Life Looks Better Upside Down

Life Looks Better Upside Down

         

                    My first child had come into this world kicking and screaming two years ago. And the kicking and screaming didn’t stop there.  He was a challenge from the start.  We never knew what to expect from him from one day to the next.  It was a scary unknown time.

         It was April, the air was unseasonable warm, my bulging belly and aching back were just about all I can handle.  I just had 30 days left or wait was it 27. Well either way I couldn’t wait for May when the next bundle of joy would come it my life.  At least I’d hoped so.  I hate to admit it but I was ready to have an easy child. One that I felt loved me as much I loved them. One that was normal.  I was still sitting in the frayed woven green and white plaid lawn chair watching Jackson do his usual spinning, for as long as I will let him, behavior.  I have often wondered why he does this and other strange things.  I was supposed to get some sort of explanation for this craziness that had become my life.

         The phone call came and went.  I didn’t have an immediate reaction.  I guess I just  didn’t know what to think.  What is Autism?  I had never heard of it.  How do I fix it?  What do I do?  My questions endless.  I was confused and caught of guard.  A startling feeling isolation come over me.  I hung up the phone and stood there for a minute.  I was not really mad or upset.  I just went to the computer and googled this word that now labeled my son.  I was crushed and felt more alone than I had at any other point in life prior to that moment.  I wasn’t  ready to have a child with autism.  But I have learned that no one can prepare you for what you go through until there is a name to put with the insanity of your life.  A name to help you deal with and begin to understand your child. The name for a life long disability that will change your life forever.

         Two years earlier, on a cold blistery January morning,  January 25 to be exact, my  son Jackson came into this world like a bat out of hell. The doctors came in and said “Congratulations!!  You have a healthy bouncing baby boy.”  I was beside myself with emotion.  I was scared to breathe for fear that it was only a dream.  He was small, fagile, pale, bald, but absolutely without a doubt the most beautiful thing that I had ever seen.  I held him close and took in his aroma like the smell of fresh baked cookies.  It was hipnotising.  I was in love.  It’s weird how people tell you what it will be like when you have your first child but this is something you can really only experience for yourself.

          The way he gazed into my eyes with out a hint of fear, trusting and innocent. I was the happiest I thought I would ever be.  I was finally a mother.  Something I had set out to do since I was a kid. I had enough motivation and desire, I thought I could move the heavens. Most of all, I had all the love a mother could give.  My life complete.

.          The weeks following Jackson’s birth were very typical.  Sleep. Cry. Change. Feed. Repeat.  Midnight feedings were my favorite, I had him all to myself, peaceful, quiet, soft, and loving.  Learning new things about each other every minute.  Our heartbeats seemed to be in sync me breathing in his breath and he mine.  We were one and always will be.

         Hard to believe ninety days had already past.  Sleepless nights and midnight feedings (unfortunately), were coming to and end.  Now just seeing the pediatrician monthly instead of weekly.  Jackson, or Jacks as I love to call him, seemed to be happy and healthy, hitting all his milestones.  I couldn’t ask for anything more.  Until a beautifully sunny, breezy and clear warm afternoon in June.

         Jackson was just about six months and everything seemed to be going pretty smoothly.  We had a fair share of sleepless nights, endless nightly car rides to soothe the non stop cries a baby can only produce. Tantrums and power struggles, you know the usual.  Shawn, Jacks’ father, Jackson and I were in the car heading home from one of the few family trips to the park that we were able to make.  The windows were down so the warm breeze could circulate through the car and the usual classical music was playing on the radio.  (all the baby books said playing classical music for your baby will make them smarter so we figured what the hell ) We were all relaxed and tired from a full day of swinging, sliding, running, and playing.  It was a peaceful sleepy quiet ride home when all of a sudden an absolute chilling scream came from the backseat and then another and another.  It was all Shawn could do to pull over safely so we could see what was wrong.  I jumped from the car before it was even stopped.  Flinging Jacks’ door open with a frantic force that later left a bruise on my lower back. I looked at Jackson and he was shaking his head back and forth violently, covering his ears, and screaming uncontrollably.  I began to take him from his car seat thinking that maybe it was pinching him or he was sitting on something but the more I touched him the worse it got.  I buckled him back in as fast as I could, jumped over the top of him so that I was positioned in back passenger seat next to him slamming the door along the way, screaming at Shawn to get to the ER now!! 

         I didn’t know what to think.  All I know is that I just wanted to make “it” stop hurting him.  Whatever “it” was.  Shawn weaved in and out of traffic running red lights cautiously, speeding through residential streets if that was faster.  Whatever it took, he did, to gets us to that hospital as quickly as possible.  We came flying up to the emergency room doors, Shawn slamming on the breaks with just enough force that I only slid part way off the backseat.  I jumped out grabbing Jackson with Shawn bring up the rear leaving the car running and doors open.  Remember, all this time the screams of Jackson and the chaos of the unknown had been going on for us for what seems like a lifetime, even though it was only moments since we entered the ER.  The nurse came running asking “What’s wrong?  What happened?  Calm Down! Breathe!”  It was all I could do to catch my breath to explain to her that I didn’t know.  “Just help him!! What’s wrong with him?! Help him!!”

         They immediately took us to a room and a nurse came in asking us all kinds of questions.  I couldn’t concentrate on anything but my son.  They wanted answers.  I didn’t have any and I didn’t  care about what they wanted.  Finally Shawn took them outside leaving me to be where I needed to be, with my child.  The doctors came in.  They started to examine him, checking his vitals, ears, nose, throat, etc… Somewhere in the middle of all of this Jackson has started to calm a bit and the screaming started to turn to crying and then ultimately to quiet.  It came and went all in a matter of hours.  We waited at the hospital for random test results, most importantly, we found out there were no ear infections, colds, soar throat, nothing.  What?! Nothing.  What do you mean, nothing?!  An episode from a 6 month old like that can’t be nothing.  It has to be something.  But what?  It would be a couple of years before this question would be answered.

         His eyes empty, distant it seemed as though he never saw me after that episode, the first of many that were to follow. His body gummy rubbery feeling.  His skin felt like sandpaper because of the exema that had now reeked havoc on every inch of his body. 

He would recoil from my touch as though my fingers were covered in acid and every time we made contact it burned more and more.  What is wrong with him?  More importantly, what is wrong with me?  What am I doing wrong?  Why can’t I fix it?  The questions kept on swirling around in my head and I couldn’t make it stop.  There didn’t seem to be any answers or relief. 

         My daughter now 8 months old, tagged along to every single therapy, doctor, hospital and speech appointment there was.  I was always so proud of her for being such a trooper realizing life revolved around Jacks, even at that age.  It was not his fault this was just the way it was.  We all just began to except it.

         He would kick and scream uncontrollably for hours.  He started banging his head on things like the wall, his bed frame, the floor, really any hard surface he could find.  Sometimes so hard that he would break his head open and we would end up back at the E.R.  It was kinda funny the hospital staff began to get to know us by name our visits became so frequent.  He  would bite, scratch, hit, slap, throw things at me, you name it he was capable of it.  He would hide under the table or in the closet for no apparent reason.  We were unable to get him out for hours.  Nothing seemed to make it stop.  I was trapped in the house for days for fear of an episode of this weird unknown behavior.  I wouldn’t know what to do if I was in a grocery store or at the bank.  I mean how do you explain to a complete stranger a behavior that you don‘t even understand yourself?.

         I think the most difficult symptom of it all was that Jackson was almost two years old and I hadn’t heard him say a single word.  Not mommy, daddy, chocolate, carrots, Nothing! Not a damn word.  What was happening? Why him?  What is happening to my child?  No one seemed to have any answers.  So again I wait.

         .  He refused all food that was not brown in color and even then he really only ate bananas, applesauce, and chicken nuggets from Mc Donald’s.  A funny little side note, for almost a year I went to Mc Donald’s 3 times a day just so Jackson would eat, chicken nuggets, French fries, and sprite.  If your wondering how I did this for breakfast since you can’t order lunch until 10:30, a nice little old lady helped me everyday, explaining to her manager what the circumstances were, they had chicken nuggets, French fries, and sprite every morning at 7:30 am.  She was the first person who tried to understand this craziness that was consuming my life, my sanity, and my happiness.  Even with her effort and mine it didn’t matter.  Jackson was admitted into Monroe-Myer Institute.  It was a feeding clinic in Omaha that would become Jackson and I home for the next three months. 

         Each day consisted of hardcore therapy.  No not the kind where you sit on a couch and boar the world with your problems, we are talking strapping him in to a chair and literally force feeding him.  They even wanted in insert a feeding tube but later decided that it was not necessary.  His health was dwindling and so was my morale.  I was not feeling as positive as I should have been.  I felt as though I hadn’t slept in years.  The stress of the unknown had aged my face ten years and I was still no where close to finding an answer. 

         Jackson could not hold a fork of spoon without dropping them.  He couldn’t stand the tags in his clothes or the seams in his socks. I was constantly going to the store or sending someone else to buy new clothes or a different color pair of socks because it was the only thing that would calm the insanity.  Some people may read this and think to themselves, “Well just stopping spoiling your kid and maybe he wouldn’t cry all the time.”  To you I will say you have never met a child with autism.  Jackson just preferred to be left alone in his world of silent curiosity and empty eyes.  Unconcerned with his surroundings or the people in it.  As long as you left Jacks alone he for the most part was controllable.

         We started communicating with pictures and sign language.  We attended speech therapy twice a week.  Then there was physical therapy.  We came to see Brandi also twice a week.  She’s the physical therapist and probablaly the first person allowed in to Jackson’s mind ever.  She had a way with him that put a spark in his eye.  He seemed excited to see her and this excited me.  Next we see Diane, she like  Brandi is a therapist.  She works with Jacks on his motor skills. Teaching him to hold an object in his hand or how to jump up and down.  We also saw a behavior list and a nutritionist.  The list goes on and on.  The work never ends but neither does the progress.

         Jackson is now five years old.  He is getting ready to go to kindergarten and can speak well enough to tell you all about it.  He’s food preferences are not much better but at least McDonalds isn’t getting so much of my business.  And every day he teaches me how special life is and that judgment should never be passed on anyone.  Autism has changed my life and turned it upside down.  But as Jackson would say “We like upside down.”