"Look At Me"

"Look At Me"
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Thursday, March 29, 2012

Oh Poop (The Walmart Story)

I decided today would be the PERFECT day to cheer you up and tell you about a Walmart trip I had about a year and a half ago.  :)  I swore up and down I wouldn't tell people.  But I changed my mind.  Be nice--this is BY FAR the most embarrassing thing that has ever happened to me.

On that fateful day, I went to Walmart.  I shopped with both kids strapped into their little seats at the front of the cart.  Tyler was 4, Derek was 2.5 at the time.  I filled up the cart with groceries.  Derek was fine...as long as we kept moving.  (For those of you who are new to my blog, my youngest son is autistic and still considered nonverbal.)  He liked to watch the wheels of the cart spin.  If we stopped the cart, he started screaming--so I tried to keep the cart in motion. 

All of a sudden I heard the words you never want to hear in the middle of a shopping trip.  Tyler said, "I have to go to the bathroom."  Oh, no.  I took the boys to the back of the store, and wouldn't you know it?  The ladies room was closed for cleaning.  Tyler, still new at the whole Potty Training thing, informed me, "Mom, I have to go poop."  I said, "Tyler, you are going to have to go in the Men's room alone.  I can't go in with you.  I have to stay out here with Derek and the cart."  Tyler, looking a little bit frightened, went in. 

At this point, Derek started screaming because the cart was not moving.  Everyone who walked by stared at us.  No big deal; I was used to it.  But then Tyler came to the bathroom door with his pants around his ankles saying he needed help wiping.  OMG.  Mortification was starting to set in.  I told him to get some toilet paper or paper towels--ANYTHING.  He got some and returned.  A guy came out of the men's restroom, laughing and saying, "Ma'am, you can just come in--the restroom is empty."  I explained, "No, I can't.  I have my other son and an entire cart full of stuff."  Everyone was staring by now.  I helped Tyler wipe and quickly yanked up his pants.  In the process, Tyler bumped his head against the metal latch where the door closes.  He screamed "Mommy, you hurt me!!!"

Now people were really staring.  Derek was screaming.
Tyler was crying.
And blood was beginning to trickle down Tyler's face. 

I'm pretty sure I was white as a ghost.  I pressed a paper towel to Tyler's face, grabbed his hand, plopped Derek on my hip, and promptly ditched my entire cart of groceries.  Yep. I'm one of those people.  I got out of Walmart in record time--before they could call child services on me. 

And that, my friends, is why I like to shop alone.  Seriously, it's like a vacation.

Friday, March 23, 2012

Code Brown

Ok, I've had a few days to step away and process the horror of what I will call "The Incident".  I know some people deal with this on a regular basis, but it has been at least a year for me.  I feel pretty fortunate (most of the time).  Yes, I have my share of difficulties.  But for the most part, Derek is potty trained.  He has accidents now and then (especially when there is a change in routine or he is scared) and he still wears diapers at night...but my child is not a poop smearer.  Normally.

When Derek was younger, he used to poop in the tub regularly.  I swear, he'd wait until he was in the tub to go, just so he could play with it.  He'd paint the tub walls.  I was, of course, disgusted.  But as soon as we got him potty trained, it stopped. 

Then low and behold, on Wednesday of this week, the "incident" occurred.  Derek has become sneaky with going to the bathroom.  He doesn't like to be wiped.  So he'll sneak to the bathroom, go, and then quickly pull his pants up.  A lot of times, this leaves a little bit of a mess in his underwear-- not to mention diaper rash.  On Wednesday, it must have left a BIG mess.  I found my son with one hand in his pants, the other covered in poo.  His hair had poop in it and the carpet had been smeared.  So had his face.  Uh-oh.  CODE BROWN.  I quickly threw my son in the tub and cleaned the living room top to bottom.  I was horrified beyond words.

I know that a lot of autism parents argue about whether or not autism should be cured.  I am one of the ones who think my son is wonderful the way he is. I have accepted his differences and embrace everything about him.  Except this.  If I could change ONE SINGLE THING, I would eliminate, for all autism parents, the fascination their children have with feces.   I cannot for the life of me get my child to eat spaghetti or pizza or so many other wonderful things, yet he will smear poop on his face?  There is something wrong with this picture.  And I know, personally, two other children who do this too. 

I had a doctor's appointment the next day.  I sat in the waiting room and watched a little girl about Derek's age playing.  She was a "typical" child.  She talked with her mother and played with her sister, laughing and smiling and sitting in a chair.  I thought about what Derek would be doing if he were here.  Running back and forth perhaps?  Definitely not sitting.  If he WERE sitting, he'd be on the floor (more likely he'd be LAYING on the floor, rolling his cars).  He would not be talking.  No way.  I had that familiar "smack-in-the-face" feeling.  On a day to day basis, I don't think about how behind my child is compared to his peers.  It's only when I see other children his age...and on weeks when my child smears poop.

I will not let this get me down.  He is making progress.  I will cling to that.  It was just one day, after all...right?

Wednesday, March 21, 2012

Butter on Bread

Have you ever tried to spread really cold butter (not margarine, but REAL butter) on bread?  It doesn't work very well.  It doesn't spread smoothly.  It either stays lumpy and you have to use a lot of it, or you end up tearing the bread to shreds.

Well, folks...that is EXACTLY HOW I FEEL RIGHT NOW.  Maybe that's a bad analogy, but that's all I can think of.  I am trying to be too many things to too many people and it's not working. 

Yesterday, my oldest son told me that he hates me and doesn't want to live with me anymore.  Yeah, I know.  All kids say that.  But it still stings.  Especially because I do EVERYTHING IN MY POWER TO MAKE THIS CHILD FEEL LOVED.  It's not enough.  It's never enough.  He has been extremely needy since day one and unless I am giving him constant attention, he feels slighted.  When your OTHER child is autistic?  This happens a lot.  I'll give you an example.  His kindergarten class is having a reading contest.  For every 10 books they read, they get a stripe on a Dr. Seuss hat in the classroom with their name on it.  Tyler, competitive child that he is, is determined to get the most stripes.  He gets a free Dr. Seuss book if he wins.  SOOOO, I have been reading 10 books a day to my child for the entire month of March.  That's a lot of reading.  A lot of quality time...on top of our normal day-to-day things.  Is it enough to prevent the "I hate you" speech?  Nope. 

Then, of course, is the challenge to be a wife, a friend, an artist, and a maid (I fail considerably at the last one).  I have an art show coming up in May about this very thing.  The struggle to balance (juggle?) it all.  So it has been on my mind a lot.  I feel like butter on bread.  I'm either spread too thin, ruining everything I touch, or I get stuck in one spot and disappoint everyone else...

Sunday, March 18, 2012

What Language Do You Speak?

I spent most of Friday morning making doctors appointments.  PT, OT, you know the drill.  One of the appointments was for Tyler--his 6 year well-child check.  We are switching pediatricians, so I had to answer a barrage of questions.  We are switching to a "research hospital" in Omaha, NE called Boystown Pediatrics.  Because it is a research hospital, they asked me questions like what ethnicity my son is.  They also asked me, "What is the primary language spoken in your house."  I was silent a moment, then I quietly answered, "English."

When I hung up the phone, I sat down at the table and realized my hands were shaking.  The first thing that crossed my mind when the lady on the phone asked the question was, "We speak DEREK."  It's not English, it's not Spanish, it's not sign-language...it's a language of love.  For the most part, the only people that can understand "Derek-speak" or "Derek-babble" as we call it, are the people closest to my son--his family, his ABA therapists, and his pre-school teachers.  Sure, more and more of what Derek says is becoming distinguishable.  But a LOT of his words and phrases still sound like gibberish. I don't understand half of what comes out of Derek's mouth.  And the things I DO recognize, I only recognize because I've heard them so many times in context.  I'll give you some examples:

Milk       Gook
Drink     Gink, Unk, or Dink (depends on the day) 
Dragon  Traten
Night-Night   Die-Die
Popcorn     Paco
Water     Wa-er
Tyler      Dido
Mama    Baba
All done  Ada
All better  A bear
Help me  Abby

For some things, Derek doesn't attempt to speak at all.  He just points.  Or he takes my hand and puts it on top of something and tries to communicate that way.  Or if he's being REALLY lazy, when he wants a drink he does this thing where he makes a fishy mouth and kind of smacks his lips together over and over.  Over the years I've come to understand that's his way of telling me he's thirsty.  I always tell him, "Use your words Derek.  What do you want?  A drink?"  I won't get him one unless he says it. 

Derek has been speaking more and more.  This past year has been incredible.  All of those words/phrases above are new.  He was completely non-verbal for the first 2-2.5 years of his life.  He didn't really start trying to communicate with his voice until he was 3.  We tried PECS and sign language, but Derek had no interest in either.  He used them only for a brief time, to get something he needed--like milk, or "more" of something.  Once he figured out that he could get something easily by speaking, he started trying to get the words out.  It was one of the many miracles I've witnessed. 

So, what language do YOU speak?  In this house, we speak Derek.  (Tyler understands him better than anyone.  It's like the two of them have their own private language.)  It is the BEST language, because it is a language of patience.  When people speak different languages, they find OTHER ways to communicate.  They use gestures.  They hug more.  They laugh more.  They smile.  They touch.  Our language is a language of LOVE and understanding.  I've said it once, and I'll say it a million times more:  LOVE DOES NOT NEED WORDS. 

Friday, March 16, 2012

Educating a Kindergarten Class About Autism

This is a follow up blog to "Ian's Walk."  Earlier this week my son brought a children's book about autism to school and shared it with his class.  His kindergarten teacher told me that the kids had a lot of questions that she was unable to answer and asked if I would be able to come in and talk to the class.  Of course, I said "SURE!!"

So today, I had lunch with Tyler and his class and had the opportunity to educate about 15 kids about autism.  I think 5-7 year olds are awesome.  They are still open-minded and ask GREAT questions.  They didn't care that Derek was different.  They just wanted to know HOW he was different and WHY. 

The kids got their first glimpse at Derek's differences during lunch.  Derek refused to sit down at the lunch table.  Instead he kind of spun in circles near the table, flying his two matching airplanes.  Then, when he saw some of the things the other kids were eating, he said (more than once) "EEEEWWWW."  A couple kids asked me why he said ew to grilled cheese and yogurt and grapes and I told them that Derek doesn't like to eat the same things that we do.  We left the cafeteria a little early and went back to the classroom, because the more people that arrived in the cafeteria, the more frazzled Derek became.  So we retreated...

The Q and A went great.  These were my questions:

What does Derek like to do or play with?  He likes matching things--he has to have two of something at all times, like the two airplanes in his hands, or the two fish he brought.  He also likes to spin things (Derek chose that moment to start spinning me in the swivel chair!!!)  He likes anything that spins, like cars, Merry-go-rounds, sprinklers, anything with wheels...his fascination at the moment is trains.

What does Derek eat?  Mostly crunchy, dry foods like dry cereal, crackers, pretzels, and chips.  He has texture issues and won't eat bananas, yogurt, noodles, or anything wet.  Not even pizza or cheeseburgers.  (The kids freaked out at that!)  That's why he said "EWWW!" at lunch today. 
  
What is his favorite musical instrument?  He likes to bang on piano keys!  He loves music.

Is autism a disease?   No, it's a neurological disorder.  It's not contagious.  You can't catch it.  It means that there is something different in Derek's brain.  He looks at the world a little bit differently than you do. 

Can he say "Hello?"  No, he has trouble saying certain consonants.  "L's" and "r's" and other sounds are hard for him to say.  But he can say hi and wave.  Derek, say "hi."  "HI!"  (Derek said it, but didn't face the crowd, so I went on to explain that he has trouble making eye contact sometimes--especially with strangers.)

Does he play with other kids?  Does he play with Tyler?  Not really.  He has trouble in crowds and doesn't really know how to play with other kids.  He doesn't know how to share.  Tyler tries to play with him.  He's a really good big brother. 


We also discussed the fact that Derek doesn't LOOK any different and that we shouldn't treat him any different...

I was incredibly proud of the way Tyler handled everything.  He helped me answer questions when he could, gave Derek a huge hug (even though Derek grimaced and didn't hug back) and said, "I just love my brother Derek."  It brought tears to my eyes.  He wanted the class to know about Derek.  He was excited that we had come.  I don't know how many years that will last.  I wonder when Tyler will start to be embarassed that Derek is different.  I don't like to think about that day.  I hope it never comes.  I hope that by educating his peers and by talking to Tyler about equality, race, disabilities, and diversity, that I am making a difference in one life at least.  I want to ensure that my son, this beautiful child who hugs his brother in front of his friends, will grow up to be the kind, compassionate young man he is capable of becoming...


Tyler in the lunch line

Derek watching the lunch line...he was a little bit baffled by the process.

Lunch with my favorite 6 year old.

Derek fascinated by the car rug on the floor of the kindergarten class.  "Ding ding ding!"

Talking to the class


Uh-oh.  Derek discovered that the chair I'm sitting in is a SWIVEL CHAIR

And he has decided to start spinning me.  Perfect.


We stuck around for the "Mystery Box" game. You are supposed to stick your hand into the hole in the box and try to figure out what the mystery item is. If you look at the picture, you will see that Derek saw the hole and just LOOKED RIGHT IN to see what it was. I laughed. YEP! That's my son. Little rule breaker. :)


Sitting in my lap, doing surprisingly well.

Tyler surprised me and gave me a hug.

Then he sat in my lap.  WHAT????

We didn't stay long...

Wednesday, March 14, 2012

The Haircut Chronicles

Today Derek had his haircut.  I dread haircuts.  Usually haircuts are a nightmare.  They are like a 20 minute assault on Derek's senses.  He screams, cries, kicks, thrashes, tries to get away, and wipes at his face so much that he gets hair in his mouth and gags.  It's horrible to watch and I feel like I am torturing my child.  I've wondered if I should let him grow his hair out.  But then it gets to the stage where it's in his eyes and he's constantly pushing it OUT of his eyes.  That and he hates having his hair washed.  SOOOO...haircuts it is. 

I tried something different today.  I had Big Brother Tyler go first.  I usually cut Tyler's hair myself at home to save money.  I just buzz it.  But since I'm having pictures of the boys taken on Friday, I want them to look decent.  I think it helped--Derek watched Tyler out of the corner of his eye.  Sure, he was in my arms the entire time and kept pointing toward the door, but he watched.  He saw that Tyler didn't cry.

When it was Derek's turn, I tried to get him in the chair and he slumped to the floor, screamed "NO!!!" and fought me.  He wouldn't let me pick him up.  Finally I got ahold of him and sat down in the chair with him.  All of a sudden, it was like he gave up.  He stopped fighting and became a limp noodle.  He rested his head against my chest and just sat there, occasionally whimpering.  I didn't know WHAT to think.  This had NEVER happened before.  He held his cars, once in a while brushing the hair off his neck or arms and showing it to me, saying, "oh, no!" and whimpering some more.  Toward the end he started to panic a little, but I think it was because he was getting pretty itchy. 

I was SOOOOOO proud of him.  He's never done so well at a haircut.  Was Tyler to thank?  Is he just getting more used to this stuff?  Whatever it is, I'll take it.  Today was a tiny victory in my autism battle.

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The "Before" Picture

Derek at the salon.  He's terrified and clinging to me.

Big brother Tyler getting his haircut

Tyler looks handsome.  :)

Derek struggeld for a few minutes, then became a limp noodle in my arms.  1st time that's EVER happened.

I think Derek went to his "happy place."

Bye bye curls

Why are you doing this to me?

All done.  I have my cars and I'm happy, but itchy.

The "After" Picture




Monday, March 12, 2012

"Ian's Walk: A Story About Autism"

When Derek was first diagnosed, I wondered how my oldest son Tyler was going to be affected.  It was a big concern of mine.  Derek was suddenly getting lots of attention and Tyler, not even 3, didn't know what in the world was going on.  Autism is hard for an adult to understand, let alone a toddler.  I wanted to find a way to explain what was going on in simple terms.  So I bought him a children's book.  The book was called "Ian's Walk:  A Story About Autism."  I thought it was a great book, even though the kid in the book was older than Derek.  Ian, like Derek, was non-verbal and had lots of sensory issues.  The message in the story was perfect--that Ian was ok exactly the way he was.  I read the book to Tyler often, and talked to him about Derek as much as possible.  I didn't want "AUTISM" to be a family secret.  I wanted Tyler to be able to ask questions and discuss it openly. 

Derek was diagnosed almost 3 years ago.  Over the years, Tyler has dealt with feelings of jealousy, rage, and surprisingly enough, protectiveness.  He's defended Derek's actions to his friends, to family members, and even to complete strangers.  He's asked more and more grown-up questions and shown that he has quite a mature understanding of what autism is for his age.  He still says things like, "I think Derek will be able to talk by the time he's 6.  Then he won't be autistic anymore.  Right, mom?"  Then I have to explain to my son that autism is not something that we outgrow.  That Derek might learn to talk, but that he will always be autistic and always need our help.  That we will have to love him extra and make sure the world understands that he is special.  Then Tyler will surprise me with his wisdom and respond by saying, "Everyone is different.  I'll love him anyway." 

Today I found out from Tyler's kindergarten teacher that the school counselor wanted her to talk to the class about autism, because one of the kids was asking what it is.  I guess Tyler talks about his brother being autistic at school.  It's no big deal to him, because he's never known anything different.  But the other kids at school are confused.  So I loaned my copy of "Ian's Walk" to the teacher today and tomorrow Tyler's class is going to learn about autism and Tyler's little brother.  I asked Tyler if it was ok with him, if he was embarassed.  He said, "No, why would I be?"  For some reason tears are spilling down my cheeks.  Tyler is going to be Derek's best friend and biggest ally.  Autism Awareness Day is every day in my house.

http://childrensbooks.about.com/od/sensitivedisabili/fr/0408ians_autism.htm

Wassup!!! Echolalia at it's finest.

video

A lot of Derek's speech these days is just a repetition of what he is heard--otherwise known as echolalia, or "parrot-talk."  Somehow, my train loving little boy found the train version of the old Budweiser commercial on Youtube.  He LOVES it and watches it over and over again.  He's even picking up the words.  He says, "wo" for "hello", "twoo" for "true" and "waddup" for "wassup."  He also babbles through the parts he can't repeat.  Best thing though?  He randomly says "wassup" when he is NOT watching the video. 

At first I was worried about his speech going from nothing to just echolalia.  But, I've been told that this is progress and that at least he is beginning to speak.  I guess most non-verbal autistic kids go through this?  

Thursday, March 1, 2012

TYLER TYME!!!!

It's Tyler day.  He's on Spring Break for the next two days.  BUT, Derek has pre-school today.  So from 8:00 until 12:00 today Tyler and I have a VERY RARE four hours alone together.  This never happens.  So I'm letting him choose what we are going to do.  So far, this is what we have planned:  we are going to go to the store and get donuts and hot chocolate.  We are also going to stock up on eggs and boil them so we can dye Easter Eggs--it's one of his favorite past-times, so every Easter we stock up on extra packages so we can do it throughout the year.  We are going to make brownies, and play Trouble and read books and play Candyland and, and, and...

I think Tyler feels jealous of Derek, so it's important to spend time with him whenever possible.  He sees how much attention Derek gets with all of his therapy and actually WANTS to have therapy himself.  He has told me before that he wishes he had autism so that I'd spend more time with him.  He doesn't understand.  Yet.  That's why days like today are so important.