A Little Voice

From the other room I hear my son's quiet voice singing "I'm a little teapot."  He doesn't get all of the words right, but he gets enough of them for me to know what song he is singing.  And he definitely gets the notes right.  Derek is obsessed with teapots.  He thinks anything that resembles a teapot IS a teapot.  We're talking watering cans and coffee mugs with straw...even movie cases that have pictures of teapots on them (Alice in Wonderland and Beauty and the Beast).  He carries them around like they are precious stones. 

The song, even though I hear it over and over (and OVER) again, does not annoy me.  It is sweet, sweet music.  Because my son has a voice. 

I remember vividly the day I was told that my son might never talk, and that I shouldn't get my hopes up. Between 25-50% of children with autism are non-verbal (depends which article you read.)  I decided that very day that my child would speak.  What's wrong with hope?????

Three years (and a lot of hours of therapy) later, Derek has words.  Sure, many of them are mispronounced.  Derek still babbles nonsense, he sings nursery rhymes constantly, and a good deal of his speech is echolalia (parrot-talk)--but he is speaking non-the-less.  But more and more often, Derek surprises me with something completely out of the blue.  Like yesterday, he was playing with dinosaurs and said something that resembled "Tyrannasaurus rex."  And the day before, he brought me his father's shoe and said, "Daddy's shoe."  He labels things like "shoe" and "ball" and "cup" all the time, but I didn't know he knew THAT SHOE was his Dad's.  Last Friday we watched Finding Nemo.  He pointed to the turtle and said "Turtle."  (I didn't know he knew what a turtle was.)

I'm sure my friends with neurotypical children think I'm insane.  I'll call them up and tell them Derek said this!  or Derek said that!  I'm sure they are thinking, "So what, my kid said that when he was one."  They don't understand.  I've been waiting FOUR WHOLE YEARS to hear this child speak.  Every time he says something, ANYTHING new, it still shocks me because he has been silent for so long.   

So today, when Derek came up to me and gave me a hug, then whispered in my ear "Happy," you can only imagine my surprise (and the tears that followed...)

Love is a Battlefield

I've seen The Exorcist.  It scared the living daylights out of me.  I never expected today to remind me of that movie. 

I'm trying to write this while it is still fresh in my mind, but I'm having a hard time putting it into words.  Today was easily one of the hardest days of my life, and I've had some doozies. 

We arrived at the hospital at 6:30 a.m.  Derek was terrified.  (I tried to prepare him by talking to him about it yesterday, but he had absolutely no comprehension of what I was saying--he looked up at me once, smiled, and then continued singing "I'm a little teapot."  He was not even remotely phased.) 

Arrival at the hospital

Since he had trouble with the medical ID on his wrist last time, I convinced the nurse to put it on his ankle this time.  (GENIUS move on my part--there was some whimpering, some tugging at it, and a few "off" requests, but no screaming, no scratching and, best of all, no BLOOD.)

Ankle ID bracelet

Despite my requests, the hospital staff did not allow me to go back with Derek when he was put under.  It was "against regulation."  They would not allow me to be there when he woke up, either.  The whole procedure took about 2 hours, once they got started.  I was told they had trouble intubating him.  They fixed his cavities, (he got 3 fillings and 2 silver caps put on), they cleaned his teeth, they did fluoride treatments...the whole nine yards.  He has such a hard time at the dentist office, I guess they figured they should do EVERYTHING while he was under.   

When Derek woke up from the anesthesia, a nurse brought him to me and placed him in my arms. She told me Derek might cry a little while he figured out where he was.  Then she left the room.

Recovering

Derek did more than cry.  He thrashed.  He kicked.  He screamed.  He arched his back and flipped out of my arms.  I had to move to the floor because I was unable to control him.  He continued to flop around.  He convulsed.  He tried to run but could not focus on anything.  I looked at his eyes and they were BLACK--his pupils were completely dialated.  He yanked his IV out and suddenly there was blood dripping and a needle hanging from his hand.  Courtney (one of Derek's ABA therapists who came with me to help) dashed over and pulled the emergency cord for help while I kicked chairs out of the way.  A nurse came rushing in and helped get the IV out of Derek's hand.  She also tried to help me control Derek, who by this time was banging his head against the floor in his thrashing.  We put pillows under him.  I have never felt so helpless in my entire life.  Derek was there, but he wasn't THERE.  (Does that make any sense?)  This was not my child.  He was a child possessed.  I could not reach him.  My voice, my touch, my PRESENCE even did nothing to calm him.  I don't think he could hear me.  I don't think he even knew who I WAS.  It was downright horrifying to witness.  I cried.  No--I'll be honest.  I SOBBED.  Finally, after 15 minutes of convulsing like this, Derek just passed out on the floor.  He slept for another 2 hours or so.  When he woke up and we were finally able to go home (6 hours after arriving) Derek was a zombie. 

Poor little man is HURTING.

Those of you with a non-verbal child will understand my relief when I was finally able to get Derek to speak again.  I'm always terrified when my son has to go under that something will make my child regress.  I asked him if he wanted juice and was met with a firm, "No."  I hadn't gotten eye contact yet, but it was a start.  He could still talk.  :) 

His face is puffy, his lips are swollen, and for some reason his left eye is only half open.  I'm not sure what is going on.  He's also acting, well...drugged.  But I guess that's to expected. 

Our day has been spent recovering.  Lots of laying around, lots of cuddling, lots of movies, lots of sleeping.  And just a few minutes ago, he gave me a weird smile and pointed at his mouth, as if to show me something was different.  Sure enough, I could see his silver teeth. 

Life is full of challenges and tests.  Derek and I have been through a lot together.  Autism and everything that comes with it.  An MRI.  An EEG.  An ABR test.  Hearing tests.  3 autism evaluations.  And now 2 of these lovely dental surgeries.   We survived.  That is pretty much the only positive thing I can say about today.  It was traumatic, but we walked away from it, non-the-less.  Each time I go through something like this, I ask myself WHY?  Why is this happening?  Why does my beautiful, wonderful, happy child have to go through such horrible things so often? Is it to make him a stronger person?  Or maybe ME a stronger person?  If so, it's working.  I can handle anything that is thrown at me.  I would fight WARS for this child.  Love is a battlefield, and I'm not about to go down without a fight.    

Hiding from the camera

New silver teeth

Excuse me, how much? For EAR DROPS???

So, Derek has an ear infection.  He gave me lots of clues yesterday, but I missed most of them. 
1.  At swim lessons he screamed louder and more often than usual.
2.  After swim lessons he put his left ear on the carpet and rubbed his head back and forth.  (I thought maybe he had water in his ear?)
3.  He said "itchy" a lot.
4.  He tugged on his ear.
5.  FINALLY, he stuck his finger IN his ear and said "owie."  (Then, idiot that I am, I finally realized he probably had an ear infection.)

Next Friday (the 27th) Derek is supposed to have oral surgery.  So I knew I had to get my son to the doctor asap, and get it taken care of so he'd be cleared for surgery at his pre-op physical. 

The doctor appointment went ok.  Derek actually let the nurse weigh him for the first time ever (he weighs 40 lbs!!) and we got through the examination with a minimal amount of crying/screaming.  (It helped that there was a picture of a really old train on the wall.  Derek was enthralled.)

We did just fine until we got to the pharmacy.  By then, Derek was tired and his ear must have really been bothering him.  We had to wait to get the prescription filled.  And when I went to pay for the ear drops, the cashier told me the total.  "That's $146.18."  Say what?  We don't have prescription coverage on our insurance.  I asked if there was a generic brand or any other kind of ear drops we could get.  Nope.  And it's not like I could just call the doctor and ask him to write me a prescription for something cheaper.  So I sighed and handed the cashier my credit card. 

Guess what happened?  The paper got jammed.  The receipt would not print.  While the cashier tried to fix the problem, Derek went beserk.  He started spinning in circles and flapping his hands and screeching.  He started pulling candy off the shelves.  He started spinning a display of magnets (just because it SPUN!) and magnets started falling off the shelves. 

I did everything in my power to calm him down.  I gave him candy.  I tried to get him to sit down.  I tried to hold him.  And by then, there was a line of 6 people behind us.  I told the cashier, "I don't need my receipt."  But, of course, I had to SIGN the receipt since I paid with credit card.  And I didn't have enough cash to pay $146.18.  So I was stuck.  I couldn't leave.  And I wasn't about to leave without the dang ear drops.

Normally, at this point in a meltdown, when people are staring at me and Derek, I tend to tell people, calmly and politely, something like "My son has autism.  He also has an ear infection.  Please excuse his behavior--waiting is hard for him." 

But yesterday I did nothing of the sort.  I let my son have his meltdown.  I said nothing.  I did nothing.  Because honestly?  I had to pay $146 for ear drops--and I wanted to throw a fit too.

DDD Anniversary 2012: Changes

July 17, 2009--two days after diagnosis

2009

I always feel nostalgic this time of year. Memories haunt me. I remember a little boy, not quite two years old, with big brown eyes and a beautiful smile, that was lost in his own world, unable to communicate...
It's July 15--the anniversary of Derek's diagnosis. Three years ago today my life turned upside-down. Up until this date, I didn't even know what autism WAS. Now, I feel like I should have an honorary PhD in autism research. In 2009, my life did not revolve around therapy schedules and doctor appointments. I did not stare at the ceiling at night wondering what the future held for my little boy. 

nostalgia [nɒˈstældʒə -dʒɪə]

n

1. a yearning for the return of past circumstances, events, etc.

2. the evocation of this emotion, as in a book, film, etc.

3. longing for home or family; homesickness

I don't long to go back to 2009. That was the worst year of life. No, I long instead for the days BEFORE the diagnosis, when Derek was an infant and I was like other stay-at-home moms. I cooked, I cleaned, I talked on the phone, and I had a semblance of a social life.  Once upon a time I complained about things like being tired and the fact that both my boys were in diapers at the same time. I cringe now, knowing I actually complained about that stuff.  Back then, as far as I knew, both of my boys were happy and healthy...and I took everything for granted.      

I've always joked that when Derek was diagnosed, I went through the Looking Glass, like Alice in Wonderland.  Everything changed. Autism brought life into sharp focus.  Things that used to matter to me suddenly seemed unimportant.  I lost friends.  My career plans (to teach at a university) went out the window. My expectations for parenthood vanished. And I slowly became a different person.

Alice:  But it's no use going back to yesterday, because I was a different person then.

I'm told that this is common; that when something traumatic happens your brain kind of "splits" and your life divides in two. Life before the event and life after. When I hear a date, I automatically think, "Had Derek been diagnosed by then or not?" There was a time before autism ruled 95% of my thoughts. I know there was. But my memories of those days are vague and fuzzy. 

July 15, 2009 when my dreams fell apart, I had NO IDEA that in three years I would see the diagnosis as a blessing.  Slowly, I have been able to rebuild NEW dreams--BETTER dreams.  Autism has changed me. It has made me a better person. I take NOTHING for granted anymore. Every word that comes out of my son's mouth is a miracle. Every milestone he reaches, no matter how simple, is celebrated. And I am AWARE of things I never saw before. Not only do I see the world through Derek's eyes (I notice dew on grass, bugs on leaves, and birds in the sky.) I also see people with disabilities differently. I see parents fighting every day to make sure their children get the same chance to succeed that "typical" children do. I see how STRONG these parents are, and how proud they are of their children. I see the unconditional love in their eyes, and hope that other people see ME this way--as full of love and hope and pride. Yes, autism has changed me...life no longer revolves around me. It revolves around my children, and doing everything I can to make this journey easier for others.  I now want to do something that MATTERS, and make a difference in the lives of others.  I don't think it's a coincidence that God gave an autistic child to an artist...

Derek has allowed me to see things from a different perspective, and as an artist I think this is INVALUABLE.  My life is unpredictable and strange, but I wouldn't have it any other way. 

Alice: “If I had a world of my own, everything would be nonsense. Nothing would be what it is, because everything would be what it isn't. And contrary wise, what is, it wouldn't be. And what it wouldn't be, it would. You see?”

Then and now...

The picture on the left was taken at Lake McConaughy July 17, 2009 (two days after Derek's diagnosis).  I didn't realize the significance of the picture at the time it was taken.  It now hangs on a wall in my house, in a frame says "The Road Ahead Lies Within."  It reminds me daily just how far my son and I have come on this journey.

The picture on the right was snapped by one of Derek's therapists on April 1, 2012.  Derek wanted to go running with me.  In less than 3 years, my little boy has grown THAT MUCH.   I wish you could see in the picture how much I have changed and grown as well...but I guess my changes are on the inside.   

July 15, 2009

The Haircut Chronicles Continue

Before

After (with ice cream as a reward)

I was hoping, really hoping, that Derek's haircut would be a BREEZE today.  We've been preparing for haircuts in therapy, by practicing for them.  We spray Derek's hair with water, we show him the scissors, we brush his hair, we pretend to cut it.  All of these things were difficult at first, but he got used to them. 

Today, we tried something a little bit different.  Rather than taking Derek to a salon, I had a stylist come to our house.  I figured, in his own house, with the tv on to distract him, maybe Derek would be more comfortable. 

Nope.

I don't know what it is about haircuts--the sound of the scissors?  The itchy hair on his neck?  SOMETHING about having his haircut drives Derek up the wall.  I wish he could tell me why it's so bad.

I guess today wasn't as bad as some days.  He whimpered a lot and said, "NO" over and over again and tried to get out of my lap repeatedly.  But he wasn't crying and screaming and kicking.  I just HATE the look on his face--it's as if he is having to endure the worst possible torture on earth and I'M the one that's inflicting it.  His eyes ask one question:  Why are you doing this to me again? 

I've thought seriously about letting his hair grow and letting him look like a little wild child.  I have no problem with that.  But HE seems to have a problem with his hair once it gets in his eyes.  For the past two weeks he has seemed annoyed.  So, I decided once again to cut it, despite my dread.

And boy, does he look CUTE.

Performing the Heimlich Maneuver: The Not-So-Harmless Apple Chunk

I'll be honest, yesterday scared the crap out of me.  Where I left my nephew's birthday party, I was sobbing, shaking, and pretty much hysterical.  Looking back at everything today, I realize just close a call we actually had.  My son choked on a piece of apple and I had to perform the Heimlich Maneuver.  I'll tell you more in a little bit. 

I'm attaching a link for you: 
http://www.youtube.com/watch?v=lehmZgaFMH8 

This is a video on how to perform the Heimlich Maneuver on a child.  Share this with whomever you want--you never know, it might save a life.  First off, I'll say that I skipped a bunch of steps.  Since Derek is autistic, he did NOT do the universal sign of choking.  He did not grab his neck to tell me he was choking.  I didn't even ask him if he was--he wouldn't have nodded his head.  I didn't tell him what I was going to do, either.  There was no time and he probably wouldn't have understood anyway.  I just picked my child up and did what I had to do... 

Here is what happened.  My nephew Andy turned 3 and had a birthday party.  The party was at a house with a huge backyard.  Up near the house were lawn chairs and that's where the adults were hanging out, eating and talking.  On the other side of the yard was a swing set with a slide.  That's where Derek was.  He had eaten nothing but cheese puffs for supper, so I was trying to get him to eat apple slices.  He took an apple slice and headed for the swing set.  I try to keep an eye on Derek no matter where I am or what I'm doing--it's second nature to me by now.  So when I glanced at Derek and he was kneeling at the bottom of the slide, looking like he was about to vomit, I stood up.  I stared at him for a minute, and realized instantly that something was wrong.  I took off at a dead sprint.  I knew--I KNEW--that he was choking.  No, he was not holding his throat.  But his body was heaving and he was not vomiting.  His face was white.  And there was a look of pure terror in his eyes.  I know my son like the back of my hand.  When his face looks like that, something is REALLY WRONG.  When I got to him, his face was starting to turn blue.  My first instinct was to slap him on the back.  But I knew that could make the apple get lodged farther down, (I took first-aid classes a long time ago) so I picked up his limp body, turned him around, wrapped my arms around him, and drove my fist into his stomach.  Nothing happened.  I had to do it several times before I heard him gag and then breathe.  He gagged several times and then dry-heaved.  Then he started crying. 

We left the party early and my poor, traumatized son fell asleep within two minutes of getting in the car.  He seems fine today, but I've been checking his stomach to make sure I didn't bruise him. 

I'll tell you one thing.  Doing the Heimlich Maneuver on a plastic adult manekin and doing it on your own 4 year old son?  TOTALLY DIFFERENT EXPERIENCE.  There are no classes in the world that can prepare you for the terror of the real thing.  An apple a day does not always keep the doctor away.,,

What Autism Looks Like: Beautiful

I have done the portraits of 16 different autistic children now, my own son included.  And I plan to do many more.  If I have learned ANYTHING since I started this project a year ago, it is that kids on the spectrum are BEAUTIFUL BEYOND DESCRIPTION.  They have eyes that speak volumes, smiles that light up the world, and features that are absolutely captivating.  I should know.  I've been doing portraits for a long time.  But it's more than just their LOOKS.  It's their positive attitudes, their love of life, and their way of looking at the world that makes them special.

I've noticed that people hate and fear what they don't understand.  This is especially true of disabilities.  Unfortunately, their words and actions reflect this.  When someone has an obvious disability, like an amputation, often times people only see the disability.  They forget that there is still an actual PERSON and that the person could probably use a smile.  Same goes for someone with Down's Syndrome.  Are people afraid that if they smile and nod at a stranger with Down's that they might actually catch it like the flu?  And autism?  What do people do when the disability is NOT as obvious?  More and more lately, when I'm out in public with my children, people either refuse to give me eye contact or, if my son is having a meltdown, I am met with looks of outright disapproval, disgust, and judgment. 

I'll be honest, sometimes it bothers me.  But lately, I smile.  Because these people don't know what I know.  They don't know that my son is learning to speak.  They don't know that he makes me laugh, every single day with the things he does.  They don't know how much joy he brings to those around him.  They don't know understand why hearing him say, "Wuv oo too"last week made me cry.  They will never understand, because they choose to look the other way. 

My son has worked harder in the past 3 years of his life than many people people do in a lifetime.  He is overcoming obstacles right and left.  I couldn't possibly be more proud.  And I know I'm his mom, so yes, I'm biased...but I think he's absolutely beautiful.  If somebody told ME that I "looked autistic," I'd thank them for the compliment.

My Son Dare-kick

 

I don't need an alarm clock in the morning.  My alarm clock is a 4 year old boy with big brown eyes saying, "Gake up!"  If I try to roll over or close my eyes again, my son gets in my face and says just a little bit louder, "GAKE UP!!!"  Once in a while he'll giggle and say "Hi!" or just "Mommy!"  It's hard to be upset, because just a few years ago, Derek had no words at all.  We worked with him in therapy just to get him to make a sound--ANY sound. 

For those of you knew to this blog, this is my son "Dare-kick."  He can't pronounce his own name.  We've been trying to work with him on answering questions like "What's your name?"  Dare-kick  "Where do you live?"  Sackle (Axtell) "What's your brother's name?"  Tire  (Tyler)  Obviously, he still needs some speech therapy. 

Let me tell you about "Dare-kick."  He is an extremely picky eater.  He eats dry cereal (Cheerios and Chex), pretzels, Club crackers, popcorn, apples, pears, Oreos, ice cream, chocolate chip granola bars, pizza flavored Gold Fish crackers, donuts (kind of--the outside only), soy milk, juice, and gatorade.  THAT IS IT.  I've been asked why I haven't put him on the GFCF diet.  Honestly?  Because I'm scared he'd starve to death.  We've tried bribing him to get him to eat new foods--it back-fired.  He gave up eating the foods we were rewarding him with.  Now he won't touch Cheetos. 

"Dare-kick" is in ABA (Applied Behavioral Therapy) with a team of 6 therapists, 7 days a week, between 30-36 hours a week.  His therapists are my family.  They are in and out of my house all hours of the day.  They have taught Derek a lot over the past two years.  His programs change all the time.  He is currently learning how to appropriately play with his brother, the alphabet, how to color, how to request things, and as I said above--how to answer questions.  I credit these girls with my son learning to speak.  They are the most patient and loving people I've ever met.  During the school year Derek rides on a bus to a special-ed preschool about 20 minutes away.  It's a wonderful school, and luckily Derek LOVES it. 

Derek WAS attending OT and PT, but we recently had to quit because we could no longer afford it.  Our insurance covers absolutely NOTHING that has to do with autism.  We pay for ABA out of pocket, with help from Derek's grandparents.

Derek has several stims.  He flaps his hands and jumps up and down when he's excited.  He twirls hair (mine, his, his therapists...) when he is tired or distressed.  He runs in circles.  He spins.  And he can't just have one of something.  He has to have two matching things--it doesn't matter what it is:  two cars, two trucks, two Batman toys, two dinosaurs...

But that's just the boring stuff.  Derek, more than anything else, is a CHILD.  He likes to play.  He likes to sing (Wheels on the Bus and Humpty Dumpty are the current ones--he's like a broken record).  He likes to get dirty and go swimming and ride a scooter.  He likes to be outside in the sunshine and throw stones in the lake.  He laughs often and easily.  He may not speak well, or as often as other children, but he is full of love.  Unlike most autistic kids, Derek doesn't mind being touched by people he knows.  He likes hugs and being tickled.  Just yesterday, Derek came home from summer school, hugged me, and said (unprompted), "Wuv oo too."  It was one of those moments that made my jaw drop.  Tears poured down my cheeks.  My son is considered "non-verbal".  I was told when he was diagnosed that he might never speak at all.  So it is impossible to express how it felt to actually HEAR those three little words...