Birthdays, Lizards and Everything Else

Wade and Christopher both have September birthdays 10 days apart.  Wade sang "Happy Birthday" to us all individually whether or not we had turned a year older.  We were all perfectly okay with that.

He also decorated this ball of ice cream and said it was his birthday cake.  I appreciated the healthy emphasis.

Supper isn't over until you have used a micrometer to get the exact measurement of one grain of salt.

And you haven't really lived until you have looked eyeball to eyeball with a lizard.

See?

Nice lizard.

And the lizard hasn't really lived until he has been made captain of his own private boat.

You've heard of the Princess and the Pea?  Apparently this is Wade's version.

And who made the house of cards?

The same person who's been playing with the camera again.

What Do the Siblings Think?

Here is Down syndrome from the perspective of Randall and Chris (unedited):

He's a brother unlike any other.

He's not afraid of anything.  He's very daring.

I like his little potbelly.  I nicknamed him Porky and he loves the name.  But Mom doesn't.

He likes Winnie the Pooh.  He likes to do what we do.

He likes to repeat things he hears other people say, like: "I'm a genius!"

He almost never gets bored.  He thinks his work is play.  He eats blueberries and thinks they are candy.

He's funny.  One time he signed one of Dad's business checks in pink highlighter.

He likes to tell stories.  We can't always understand them, but that's okay. Chris interprets them to mean whatever Chris wants them to mean.

I don't like to think of Down syndrome as a disability.  

Wade is no better or worse than the rest of us.

He's just an interesting variety.

THE END

Look Inside

To paraphrase Tigger, the dangerous thing about stereotypes is that stereotypes are dangerous things.  In other words, to paint all members of one group with the same paint brush is to deny them the right to be human.  This is equivalent to assigning them a number instead of a name.

But when we look at the name instead of the number, we know that, contrary to popular thought, children with Down syndrome are not happy all the time, Italians are not all mobsters, the French are not all romantics, African-Americans are not all basketball players, and Mennonites are not all good cooks or seamstresses. Stereotypes give a "sometimes truth" that can be just as untruthful as a lie.

(photo by Melony Stevens Photography)

So the stereotype says:  children with Down syndrome are affectionate angels.  And they are.  Except for when they aren't.  

For example, that day at school when Wade locked me out of the van--with him and the keys inside and with me outside begging and threatening and writing notes and holding them up to the window in hopes that the written word would penetrate his sulky brain:    "Open the doors now!" and  "Do I need to call Daddy?"  And he snooted his face at me and then pretended I didn't exist.  No, I'm pretty sure he's not an angel.

The stereotype says:  potential is limited for those with an extra chromosome.  And it is.  Except in the ways that it isn't.  

Wade entered first grade reading everything in sight.  And there is not the least bit of hyperbole in that statement.  But he needs a shadow at school to keep him on track.  And sometimes he needs a written statement to drive a point home.  

The stereotype says:  People with an extra chromosome are stubborn.  And they can be.  Except for when they aren't.   

"I am not tired!!  I do not want to go to bed!!!" insists Wade!!!!!  And then I say, "Race you to the bath tub!"  and he giggles and races and wins and goes to bed happy.

But my favorite story of all about stubbornness is below.  It's a story that could fit a stereotype.  But which one?  Is it Down syndrome or is it adolescence or is it just a comedy?  Do go read it.  

"For the Pedestrians and Coffee Drinkers on Wellington Street:  An Apology, An Explanation"

Every stereotype can be broken with a face, and every face has a story.

                                                                                              --Andrew Marin

Every Face

October has become, for us, a month of trying to increase awareness for Down Syndrome. We are joined by many others with the same goal in mind.  But even as a common cause unites us all, we would like to remind you that we are many faces.  Down syndrome does not have just one face, one personality, one sameness.  Neither does any other group, whether social, religious, ethnic, or political.

Every group is made up of individuals, and all individuals have a unique story.  We live our own story; others live theirs.  And in the telling and the mingling, we learn and change and grow.

Please join us.

...I am the only one that I can be

That is something beautiful

I see the world like nobody else can see

I am the someone that nobody else can be...

I'm only human just like anyone

But I'm the only me under the sun

Just like a snowflake, no two are the same

And there's unity in our individuality

I'm perfect just being me...

He Plucks Delight from the Empty Air

No one does delight quite like Wade does.

You might think, because of the extra chromosome, that he has less to be delighted about than other children.  The additional genetic material, however, seems to have eliminated both the sophistication of fear and the urbanity of boredom, leaving him free to dance in the moment, whatever that moment may be.

Delight for him is GRANDMA even though he just saw her 10 minutes earlier.

Delight is rain! rain! rain! even after experiencing rain! almost every day this summer.

Delight is eating a crust of bread as if it were a treasure.  "Thank you, Mama!"

Delight is sausage ("Oh, YES, sausage!") for breakfast.

Delight is a perverse enjoyment in locking his brother out of the house at the front door, and then also locking every other door just as Chris arrives panting.

Delight is watching The Tigger Movie for the 100th time as if it were the 1st time, except that this time he can say the lines himself.

Delight is finding a microphone and serenading his family while they do the Saturday church cleaning.  And Extra Delight is in astounding his family by doing it like King David, dancing and singing before the Lord while utterly and shockingly naked.

Delight is admonishing his brothers on table manners and ending every lecture by saying sternly, "That is vewy wude!"

Delight is reading Calvin & Hobbes on the way to and from school and finding a cartoon question he thinks is fitting, which he asks with great sincerity: "Mom, can I dwive on the way back?"

Delight is telling Daddy to shut his eyes while Wade snatches up the closest thing (a rag) and presents it (ta da!) as a gift.

And lately, delight is surprising himself.  Like this, at bedtime tonight.

    "May I have a dwink, Mom?"

     I got the drink and gave it to him.  He took it and shut his eyes tightly.

     Then he said, "May I open my eyes now?"

    "Yes," I said.

     His eyes opened wide and he said with convincing delight, "A dwink!  What a big supwise!"

And every day, like the sacred rising up through the common, his delight also becomes mine.

To live content with small means,

to seek elegance rather than luxury,

and refinement rather than fashion,

to be worthy, not respectable, and wealthy, not rich,

to study hard, think quietly, talk gently, act frankly,

to listen to stars and birds, babes and sages, with open heart,

to bear all cheerfully,

do all bravely,

await occasions,

hurry never

in a word, to let the spiritual, unbidden and unconscious,

grow up through the common.

This is to be my symphony.

                                                                        --William Ellery Channing

First Day of School

It's funny how the end of summer comes right after the first of summer these days.

Today was Wade's first day of first grade.

When he came home, he said his favorite part of today was "the schoolwork".

He was very happy to be able, finally, to go to school with his brothers.

Here they are:  first grade, fourth grade, and ninth grade.

Now, I will go off to bed and muster up the courage to send him off again tomorrow.

Perhaps the feelings of a mother have been best described in the words of a dad:

"For parents of special needs kids, that first day of school is a mountain of possibility, and it towers next to a valley of fear."

                         ----Robert Rummel-Hudson, "Hope and Fear and Summer's Passing"

Sounds of Summer

Chris, be quiet!  I'm talking to me.

Mom, I'm hungry!

Do you remember that book I illustrated when I was little?  It was called Pictures Invisible.
(Hmmm.  No, I don't think I remember seeing that.)

When are we going to the library?

I like playing Lightning with my invisible friends.  We each take turns and I play for all three.

What's for supper?

Hello, Mr. Findow!  My name is Cornbread.

I need more books to read.

No, Mom, this isn't a game Wade could play.  It uses four-letter words.  (What?????)

Is there any more meat?

I pray loads during the day.  I think I might be going overboard.

What's for dessert?

There, Mom!  I fixed your blender.  And the good news is that you can break it three more times and I'll still have fuses to fix it.

Blackberry Delight!  I wish I could make my grin bigger so I could better express my feelings!

Here I am, boys!  Keep an eye on me!

Can we read while we eat?

Eek!  Eeeek!  Eeeeeeeek!  I'm just practicing my girl shrieks.

How about a snack?

I'm Tigger, Private Ear.

I'm trying to learn about Black Holes but they keep using words I don't understand.
(Sort of like me learning about Boys.)

Mom, could you help me with this formula: R = 2GM/c² if G is the gravitational constant, M is the body's mass, and c is the velocity of light?

(Um, no, I can't.  But I think it probably has something to do with the Relationship of Food and Books being absorbed by Boys at the Speed of Summer².)

     

A "Cure" for Down Syndrome?

Interesting medical research has surfaced concerning the future of Down syndrome.

In the lab, researchers have been successful in shutting down the extra chromosome that causes Down syndrome. By injecting a gene called Xist into a human cell, the function of the extra chromosome can be silenced. The procedure has not yet been tried in full human bodies, although testing has begun on mouse models of Down syndrome.

Experts are calling this a landmark finding, technological breakthrough, and hope for the future.

But among parents, feelings are mixed.

They speak of excitement over the possible removal of health risks like leukemia and dementia, but express unease over the thought of changing what makes our children unique.  One parent questioned whether this would be forcing society's expectations of what constitutes a "worthy life" on a group of people who are otherwise happy and satisfied with their lives.

And then there was my favorite response of all:

I know this is a serious issue but I must admit that I am a bit distracted thinking about a mouse with Down Syndrome! If I were getting a mouse, I would definitely choose that one! I wouldn't change my Lori for anything in the world! We love all 47 chromosomes and wouldn't want anybody to turn off any of them! --Robin

Like others, my feelings about this medical breakthrough are conflicting.  My thought process leads me, once again, to the question I have never satisfactorily answered:  

Is Down syndrome something Wade has or is it something he is?

While I know that an extra chromosome does not define him or his potential to contribute meaningfully to society, I still find it hard to separate that 47th chromosome from the rest of his being.  In many ways he is like us, his biological family; in many other ways he is like those with Trisomy 21, his chromosomal family.  I cannot separate the two and still picture the whole person of Wade.

And so I wonder.

Would silencing the chromosome also silence the unconditional love that I admire?

Would it change the beloved way he runs a bit awkwardly like a lopsided leaf fluttering in the wind?

Would it make his speech easier, but his language tarnished?

Would it impair his delight in the common, his gratefulness for the least?

Would it take away his extreme cheerfulness in the (very) early morning?

Would it trade his inherent trust for the daily fear that stalks the rest of us?

Would it remove his gift of innocence and replace it with a sophisticated knowledge of evil?

Would it silence the familiar and give voice to a stranger?

Would it censor the way he says suddenly and often, "I love you too, Mom" for no reason, no reason at all?

Would an easier life be worth the price?

And I know in my heart that if  those questions are answered with yes, then the price for a "cure" is one that is too terrible to pay.

Self-Portraits

Wade likes to photograph himself...

whenever

there is no one responsible around...

to take the camera away.

Unfortunately,

during an unauthorized

photo session,

he broke

the camera.

Uh, oh.

 Or at least,

that's what his brothers

would like us to believe.

What do you think?

When You Look At a Sunset, What Do You See?

Thoughtful people in the nineties [1890s] told themselves in all seriousness that they should no longer admire a sunset.  After all, it was nothing but the refraction of white light through dust particles in layers of air of variable density.
                           - Jacques Barzun in Use and Abuse of Art

Just as Keats knew that cold philosophy will "clip an angel's wing" and "unweave a rainbow", so also do we now know that biology will never capture the true essence of Down syndrome.

It is for this reason that each year we go with Wade and speak to a group of 200 first-year medical students.

We invite them to step outside the textbook for a moment into a world of upside-down elephants and mud-puddle geography.  A world where diversity brings unity and brokenness has value.  A world where doctors share the stage with those who have 47 chromosomes.

This year we were joined by an amazing young woman from Florida, who is the sister of a med student from last year's class.  She shared in her own words what it is like to be an adult with Down syndrome as she attends college and navigates (alone) a campus with some 30,000 other students.  Her story was honest, spunky, touching, and funny.  Her family came along with her, including the brother-in-law she introduced as "The Rat".  Her words were inspirational, not only to the students, but also to our family; and Wade loved having his picture taken with her.

Wade also spoke to the class this year:  "Hello, everyone.  My name is Wade Strite.  I am six years old."  He did well, introducing himself slowly and distinctly, and then later reading sentences that the students typed for him.

The interaction with the students and the thoughtfulness of their questions made a great discussion.  We hope they will go on asking questions, searching for answers, and allowing those answers to make a difference in the lives of their patients.

To what extent does a genetic deviation determine the destiny of a person?

Is one life more valuable than another?  How do we measure value?

Is it possible that those with brain anomalies are able to supply our world with needed talents the rest of us lack?

Temple Grandin seeks to explain some of these unusual strengths in her latest book The Autistic Brain: Thinking Across the Spectrum. She concludes, "If all genetic brain disorders were eliminated, people might be happier, but there would be a terrible price."

She goes on to say, "Neuroanatomy isn't destiny.  Neither is genetics.  They don't define who you will be.  But they do define who you might be.  They define who you can be."

And, I would add, sometimes they also define who the rest of us are.

Sometimes in this world, we are enabled to become so compelled by passionate belief that we can swallow our fear of 200 very intelligent medical students in order to share something much bigger than ourselves.  Sometimes it takes the personal observation of an extra chromosome in order for us to appreciate the purpose and beauty of many other orientations of brain function.

Sometimes, perhaps, it takes a small voice saying, "I am six years old" in order for us to enjoy the sunset again.