The Clowns of God

I always find it interesting to be reading a book and find an unexpected reference to Down syndrome.  The ways different authors deal with the subject are intriguing and I often wonder what has influenced the way they write.

A few years ago, I picked up the book The Clowns of God at random, piqued by the unusual title.   More than halfway through reading it, I was surprised to find mention of a little school of children with Down syndrome.  The school was sponsored by a grant from the French government and by the charity of wealthy individuals, one of whom had nicknamed the children les petites bouffonnes du bon Dieu... or "God's little clowns..."

Written over thirty years ago, the book explores end time events brought about by the imminent threat of all-out nuclear war.  The story weaves together politics and Catholicism, raising questions that neither politics nor religion can fully answer.

At the end of the book, Jesus makes an appearance to a group of people hiding out in the mountains. The people waver between doubt and belief and wish for proof that this is indeed Jesus.  Included in the group is the little school of children with Down syndrome, and Jesus asks to hold one of them on his lap.  He then says:

I know what you are thinking.  You need a sign.  What better one could I give than to make this little one whole and new?  I could do it; but I will not.  I am the Lord and not a conjuror.  I gave this mite a gift I denied to all of you--eternal innocence.  To you she looks imperfect--but to me she is flawless, like the bud that dies unopened or the fledgling that falls from the nest to be devoured by the ants.  She will never offend me, as all of you have done.  She will never pervert or destroy the work of my Father's hands.  She is necessary to you.  She will evoke the kindness that will keep you human.  Her infirmity will prompt you to gratitude for your own good fortune...More!  She will remind you everyday that I am who I am, that my ways are not yours, and that the smallest dust mote whirled in darkest space does not fall out of my hand...I have chosen you.  You have not chosen me.  This little one is my sign to you. Treasure her! 

This is a book of fiction.  But fiction can be a powerful vehicle to convey truth.  In today's often superficial world where appearance is more important than truth and where sophistication is more to be praised than innocence, Morris West's assessment deserves, at the very least, a moment of serious thought.

His words ring true to me, because I have had similar thoughts in the last years.  Thoughts that challenge my innate assumption that "normal" is better and anomalies are flawed.  Gradually, I am realizing that some of the things Wade will never do are because he will not possess the level of complex thought required to be evil.  

And I remember that once there was a world where created beings were made to be innocent.  A realm where evil was not recognized.  A place where humans walked with God.

A garden that was called Paradise.

Post Haircut

Sometimes we hear surprise sentences from Wade with words we didn't expect.

Dad:  You're looking nice, Wade!

Wade:  Yes, I'm pretty handsome.

Mom:  What does handsome mean?

Wade:  It means this.

The Haircut

Dad said, "Let me give you a haircut."

And it seemed like a good idea...at the time.

But I had no idea

he would make me look like this!

Oh well.  Maybe the girls will still like me.

Public Service Post

Did you know that when the brain doesn't get perceptual change it will hallucinate in order to provide variety for itself?

There is even a special term for the trains of brilliantly colored and varied hallucinations which come to console or torment those kept in isolation or darkness: "the prisoner's cinema."  

Total visual deprivation is not necessary to produce hallucinations---visual monotony can have much the same effect. 

                                                                               from Hallucinations by Oliver Sacks

Thus sailors on a calm sea, travelers on a sandy desert or a snowy prairie, or pilots of high-altitudes may find themselves subject to a bored brain trying to create variety.  Likewise, auditory monotony may also lend itself to auditory hallucinations.

So, perhaps by giving us "interesting variety" in our lives, God is saving our brains from having to make up the stimulation it needs.  Have you ever thought of thanking God for the variety of life that keeps you sane?

In case, however, this week hasn't provided you with enough variety, I feel an obligation to keep you from hallucinating.

These pictures are what the doctor ordered.

The attachment.  No piercing required.

Live lizard earring.  Totally chic.

Other attachments.  No lizards were harmed.

Knowing how to accessorize is everything.

Name Your Fear

Why blog about Down syndrome every day for a month?

It is, after all, one of the most recognized disabilities.  Most people know a little bit about Down syndrome. And if they are not directly involved with someone who has Down syndrome, why would they be interested in knowing more?

Not so many years ago, we wouldn't have been motivated to get involved either.  It was easy to dismiss groups banding together for a cause as being part of another world quite separate from ours.

But then we received a little package of motivation called Wade.  It's amazing what a personal encounter will do to stretch your horizons.  Because of him, our worldview has expanded to include the realization that the things we are learning are not just about Down syndrome.

They are about humanity and the lives we live and the emotions we feel and the opportunities we allow others to experience.  You don't need an extra chromosome in the family to know the universal law of treating others the way you wish to be treated.  The underlying moral principle in the Golden Rule is shared by almost every religion and culture worldwide.

But sometimes, in spite of our best efforts, we don't know how to treat someone who is different from us. Our lack of understanding can breed fear and avoidance.

Because I knew so little when Wade was born, I was afraid of that extra chromosome, afraid of the future, afraid of the unknown.  Today, I see parents who have received a prenatal diagnosis of Down syndrome coming to our support group and gathering information so they can prepare ahead of time.  And I greatly admire their foresight and courage.

What was it Dumbledore said?  "Fear of a name increases fear of the thing itself."

But when you learn that your fear is named Wade, or Peyton, or Corey, or Maggie, or Azariah---then the unknown becomes known, and the future has a face.

These faces teach us that one of the most basic longings of humanity is to be known and loved for who we are, no matter the color of our skin, the extent of our possessions, the fact of our orientation, or the number of our chromosomes.

Ron Hall and Denver Moore wrote a book that reaches across cultures to break down stereotypes and to give glimpses of the better world that is possible when we seek first to understand.  This book has nothing to do with Down syndrome and everything to do with all of humanity.  An international art dealer and a homeless man have nothing in common, it seems.  Not even the color of their skin.  Yet, they discover, there is a thread that connects them--fragile at first and then enduring and strengthening until it becomes a band of love.

And so it can be for all of us.  Because when I take the time to really listen to you, I learn that, not only do we have a common bond, but also that you are the same kind of different as me.

“I used to spend a lotta time worryin' that I was different from other people, even from other homeless folks. Then, after I met Miss Debbie and Mr. Ron, I worried that I was so different from them that we wadn't ever gon' have no kind a' future. But I found out everybody's different - the same kind of different as me. We're all just regular folks walkin' down the road God done set in front of us. The truth about it is, whether we is rich or poor or somethin' in between, this earth ain't no final restin' place. So in a way, we is all homeless - just workin' our way toward home.” 

                                   --Denver Moore from Same Kind of Different As Me

Here's a Thought

 

It is 1979, a basketball game in the Brandeis gym.  The team is doing well, and the student section begins a chant, "We're number one!  We're number one!"  

Morrie is sitting nearby.  He is puzzled by the cheer.  At one point, in the midst of "We're number one!" he rises and yells,

"What's wrong with being number two?"

The students look at him.  They stop chanting.  He sits down, smiling and triumphant.

                                                    from Tuesdays with Morrie by Mitch Album

And Then There Are the Rest of Us

I attribute the surprises of Wade's brain to Trisomy 21.

But then Chris talks about waking up in the morning and seeing a colored circular line-up of all the days with the current day zooming in for a close-up view.

And Randall sees black numbers lined up in strange ways in two-dimensional squares laid out at ascending right angles with lighted backgrounds ranging in shades from white to dark gray.  He sees days of the week like a boardwalk with each board being a day.  His days of the week and his numbers go from right to left, which really freaks me out.

Nevin has weird urges to drive off bridges when he crosses them, an impulse which he shares with nearly all of his siblings.  Now that's got to be genetic, right?  (And I didn't know that about him until relatively recently!)

Aaaaaaaaaak!  My brain doesn't operate in those ways; therefore, I would have to conclude that I alone am normal.

But then I seem to recall tendencies to laugh uncontrollably when over-stressed, under-rested, in church, or at midnight.  And Nevin doesn't understand that at all.  "What's so funny?" he says.  And, for me, the fact that nothing is funny, and that he doesn't understand how funny nothing can be,  is absolutely the funniest thing of all.

And I'm sure he wouldn't have been surprised that my camera didn't capture the little elf that I saw, sitting on this leaf hammock swinging on a spider's thread twenty feet from Nowhere.

In conclusion, before you think we're just a family of aliens,  I would like to point out that all people have quirks in their brains, some more than others (and if you can't think of a quirk someone else can probably point it out for you).  But part of the beauty of life is that, if we pay attention, each of those different kinds of brains can contribute something unique to society that would otherwise be lacking.

...Because sometimes you need a biologist,

and sometimes you need a poet.

Sometimes you need a scientist,

and sometimes you need a song.

                                                           --Rob Bell

And, sometimes, just maybe, you need an extra chromosome.  I know our family did.

This Is Your Brain on Down Syndrome

Even though Down syndrome is a common disability, relatively little is known about exactly how that extra chromosome works in affecting development and cognition.

This spring, neuroscientist Anita Bhattaacharyya published new research that gives us a limited peek into the brains of people like Wade.  From her medical report, I understand two things:

• Connections between neurons are less, with only about 60% of the typical synapses and synaptic activity.
• A higher level of oxidative stress is present in the neurons from birth, which could contribute to the presence of accelerated again and Alzheimer's in middle-aged individuals with Down syndrome 

Other studies reflect improper development and/or function of the hippocampal and pre-frontal systems of the brain.  These areas deal with memory, spatial navigation, and complex cognitive behavior.

And those are all vastly detailed studies with many things I don't understand at all.

But I do understand that I live with a child whose brain is different.  I cannot observe him day after day without realizing that his brain works differently from the general population.

And this is what that looks like.

He is very apt to take memorized sentences from a book or movie and repeat them at appropriate (or inappropriate) times.  But he struggles to express simple ideas on his own.

For example, one day he said, "I love you!  Bye!" and from the way he said it I knew it was a repeat from something he had heard.

So I asked him who said that and he said immediately, "Bob!"

I asked, "Who is Bob?"

He screwed up his face and thought hard.  Finally he said, "Larry the Cucumber."

And he was very happy that I finally realized he was talking about Bob from Veggie Tales.

He knows that the videos are called Veggie Tales, but his brain just didn't connect everything at the right time for him to tell me that he was talking about Bob from Veggie Tales.

His brain is not, however, consistently disconnected.  Sometimes he pulls it all together.  I was leaving school at the end of recess one day last week.  He ran over to hug me good-bye and said clearly, "I played Duck, Duck, Goose.  I'm going to work fast."

And it always amazes me the things he remembers to bless in his prayers.  "Dear God, bless help Daddy. Van wrecked.  Bless computer, Fancy Pants, Winnie the Pooh, and phone."

He also has the ability to see things we don't (until he uncannily points them out):  Bethlehem in the pan of bread sticks, winking eyes in a pool of ketchup, and Grandpa in his piece of toast.

In school, adding makes sense and is relatively easy.  But reversing the process for subtraction is more difficult.  Naming the number after a given number is easy, numbers before are harder because he has to think through a process backward.

And he observes with his eyes much more than he hears with his ears.

One day he was playing outside while I weeded the flower beds while wearing garden gloves.  As I worked, I showed him the snowball bush that was blooming and told him about the plant parts, stem, leaves, and flowers.  He listened attentively (I thought).

The next day he saw a pair of heavy winter gloves that I had used while cleaning out and organizing the freezer.  I happened to see him suddenly grab those gloves, put them on, and head outside as if he had a mission in mind.  I followed him and this is what I saw.

I don't think he heard a word of my lesson on plant parts.  But he did notice that I was wearing gloves while I showed him the flower!

Even though oddities such as this happen regularly, my brain still feels stunned with amazement when they occur.

I look at his fuzzy brown head and wonder what really is going on in there.

And I think the next tourist attraction that should be developed is not the opportunity to take trips to Mars, but, instead, the chance to take trips through other people's brains.

Well, actually, that might be like a trip to Mars.

Welcome to our planet.

(When brain tours become available, these will be my top four tours:  Trisomy 21, artists, mathematicians, and musicians.)

Uniquely Yours

Whether it's fashion, music, or art,

 Wade has his own ideas about how it should be worn, sung, danced, or drawn.

He loves to draw and interprets his art as he produces it.

(In other words, he draws and then gives it new meaning if it turns out looking like something else).

We have worked hard here at home on visual discrimination.  This picture he drew from a step-by-step guide with me illustrating each step for him.  That was in August.  He is getting better now at being able to look at a whole shape and copy it on his own.  In fact, sometimes now he tells me to "go away" so he can work on his own.  (Yay, I'm fired!)

This one he did at school of his family:  Chad, Stuart, Christopher, Randall, Dad, Mom, and Wade.

(I guess that was more interpretive art.  "Cad" and "Strt" are beloved cousins which Wade would be happy to make part of our family.)

And Friday he came home from school with this picture of himself helping Dad make BBQ sauce.

Dad is on the bottom and Wade is joyfully leaping over the top.  I especially like the way both Wade and Dad have whiskers.*

*Note to food inspector:  this picture has no known resemblance to the way we actually process barbecue sauce.

I Am Peter

Peter had no words.

For a very long time, 30 years to be exact, he thought beautiful thoughts with no way to share them.  No one around him knew what Peter was thinking.

And then technology opened a new door for Peter.  With Facilitated Communication, Peter can now share his thoughts with the world.

For most people, words are cheap and careless and superfluous.  For Peter, they have been bought with a price.  Perhaps that is why Peter's words are priceless.  With simple elegance they create pictures in my head.  Pictures that I cannot forget.

Peter belongs to a group called The Brotherhood of the Wordless which is made up of writers and poets who are, in some way, limited in their ability to communicate.  Or, as Peter describes it:

We are without words,

but our conversation is full of wit, laced in humor

and powerful to the ears of those who are voiced

the ones whose tongues can easily roll the language off.

Come away with me to the Brotherhood?

a place where voices get in the way

and tapping is a sound of unity.

Every time I read Peter's eloquent words and see with his palette of thoughts, I know that the sparse language of the Brotherhood is to be treasured far above the excessive language of the voiced.

Will you not show me some value that I have

So I may find my own self, my own special self in nature's web?

I cannot build nations or seek fame,

but those things are not mine to do.

I love my work.  I am happy doing those things I was given to do.

If I have but one talent and use it well, is that not the best I can do?

...I cannot speak the words I feel inside;

I can only cry, a very real hurt, a very real pain.

Let my tears be as strong a call as those who shout with dignity and clarity.

I, too, have something to say.

For more of Peter's poetry, art, and books, click HERE.