It might be born into poverty or sadness or a messed up world.

But what it takes to be a full-fledged human baby is so miraculous it deserves that chance.

With abortion, we've accepted the idea that life is a convenience.

We have swallowed the idea that some lives are worth living and others are not.

We've been enveloped in a world that takes the sacred and the holy out of conception and birth.

Anyone who has been witness to a birth knows that it is sacred ground.

A portal.

A passage from another world and into ours.

Shutting that down seems like an impossibility but the side that embraces abortion has done just that.

What are the odds that a baby will arrive in your life?

None of us know.

We can try and try and try and still be infertile.

We can have one child and be unable to have another.

We can have sex one time and find ourselves pregnant.

It's a crapshoot.

It always is.

And that's the beauty of it.

It's a leap of faith.

A crazy idea.

A wild, unbelievable blessing.

A miracle.

Yes, friends, every.single.baby.is a full-fledged miracle.

Healthy or not.

Poor or not.

Crack-addicted or not.

Miracle.

Out of the everywhere and into the here.

I have a child that the world views as disposable.

People have asked me "if I knew"...insinuating in the most despicable way (but always with the brightest smile and most interested face) that if I had known I might have chosen better...

I always answer that I did know -- in my heart, with the strongest premonition I've ever had -- but all of my tests came back 

all-clear.  Including my favorite one, the ultrasound where the technician pointed out all four chambers of Patrick's tiny baby heart, when in fact, he was born with no chambers and needed open heart surgery almost immediately.

Yes, I have a child that many, many people believe should be terminated...his life is too terrible, 

too burdensome, too much trouble to be allowed to breathe another breath.

Ummmm, not really.

Tonight, I had a regular old boring night.
I made breakfast for dinner.
Walked Caroline through the basics of borrowing in subtraction.
Found my son who is "disabled" more able than me with our TV system...finagling some way to watch You Tube on our TV?!?
Read books with both Patrick and Caroline before bed.
Listened to their prayers.
Cleaned up some dishes.
Procrastinated, yet again, on making lunches for tomorrow.

Not one time did I wish my son wasn't born.
Not one time did I watch him interact with his sister and think anything other than I wish they would stop annoying each other.
Not one time.

Babies are miracles.every.single.one.
My prayer is that some day our entire world can hold sacred every life:
the unwanted, the inconvenient, the disabled, the difficult, the very old and fragile.
Every life.

I don't believe any of this is a "choice".
Gifts that are given.
People waiting, just waiting, to rock your world...
one tiny baby footprint at a time.

Tonight, I am grateful for my children.
Grateful for all of the children I have been privileged to know and love.
I am also profoundly grateful for the gift of life...most especially my own.
Ordinary.
Clumsy.
Messy and funny.
Thank you God for this sacred time of being alive.
Man, is it beautiful.

An Open Letter to Marissa Mayer and While We're At It My Now 17 Year Old Daughter

***This is a continuation in a series of letters I've been writing to my now 17 year old daughter, Mary Kate, about living and figuring out the world we are a part of as women and as mothers.  It also happens to include an impassioned plea for Marissa Mayer to rethink her decision to be the CEO of Yahoo weeks before giving birth to her first child.***

"Each day of our lives we make deposits in the memory banks of our children." 

-- Charles R. Swindoll

Dear Marissa,  

I hear congratulations are in order for not just one fantastic opportunity but two: CEO of a Fortune 500 company, Yahoo, and the upcoming birth of your first child.

Sincere congrats -- you are blessed.  

You are clearly one smart cookie.  But I'm here to tell you you've done something dumb, really dumb.  

You have believed the myth of motherhood.  The load of crap that Johnson and Johnson and Ford Motor Company and Apple, Inc., and pretty much all of commercial America wants to sell you as a new mom:  You can be everything to everyone.
You can "have it all".

Well, perhaps, Marissa, with your gobs of money and your esteemed education and your fantastic locale, perhaps you can have it all...but I'm afraid your child can't.

When you choose, intentionally, mindfully, knowingly choose a giant job just weeks before giving birth, guess who loses? 

Your baby.

Having a baby, especially your first baby, is a huge physical, emotional, spiritual, mental transition...HUGE.  No longer are you first.  No longer are your needs, wants or desires, first.  You have chosen to have a child and the child is supposed to come first.

How can your child come first, when Yahoo is there...pestering you, nudging you, bothering you during those first weeks of motherhood?

How can you attend to your own healing and adjustment, let alone your tiny infant's, when a giant monolithic publicly traded, flailing company is begging for attention?

Babies need advocates.  Babies need someone to be their voice.  Babies need love and attention --  most especially from their moms.

Here's a dirty little secret: NO ONE, honestly, no one will care for and love your baby in the way you will...not even your husband or your own mother. 

Yes, of course, you can find fantastic nannies.  You can hire loving and experienced people...but nobody can care give and love like the mother.  Marissa, only you can fill that role.

****

I know you don't want to hear this.  I can only imagine what you would have said to your own mother if she were telling you these things: "Mom, I can't believe you're not happy for me."  "I can't believe you're doing this to me...giving me some kind of guilt trip."  "Mom, I can afford only the best; I will get only the best to take care of the baby."

I'm telling you what no one else will.  The one person who is going to lose in all this is your sweet baby boy.  If he doesn't deserve to be the center of your world at his birth, when does he?

Corporate America is going to greedily steal any and all of your free time.  It will suck away the enjoyment of just lingering over your baby's precious presence.  It will take every single bit you have to give and ask for more.  Your baby on the other hand, gets the leftovers...how crappy is that?

****

I know it's hard to imagine.  Truly it is inconceivable, but your precious baby will fill your heart and soul and change your world view.  You will be a different person.  And you will look back at this giant job and smile...you thought that was important.  You thought that was something to be proud of.  Get a load of that baby boy...now he's the one thing that matters most.

If you let your heart speak to you and try and drown out all the people who need you to step it up and save Yahoo, you will know the answer.  You won't want to sit in on any meeting...you will biologically, physically and emotionally want to be one place, and one place only: right next to your sweet baby boy, and without any distractions.

Marissa...I know what I'm talking about.  

I'm the mom to four children.  My oldest is turning 20 this year.  I've been at this for a while.  I'm sure not perfect but I know that I never regret a single moment I spend with my kids.  There is no place I'd rather be...no place.  And trust me, the big office at Yahoo, is one of the last places I'd pick to hang out in without my kids.  

I also happen to be married to a CEO of a publicly traded company.  And yes, he works his you know what off.  He's a big wig but guess where he'd rather be...with his kids.  Ask him what his greatest joy has been and it will have nothing to do with work.  Check out the film footage of all those people helplessly trapped in the Twin Towers on 9/11.  Do you think they were wishing for one more day at work?  Hell no.  They were begging for another moment with their families.

Life is full of choices.  Some of them are no-brainers.  This is one.
The precious, never-to-return early-years with your first child vs. a company that is teetering on the brink of failure.  

Love + Family > Money + Prestige

every.single.time

Trust me.  Yahoo is not "evolved" in their thinking.  No one in that room who had children wanted you to know what you were trading in with this agreement.  No one wanted to say out loud that you will be placing the company ahead of your child over and over again without even knowing it.  No one wanted to acknowledge the privilege and joy of motherhood that you will miss by not being present during your tiny baby's first weeks, months, or years. 

What are the chances that you can be a CEO again?  

Pretty high.  

What are the chances that you can get back your child's first years? 

None.  

I know it is frightening.  I know that it feels so normal now that you can't imagine not being your super organized, very clever, totally together self. I'm here to tell you that it's all going to change.  Believe it or not, being pregnant is the easy part.  It's going to get a lot more complicated very quickly.

I wish for you a joy-filled last few months of pregnancy and a real chance to prepare both mentally and spiritually for this amazing gift you are being given in your first child.

I wish for you an easy labor and delivery, a healthy baby boy and moments of deep and fulfilling love like you've never known.

Mostly, I wish for you the courage to choose your baby over this ballyhoo called Yahoo.  I wish for you the freedom to just be.  Just be a new mom delighted in her new child.  Just be smitten, enraptured and hypnotized by your tiny bundle.  Just be a person all wrapped up in their child.  

The world could use a few more people putting their children first.

"The secret to world peace is to go home and love your babies." 

-- Mother Teresa