Looking back hurts

It may have been months later on the calendar but the knowledge that was the now ruined my past.  I just couldn’t escape the thought of how difficult life was for Sawyer prior to us getting his diagnosis.  If sleeping wasn’t a challenge enough as thoughts ran rapid the moment my head hit the pillow, I just couldn’t run away from the guilt.

I couldn’t stop thinking about our trip to Disney World as a family.  The place that families look to as the most magical place on earth.  However, for the Rubin family, it felt like a forced venture.  

Nothing seemed quite right that February for us.  It was almost like we were checking a box on what families do together rather than the pure joy of a vacation to a dream destination for all families. 

I would say that it was initially a rush of excitement once we got on the plane, once we landed, once we got our colored Disney bands. However, the moment we got into our room, we were an exhausted bunch and our trip hadn’t even started.

From the moment we got on our shuttle to the park, Sawyer cried.  He was scared.  I didn’t know why, and all we could do was hold him.  My only guess was that we took him away from his comfort of home and since he had very little to communicate with us, he was at a loss to tell us what he needed.

All I could think about was this little boy who loved Mickey Mouse, had zero interest in the place where Mickey lived.  All he wanted to do was go home and not get out of his stroller.

I felt for him.   I felt like we were trying to make him enjoy something that he didn’t ask for.  The amount of guilt I had as he cried while eating his goldfish in his stroller while his brother and sister laughed, went on rides, got their faces painted, was just brutal.

I may not have known that he was Autistic during that trip but I knew that something was there.  I knew that he didn’t enjoy the trip and I made him go.  It broke my heart at the time and carried with me months later.  It hurts to look back though I was fighting to move forward.

A birthday wish

Dear Sawyer,

Today you turn 6.  Though my writing has been done in order from your arrival, I feel that it would only make sense to write about the now as I hope that you one day read everything about you from my eyes.

It’s impossible to not think of how far you have come.  Just the fact that you are in a Kindergarten class with other kids makes my heart smile in a way that I never thought it could.

From the moment you wake up, you run down your list of questions of the day that though predictable make me always want to answer them in hope that our exchange will only grow.  However, our conversations make me feel so proud that you can express yourself the way you do.

Some of your new favorite things to do this year is to cook, make hot chocolate, watch new movies, read books, do homework, feed Oscar, listen to music, and have iPad time with your brother and sister.  All of these activities are a far cry from a boy who just a short time ago would only eat chocolate raisins and watch Frozen.

This was also the year that you would get out of your bed on your own and come into our room to snuggle mommy or just tell us both to get up!  

Regardless of the milestones, you continue to have a love for life that makes our family complete.  I can’t predict the future but I can tell you that your past has been the prologue to a great story. A story that has no limits as you make me believe that anything is possible and nobody should ever close your book.

                                                     I love you,


 blurred vision

My timeline became mashed together as I began to look back.  I could vividly recall Sawyer’s birth.  I remember Kellie insisting that the kids didn’t look like ragamuffins when I brought them to meet him for the first time in the hospital (which i apparently wasn’t successful at).  I even remember 2 year old Cobe getting the biggest kick in asking for chocolate pudding just minutes after meeting his baby brother.

The problem was after those events took place, It was like a coma. I was only awake through pockets of three years.  I remember the highs and the lows but only through my own lenses. 

The most difficult part of life at that time was I had zero balance.  I loved my children, I loved Kellie but love was hardly enough to get past the emotions under our household.  Words were just words as actions were few but far between.

All I can remember was being in the car one day as a family.  It had to be at least 2 months after we received Sawyer’s diagnosis.  I know Kellie and I had talked about the right time to tell the kids about Autism. 

 We mutually agreed that we wouldn’t shelter them from Sawyer’s world.  Unbeknownst to them both, their guidance and modeling of behaivor would be a huge support to him.  Whereas their love, support, and empathy could unfairly break our home.  

So there we were just driving along.  Just talking about nothing of substance.  We just happened to be in the same place, at the same time, and for all accounts, the right time to share news that without the kids knowing would become a building block to our future as a family.

I remember Kellie asking the kids questions.  I remember the kids asking if he would be OK.  I remember listening to Evie ask if she could catch Autism like an illness.  And it’s all I can recall from nearly 30 minutes of conversation. As hard as I tried, I just couldn’t attend like I wanted.  It was blurred vision at its best.

Can he make a friend?

When you have two children who are social, excel and enjoy the activities they are in, and are gone for hours with other children, you tend not to think of it being any different for your third child.  Unfortunately for us, it was a gigantic concern as we attempted to understand the world of Sawyer.

At 3 years old, it was abundantly clear that his ability to connect with children his own age just wasn’t there.  It was like we had a one year old who had the appearance of his peers but his appearance was deceiving.  

Nothing was more heartbreaking than other kids approaching Sawyer at a playground and asking him if he wanted to play or for us to attempt to explain that he just couldn’t.  I remember our own children trying to figure out why he would only go on the swing and flap his hands with excitement.  

These were groundbreaking moments for us because we could only watch and hope that there would be a day in which he would have the ability to connect with his peers in any sort of manner. 

Nothing hurt more than seeing kids his own age doing what he couldn’t do.  Even having two children who could, it wasn’t enough for us.  It just didn’t seem fair that he couldn’t.  

It was equally unfair for us to even think that way but that was the world we were living.  Regardless of what words of encouragement we were getting, our eyes weren’t stupid.

We were terrified that he would live his life on the outskirts.  We were nauseated at the thought of a life of parallel play. All we wanted was for him to have an inkling of conversing with another child and the hope of making a friend.  

Around the loop

As my emotions swung like a pendulum, the craving for normalcy was a primary goal each morning. All I could do was watch Sawyer’s every move.  I’d watch him eat, I’d watch him be propped on a pillow and chug his milk, and I would watch his lips as he would script through words in his attempt to communicate.  

It was like our own personal Groundhog Day.  From the moment he would wake up, he had his own individual checklist.

A typical Saturday morning at the Rubin’s…

7:05:  Sawyer drinks his milk while watching Mickey Mouse Clubhouse.  However, he needs the cup with the straw that he likes.  Typically the straw built into the cup that is mangled by Sawyer’s biting on it.  

7:15:  The pantry door is swung open for his chocolate raisins that are out of his reach.  This doesn’t stop him from stepping on anything to get them.  There aren’t any words other than “chocolate raisins” screams.

7:45: We attempt to steer Sawyer away from Mickey shows so we can engage him into playing in the playroom.  The problem is that Sawyer can’t play yet!  The puzzle pieces aren’t fitting into the correct places and he loses interest within minutes.

7:48: Sawyer goes right to the sliding door and screeches “swing” over and over again.  I hesitate to take him out because once he gets on the swing, he will stay on it longer than Nomar Garcipara would adjust his batting gloves in between pitches.  It’s a marathon!!!

7:52:  I crack and take Sawyer outside and put him in the “yellow” swing.  At this juncture in Autism, we begin to learn that everything has an association to color.  

8:33: I’m so ready for Kellie to come out and take over.  However, I do realize that after a long week at home, she needs as much time away from this routine as possible.  (For the record, I didn’t do this nearly enough).

8:45: When I get to an hour of pushing the swing, I hit my breaking point.  I converse with Sawyer about getting off the swing and going inside.  He spends the next 5 minutes shouting “swing” but I gently slow him down. 

8:50: I take him off and he wants to stay outside.  I’m lost on what to do.  All he wants is the swing but I have to give him a chance to try new things.  

8:51: I take him around the house and he knocks on the front door.  Kellie opens it and greets him with excitement.  He runs inside, through the garage, onto the rocks, onto the grass and back to the front door.  This would happen over and over.  This was his moment as he discovered something new. 

It was only the morning but the loop was discovered.  However, it was the beginning of some independence.  It came in the form of a circle.  It was the birth of “the loop.”