"Look At Me"

"Look At Me"
monotype and screenprint

Wednesday, January 30, 2013


I've lost my voice.
Sort of.
No, I'm not sick.  I just don't know how to say what's on my mind.

Some things have happened recently that have made me re-evaluate everything that I am and all that I am trying to accomplish.  It's not necessarily bad to have your world turned upside-down now and then. It forces you to look at life from a different angle.  If you keep an open mind, you learn a lot about yourself--and others.

I'm not going to go into details about what happened.  It's not really important.  What I will say, is that it made me consider quitting my art project.  I almost stopped blogging.  I began to feel irrelevant--like there was no way I could possibly make a difference.

All I have ever wanted to do with this project is show the world how I see autism:  as something beautiful.  Yes, it's difficult and there are days I want to throw in the towel.  But there is a beautiful side too.  I am not ashamed of my son and never will be.  I think autistic kids (and adults) are amazing individuals who deserve to have their stories told.

When I started this, almost 2 years ago, Derek was completely non-verbal.  I wanted to tell his story because HE WAS NOT ABLE TO TELL IT HIMSELF.  I didn't know if he would ever be able to.  And I found other kids who were unable to tell their stories either.  Since then, Derek has made a lot of progress.  He is speaking some.  He is still unable to tell his story, but what about in a few years?  Maybe he'll actually be able to write?  What then?  And what if I'm not telling his story (and the other kids' stories) correctly?  What if, 10-15 years from now, these kids resent me for doing their portraits and wish they weren't part of this project?  After all, I'm getting permission from their PARENTS, not THEM.  They are all under age 18.  (Most of the kids are under age 7 and are too young to really understand what I'm doing.  If they are older, I TRY to make sure they know what I'm doing and I ask if they want to be involved.)

The kids in the project matter to me.  I talk to their parents regularly and follow their progress.  I cheer when they do something incredible and I cry when I find out they've had a hard day.  They are more than just a  "portrait" to me.  When I make a new piece, I put my heart and soul into it.  As Oscar Wilde said, "Every portrait that is painted with feeling is a portrait of the artist, not of the sitter."

What scares me the most is the thought that these kids will someday NOT want to be part of this project.  What if they think that as a parent, I know NOTHING about what it's like to be autistic and think that only autistics have the right to make art about autism?  I have so many questions right now.  And no answers.

I never wanted to hurt anyone with this blog or with this project.  All I wanted to do was tell our story.  Derek's story and Tyler's story and MY story.  And maybe, if I was lucky, inspire a few people and give them hope.  Having my motives questioned makes me feel sick.  I make art for a lot of reasons, but mostly for ME.  It's how I cope with life.  And why do I blog?  It helps me to write down my thoughts.  Having followers is a bonus.  It's nice to know I'm not alone on this journey.  And the comments I get help me get through the rough days.  I need this.

Despite the recent setbacks (including multiple rejections from different galleries and some comments from people who made me rethink EVERYTHING), I have decided not to quit.  In the past week, I was notified that I've been accepted into 2 gallery shows and I'm also going to be helping with a sensory based art activity for the Autism Society of Nebraska in July.  As long as a few people still believe in me, I'm not going anywhere.  (What is it they say?  "The moment you are ready to quit is usually the moment right before the miracle happens.  Don't Give Up.")  My son is beautiful, and I love to make art about him.  I hope that when Derek is older he isn't upset that I chose to make art about him.  I hope he thinks I did him justice in telling his story.  I hope all the kids do.

Maybe I'm naive, but I actually hope Derek will be proud to call me his mom...

I cling to hope a lot these days.

Friday, January 18, 2013

A Foreign Language

I've been trying to clean our house, because I'm painting the kitchen and the living room.  I am going to redo Tyler's room and Derek's room as well.  The last time I decorated their rooms was when I was pregnant with them, and well...they aren't babies anymore.  Tyler turns 7 next month and Derek is 5.  It's time.

So anyway, as I clean I keep coming across things that remind me of when Derek was little.  It's hard for me.  I remember the fear and uncertainty I felt when Derek was first diagnosed.

Derek 2 days after diagnoses.  July 17, 2009

I don't know what to do with half the stuff I find.  For instance, I found Derek's PECS board.  Do I keep it?  Or throw it away since he doesn't need it anymore.  (For those of you who don't know what PECS is, it's Pictures Exchange Communication System.  You use pictures instead of words to communicate.  We used this for a while when Derek was completely non-verbal.)  Maybe I should keep it and use it to make a schedule of daily activities?  They have one for Derek at preschool.  Although if Derek doesn't like something on his picture schedule, he goes and gets a picture from someone else's schedule and sticks it on his own.  (Yes, my boy is smart.)

Then I found a flashcard with a picture of a dog on it.  Shut the front door! (I'll come back to this.)

People still ask me how I knew Derek was autistic.  I didn't.  But he started showing signs when he was about a year old.  It's easy to see them now.  (It wasn't at the time.)  There were a lot of red flags.  He wasn't clapping, he wasn't waving, he wasn't pointing, and he wasn't saying anything.  The lack of speech didn't worry me too badly, because I figured Derek was a late talker.  But between 12 months and 18 months, Derek started doing other things that were "worrisome."  He stopped making eye contact.  He stopped responding to the sound of my voice.  He started doing repetitive things like rolling his cars and trains back and forth and watching the wheels spin.  He also started running in circles and flapping his hands.

I didn't know what autism was.  I just knew my baby was not making the progress he was supposed to.  But his pediatrician didn't seem overly concerned.  She suggested getting Derek's ears checked to make sure he was hearing properly.  So we did. We even had the sedated ABR (Auditory Brainstem Response) test, which tests the function of the hearing pathway from the ear to the brainstem.  Everything came back normal.

Derek's story is a little bit different than some.  At 18 months, Derek still hadn't spoken a single word.  That's not too unusual for people on the spectrum.  But we discovered at this time that Derek didn't understand language.  Does that make sense?  Derek did not know that the sounds coming out of my mouth meant anything.  The closest thing I can compare it to, since I'm not Derek, is when you go to a foreign country and hear the natives speak a different language.  It sounds like gibberish.  I even tested my theory.  If I said, "Bath?" to Derek, I got no response.  But if I turned the water on in the tub, he'd hear it and come running.  I tested him all the time with things I knew he liked to do, like "Go outside?" or "Tickle?" and never got a response.  The day I realized that Derek didn't know his own name, I cried my eyes out.  I was terrified. How in the world do you teach a child that words have meaning?

Most kids learn language naturally.  They hear their parents say hi and repeat it, because their parents smile and cheer them on.  Derek did not learn language naturally.  We had to teach him language word by painstaking word, through flashcards.

We started slowly with a flashcard of an apple.  For hours, Derek's therapists and I would sit with him and say "Apple" very slowly and show him the picture of the apple.  We made him put his hand on the card when we said it.  After a while, Derek finally figured it out and was able to identify an apple on command.  So then we added a picture of a banana and so-on-and-so-forth.  He had to identify flowers, cars, hats, shoes, you name it.  But we also had to teach him that the pictures transferred over to real life--that a REAL apple was also an apple--not just the picture of one.

Think about how confusing that must have been for a second.  Language is hard!  I'll give you an example.  There are lots of breeds of dogs, yet we were asking Derek to recognize that even though they looked different, a German Shepherd and a Chihuahua were both "Dogs."  (No, we did not try to teach him all the breeds of dogs.  He was 3, and he thought a horse and a dog looked the same.)

As you can imagine, it was a challenge.  No, I'll take that back--it was exhausting and frustrating and seemed like the most impossible task in the world.  I cried myself to sleep a lot back then.

So when I found the flashcard the other day, I got chills. I realized just how far my child has really come.  I'm sure people get tired of me bragging about Derek's new words--after all, he's 5 years old and should have been saying most of these words 3 years ago.  But they don't know his story.  They don't know what he had to do to learn English.  That Derek understands language (to some extent) seems miraculous to me.  The fact that he is SPEAKING????  Blows my mind.

The other day when we were watching a movie, Derek saw a lion, a tiger, and a giraffe.  As they came on the tv screen, he said, "lion," "tiger," and "giraffe."  I doubt that Derek remembers how hard he had to work to learn those animals by name.  But I remember.  And I know he is capable of ANYTHING.

Wednesday, January 16, 2013

Say What???

My kids and I have been sick for 3 days.  Like, extremely sick.  Influenza A hit our house like a tornado.  It hit Derek first, then Tyler, then me.  All of us have high fevers, a nasty cough, stuffed up noses, sore throats, you name it.

Derek manages a tiny smile, despite his fever.

So today, Tyler woke up with pink eye, on top of everything else.  (The kid rubs his eyes a lot, so I'm guessing snot got in his eyes.)

I called the doctor, and of course I have to bring him in.  (They can't just call a prescription in, it's against policy.)  So I muster every ounce of energy I have in me, bundle both kids up, and head for the car.

As we are driving through town, Derek sees the local grocery store.  He says quietly, "Donut?"

The kid hasn't eaten ANYTHING in 2 days.  So I'm shocked.  I ask him, "Do you want a donut, babe?"

Derek:  "Yes."

Of course, Tyler wants one too. So I pull into a parking space to get my kids some donuts.  It's 11:45 a.m.  I'm standing in the check-out, with 2 donuts and some donut holes in my hand, and a lady says to me, "Well, that's a nutritious lunch." and she gives me a L-O-O-K.

Ummm, ok.  Say what?  I was already crabby from being sick.  Then someone has to make a comment like that???

A)  I don't really care about nutrition at this point.  I'm just over-joyed that my kid wants to eat again.  If he wanted potato chips, I probably would have gotten those for him too.
B)  If she was referring to ME eating the donuts--I'm not exactly overweight.  If anything I could stand to gain a few pounds.  (Stress is the best diet EVER.)
C)  Mind your own business.  Same goes for when Derek has a meltdown in a store and people criticize or try to give parenting advice.  Why do people feel the need to say whatever is on their mind?  Especially if they don't know the back-story?  Whatever happened to the Golden Rule, "If you don't have anything nice to say, don't say anything at all."

Maybe I am taking all of this too personally.  After all, I am sick.  Or maybe I'm just tired of people being so judgmental.  I would never dream of saying the things I've heard to strangers.

Anyway, we made it to the doctor.  Tyler got his eye-drops.  We got home in one piece and we are now bundled up in bed again.

Just another day in paradise.

Sunday, January 13, 2013

The Dream

Have you ever had a dream that was so real, so vivid that when you woke up you weren't sure if it had really happened or not?

Last night I had a dream that my sons were playing.  Tyler and Derek were setting up a Star Wars battle on the kitchen table with all of their figures.  They weren't fighting over them--they were TALKING.  And by talking, I mean REALLY TALKING.  They were discussing who would win in a fight--Darth Vader, Darth Maul, or the Emperor.  Derek did not have autism.  He was a typically developing child.  I'd been given a tiny glimpse at what life would have been like...IF my child was not on the spectrum.

I continued to watch them, as if from behind a sheet of glass.  A blonde-haired, blue-eyed child and a brown-haired, brown-eyed child were standing next to each other.  They were almost the same size.  They were more than brothers, they were friends.  Laughter erupted now and then and words poured out of their mouths without any effort.   It was beautiful...

Then Derek saw me.  He smiled and said, "Mommy!" the way he normally does.  He ran over and gave me a hug.  He looked at me and said clearly, "I love you."  He didn't pronounce it, "I ov oo."  I was so stunned I couldn't even respond.  Then he ran off giggling, and I woke up.

Did it hurt to wake up and return to my real life?  No.

Although my life is different than I expected it to be, it's all I know.  And the first thing Derek did this morning was envelop me in a bear hug.  He didn't say I love you or good morning or even hi...but he smiled.  I knew he was happy to see me.

What do I make of my dream?  Was it a glimpse at the life I'm missing?  No.  I'm not "MISSING" anything.  It was just a dream. My life is full of laughter and love.  Would I like it if my kids played together more often and could talk to each other without any trouble?  You bet.  But I believe this dream is within reach.  It may not happen tomorrow, or even this year...but just last night the boys were acting out a scene from Star Wars together and giggling hysterically.  Derek couldn't say the lines, but he was definitely able to pretend to fall over dead, and that's all Tyler wanted him to do.  It worked perfectly.

Sometimes words (and dreams) are over-rated.  My kids are pretty amazing.

Friday, January 11, 2013


I wasn't going to write about this. 

I thought I was done. 

But this morning Derek woke up vomiting again.  He hasn't had an episode in over a month.  I thought we finally had his vomiting under control.  Amitriptyline was doing the trick...

Yet Derek retched uncontrollably for four hours this morning.  So hard and so long, that by the end, he couldn't even lift himself off the floor.  I was holding him, in my arms, over the toilet.  He was completely limp.

30 minutes later, I heard a strange sound.  My son was screaming.  And it was a scream unlike anything I had ever heard.  It was a blood-curdling, ear-splitting scream of pain.  Derek was holding the back of his head and rocking back and forth.  Vomit was spewing out of his NOSE---not his mouth. 

Derek is on the bathroom floor...

I panicked. 

What in the world was happening????? 

I called his doctor. 

This was NOT normal...was it???

The nurse that answered the phone agreed and said the doctor would call me back immediately. 

While I was waiting, Derek had a seizure. 

He hadn't had his anti-seizure meds yet, because I hadn't been able to get him to drink anything. 

It was one of the longest absence seizures he's had yet.  Derek was completely unresponsive, for at least 45econds.  And when he came out of it, he started shivering and was disoriented. 

There is only one word that comes to mind for how I felt at that moment.


The doctor called me back shortly after, and reassured me that my son was ok.  But he said that if I couldn't get Derek to drink anything I'd have to take him to the ER for dehydration.  When I asked about Derek's screaming and the pain, he said Derek probably had a migraine, one of the triggers for Cyclic Vomiting Syndrome. 

The doctor called in a prescription for Zofran to help me get Derek to stop vomiting. 

Derek's "spell" has passed.  He's drinking gatorade and playing with trains as though nothing ever happened.  My fear is beginning to subside. 

I have only one good thing to say about fear.  It can make you realize just how much you REALLY love a person.  In the midst of my mini-crisis today, I was sobbing.  I was ready to drive to the ER in my pajamas--hair and teeth unbrushed, socks mismatched, etc. When it comes down to the people we love, NOTHING MATTERS except THEM.  Period.  My son is worth the sleepless nights I've had, the puke-stained towels I've washed, the ever-increasing number of grey hairs and wrinkles appearing on my head...all of it.  Life is scary sometimes, yes.  But what is the alternative?  I'd rather be afraid of losing someone than not love anyone at all.

Wednesday, January 9, 2013

"It's Not Fair!"--(Life with the Other Child)

I don't write about my typically developing child very much.  When I made this blog, I originally intended it to be about my progress with the art project.  Then, here and there I threw in stories about my autistic kid, because, let's face it, he's extremely entertaining.  (I also got bored in between pieces and side-tracked by medical problems).  So the blog became more about life with autism, and now and then I get an art piece done, I show my work and I get to tell stories about that as well.

But I have a "normal" son as well as an autistic son.  And he's amazing.  He's also been on my mind a lot.

Tyler is a mini-adult.  He's had to grow up fast.  I always get comments from others that he "talks like a grown-up."  He uses big words and is a very serious child.  In many ways, he acts older than his age.  Yet, he still likes me to do things for him, like walk him into school in the morning and make him sandwiches.  I think it's his way of getting attention.

Derek was diagnosed at the age of 20 months, which means that Tyler was 3.  Life turned upside-down for all of us, and Tyler had to deal with very adult issues at a young age.  We tried to shelter him, but he knew that things had changed.  Suddenly, Derek had people coming to work with him around the clock and was getting extra attention.  Mommy was crying a lot.  And Tyler?  Well, Tyler became jealous and angry.  We had to take him to a therapist for a while to help him through his issues.  Completely understandable.  I know how hard everything was for me.  I can't imagine how hard it was for a 3 year old.

The other day, Derek had a bowl of popcorn for supper, because he's...well, Derek.  He still only eats about 10 things.  My husband, Tyler, and I had chicken and vegetables.  A "normal" meal.  Tyler said my least favorite words in the world.  "It's not fair."

We had a little talk.  I asked him, "Is it fair that Derek has had to be in therapy for 3 years?  No.  Is it fair that Derek can't eat things like pizza and cheeseburgers and candy bars?  No.  Is it fair that Derek's had to go to doctor appointments right and left the past few months?  No."

I went on to explain to Tyler that LIFE IS NOT FAIR.  It seems like it should be, but it's not--and the sooner he accepts that, the happier he'll be.  I also told him that I didn't want to hear those words anymore, especially in this house.  I reminded him of several special treats I've gotten just for him and several things we've done lately, just the two of us.  I do everything I can to make sure Tyler knows that he is loved and special.  Even if it's just something little.

For instance, about a month ago, I left a note on Tyler's pillow saying "I love you."  He put in a special cup he has and reads it when he's feeling down.

I also help him with his spelling--one of the few things he has trouble with in school.  I teach him tricks to help him.  I drew him a picture to help him learn how to spell the word "does."  He was spelling it D O S E.  I told him to imagine a snake as an "S" at the end, ready to gobble up the other letters.  Then I drew it on a piece of paper for him.  He laughed and told me I was weird.  I said, "Maybe, but do you think it will help you remember how to spell the word?"  :)

Tyler said, "When Derek can talk better and is learning to spell, let's teach him the snake trick."

You bet, buddy.

This little boy, who is not quite 7 years old, has a heart of gold.  We were talking about marriage and children the other day, because my brother just had twins.  I asked Tyler if he planned to get married someday.  He said yes.  I asked if there was someone he wanted to marry--the girl next door maybe?  Or someone in his class?  His response?  "Someone like you."

My cup runneth over.

Friday, January 4, 2013

Autism Devotion: Speaking to Animals

"An animal's eyes have the power to speak a great language." ~ Martin Buber
Derek in 2010 at the NE State Fair petting zoo.
This my second piece for the "Autism Devotion" series that my friends and I are involved with.  Yesterday I wrote about Derek's love of music.  Today, I'm writing about animals...
I remember being in the car one day when Derek was two years old.  He was still completely non-verbal at that point.  We drove by some cows and some horses and I pointed them out to Derek.  (I was still desperately trying to get him to interact with me.)  "Look, Derek!  Cows!  Horses!  What do they say?"  Derek acted like he hadn't heard a word I had said.  He just gazed out the window.  I couldn't help but think, "What child doesn't like animals?"  To this day, I have no idea if Derek saw the animals or not.  He was in his own little world.  Tyler, who was four, saved the day by chiming in, "Moooo!  Neigh!"  I smiled back at Tyler, but I had to wipe tears from my eyes.  I LOVED moments like these with Tyler.  I'd loved them since he first started speaking.  One of the best parts about being a parent is when children start recognizing animals and shapes and colors and get excited to see things and share them with you.  I didn't know if Derek would ever be able to do that, and it made me sad.  I wasn't sure if he even knew the difference between a horse and a cow.  All he seemed interested in was wheels and things that spun. 
Over the last few years, things have slowly changed.  Now, Derek LOVES animals.  And for some reason I can't explain, they seem to understand that he is "different."  I catch Derek looking into the eyes of animals, and I swear he is communicating with them--without saying a single word. 

Watching fish at the dentist

When Derek's aunt got a dog, Derek thought it was the best thing ever.  He tried to share his ball with her.  (And this is a child who DOES NOT SHARE!!!!)  He also snuggled with her on the dog bed.  Ginger (the boxer) has always been incredibly patient with Derek and even lets him hug her and pull her tail.  And now that he has finally started talking? Derek calls her "Puppy."  If I ask, "What's a puppy say?"  He replies, "Ooof!"  

Playing with Ginger
It may be 3 years later than I expected, but my son is finally excited to share his discoveries with me.  In the car he says "Cow!  Moo!  Horsie!  Neigh!"  At the dentist, he watches the fish swim in the aquariam and yells "Fish!" at the top of his lungs.  (Think I care if I get strange looks?  NOPE.)  And at preschool when they had a chicken for a while, Derek sat outside the cage and watched it.  Then when he got home he told me "Chicken bock bock!"
Talking to the chicken at preschool
This Christmas was the real surprise.  Derek decided that the dog and cats at grandma's house belonged inside.  Every time they came to the sliding glass door, Derek let them in (even though they are outside animals).  If someone put them back outside, Derek cried...and then let the animals back in when nobody was paying attention.  Derek wanted the "key cat" near him at all times and lavished him with love.  The two were inseparable.  I have never seen Derek act that way about an animal before, and I've never seen an outdoor cat so in love with a little boy. 
If my husband didn't have allergies, guess what I'd be getting my son? 
I think more trips to the zoo are definitely in the future.  
Plotting to take over the world with Grandma's "key cat."
Petting "key cat."

Thursday, January 3, 2013

Autism Devotion: Ode to Joy

This month I am joining a few blogger friends and writing about "Autism Devotion."  I had trouble deciding what to write about.  Why?  Because Derek is passionate about so many different things. 

Derek loves to sing.  He always has.  He started singing before he could speak.  When words failed him, he could still express joy by opening his mouth and letting happy sounds come out.  He didn't need words.  He could just sing. 

On August 27, 2011 I caught him on video singing in the shower.  I didn't recognize a single word that came out of his mouth.  But the sound of HAPPINESS in his voice is unmistakable.  If you watch the video, you will see that singing is singing in ANY language, and it is more than beautiful...  

Derek Singing in the Shower

Over the past few years, Derek's love of music has grown.  I believe that teaching Derek songs is the main reason he has learned to speak.  He picks up tunes and memorizes songs easily--even songs on the radio.  He loves Rihanna's song "Diamonds" and if you sing "Shine bright like a diamond" he'll repeat the lyric and add "in the sky" at the end.  He also likes the song "Diamond Eyes" by Shinedown (do you sense a theme?)  If he hears one of them on the radio he says "One more time" when the song ends and flaps his hands.  He also turns paint cans and pots into drum sets.  He pretends that wooden puzzle pieces of guitars are REAL and strums them while he sings.  He even attempts to play a toy harmonica. 

Music speaks to Derek in ways that nothing else has.  At night, I sing to Derek to calm him down before he falls asleep.  Just a few weeks ago, when I started singing "Twinkle Twinkle," all of a sudden I heard Derek's little voice join in.  In the past, if I paused while singing, Derek might fill in a missing word here or there.  But never before had he sang WITH me, word for word, during an entire song.  It was so amazing that I didn't want the moment to end.  Fighting tears, I continued on and we sang "Jingle Bells" together, before he said "Done singing" and rolled over to go to sleep. 

Then right before Christmas, Derek started watching Muppet videos on Youtube.  There is one of the Muppet chickens singing "Joy to the World."  Derek loved it.  There is also one of Beaker singing "Ode to Joy."  Well, technically Beaker sings "Meee meee mee" over and over again to the tune of Ode to Joy.  So that's what Derek does.  But how many 5 year olds know a song by Beethoven?  And when Derek sings, his voice, and his song really, truly are an ode to joy...

Beaker singing "Ode to Joy"