No Accidents

Artist Judith Scott, was born deaf, mute, and with Down Syndrome

When I was in grad school, I did a huge paper on something called "Outsider Art."  Unlike Impressionism and Cubism, Outsider Art is rarely mentioned in art classes.  I stumbled upon it by accident.  I was searching for connections between artists and mental illness.  You know, like how Van Gogh cut off his ear and was supposedly bipolar.  Stuff like that.  I was intrigued and wondered how common it really was for artists to be "crazy."

This is what I found.  In the early 1900s, there were a few people who actually collected the artwork of psychiatric patients.  A lot of insane-asylum inmates created art--and I'm not talking doodles.  I'm talking REAL ART.  Beautiful drawings and paintings and sculptures that I would hang in my house TODAY.

The term "Outsider Art" describes art created outside the boundaries of official cultural.  Art critic Roger Cardinal coined the phrase.  Outsider Art applies to anyone who is self-taught, or has not been influenced by mainstream art.  This includes insane-asylum inmates and children.  Often, Outsider Art illustrates extreme mental states, unconventional ideas, or elaborate fantasy worlds.

In 1922, Dr. Hans Prinzhorn in Germany published the first serious study of psychiatric works, Bildnerei der Geisteskranken (The Artistry of the Insane), after collecting several thousand examples from European institutions.  The book and the collection received considerable attention from avant garde artists of the time. Artists such as Franz Marc, Paul Klee, Max Ernst, and Jean Dubuffet were intrigued that art could be produced without any influence from the outside world, yet still be so original and compelling.

At the same time, Dr. Walter Morgenthaler published a study of a single psychiatric patient's work.  Adolph Wolfli, a patient at Waldau Asylum in Switzerland, produced hundreds of huge drawings in his small cell, depicting a life much different than the one he was really living.  

Adolf Wölfli, General View of the Island Neveranger (detail), 1911

French artist Jean DuBuffet, along with Andre Breton, formed the Compagnie de l'Art Brut in 1948.  By "Art Brut," DuBuffet meant art that was untouched by culture - "an art that was at its most pure, its most powerful and its most meaningful. It was an art produced entirely for individual satisfaction and inner need with no regard to exhibition, fame or monetary reward."  These artists created art for one reason and one reason alone--for themselves.

Kiyoshi Yamashita was a Japanese graphic artist who was considered an autistic savant.

So, why am I telling you all of this?  Because for a long time, I wondered why I was given Derek.  I went to the University of Nebraska at Kearney for my bachelor's degree.  (It used to be Kearney State Teacher's College.)  It is a school known for its teaching program.  And several of my closest friends received special education endorsements.  

When Derek was first diagnosed, I was confused.  I wondered why I, of all people, had been given a child with special needs.  I'd had no training.  I was an artist!  All of my friends who had gone to school to teach and had gotten special needs endorsements had typical kids.  THEY were the ones who knew how to deal with a child who couldn't speak.  They were the ones who had extra patience and wanted to work with kids like my son.  They'd chosen to do so!  I didn't think I could do it.  I was scared I would fail my son.

So why, WHY was Derek given to me?  

It wasn't until recently that I remembered writing my paper about Outsider Art.

It was an independent study class.  I worked out the requirements of the class with the head of the psychology department.

My entire grade in the class would depend on the one paper.

So I went to the library.  I checked out books.  I sent away to other college libraries for their books.  I googled.  And googled.  And googled...

I studied mental disorders.  I read about inmates in mental institutions.  I read about artists that ended up in mental institutions.  I looked at the art these people produced.  I read about people with schizophrenia, and Down Syndrome, and autism, and bipolar disorder.  All of them were put in institutions for most of their lives.  Quite a few turned to art as a way to express themselves.  I was fascinated by their stories.

No, I wasn't trained to have a child with special needs.  Not many of us are.  But I find it kind of interesting that I spent an entire semester writing about people who were unable to communicate through anything but their artwork.

I also find it sad that these people were locked up.  And I wonder how many of them, if they'd received the help that is available today, could have lead productive lives.  So many of them were mute--and that automatically meant "dumb" back then.  It's pretty obvious, looking at the artwork, that they had quite a bit to say.

Did I mention I got an A in the class?  I also learned more in that semester than I did in any of my other art history classes.

Maybe there are no accidents.

After all, I'm an artist.  I communicate through artwork too.
Autistic people are beautiful and awesome.  I plan on telling the world.

Sometimes a Picture is More Than a Picture

Tyler's Preschool Graduation

See this picture?  Cute, isn't it?  This was taken two years ago, when my oldest son graduated from preschool.  The picture (one of my favorites) has a place of honor on a shelf.  When I took the picture, I didn't think much about it.  I just whipped out my camera, focused, and *snap*.  Done.  Easy-peasy.

Tyler and Derek attended different preschools.  Tyler attended a preschool right up the street.  It was at a church twice a week for a couple of hours.  He LOVED it.  We were able to walk there and the best part about it was that almost every kid in his preschool ended up being in his kindergarten class.  

Derek attends a special education preschool in another town.  He gets taken by bus to a school called UP (Unlimited Possibilities) for Kids.  It's a great school--it's a mix of kids with special needs and typically developing kids.  Derek also loves his school.  He goes 4 days a week from 8:30 to 11:30.  

Derek's preschool doesn't have a graduation ceremony like Tyler's did.  

For some odd reason, I want a picture of Derek in a cap and gown, to proudly display on my shelf, next to the one of Tyler.  

So I talked to Tyler's old preschool teacher, and she is willing to let me borrow a cap and gown.

Here is the kicker:  getting a picture of Derek in a cap and gown is NOT going to be easy-peasy.  It is going to take weeks of work.  Just like everything else with Derek, we are going to have to make a program, and ease him into it.  His therapists and I are going to have to start with the cap, and have him wear it for just a few seconds at a time, until he can tolerate having it on his head for a good amount of time.  Then we'll have to do the same with the gown.  THEN we'll have to work on having him wear both at the SAME time.  And then I'll have to try to get just ONE decent picture.  

My son has had to do these programs for EVERYTHING.  He's had to do them to learn to wear his medical bracelet.  He's had to do them to learn to wear gloves.  We got him to try a few new foods this way.  And so on and so forth.

So, you're probably asking:  Why are you making your son do all of this, just for a picture?  Well, it is more than a picture to me.  Even though his school doesn't have a ceremony, Derek finishes preschool this spring.  He is graduating.  He starts kindergarten in the fall.  A picture of him in a cap and gown represents everything my son has learned in the past 3 years.  It represents everything he has overcome!   The hours upon hours of therapy, the struggle to communicate, learning to clap and point and wave and jump and OH!  I could go on and on!

They say a picture is worth a thousand words.  

My son doesn't have a thousand words yet.  But he's getting there.  

This picture is worth more than words to me. 

There is an empty place on my shelf, waiting patiently. 

Wish me luck.   

Angels Among Us?

Last night I watched the movie The Green Mile.

The boys were in the living room playing on the Ipad with their dad.  I actually had a few minutes of alone time in the bedroom.  

Then Tyler walked in--right at the part where John Coffey (just like the drink, only not spelled the same) brings the mouse (Mr. Jengles) back to life.

Tyler asked me how he'd done that.  I explained that John Coffey was like an angel.  He was one of God's people--sent to earth to help people.  He was a healer.

Tyler asked me if I'd ever met an angel.

I paused.  I said, "I'm not sure, but sometimes I think Derek is an angel."

He asked me, "Why?"

I said, "Well, Tyler, he's changed a lot of people's lives.  Especially mine.  He's made me a better person.  But more than that, he brings joy wherever he goes.  He communicates without words.  He randomly stops whatever he's doing to say "I love you."  He also inspires me and gives me hope, because he doesn't know how to hate.  And he never, ever gives up."

Tyler looked at me for a long, long moment.  Then he said, "I think so too.  He gives really good bear hugs."

It's Just Brain Damage, No Big Deal

Derek had a neurology appointment today at Children's Hospital in Omaha.  It was his first since his MRI.  I had a billion questions for the neurologist.  I wonder if she's ever seen the likes of me before...

My son's MRI was back in December.  (If you want to read about it, just click on the word.)  The MRI revealed that my son had a "brain injury."  The neurologist called me to tell me the details, but I was so shocked that I didn't think to ask any questions.  I also learned that week that my son was having seizures (his EEG showed sharp spikes) and although I was not as surprised by this news, it was still a stressful week.

I had to get up at 5 a.m. this morning in order to get out the door by 6:45.  It was a 3 hour drive to Omaha--and it was a looooooong drive with both boys.  Derek's appointment was at 10:30, but I had to drop Tyler off with my parents in Omaha before going to the appointment.  (Tyler was sick--he came home from school with a fever yesterday and foiled all my plans!)

These were some of the BIG questions I had for the neurologist:
1. Is a brain injury the same as brain damage?
2. Where is the brain injury located?
3. Can you tell when or how it happened?
4. What does it effect--speech?  memory?  social skills?
5. Is it causing the seizures?  Or are the seizures causing the injury?
6. Is it possible the injury caused his autism?


This is what she told me.
1. Yes, a brain injury is the same as brain damage.  
2. His left frontal lobe is the area that is injured.  
3. There is no way to tell exactly when or how it happened.  It could have been caused by a blood clot in the placenta, or it could have been caused by a fall.  It is not your fault--you didn't do anything wrong.  
4. It can effect a lot of things--there are many different pathways through the brain. 
5.  Hard to tell--which came first?  The chicken or the egg?  All we can do now is treat the seizures to prevent further injury.
6.  Yes, it's entirely possible.  But since we don't know when it happened, it might NOT be the cause.   

I keep reminding myself that nothing has really changed.  Derek is still the exact same child he was yesterday.  Now I just have more information on how to help him reach his full potential.  

Actually, it just makes my son seem all the more inspirational to me.

Derek is singing songs at preschool.
He's learning to write his own name.
He's counting to 11 by himself.
He's asking other kids if they want to play with him.

This kid of mine is freaking amazing...and he always will be.

Adopting a Guinea Pig

My boys walking into the Nebraska Humane Society

I think I've mentioned once or twice that Derek loves animals.  For a while now, I've been wanting to get him a pet--but my husband is allergic to cats and I honestly don't think we have the time (or money) for a dog.  However, I've had guinea pigs most of my life.  When Tyler was just born, I actually had SEVEN.  (Yes, I said SEVEN.  One of the pigs I got at Petco was supposed to be a girl and turned out to be a boy...there were babies.  Lots and lots of babies.)

Anyway, we haven't had them for a while.  But I've kept all of the supplies.  I had two empty cages downstairs just sitting there, as well as empty food dishes and leftover bedding.  I decided to see if there was a guinea pig that needed rescuing at the Humane Society.  I didn't want to get one from a pet store again.  I've had bad luck with pet stores in the past--one of the pigs I got a few years ago was very sick and after spending hundreds of dollars on it at the vet, the poor thing still died.  Another was infested with mites and we had to wash him in a bath that smelled like rotten eggs to kill all of them (nasty).  I knew that the Humane Society has a vet check their animals and I'd be getting one who was older, but at least healthy.  Plus, I'd be saving a guinea pig's life!  

So, on March 1 we marched into the Nebraska Humane Society, knowing there was a guinea pig named "Bob" who had been there since mid-February.  We had high hopes that he'd be coming home with us.  Well, Tyler and I were excited anyway.  Derek didn't really know what was going on.  He was excited to see all of the different animals though.  Besides cats and dogs, there were gerbils, mice, birds, rabbits, and there was even a snake!

Derek checking out the snake.

The boys looking at the birds.  Derek did a happy dance when he saw them.  :)

Turtles swimming in a cage.

Tyler excited to adopt "Bob" (we renamed him QT)!

About an hour later, we walked out of there with our new pet.  As you can see from the pictures below, my boys LOVE him.  Derek gets a big smile on his face whenever he sees QT and immediately wants to pet and feed him.  He'll hand him a carrot and say, "Eat it Squeaky!"  He doesn't remember our old guinea pigs, but Tyler does.  And Tyler is Oh, So Happy to have a new one.  Especially a friendly one that squeaks and purrs.  

Petting QT

I think they call this LOVE.

This pig is full of personality.  I've had a LOT of guinea pigs in my life (Piggy, Fuzzy, Snowball,  Pepe, Tweek, Puddin', Rascall, Patches, Mu, Pip, and JR.).  QT is only the 2nd one I've known that sits on top of his house for fun.  :)

A Midwinter Night's Dream

4:43 a.m.  I wake up from the usual nightmare:  Derek is drowning and no matter how hard or how fast I swim, I cannot reach him.

I roll over and gaze at the 5 year old boy sleeping beside me.

Moonlight falls on his face through an opening in the curtain.

He looks almost angelic in the blue light.

I stop and stare, trying to drink in the moment for all eternity.

Long lashes flutter on his smooth cheeks.

His lips move as he mumbles a little.

I watch his chest slowly rise and fall and am reminded of the hundreds of times I checked to make sure he was breathing as an infant.

His hair, curling softly, smells faintly of the lavender scented baby wash I used the evening before.

His face is losing its baby fat, and he's looking more and more like a little boy.

His hands and feet remind me of a puppy's--they are just a little bit too big for his body.

My child is growing, right before my very eyes.

I wish, for a brief moment, that I could stop time.

Derek's MDT is coming up.  It has been more than 3 years since the official autism diagnosis.  I know that nothing has technically changed.  His teacher told me on the phone that they were "confident" that he would still qualify for autism services.  A lot of people will be at this MDT.  The school plans on doing neurological and psychological testing, as well as an IQ test.  Speech and OT will be there as well.

These tests don't matter to me.  It no longer hurts me to see how far behind his peers my son really is.  Standardized tests don't reflect the important things, and they never will.

Tests don't show how much my son has overcome.
Nor do they show his capacity for learning.
Tests don't reflect determination, patience, or compassion--qualities I know my son has in abundance.

I continue to watch him sleep.  He stirs and calls out, "Mommy?"
I put my hand on his arm and say, "Mommy's here."
He instantly stills and his breathing quiets.
I wonder what he dreams about--and if he speaks without difficulty in his dreams.
I wonder what the future holds for my beautiful child.

No.  I will not worry about tomorrow.  My son has everything he needs right now; a roof over his head, food to eat, and a family that loves and believes in him.

Dream big, my son.
Anything is possible...