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.