Light it up blue for Sawyer 

As I continue to share our story of Sawyer, we embark on our 3rd Autism Awarness Day this Sunday.

3 years? Wow.  Can’t believe how far he has come or where we are as a family.  It’s been like cracking down the walls to another dimension.  We find ourselves celebrating his success and those who are on the spectrum.

To celebrate 3 years, I ask those of you who read this to share it with your friends in hope to spread the word about #liub on Sunday.  Please hashtag #sawyerrocks so we can find you and your blue!!!!

The only way to create change is to take a chance.  Take a chance on Sawyer and #liub!

With love,


Did our dreams change for you?

Imagine the excitement of a toddler being on a slide. The pure joy of being able to climb that ladder and look down to see their mom, dad or loved one cheering them on.  It’s almost a right of passage for families.  All that would be missing is the white picket fence and s’mores on a summer night.

We had that.  Sans the fence, we were there. As matter of fact, we had it twice.  The first time with Evelyn and the second time with Cobe.  Our two children who we took their achievements for granted. They hit the milestones that you would expect toddlers to reach.  They both scooted/crawled, walked, climbed, jumped, had words, and could play just like any other child.  It was the norm in our household not an expectation.

But was it? 

Sawyer was the puzzle.  It was fitting for his newfound profile.  He couldn’t do all those things.  He could only do fractions of some if any.  It was heartbreaking.  Heartbreaking to think that he was different.  Heartbreaking to think milestones could be a pipe dream.  Heartbreaking to watch our perception of what different was.

It was impossible not to hyper focus on what he couldn’t do.  It was difficult not to blame Autism. It was an easy out.  However, we were brand new to the Autism world.  There wasn’t a manual that came with being on the spectrum.  

I hoped for one.  I really did.  Many of nights I wouldn’t sleep because I’d didn’t know what life would be.  I had dreams for him.  I had it for all of them.  However, my dreams had vanished. I didn’t even know what one could be for him anymore.  

Around the clock 

If it wasn’t making sounds for chocolate raisins, it would be going outside to swing.  If it wasn’t wanting milk, it would be to watch Mickey Mouse.  If it wasn’t standing and asking for the garage door to open, it was waiting for us to take Sawyer for a car ride.  If he couldn’t play in the basement, it would be a walk in the stroller.  This was our existence.  It never stopped from the moment he got up until the moment he slept.

If there was a wish for independence, it was so far down the road that even my 20/200 vision would never see it anyways.  It was pretty obvious to me that the quirkiness of Autism was something that I’d just have to get used to.

It really didn’t matter what was happening on a day to day basis.  The Rubin family was a family of 5 but most days it felt like we were under a Sawyer umbrella.  If we could help him be engaged in his day than everything would work out for the other 4 of us.  

If there were eggshells to walk on, I didn’t feel it. I just looked at is as normal for our family.  Those who saw us just looked at him as another 3 year old.  One who just had different interests. I just felt it was a challenge and some days were easier than others.

This is what I would tell people during the moment but this was far from being honest.  I struggled each and everyday for a long time.   There were many of days that I didn’t want to be home and deal with the repetitiveness.  There were plenty of times that I felt like I was an awful person for even having any thoughts of frustration or sadness.

I was exhausted and I continued to focus on the I rather than what my family needed from me.  Looking back, my own struggles didn’t help us.  As matter of fact, my wife, Kellie had to manage 4 of us rather than working together on just 3.  It was a position of darkness that I couldn’t see at the time.

I was going around the clock trying to get through the day but that was the problem.  I was only thinking of the I and not we.

Which road to take?

There was no settling in.  Sawyer had words but they weren’t entirely his own.  There was little content as an output, which for a three year old was concerning.

My mind would wander as I was scared that his language would never truly develop into a finite conversation.  Such as, how long would it be cute using the dialogue from Frozen to communicate the answer to a question?

It was almost like Sawyer was a young Jedi that had all this knowledge inside his head and was frustrated that we didn’t understand him.  This was our life.  

The fear of what ifs and questions about his future were overwhelming.  We had a child that would need an IEP (Individual Education Plan) soon and we were getting advice from everywhere.

A part of me didn’t want to look back and regret his childhood due to my own insecurities and frustration.  He was still a child and even with what I couldn’t answer, I did know what he loved to do.

So that’s what we would do.  We would get in my White Jeep.  We would take the roof off as Sawyer loved the wind blowing his brownish hair around like mad.  He would giggle as we able to speed up on a hill as he screamed out, “Libibty Hill!!!” That is Liberty Hill for the residents of Bedford, New Hampshire.

We would go to the park.  We would spend hours on the swing.  We would walk in rain puddles as I held him.  We would go out for ice cream.  We would marvel on how he would know where we were going based on our turns.

This was to me, the beginning of both appreciation and acceptance.  If there was a road, we’d take that one together.  

The hidden tour

When actors and actresses have movies to promote, they get to go on a press junket.  It’s more or less an all day question and answer session from any media outlet that is granted access.  Unbeknownst to me, I was living my own personal junket three months post Autism.

It started with telling the kids as they had their questions.  However, their dialogue was welcome compared to the non stop Rubin Autism Explanation Tour of 2014.  It was always lights, camera, action.

It didn’t matter if you were a friend, family member, colleague, or a stranger.  The questions and comments came from everywhere.  There was no escaping the conversation as I dreaded almost every opportunity to discuss the current state of Sawyer.

I heard it all.  From will he be ok? Are you sure he’s Autistic? Is there a medicine that will fix him? I bet he will be fine.  Does it run in the family?  You guys still need to live your life.  I bet he grows out of it.

These were just a few of the things I heard.  How I kept a smile on my face during this on going junket was a miracle.  I just felt like in time I’d either snap or hide my anger and sadness indefinitely.  Fortunately it was the latter as I developed a thick skin to what I perceived that others were attempting to either make themselves feel better or myself.

I can tell you right now that many of those conversations hardly made me feel better.  As matter of fact, it made me want to throw my phone away and stay indoors at any cost.  Other than the gym in which nobody there knew my story, I felt little refuge in my existence as Sawyer’s father.  

I wish this was all in my head.  However, it was happening.  I was front row each day.  It was my hidden tour and I wanted no part of it.