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.  

He’s not like you

Cobe would come downstairs each morning from age 2 to 3 with his Tony the Tiger orange colored blanket by his side.  He would snuggle beside me as we’d watch some Toy Story and giggle at every moment.  It was a routine of being father and son.  

In a blink of an eye, he was dressed up as Spider Man pretending to shoot webs across the house. You could hear his sound effects echo down the hall.  It was childhood at its finest moment.

The memories of those moments are vivid.  Father and son playing.  Acting scenes out from a movie whether it be a battle from Mulan or Michael waiting for Marry Poppins to arrive.  These were moments that you wanted to have time stands still.   

Sawyer was there for many of these moments as a baby.  I would just watch him sleep in his swing or show smiles at Cobe and I as we played together.  

At the time, I just looked at Sawyer thinking that he would be next.  He would be Buzz Lightyear, he would be Darth Maul swinging his light saber at my Obi-Wan.  It would he and I on the couch snuggling just like Cobe and I did before.

These were my wishes as a dad.  I thought the normal would just be normal because that’s what I thought it would be.  I didn’t know that it could be anything different.  I promised myself a dream.

This is where I was late at night.   I would stare at an IEP report with black ink telling me milestones that my son may or not achieve.  It was like the rated G movie I got to enjoy with Cobe had morphed into a rated R drama and bypassed the hopes and dreams of Sawyer’s childhood. 

This is where I truly understood that he was not like you.  

Turning the page

We were the lucky ones.  We had a district that opened their arms to us.  They worked with us and respected our concerns regarding what we thought Sawyer needed.  If there was a silver lining to the stress, emotion, and uncertainty of the future of our son, we were certain that like the district I worked for that we were in the best place possible.

I will openly admit that we hired an advocate for Sawyer.  We did so to ensure that we had an independent voice during our process with his team.  We had experience but once you’re holding your IEP, you have a rush of emotions that run through you.  You doubt what you know, you doubt what you have, and ultimately you doubt what you want.

This was hardly the fault of the team we worked with.  They were incredible and we were and still are blessed to work with them.  It was just a time that we were in panic mode and afraid.  Even the best plan wouldn’t have been enough for us because of the emotional state we were in.

The conversations with our advocate were private.  Our conversations with Sawyer’s team remain private because our goal all along was to be educated on what would best support Sawyer.  

Life for us at that moment was like viewing a landscape through a kaleidoscope.  Any which way we looked, it appeared different, which led to more confusion and frustration.  We needed help and weren’t shy to admit it.

Like I previously said, were are fortunate.  We had concerns about services, supports, and ultimately the direction of Sawyer’s future.  With the guidance of many, we found common ground across the board.  For that support, from the district, to the staff, to those who embraced us, it brought hope that our page could be turned.

The label

I have an eye condition called keratoconus.  I was diagnosed with it in 2008.  If you Google it, you will read about a thinning cornea and the problems with night vision.  This is true and it is also true that while I waited for my custom made contacts that my eyes were in pain from the moment I woke up until I’d get home from work and sit in pure darkness until I woke up to do it over again.  

It sucked.  However, I waited for new lenses and could openly share with my eye doctor that I needed a solution.  So when I go to any doctor appointment and they ask for any medical conditions, I list keratoconus.  That’s my label.  I have an eye condition.

Upon our first IEP (individual education plan) meeting for Sawyer, I was anxious.  It didn’t matter how many times I have met about students in my career, I would be on the other side of the table.  This wouldn’t be me talking about my school life observations.  This meeting would launch Sawyer’s life as an Autistic child in a public school setting.

It was scary.  I was nervous of the unknown.

Those around my wife Kellie and I would just say how great the schools would be for Sawyer.  How well their special education department would be for him.  How well they do with children of special needs.  Most importantly, how I will know what to do since I have a background in education.

Here was the thing, any school can have a phenomenal special education team but that doesn’t always equate to meeting the needs or expectations for your child.  There is a reason why it’s an IEP and Sawyer being Autistic didn’t mean that there was a template of services that would transform him over night into a success.

Let’s also point out that there is a huge difference between Jon Rubin the grade 4 teacher and Jon Rubin the father.  They aren’t the same person nor should I be.  When it comes to my children, I’m their dad.  Everything else is secondary though it has taken many years to learn how to put them first.

So I’d say going to our first meeting that I had wishful thinking on getting everything Sawyer needed based on the premise that his school would know him because of their experience with Autism.

That all went out the window as the moment I opened his IEP document that it was about as thick as Cliffs Notes to a 3 stanza poem.  There wasn’t much in there.  I looked at Kellie and she had a puzzled look on her face.  It was almost like one of those “that’s it” looks.  

We knew that Autism Spectrum Disorder was in black font but where was the rest that fell under the label?  Would 13 pages of a profile and service descriptions take Sawyer to new heights? 

This was the moment that I knew that the label wasn’t just Autism, it was Parent and we would not just accept the accepted.  

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,