Friday, February 24, 2012

When Will They Come for Me?

Disability is the only minority that any of us can join in an instant.  And until we build a world that includes everyone, we're all going to miss out.                                                              --Lawrence Carter Long in the documentary Monica and David

This week Time magazine featured an article on Down syndrome concerning the ethical debate that is raging over advances in prenatal testing.  A new blood test from Sequenom, a biotech company based in San Diego, makes the prenatal discovery of Down syndrome a simple process which carries with it the ability to reveal the extra chromosome as early as 10 weeks gestation with nearly 100% accuracy. Similar testing will likely soon be available for other chromosomal deviations.

It is true, that prenatal testing as a means of preparing for the future can be a good thing. Never has there been a world so prepared for a child with Down syndrome.  Early intervention, trained therapists, and myriad resources in the forms of books, blogs, and support groups all are at our fingertips.  Projects like I Have a Voice, cartoons like Punky, and events like the Buddy Walk serve to remind the public that human beings are not made from cookie cutters  For each of us then as individuals, the future would seem to be a bright and exciting place.

But I fear that the main purpose of this early and efficient test is aimed not to prepare for a future of diversity, but to destroy it.

And I wish that I could reach out to everyone who receives the news of that extra chromosome and say...I know.  I know how scared you are.  I know that you wouldn't choose this now.

But I also know that 99% of families love their children with Down syndrome.

I know that 88% of siblings feel that they are better people because of having a sibling with Down syndrome.

I know that 99% of people who have Down syndrome themselves are happy with their lives.*

And I know that there are waiting lists of loving families who are hoping to be able to adopt a child with Down syndrome.

A prenatal test can't tell you that.  A textbook analysis of that extra chromosome is only a biological description.  It can't tell you the personality, the joy, and the unconditional love that seems to come as part of the package.  It also can't predict the fierce love that will overtake you, the strength that will become you, the great and wonderful family of diversity that will join you.

A prenatal diagnosis could never have revealed to me the joy with which Wade greets each day.  It couldn't have whispered the happiness of hearing the words, "Good morning, Mama, good morning!"  It could never have communicated the pure pleasure of the enthusiastic thankgivings that pour forth every day from Wade, no matter whether we have given him a cookie or a chore.  It couldn't have pictured how his eyes curve into happy half-moons when he laughs or how the warmth of his hug makes every homecoming heaven even though I've only been away for 15 minutes.  And it could never have hinted of the aching wistfulness I often feel--not for the life we lived without Down syndrome, but for the life that Wade lives with it.

It is a life lived with a generosity of spirit that I wish could become my own.  For his is a vision that includes a friend behind every door, beauty in a crumpled leaf, and gratitude for a crust of bread.

Naive, you may say.  He just doesn't know enough to know better.

Maybe so, maybe so.

But it is through his naivety that I have been shown the pure goodness of unadulterated love.  And it is because of this innocent example that I am learning what it is to be truly human, truly imperfect, and truly loved.

It is a universal message that we all yearn to hear.

And so I ask you to consider the future--the future of us all--when I say, "Please, please don't kill the messengers."

First they came for the communists,
and I didn't speak out because I was not a communist.
Then they came for the trade unionists,
and I didn't speak out because I was not a trade unionist.
Then they came for the Jews,
and I didn't speak out because I was not a Jew.
Then they came for me,
and there was no one left to speak out for me.
                                                                --Martin Niemoller

 *Statistics based on research by Dr. Brian Skotko published in the American Journal of Medical Genetics

Monday, February 20, 2012

Someone's Been Tampering with the Answers*

What is your name?

     Wade: Pooh Strite!

Where do you live?

     Wade:  In a circus!

What do you want to drink, Chris?
     Chris: Does Bud Light sell water?

*Disclaimer:  We have no idea where the answers originate; we only know that if you ask, they will come.

Tuesday, February 14, 2012

Love Unclenched

Now I know I've got a heart, because it's breaking.
                                                                    --The Tin Woodman in The Wizard of Oz

Last night, on the eve of the holiday dedicated to the celebration of love, I read a wrenching post entitled simply "Alone".  From the torn heart of a dad, comes the cry we hear echoed far too often by those in our local Down syndrome support group:  what do I do when my child with a disability doesn't have friends?

Many of these children are involved in classes and activities in which they have a social life of sorts.  But at 3:00 or 5:00 when the class ends, so does the interaction.

Adults who have proved to be independent enough to live on their own also grapple with this loneliness, going home after work to spend the evening hours in solitude, often sinking into depression before their families discover the cause.

And each time I hear or read of another similar account, I worry about the kind of world we inhabit where this unconcern for others happens with such regularity.  Are we really so shallow that we can only appreciate diversity under threat of the law, or through the coercion of outside forces?  (And who of us would want a friend who was forced to grudgingly spare us an hour?)

Like so many parents caught in this uncertainty, I don't have the answers, only theories.  But I'm going to venture to say that I don't believe most of humanity is that cold.  I think they are only scared.

I remember the fear I had before I became acquainted with Wade.  The fear of meeting others with disabilities, the fear of feeling uncomfortable in an unfamiliar world.  What would I say?  What would I do?  What if I couldn't understand what they were saying?  What if I said something inappropriate?

Now I realize that the sad thing about all of those "what ifs" is that they all were focused on me.  What if I reach out and something happens to me?  What if I get embarrassed/hurt/humiliated?

Perhaps I needed the shaking and cracking of my own heart to realize that real love isn't about me.

For it was then that I discovered the greatest "what if" of all.  What if I were the one eating alone?  What if it were my child?  What would I want others to do?  And then the answers became simpler.  My embarrassment didn't matter at all.  What really mattered was that, even if just for a moment, I made someone else feel valued and loved.

And I am learning that the greatest things I can do are to change myself and then to use that change to influence others.  That's why for story time tonight, I read the post "Alone" to Randall and Chris.  It opened the door to some good questions we might have otherwise missed asking ourselves.

I can't predict the future; I don't know how my children will respond when I am not present.  But I can hope that I am planting seeds of compassion that will grow to influence others.  And I can hope that as you have read this post, you have been influenced as well, and that tomorrow you will go out to greet the world, welcoming and unafraid.

Because you know what it feels to be human and to want love.  And you know that you hold one of the keys to making a difference.

The question, "Why do children suffer?" has no answer, unless it's simply, "To break our hearts."  Once our hearts get broken, they never fully heal.  They always ache.  But perhaps a broken heart is a more loving instrument.  Perhaps only after our hearts have cracked wide open, have finally and totally unclenched, can we truly know love without boundaries.              
                                                                                 --Fred Epstein, M.D., If I Get to Five

Tuesday, February 07, 2012

Montessori and More

I really never met Maria Montessori until I stumbled into her one day while absorbing massive amounts of information relating to the education of Wade.

I only wish I had met her years ago.

Science is just now beginning to document and verify what Maria learned 100 years ago from simply observing the way children learn best.  She had no brain imaging, no way of seeing inside those little heads and yet she taught the children who were considered to be the unteachable and then applied her learning to all children everywhere.  Brilliant.

I don't believe in rigid adherence to her pedagogy, but her methods can be applied anywhere there are children, parents, and teachers.

Practical life learning

Movement and balance awareness
Can you carry the bell without ringing it?
Can you balance the marble on the tee?

Hands-on learning and creating order by categorizing

Finding order through sequencing

Simplifying  the variables

Early implementation of fine motor activities 
(This picture, Wade says, is a robot holding his ears.)

Visuals, lots of visuals
This is a terrific way to teach odd and even numbers.  Line up your counters (pennies, buttons, or whatever) two by two.  For the odd ones, put the leftover counter at the bottom center.  Then run your finger down the center column while saying odd or even for each number.  On the odd numbers your finger has to stop before hitting the number because it runs into the penny.  On the even numbers, your finger can continue down the path to the number.  What a great illustration for visual learners!

Okay, okay, this is not Montessori!
But it could fall under the category of "prepared environment".

*Links to further reading concerning Montessori learning

Wednesday, February 01, 2012

Mommy's Vocabulary Lesson

Drink until you hear a sneezle and then go show me something with a handle.

He drinks...

...he hears the sneezle (you can only hear sneezles at the bottom of your cup)

...he goes off in search of a handle....


Well.......yes, Wade.  I guess you're right.

That is a...