Do Zombies Cry?

I think I'm turning into a zombie.

I'm "dead" serious.  :)

In the past few years, it seems like I have become emotionally numb to a lot of things that used to bother or upset me. 

It has been 3 years since Derek was diagnosed with autism.  When he was first being evaluated, and in the 6 months or so following the diagnosis, I was a mess.  I cried all the time.  I cried over the child I thought I'd lost.  I cried over the dreams I was giving up.  I cried out of fear and anger and frustration. I cried because I felt alone.  I cried because the future was suddenly uncertain and I didn't know how to help my child.  I cried because I felt like my heart had been ripped out of my chest. 

As we all know, life goes on.  Healing takes time (and I didn't HAVE time)--so I put band-aids on my emotions and pretended I was ok.  Day by day, I did what I had to do to survive.  I became a google junkie and an autism "expert."  I discovered ABA and hired therapists to work with my son.  Derek slowly started to improve.  I also stopped crying.

In three years, life has changed tremendously.  I don't really remember what life was like before autism.  I don't remember the person I used to be, but I'm told I was kind of crazy and fun. 

What am I now?  Numb.

The past year has been a whirlwhind.  SO MANY THINGS HAVE HAPPENED.  Derek had to have dental surgery again.  He also had to have an endoscopy.  He was vomiting in the middle of the night at least once a week for MONTHS on end--turning me into a sleep-deprived maniac.  He was finally diagnosed with cyclic vomiting syndrome.  What exactly is CVS?  Here you go:  it means my child wakes up vomiting in the middle of the night for no real reason at all.  He suddenly sits up and vomit comes spewing out of his mouth.  I run him to the bathroom (he sleeps with me right now so I can help him) to minimize the mess.  Then he vomits uncontrollably for hours on end.  Sometimes it's only 2 hours.  Sometimes it's up to 4.  And sometimes he gets diarrhea with it--explosive diarrhea.  I sit him on the toilet and hold him up (because he is too weak to hold himself up) and he vomits into a towel.  He cries because he doesn't understand what is happening.  He freaks out when he gets vomit on himself.  And what causes CVS?  Who knows.  It could be caused by migraines, but since he's autistic, there's no real way for him to tell me if he's in pain.  So I have no indication when it's going to happen.  It can also be triggered by certain foods and stress.  He is on medicine, which is helping (Thank God).  But I feel like I'm waiting for the other shoe to drop.  I don't know when his next attack will hit...

http://my.clevelandclinic.org/disorders/pediatric/cyclic-vomiting-syndrome/hic_cyclic_vomiting_syndrome_in_children.aspx

Derek still has to have allergy testing, an MRI and an EEG.  Turns out there is a possibility Derek has epilepsy too.  He's had strange staring spells since he was 2.  He had an EEG in 2009 that was inconclusive because he yanked off all of the electrodes.  This time he will be sedated. 

I'm in survival mode.  In order to get through all of this, I had to turn off my brain.  You know, the part that has normal, every day emotions?  Happy, sad, angry, frustrated, impatient, bored?  Hah.  For the most part I have turned into a zombie.  My "disgust" factor was turned off a long time ago.  When you get yakked on repeatedly, vomit no longer phases you in the slightest.  I also hear about things happening to other people and I think, "Oh, that's supposed to be funny."  But I have trouble laughing.  I hear about babies being born and people getting married and friends getting jobs--and I try to be happy.  I really, truly try.  But I'm beyond exhausted.  I'm at the shut-down point where no emotions exist.  Unless you count numb.  I have too much on my plate to take on anymore--and people with road rage, impatience at the check-out line at the grocery store, and even overly happy people seem ridiculous to me. 

I've turned into "that" person.  The one that people hate.  The one that never calls.  The one that doesn't email back.  I rarely go out anymore, unless it's to go to yet another doctor's appointment. 

Every once in a while, something will happen and actually penetrate my brain.  Something miraculous.  Like Derek recognizing Santa.  He sat on his lap and said "Stanta" and whispered "Ho, ho, ho."  Or when Tyler and Derek sat on opposite sides of the teeter-totter last week for the first time EVER and actually did it correctly.  Both of them were giggling and Derek's eyes were twinkling in the sunshine...moments like that hit me hard.  Then I am hit by a SURGE of emotion and tears cascade down my cheeks like waterfalls.  Yes, zombies cry.  When it really matters. 

Never shut up. Ever.

Three years ago during the week before Christmas, I survived Hell Week.  I don't remember the exact dates.  But I know that on the Monday before Christmas, Derek had an MRI.  On the Wednesday before Christmas, he had an EEG.  And on the Thursday before Christmas, he had his second autism evaluation and was officially diagnosed.  Derek was 2 years old.  And somehow, I survived the week. 

That Friday, I woke up and realized I hadn't done any Christmas shopping.  I didn't have a single present for anyone in my family.  In a slight panic, I packed my two year old non-verbal autistic son and my 3 year old (very chatty) son into the car and went to Target with one goal in mind--to get Christmas presents for EVERYONE. 

I was on a mission.  I was throwing things in the cart and trying very hard to be "Christmas-y."  You know, full of cheer and what-not. 

All of a sudden, something stopped me in my tracks.  I saw a woman yelling at her child.  He was young.  Maybe 4?  And sure, he was being naughty.  He was telling his mom he wanted something over and over again and tugging on her arm.  He was being a typical 4 year old.  And I'm sure the mother was frazzled with all of the last-minute Christmas things that had to be done.  But what she said haunts me to this day. 

She yelled at her child, "Just SHUT UP!!!"

I'm sure my jaw dropped.  I couldn't help it.  I looked at Derek, who was sitting in the cart, staring up at the lights on the ceiling.  My beautiful, son--who at that point had not yet uttered a single word.  That woman had NO IDEA how blessed she really was.  What I wouldn't do to hear my child speak...  The stress of the week hit me all at once, and tears started streaming down my cheeks. 

That is why, three years later, I do not get caught up in the holiday hoop-lah.  I no longer participate in Black Friday.  I do not have an Elf On The Shelf.  I make Christmas cookies, but only because my children like to make them with me.  If I start to get overwhelmed, I think about that one week and remember what Christmas is REALLY about...

My present this year?  Derek started speaking.  REALLY speaking.  Short sentences even!

NEVER shut up, my child.  Ever. 

Children Grow Like Weeds.

When friends or relatives haven't seen me in a while, they always say, "Oh, your children have grown so much!" They also tell me how much Derek is improving, and like to point out that I probably don't notice it, since I'm around him all the time. 

Guess what, folks?  I notice.  I consider it one of the grand privileges of being a stay-at-home mom.  I get to witness EVERYTHING.  I notice when one of my kids outgrows a shirt or can no longer button a pair of pants.  I notice when they can no longer squeeze into a pair of shoes.  I can physically SEE my children growing--right before my very eyes.  Much as I wish they'd slow down, they grow like dandelions in the summer. 

It's not just physically that they are growing, either.  They are growing as PEOPLE, too.  In the past year Derek has learned to talk. He answers simple questions, sings, and even says 3-5 word sentences.  And Tyler?  Tyler has learned to read, add and subtract.  Both of their brains are developing magnificently. 

They are both developing emotionally as well.  Derek is learning compassion, which is supposedly difficult for autistic individuals.  For example, I hit my head the other day.  He asked, "Are you ok?"  Then he hugged me.  When did he learn to do that?  He also thinks things are funny and laughs at appropriate times.  INCREDIBLE. 

Tyler is so complex it is mind-boggling.  He asks questions I can't even answer.  He wants to know EVERYTHING.  He asks about dinosaurs and how the earth was created and why Jesus wears a bathrobe and why angels are sometimes pictured naked...he asks about autism and why Derek has it and why he does NOT and if Derek will always be autistic...he asks how babies are created and why he and Derek were born into THIS PARTICULAR FAMILY...he asks why some kids have cancer and why some kids die...

Sometimes, "I don't know" is the only answer I can give. 

I think about my own life--I have changed a LOT in the past 5 years, that is for sure.  But compared to how much my children have changed in just 365 days?  It doesn't even compare.  I wonder sometimes if other parents are as awestruck by their children as I am.  I'm trying to cherish the moments.  I'm trying make everything count.   

Someday I will look back at these years and wonder where they went.  I will long for the cereal on the floor, the noise, and the dirty hands hugging my neck.  I'll long for the bouquets of dandelions they once picked for me.  But time refuses to stop.  My children might be growing like weeds, but really, they are turning into beautiful flowers. 

Daily Battles and Random Thoughts

I had a dream last night that I was drowning.  Some invisible force was pushing me down and I couldn't find my way to the surface of the water.  I struggled to wake up, only to find that Derek's arm was around my neck.  Well, that explains the dream--sort of. 

Derek has been sleeping in my bed for a while now.  Since he has CVS (Cyclic Vomiting Syndrome), it is easier.  A) I don't have to worry about him asphyxiating (did I spell that right???) on his own vomit.  B) I can race him to the toilet and minimize the mess.  C) I can comfort him. 

The downside, of course, is that I haven't been sleeping as well.  I often wake up with feet in my face, my blankets get stolen, and I get kicked.  Alot.

I also get to wake up to hugs and giggles--and sometimes it's the best part of my entire day. 

Friday was an OFF day for Derek.  You know the kind, right? 

Derek saw his pediatrician in Omaha on Friday.  This doctor is a developmental behavioral pediatrician who is known for being great with autistic kids.  80% of his client base has autism. 

Derek had been extra stimmy that morning.  He had no interest in the toys in the waiting room.  Instead, he chose to run back and forth, laughing loudly and hysterically for no particular reason.  I couldn't help but think, "This could be interesting." 

The nurse called us back and we waited in the room.  Derek played with some dinosaur toys they had in there, but I could tell he was nervous.  He's seen a lot of doctors lately, and his eyes kept darting around, like he was looking for an escape route. 

The doctor knocked on the door and came in.  He said, "Hi Derek.  How are you?"  Derek responded by repeatedly grunting (he sounded like Forrest Gump).  Then he threw himself on the ground and spun in circles.  (Not exactly sanitary...)

For just a split second, I felt a flash of embarrassment.  But I quickly checked myself.  Why was I embarrassed?  This doctor has surely seen it all.  True, I wished Derek was having a better day.  I wanted the doctor to hear Derek talk and witness all the progress he's made.  But with autism, you can't always get what you want.  The important thing was that the doctor heard our concerns and helped us.  He didn't judge.  He also cares about Derek and wants to help him feel better. 

I had a three hour car ride home.  I'd like to tell you that Derek fell asleep immediately and I had a chance to relax.  Instead, I had to pull over 4 separate times because Derek dropped a toy and started screaming at the top of his lungs, had to potty, and spilled juice on his shirt and needed a new one...

Yes, it was definitely one of those days. 

But those days inevitably remind me something--that autism will not defeat my son.  Derek can't help it if a wet shirt makes his skin crawl.  Exhausted and frustrated as I get, my little boy is still there, behind all the behaviors, just trying to make sense of it all.  Derek is fighting a war.  I'm just here to help him get through the daily battles. 

Top 10 Reasons I Love My Autistic Son

I haven't blogged lately.  I haven't made any art either.  Life has gotten in the way.  People keep telling me that if I want something badly enough, I have to MAKE time.  Ok, I agree.  And I'm not one to make excuses.  So I'll just say that right now, my priority is sleeping.  Derek is still having vomiting spells at least one night a week.  That means that one night a week, I get about 3 hours of sleep.  The next day, I'm a zombie.  Even if I get 8 hours of sleep the following night, it doesn't make up for the lack of sleep the night before.  I am perpetually running on fumes, and guzzling caffeine like my life depends on it.  Art is going to have to wait.

Anyway, I decided that today I needed to refocus my energy and remind myself of all the reasons WHY I love my son.  It's not Derek's fault he is sick.  I would rather spend a sleepless night holding him over a toilet ANY TIME than not have him in my life. 

So here it is.  The list.  The Top 10 Reasons I Love My Autistic Son (in no particular order).

1.  He gives me unexpected hugs and kisses.  Most people have to ask Derek for a hug.  He gives them to me "just because."  And they aren't little sideways hugs.  They are bear hugs.  For these I am eternally grateful, since so many autistic kids don't like to be touched. 

2.  His laughter is infectious.  Especially his belly laugh.

3.  The kid has a sense of humor, which I never expected.

4.  The way Derek says "Mommy!" when he hasn't seen me in a little while.  It's my favorite word.  I waited YEARS for Derek to say it and I still think it's priceless.

5.  Derek finds joy in simple things.  He likes pouring water from cup to cup, letting sand trickle through his fingers, watching the wind blow leaves on a tree, or letting a ladybug crawl on his hand.  Because of my son, I stop and take notice of little things going on in the world around me.  I was too busy before. 

6.  He loves music and can pick up a tune faster than anyone I know.  In fact, we've used music to help Derek learn words.

7.  Derek loves to match things.  He has since he was a baby.  For example, yesterday he discovered we had two Star Wars figures with lightsabers.  He was so excited to find TWO figures that he was jumping up and down and flapping his hands. 

8.  Derek tries exponentially harder than anyone I know--at EVERYTHING.  He struggles to get words out of his mouth.  He has to work to grip a pencil and write his letters.  He has to fight revulsions to certain textures just to EAT.  His ability to smile, despite his daily battles, is inspiring.

9.  Derek thinks the world of his older brother.  They are best friends.  They fight all the time; yet Derek watches everything Tyler does and tries so hard to keep up with him.  He even looks around for Tyler when he's not home.

10.  When Derek makes eye contact with me, I swear he speaks to me with his eyes.  We don't need words.  The connection between the two of us is the most powerful thing I have ever felt.  There are no words in the dictionary to describe what passes between us--it's MORE than love...

Memories, Miracles, and a Little Bit of Magic

Derek at age 2

Derek's MDT is on Tuesday.  What does that mean?  It means that his Multi-Disciplinary Team reevaluates him for autism.  No. Big. Deal.  Except it is.  It means everything in terms of the services he receives in school.  I'm not worried, because I know Derek will still qualify.  But it's hard to hear that your child is behind his peers--even when you know it's coming. 

It has been 3 years since Derek was officially diagnosed.  1095 days.  It feels like a lifetime.

I cleaned out Derek's therapy room today.  All I really wanted to do was vacuum and straighten the room up.  90 minutes and a trip down memory lane later, the room is definitely clean...

When I went into the room, I was in a rotten mood.  I wanted to take a nap, but that was out of the question.  So I dumped an entire toy box on the floor and started shuffling through it.  The first thing I found was a plastic blue circle.  It stopped me in my tracks.  I was instantly reminded of a day 3 years ago when I was trying to help my son fit different shapes into a shape sorter.  A purple cross.  An orange square.  A red triangle.  The circle was the only shape he could get to fit through the hole.  Suddenly, I couldn't breathe.  A lump formed in my throat.

I looked around at some of the other things in the room.

There were wooden puzzles on a shelf.  You know, the kind made for toddlers.  My son struggled through them all--especially the alphabet ones.

PECS (Picture Exchange Communication) boards were propped against a wall.  there was a picture of Cheetos and a picture of his favorite fire truck...we'd used those for rewards...I remembered screams and smiles once Derek finally figured out what we wanted from him.

By now tears were coursing down my cheeks.

If you are wondering why I cried, it's because my son has come SO FAR.  Unlike most children, learning didn't come naturally to Derek.  He didn't pick up on language naturally.  We had to teach him language with flashcards.  We had to teach him how to PLAY.  We had to teach him how to turn on a LIGHT SWITCH.  We had to teach him everything. 

In three years, Derek has somehow figured out a way to not only survive, but to THRIVE in a world that he is not comfortable in.  I never expected him to be talking at all, but he is.  I consider him my miracle.  He's even starting to put sentences together.  He's not writing yet, but I have high hopes.  He's interacting with his brother.  His eye contact is amazing.  And best of all?  He's got a SENSE OF HUMOR!!!!  He smiles and laughs and tries to get others to laugh.  I am absolutely head-over-heels in love with this child of mine, and I could not possibly be more proud of him.  His spirit is magical, and I wouldn't change a thing...

Derek now.

 

My Son the Superhero

I have mixed feelings about October.

On one hand, I love it.  I love fall and everything that comes with it.  The leaves turning brilliant shades of red, orange, gold and brown.  The cool, crisp air.  Pumpkins.  Crunchy apples.  And best of all?  My son's birthday. 

Derek was my Halloween baby.  When he was born, I was thrilled.  I thought that as he grew up, he'd LOVE having a Halloween birthday because he'd get to dress up at school and have parties on his special day. 

Halloween 2010--Derek refusing to wear the hat.  This was the last time I got him to wear a costume.

But I never expected Derek to be autistic. 

I see people post pictures of their children in adorable costumes and I can't help but be jealous. 

Derek hates costumes.  He can't stand wearing them.  Make-up or a mask on his face is out of the question.  So is a hat.  Each year has gotten progressively worse.  Last year, he refused to wear even a fireman's jacket made of fleece.  So my son went trick-or-treating as...you guessed it...Derek.

Derek doesn't understand the concept of trick-or-treating either.  He tries to go into people's houses.  And he doesn't like the candy.  He usually lasts about for about 10 minutes, much to the dismay of my other son--who LOVES Halloween. 

As a parent of a child who has a hard time with Halloween, here is a little advice for all of you who DON'T have children on the spectrum:

If a child doesn't say trick-or-treat or thank you when you give them candy, cut them some slack.  Maybe the child is nonverbal. (Derek never said a word last year.  I spoke for him.)
 
If a child searches through the bowl of candy, don't automatically assume he/she is being rude.  My son can't tolerate certain textures and will only eat smarties and suckers.  He doesn't know that it's rude to search through a bowl.

If a child tries to enter your house, don't freak out.  Especially if the parent is doing everything they can to control their child and is apologizing profusely. 


I know many of you are probably asking yourselves why I bother taking my son trick-or-treating at all.  Honestly?  I don't know.  Because it's his BIRTHDAY and I don't want to deprive him of thngs other kids get to do.  I also do it for his brother.  Tyler shouldn't miss out on things just because he has an autistic brother.  I also have hope that one day Derek will WANT to dress up. 

But this year?  I'm letting go of all expectations.  If Derek doesn't want to wear a costume, I won't make him.  He can go as himself. 

Because let's face it-- Derek is pretty awesome.  MUCH cooler than Batman or Spiderman or Luke Skywalker or any other person he could dress up as.  My son IS a superhero...