The glass box

Sawyer had two hands, two feet, eyes that had vision, a healthy heartbeat, and possessed every other physical characteristic of a 3 year old.  This rundown was a reoccurring message etched in my brain as we continued to research what he needed or for that matter, what we needed as a family to move forward.

The inner dialogue of these unanswered questions became dreadful.  I just couldn’t buy into finding answers as being on the Spectrum wasn’t one that provided a textbook.  There wasn’t a table of contents that had a 3 year old Sawyer in fine print.  His abilities had yet to be seriously determined or defined.  


I refused to compare him to other Autistic children because to me, he was Sawyer.  I just kept telling myself that if I believed in not comparing Evelyn and Cobe to others that regardless of what Autism would bring to us, I wouldn’t spend my life comparing him to his Autistic peers.  To me, I would be creating an imaginary bar and like the other two, I wanted Sawyer to define Sawyer.  Nothing else. 

Perspective is easy when you’re alone.  You can become your own superhero.  You can build yourself up to not be broken.  The words come easy and those few minutes can convince you that you’re right and not be broken.  I felt that those minutes alone; reading about Autism, reading about what it meant, understanding that our family could figure all of this out.  It was a jolt of what could be.

The challenge was that once people were around, my entire outlook changed.  It was like my moments alone were tilted in a jar.  It was like I forgot my moments of being fearless and doubt flooded me.


This was how I felt everyday for months.  That moment when someone told me that Sawyer was fine.  The moments that those who didn’t know him would say if we did A that B would happen.  The moments when people who didn’t know him would somehow be experts on what he was or what he could be.  

The noise was loud.  I couldn’t ignore it.  I was in a permanent glass box and felt trapped.

Time never stops

The first few weeks of the world of Autism seemed like months.  The days seemed longer like it was my personal daylight savings time clock.  Regardless of the day, I found myself in quicksand without any lifeline to reach out to.

In the back of my mind, I couldn’t stop to think about how my two other children could understand what I couldn’t explain.  How would they respond to other children recognizing that their younger brother was different? It may have been my insecurities but the fear inside me existed.

There had already been times when we were out and kids would stare at Sawyer.  Complete strangers would approach the kids and wonder why he wouldn’t play or talk to other children? I’d jump in and run interference and attempt to normalize the situation the best I could rather than make excuses.  It was draining but I needed more time.


My biggest worry was more so placed on my daughter, Evelyn.  She was already battling some severe anxiety and it was at the point in which she was a frequent visitor to her guidance counselor at school and attending therapy weekly.  The last thing I could even consider was her getting wind that her baby brother has special needs.  

At this point of her life, she was so scared of things that she couldn’t control.  Simple things like a ball rolling down a driveway would lead her to panic.  Even picking up a rock from school and bringing it home would lead her to a world of guilt.  Bedtime alone would be a marathon process as getting her to settle could take hours, which the lack of sleep would be difficult for the entire home.


One thing had become clear.  There would be no pause button.  Evelyn would know about Autism at some point.  Regardless of what she was working on in her life, she would need to know.  We wouldn’t run and hide from reality. It would be a family decision to let her and for that matter, her brother Cobe know.  However, time wouldn’t stop for us and the show had to go on.

Stuck in neutral 

Coming off the emotional high of celebrating our anniversary was just what I felt that our family needed.  We had a day of laughter, reminiscing of our day of union, stories of those who had passed, and the thoughtfulness of many who we had heard from throughout the day.

It was a reminder that we forgot about ourselves, our marriage, and even our other two children in some respects.  It was humbling that just the diagnosis of Autism made me generate tunnel vision in a way that I couldn’t comprehend.


It was like I was looking at a painting of our family with a crowd of friends and though we were looking at the exact same thing, we viewed the painting entirely different.  

I had a fear that I’d spend the rest of my life explaining what I saw.  It was that scary.  It was that overwhelming.  As many times, I’d tell myself that I could handle what was to come, I had my doubts.  I had my vision of what could be.  I had my vision of what would be. 

This is where my thought process went for me.  Even a day of celebration would turn into darkness by night.  As much as I thought I could handle the emotion, I found myself in one giant circle of sadness with hidden tears. 

How could I have wasted such a wonderful day by the unknown? How did I get to a place that I couldn’t fully enjoy the moment because of what I couldn’t control?  If it was a time for me to be shaken awake; I don’t know if it was possible.  I was stuck in neutral and waiting to break through my internal roadblocks. 

Awoken

Within a matter of weeks, my desire to find something to carry me towards hope was dwindling.  The things that I enjoyed faded regardless if it was working out in the morning hours or chatting with those close to me.  The things I looked forward to seemed like chores.  I just wanted the time to pass until I could get my feet back under me again.

I was given space by those around me.  However, I felt like an outsider.  I felt like I had autism on my forehead along with a laundry list of my insecurities that were all my own doing.  If I were a movie, I would have turned away from the disaster which I had become.  

Sawyer on the other hand was his happy self.  He strutted around the house in his pajamas. There were his innocent moments of resting on a pillow to gulp his milk.  Or the pantry door being opened every minute as he tried to reach for his bag of chocolate raisins.  His world was his own as I stared at him to decipher what his world was.


In need to come out of exile, I thought our family needed a spark.  Our 10 year wedding anniversary arrived and I arranged for Kellie and I to bring the kids to the site where we got married.  It was my desperate attempt to unify us in a way that could carry us in a time of need.  I hoped that it could be a reminder that our family was whole regardless of what we were facing.  

So there we were.  10 years later.  The same venu.  The same sunshine that we said our vows.  A moment that pictures were snapped and would reside around our home.  This time with our three children who we dreamed of having. It was our moment to connect.  


As the five of us posed for pictures and all the efforts to get Sawyer to smile.  It reminded me that regardless of where we were, we were together.  We made it here.  For the first time in weeks, throughout the questions, through the tears, I was awoken.

Cobe’s dad too

As I was stuck in neutral that first week, my perspective was all over the map.  Yes, I had a son who was autistic.  Yes, I didn’t know what to make of it.  Yes, I had zero ability to articulate my thoughts and feelings at the time as I prepared to help my family understand the life of raising a child with special needs.  What had been repressed in my mind, was what we went with our middle child, Cobe years prior that was my saving grace.

Cobe came into the world like a lightning rod.  It foreshadowed his zest for speed and larger than life persona.  He was the first Rubin boy born since myself in 1977.  He was the successsor to the family name as my niece and daughter were the only children in the family.


During Cobe’s delivery, his shoulder got stuck, which was later described as Shoulder dystocia.  All I remember that morning was mass panic in the delivery room and a lot of blood.  Kellie was in pain and thought she was leaving me with two children. Another opportunity for me to understand the significance of what was happening but I was too focused on telling myself that everything would be fine. 

However, that’s who I was as I refused to let any moment get to me. I can only remember that the clock read 7:43 in the morning.  It wasn’t pretty but he had arrived.  Our family of three became four.  With the size of Cobe’s blue eyes, which he had to grow into, we were madly in love with him.

The dilemma with Cobe was that it was always something.  He had pneumonia as an 6 months He pushed through it.  He was diagnosed with asthma at 10 months.  He dealt with it though he hated treatments. He fell down a flight a stairs at 14 months old.  He didn’t break a bone and popped up sucking on his pacifier.  That’s who he was.

However, he just wasn’t growing from months 9-18.  This is when our pediatrician was very concerned.  She recommended that he should be tested for Cystic fibrosis.  We were absolutely floored. 


Our soon to be 2 year old could be possibly sick off and on for his entire life? The life expectancy of someone with CF was south of 30 years old and it scared us to our core. How could this even happen?  It was something that I never believed would happen to him.

As we sat in our pediatrician’s office, we were determined to know Cobe’s fate.  As Kellie’s tears ran down her face, my heart pounded anticipating a life changing moment.  Whatever it would be, we’d be in it together.  Cobe didn’t have CF.  We breathed a collective sigh of relief.  We would just be able to continue to monitor his failure to thrive, as his extra 300 calories of fat and protein,which was a two year climb to crank up his BMI.  This led him to not need to see his GI Specialist anymore.

It was a world without autism. It was a time that I was just Cobe’s dad too. It was also a reminder that I was a bit stronger than I thought I was. 

Dreams of our fathers

When the downpour of duress struck me that spring, I found myself searching for anything to hold onto that could carry me through my day.  

I attempted less time on my phone or computer because it led me to window upon window of Autism.  Quite frankly, I wasn’t ready to read anything or even comprehend any reality of where my thoughts or feelings were.  


I thought my perspective on life was in check because I could say the right things.  However, with the notion that my son was different than other children, I questioned my own ideas on what normal or different even meant anymore?

Everything is simple until you have to walk in a different pair of shoes.  The struggle was I couldn’t forecast what shoes I’d be walking in the next morning, nevertheless years down the road.  The uncertainty of it all drained me and I was sinking.

Would I be able to have any conversations with Sawyer? Could he and I play catch outside? Would he ever be able to use the bathroom himself? Would he have friends? Could he fall in love? Could he articulate what love even meant? It was a windfall of emotions and self pity. These were my thoughts that I refused to share out loud.  I felt awful for even thinking them.

Not for one moment did I say “why me?” There wasn’t a “why us?”  I didn’t want a magic pill that I wanted him to take to change him.  I was just a dad that didn’t envision the deck of cards that we were given.


These were my feelings within a matter of days.  It was an internal struggle as his father. I had dreams for someone who I didn’t know or understand.  Those were all mine and I felt broken up about it.  

The others 

Life was systematic once my workday kicked in.  I could always be present at work.  It was my church as the outside world didn’t exist.  The activity of the lives of the students kept me going as my goals, hopes, and dreams for them didn’t waver.  If I felt like a failure as a father, I felt like a superhero as an educator.

The feeling of having your own child and the fear of what his life may be was by far the saddest moment that I have ever encountered.    Forgetting that feeling while working kept me going and it was like I was separated between two timelines.  

Timelines was how I would later rationalize my world.  This is what I thought about that first drive home from work after a weekend of sadness and confusion.   The only way I could cope was to just compartmentalize my life.

From my point of view, my work timeline was my rock.  I could count on it always being there for me.  I had zero reservations about sharing my news about Sawyer.  Nothing inside of me worried about their reaction because I knew that I would have nothing but support.

Looking back now, I feel that it made my friendships with a select few even stronger though I would only share what I felt like I could.  

My timeline at home was less desired.  I was worried to get home because of how unpredictable it could be.  I wanted to make things easier on my wife Kellie but that was my problem.  I wanted to just fix things.  All she needed was for me to listen.  I just didn’t know anything other than fixing.

My daughter, Evelyn just wanted her dad.  The person who would read to her, play games with her, and love her like she was the only person on the planet.  

My son, Cobe just wanted his dad too.  The person who would play catch outside, watch movies, act out scenes from movies, and cuddle on the couch.

It was amazing what went through my head during that 30 minute commute that Monday in April.  The time of year when the rain washed away the snow.  A time when the kids could just open the sliding door to play outside again.  

I wanted that time too.  I just didn’t know how to merge my timelines together and be there for the others.  

Going under

As I went back to work, I had about 20 minutes until the students walked in the door.  I had zero problems separating work and home.  Once the bell rang, I was Mr. Rubin. For those 20 minutes, I was just Jon.

I thought about holding Sawyer for the first time. It was like playing with house money.  I already had two beautiful, healthy, and happy children.  They reached all of their milestones whether it be walking, talking, playing, and making friends. It was all par for the course as I thought it was automatic that he would do the same.


I was on autopilot in my thinking.  Even from the moment that the doctors told us that he had hypospadias and he would need a surgical procedure in the coming months, I just looked at it as it was not a big deal.

In the grand scheme of things, it was minor.  He had surgery months later.  He recovered.  We moved on.  

The problem was I moved on and just didn’t see the significance of what was happening.  My baby was having surgery.  He was going to be under anesthesia.  He would be on an operating table as we waited.  

As Kellie looked at me, I wasn’t the person she needed me to be.  My attitude was supportive as I was there but I wasn’t present.  I had realized that we were in a way divided.  It was a path I continued for many years after.

I didn’t understand how to be Sawyer’s dad or Kellie’s husband.  I was under the impression that I knew who I was, I was under the notion that I would figure it out, I was under a rock in terms of reality.  The crawling out seemed too deep to overcome.  I was in fact just under.

The suitcase 

In the book The Tiger Rising by Kate Dicamillo, the main character Rob uses a suitcase to hold in his emotions since the passing of his mother.   It so happened that it would be a book that I would later use in my classroom of 4th graders in a quest to understand character analysis.  However, as I look back, there were many parallels between Rob’s suitcase and my own.



After a weekend of digesting the diagnosis of Sawyer, I carried on with my life.  The problem is that I slowly came to the realization that my suitcase wasn’t just one, it appeared that I had multiple cases of luggage with me that he built up since Sawyer had been born.  It wasn’t depression, it was the thirst for exile to help me cope with what may come my way.

I was far from a private person.  I often enjoyed sharing what was going on in my life until we were noticing that Sawyer had been different.  I didn’t even notice I had done this until that first drive to school when memories flooded my 30 minute commute.  I remember sharing so much less of Sawyer than the other children.  When friends or family asked how he was, I would give a generic answer.  Truth be told, I wasn’t embarrassed, I just wanted zero part in others trying to tell me that he would be fine.

For me, I just didn’t think that a boy who ripped pages out of a magazine repetitively, or couldn’t walk until 2 years old, or had any words to speak would be fine.  I wasn’t one to think that he would wake up one morning, run downstairs, and play like other kids.

This hurt me because I couldn’t fix it. The once high energy, passionate, and engaged individual had morphed more into a loner.  I would enjoy putting my phone on silent, keeping my ear buds on in the gym even if they weren’t working, and find ways to avoid social gatherings at all cost.

Pictures can be the biggest fraud that the eyes can see.  In a still shot, my smile looked the same.  It was possible that even in the mirror, I just couldn’t see what was happening.


I don’t know how it looked? People may have assumed that I was just busy being a dad? They could have thought that I had become the guy who woke up with the birds, lifted weights, taught 4th grade, had a wife, three kids, and a mortgage?  They were partially correct.  Unfortunately, I had become a different person as I fought to understand my son and find myself in the process.

My suitcase was full.

 

 

 

 

 

My son is Autistic

As the days passed, the mood around our household took a shift.  It would rise like that of a hot air balloon of relief and ashes upon ashes of soot.  To say our emotions were in check would be false.  

There was no denying that we were over our heads.  However, my wife Kellie and I spent many of moments together playing the game of connecting the dots of Sawyer’s inevitable diagnosis of Autism.  

Such memories of Sawyer slamming his legs on his bed sleeping as an infant through the monitor was in fact an early red flag for us.  At the time it was a cute attribute of our baby.  However, it was the first moment that indicated that he felt comfort in pressing against material with all of his power.  A sign that he was calmed by external stimulation. 

Swapping such stories amongst a young family was tiresome as we didn’t want to reveal much around our other two children.  So we did our best to keep our conversations amongst the silence of late hours.  The problem was that we were so emotionally drained those first few days during his initial diagnosis that our communication was survival rather than pure dialogue.

We leaned on one another as we knew that we had to be a united front.  We had to make a plan and not panic.  We had to be careful on how we shared any information to not open ourselves to anymore heartache.

The reality was that we saw little light.  Shuffling through websites was a huge mistake as we were on an Autism overload.  It was like we were heading to a courtroom to defend our child though we had no hearing scheduled.  We were chasing ghosts around a clock that looked different to both of us.  

My son was autistic and the road to understanding what that meant was just beginning.