What if there was a cure?

Jon, daddy, Mr. Rubin, Jonathan, Rube, and Rubes are all names that I identify with. I hear all of them. I respond to them. It's easy to get my attention despite what my wife may report!
I can make eye contact, I can ask questions, I can have a conversation. These tasks are easy for me. It's not work nor is it a challenge.

I'm fortunate to have friends. I have people who I have always been able to identify with. Regardless of my age, it's never been difficult to connect with others in this realm.
The aforementioned is work for Sawyer. None of it comes easy. It was painful to watch, which made me wonder how painful it was and is for him.
I remember one morning I took all three to the park as we were killing some time as our house was having a showing. Cobe and Evie ran off to play as Sawyer wanted nothing but the swing.
I pushed him for awhile as my eyes searched for the other two. Cobe gave me a big thumbs up and Evie smiled. All was good.
A little girl around Sawyer's age got on the swing next to him. She said hello. Sawyer smiled. She continued to talk and asked him questions. Sawyer began to stim with excitement.

She asked me why he didn't have much to say but he can and could talk. I told her that he has autism and somethings are hard for him.
"What is autism?" She asked. I gave my best 4 year old answer that I had, which explain his struggles.
"So is he sick?" She replied. I tried to explain that it's more of a condition rather than an illness.
"Is there a cure?" She responded. Though I said no and as they continued to swing, I had a few minutes to digest that. I truly never thought of a cure.
The little girl went on her way. I continued to wonder if families with autistic children dream of a cure?
I just couldn't imagine Sawyer taking a pill and waking up one morning and being someone else. If that happened, he wouldn't be Sawyer anymore. It would be someone different.
After 40 minutes of pushing him in the swing, Sawyer told me he was tired and ready to go. Maybe it took all that time to tell me? Maybe he as I suspected was having fun? Regardless, I didn't want a cure. I just wanted Sawyer.

Sense of direction

Time to me was considered constant.  Looking at a clock and watching it tick would only be a waste.  Life had to happen and the world of autism had to go along for the ride.  This was my internal view of things and I finally wasn’t feeling the weight of insecurities that hounded me for a long time.

Getting Oscar brought a breath of fresh air into my life.  I struggled with finding any connection with Sawyer other than pushing him on a swing, giving him goldfish, watching Mickey Mouse Clubhouse, or going for a drive in a car.  It wasn’t a very fulfilling existence.  I had zero clue on how to connect with him.

However, we had the pug.  He was like a bridge for father and son.

With our house on the market and my older two on constant play dates, Sawyer and I were on our own a lot.  We had to make ourselves scarce as house showings were in full throttle and with my wife working, we went on many adventures during my summer off prior to the school year starting.

It didn’t matter the time of day because the moment of got Oscar’s leash, Sawyer would ask if we could take him for a walk,  It was another routine for autism but one that brought me comfort too.

These walks provided me with many things.  I was blown away on how Sawyer knew are neighborhood based on the color of the houses.  He could recall where to go based on a house color.  He knew what right and left meant due to this.  If I wanted to go a different direction, he would correct me by saying, “the brown house is this way, daddy.”

He could take me around a neighborhood based on house colors.  It opened my eyes to how bright he truly was and how he must be seeing things in a way that I could never understand.

How much was he taking in during our car rides?  Does have an internal grid based just on color?  This was fascinating.

Oscar didn’t seem to mind.  As long as it wasn’t too hot and we didn’t go to far, the pug was loving these expeditions.

Sawyer’s sense of direction was more than understanding where he was, it gave me hope that he could learn.  However, we were learning together.

Oscar, welcome to the neighborhood! 

My late cousin always told me that having a dog to call your own was a right of passage.  He thought every person who didn’t have one was missing out on the bonding experience of a lifetime.  Just the thought of having a dog for our family was such a pipe dream that I couldn’t compare the feeling to anything.  However, the words of my cousin were usually those of the gospel.  He was in fact one of my favorite human beings that ever existed until his unexpected passing.

In some ways, I found myself honoring my cousin’s ideas.  Granted he was more of a rated R type of individual so I was excited to have an actual G rated idea that could work for my family.  Having a family pet was as pure of an idea that Jason ever articulated.  I couldn’t believe that it was becoming true in the Rubin home.

There wasn’t very much planning when it came to Oscar’s arrival.  We had less than 10 days before he would join us.  That was 10 days of prepping Sawyer that a living animal would be with us and what that would mean.

This was quite the crazy time for us.  We decided to put our house on the market so that was another layer of transition.  As a family, we wanted a home with more charm and space to fit our family and that decision was made prior to Oscar even being on the radar.  Sometimes you just have to roll with the punches.  Easy to say but autism and rolling with punches don’t go hand in hand.

Sawyer had a ton of questions about all of the above but Oscar was the most pressing topic rather than moving.

“What color is Oscar?”

“Does Oscar talk?”

“Where is Oscar?”?

“Does Oscar have shoes?”

“What color is his eyes?”

This was Sawyer’s script the 10 days prior to his arrival.  I would love to say two years later that these questions are a thing of a past but it comes up all the time.  I think that Sawyer gets comfort from the perseverating.  Maybe this was and is autism?  Maybe it is being anxious?  Maybe it is both?  I do know that is very much a constant that requires a ton of patience.

We did make it past those 10 days of waiting.  We had a giddy household waiting by the window for Oscar to arrive.  Sawyer and I were glued to every car just waiting for one to turn in our driveway.

It was like a movie to see that pug’s head sticking out the window that July afternoon.  Sawyer jumped for joy when I said he was here.  Finally, Oscar made it to the neighborhood and I know Cousin Jason would have been proud.

Wait, you think we should get a dog?

As a family, we were staying above water.  Sawyer was in a classroom in which was giving him the opportunities to succeed both socially and academically.  If the months prior were a flood of despair, we somehow were able to climb a mountain of hope.  Was it possible that we were turning some sort of corner?  Could a wave of success be our future?

When you go through rough waters like we were experiencing, it was nearly impossible to enjoy the positive.  It was like a minute by minute routine because raising Sawyer was just that unpredictable.  One moment he would be eating his chocolate raisins while enjoying Mickey Mouse Clubhouse.  The next minute he could be screaming because one raisin fell out of his hand.  Those episodes happened often, which made us not want to leave his side.  However, we were watching these moments dissipate.  It was encouraging that he was changing as he was learning.

Out of nowhere, the improbable happened.  We discussed how a dog could be a comfort to Sawyer.  A dog?  A real animal living in the house? How could this dream become true?

Having a dog was a life long wish of mine.  I had fond memories of my friends pets.  My distorted view made me think of all of the positives this could bring to our lives. I couldn’t even think of the layers of the work it would take.  I saw zero downside in this.  Not to mention that this was something I wanted but to read about the calming nature that a dog could bring to a child with autism was an easy sell for me. I wanted to sign on the dotted line.

Kellie and I had some conversations about this.  She had a strong memory of when we first got married and fostered a puppy.  It was a disaster.  I was way over my head and it didn’t work out.  It was noted that Jon Rubin shouldn’t get a puppy that had not been house broken.  As matter of fact, if there was a manual on caring for a puppy, I’d be on the cover chronicling to do everything different from my attempts.

Here was the thing.  Lesson learned.  If a dog could be an asset to Sawyer then I wanted an opportunity to make it work for him.  I knew I could do it.  I knew I could make it a success.  I did know that it was a longshot.

I was losing hope.  Our conversations about a dog dwindled.  It was a battle that I didn’t fight often due to the thought that it had to be a consensus amongst the family.

It seemed like the bottom of the ninth inning with two outs and nobody on base.  We got a call from a friend that their was a 7-year-old pug that needed a home due to the family relocating.  A Pug named Oscar was at a close by softball field if we were interested in meeting him.

I really thought nothing of it.  However, Kellie thought it would be a good idea to take the kids to meet him.  Could this be my one chance to get a dog?  Was it possible that the stars have aligned?  Did the universe want us to get a dog?

 

 

 

I wish I was warned.

Yesterday was a good day.  Sawyer went to school, Evelyn went to gymnastics, Cobe got his chocolate croissant.  Kellie got home from work early.  We went strawberry picking.  We were lucky to bump into a close friend and her wonderful children.  We picked up Evelyn from gymnastics as a family.  So we rode the wave to extend our day to a quick dinner.  It was just that kind of day.
All was well.  There was no wait to sit.  Each kid was able to try out an electronic device at the table.  Everyone was happy playing and talking.  Our food came quick.  We got to eat and just enjoy a nice summer evening as a family.  It was one of those moments when we were no different from anyone else. This was until Sawyer’s screen shut off and he belted out a scream.  A matter of 3 seconds changed everything.  

Typically a scream at a restaurant doesn’t make anyone blink.  Kids have their moments.  Autism or not, life happens.  However, the reaction of the woman sitting across from us was shocking. She shouted out due to Sawyer’s scream.  Her actions implied that she wanted us to know that she was annoyed.

As I tilted my head in her direction and as Kellie comforted Sawyer to settle him, Kellie stopped and turned.   She didn’t freeze.  It was like a boxer rising from the canvas after being knocked down.  In pure calmness and class, Kellie explained to the woman Sawyer is autistic and didn’t understand what was happening to his screen  The woman’s response, “I wish I was warned.” Disgusted.  Offended.  Outraged.  Who could even suggest such a thing? How could someone even think this?  She in fact wanted to be told that he was autistic.

Kellie responded with the fact that we will not keep Sawyer home and hidden from the community.  He has every right to be out to dinner with everyone else.                   The conversation ended quickly.  Kellie took the kids, and I waited to pay for the bill.  I had eyes on me sitting there sans family.  My head was up, I was upset but not defeated.  Our server was outraged and apologized.  She took money off the bill though I didn’t accept by doubling her tip.  A family across from us sent desert to go.  They were complete strangers who provided the kindest comfort.                                          

As I thanked them, many approached Kellie and apologized to her for the customers behavior.  However, the damage was done.  We were unified and appreciated the support.  We couldn’t escape the notion of what would be if we weren’t there to speak up on Sawyer’s behalf. This is our reality.  We have love and support.  Though we have our worries.  Sawyer is 6 years old.  He is lovable, charismatic, funny, intelligent, and a showman.  He is autistic and may display behavior that can be disruptive.                        

Just know this.  We won’t be attaching bracelets or flashing blue lights to announce his needs.  He’s our son and we are proud to be his parents. His brother and sister are proud to be his sibling.  So if one person expects to be warned, I’m sorry to disappoint her though I can promise her this.      

The Rubin’s aren’t hiding or scared.  We are an autism family.  There is this your warning.  We are here to educate and inspire.  There’s your warning ❤️

Where did that guy go?

I had a bookshelf in my living room.  It was crowded of books that had genres tipping like dominoes.  To stop the curve of texts, I would insert folder after folder of Sawyer’s assessments.  In less than 6 months, each book would get back to its standing position as the paper trail would not end.

I was and still awful at filing things.  Certainly not a model of putting things away in chronological order.  As matter of fact, I start off really strong until I have more than one thing to sort.  This would lead to be a problem if Kellie asked me to find something she needed.

I’d go back to that shelf and it was like an adult sized scavenger hunt.  You’d be amazed on how difficult it would be to find something that you put away yourself.  Luckily for me, I got really good at it.  

Unbeknownst to me that this was a problem.  Kellie needed my support and I just wasn’t attentive like I should have been.  Not finding a report or document on call at that moment seemed non essential.  It was non essential to me because I knew Sawyer had Autism.  I didn’t feel like I needed to read about it anymore.

This was a serious problem for us.  Being supportive was very much practiced at a surface level.  I didn’t do enough to be there for Kellie.  I didn’t ask enough questions nor did I know what to ask.  


I’d bury myself into my work.  I’d bury myself into what others needed of me.  I just felt like my efforts weren’t good enough.  It was a self defeating cycle and all because I couldn’t control what was happening in my life.

It was like Autism took me to another dimension.  It took me away from the guy who would play with his kids as toddlers.  It took me away from everything I thought I knew about having a family, being married, or even being my best self.  I had zero clue where the guy with a smile at all times went?  Where did that guy go? 

Yes.  You.  Can. 

Tomorrow is a big day.  Big enough to jump off my timeline of Sawyer’s story.  Tomorrow will be the day that Sawyer graduates kindergarten.


Tomorrow we hit the pause button.  We won’t worry about what work is ahead of him.  We won’t worry about our fears and insecurities of the unknown.  We won’t worry about milestones or benchmarks.  

Tomorrow we will celebrate a huge accomplishment.  Sawyer will be with his peers and stand tall.  He will have his bow tie, suspenders, and a smile that will bring tears to our eyes.

Progress meetings, paperwork, services, and the future will not go anywhere.  Tomorrow is Sawyer’s day.  

Kindergarten will be complete.

It’s his day because he can and he did.

We love you, Sawyer.  

The hidden pictures

If we were in a family tug of war, it was one we couldn’t see.  We knew that our deck of cards were quite different from those around us.  The trials of a special needs family was a dynamic that we lived as a trial by fire.

This is where social media hurt us.  Our pictures made our story look poetic.  We had three beautiful kids who ate ice cream as a treat.  They would go bowling.  They would bounce on a trampoline.  We were just like anyone else if you wanted to click the like button.  It was my fault.  It’s what I wanted life to be.

Pictures were a facade.  They didn’t show Sawyer not talking many words.  It didn’t show his screaming in a grocery store because I couldn’t understand what he was saying.  It didn’t show my inability to truly connect with my son.

A picture was my hope.  My attempt to convince myself that we were living  just like everyone else.  I mean if pictures depict happiness than it must be the real thing?  

That’s what Autism brought to me at times.  A truck load of confusion and blurred vision on what was real and what was not.


I had many moments of not enjoying what was because I was scared to understand what and who we were.  They were my insecurities about the unknown and I hoped things would be fixed to what I was willing to show.  

It was remarkable what was truly hidden in my pictures.

Acronym overload

IEP, ASD,  and VB MAPP became new family members to us.  It was like Sawyer had a Radio Flyer Wagon worth of baggage without any say in the matter.  Overwhelming for us as a family and as we thought we had some solid footing, our feet were in a puddle of uncharted waters.

I was so absolutely devastated about Sawyer’s VB MAPP results. He had so much ground to cover in so many areas, I just struggled to look at it.  In many ways, this assessment was more difficult to digest than the diagnosis of Autism.  This was more real.  He may have been age 4 but a 2 year old was inside him.  


Everything I heard from those around the table reading that report mirrored a Charlie Brown teacher spat of rhetoric.  I tried my best to hear it and listen but I was in fact out of it.  All I could think about was his future and if he had one.

  I told Kellie that I was sure he would close his gaps.  However, I was trying to convince myself that he could in hope it would help her.  Truth be told, I had doubts and I was scared to even think about what could be in Sawyer’s future.

I have said this before.  Autism isn’t a step by step process that each case is the same.  It’s a fluid process that has many peaks and valleys.  Accepting this was a huge challenge for me and it took a long time to understand the road we were on.  

It was a road of survival as the acronyms were piling up and overloading my existence. 

Next stop, the 4th floor.

So here we were.  We had a 3 year old son with Autism.  He had an IEP in place for his services.  Our two other children knew that he was different but had the empathy to want to understand.  Not to mention they were eager to help.  Things were on the upswing, right?  

I mean we were in the midst of creating the modern day Autism success story.  That was how delusional I was at that moment. It was like I thought we were just stuck on an elevator for 3 years and now we would bolt to the next floor.  I truly thought it would be that simple.  

I thought with the services he had just started to receive would kick in like a training regimen.  Why wouldn’t I? He was progressing.  I had two eyes and I knew what I was witnessing.  

He was running, he was talking more appropriately, and he even showed some interest in some playing.  It was like we were breaking barriers at the Rubin household.


The dilemma with the elevator ride is that once it stops, you have to get off.  This is what happened as we met with Sawyer’s team to go over his VBMAPP results.  For those of you wondering the What is vb mapping for autism? It is according to Mark Sunberg, “The Verbal Behavior Milestones Assessment and Placement Program: The VB-MAPP is a criterion-referenced assessment tool, curriculum guide, and skill tracking system that is designed for children with autism, and other individuals who demonstrate language delays.”

At 3 years and 10 months his developmental level was at 22 months.  It was a moment of clarity that woke me up.  All of the progress I saw was farsighted.  I now look at it as just hope and faith.

We had quite the elevator ride ahead of us and the 4th floor was just months away.