Front of the line

Years ago we went to Disney. We watched Sawyer cry, scream, and shake at various points of our vacation. The magic of Disney may have been captured in pictures but there was nothing magical about our trip. It was a week long slugfest as the boy who loved Mickey couldn’t find joy in his park.

It was just a few months later that Sawyer would receive his diagnosis of Autism. Our world of understanding his needs had just begun.

Some of the biggest challenges for Sawyer is large crowds, noise, waiting in line, taking turns, and being allowed to do something himself. As you can imagine, a theme park if not planned accordingly can set him up for failure.

Thankfully, we are aware that most theme parks offer supports for those with special needs. So when we traveled to Story Land up north in New Hampshire, we were set up for the best experience possible.

Sawyer was excited. His vertical leap was at its all time peak from the moment we entered the park. And to enhance his experience, we were given a pass that gave him access to get on rides at the exit line rather than the entrance.

This was a game changer for Sawyer and our family. It’s almost like a golden ticket for a theme park.

So on a nice day, we had no lines, and the kids could go on rides with Sawyer as my wife Kellie and I watched.

All was great. All but our final ride before departing the park. As we had our pass, one of the workers looked at it and said, “well, the line is long enough so I guess this time, you can use it here.”

That was her making it her choice. Sawyer doesn’t have a choice. Kellie in a very direct tone informed her that the pass doesn’t work that way and our kids would be getting on this ride like it was explained to us. The worker didn’t say anything else.

The kids got on the ride. They had fun. We went home.

Here is the heartache of this. We had a great day but one part of our day reminded us of what is our reality. People see Sawyer and don’t see Autism. They don’t see it because he looks like any other kid. However, this doesn’t mean that he doesn’t have special needs.

Nobody made that choice for him. We never thought we would need a pass to be in front of a line.

We had it because he needs it. It’s a support. We just continue to fight for the understanding of the support he needs.

Do the numbers lie?

10 months. That’s a long time. A long time to be with 20 students. A long time to invest in each and everyone of them and their families. It’s a bond that will be with me forever.

That’s a school year. That is teaching. That is my life for 10 months.

When the final day of school comes, it’s received different by everyone. My students are moving on. My once great and powerful Oz voice that existed in September evaporated into a shell of itself in the month of June.

That is the conclusion of the school year for the majority as my two oldest children are ready for an activity filled summer.

My pregnant wife, Kellie, is ready for me to go from Mr. Rubin to just Jon and Dad.

And then there is Sawyer.

Sawyer had the quickest of turnarounds out of all. He finished school, had two days off, and went back to his extended school year without missing a beat.

He loves the small bus. He loves getting on it. He loves working with his teachers. He loves the playground as his giggle echoes across the air while he bounds towards the swing.

He loves coming home as he even gives me a squeeze. I pause when this happens. I don’t get a hug often as it’s typically saved for his mom. However, when he does, I look down on him, kiss his head and embrace the moment.

it’s all glory right now. Or it was until I opened Sawyer’s backpack.

His standardized test results were in his bag. Looking at them made me tilt my head back in forth a bit.

The teacher in me knows that it is only one data point. I’m fine with reading numbers that put him in any average or below average bracket. Test scores don’t define him.

My heartache in this stems more so thinking about how these assessments mean nothing to him.

His numbers attached to his name are just numbers. Those numbers don’t lie at the moment he was working. I’m ok with that. It’s the reality of data.

What is difficult for me with Sawyer is that for someone who doesn’t know him may infer that he is below average and that irks me.

It bothers me because of the amount of effort that it has taken from his teachers. They work they have put in to get him to this point to arrive at answers it such an accomplishment that it trumps the result.

The path was far greater than the result. So the numbers did lie from a certain point of view.

We just have to keep changing the world regardless of what the numbers say.

Holding on

The summer has arrived. The weather is warm. The pollen is a sea of yellow on my dash as my Jeep roof is open. The school year is at its conclusion.

Our first grader is about to embark on another break, which historically has been a tidal wave of challenges.

Sawyer needs routine. It’s not wise to challenge that. He does his best waking up, having breakfast, getting dressed, and going to school. Not having that structure tends to be a challenge for him.

Thankfully for him, he will begin his extended school year in a matter of weeks. I will take him to school by myself. I will pick him up with Oscar the pug per his request.

Oscar will cry as we wait in the pick up line until he sees Sawyer. Sawyer will giggle while pointing to Oscar. And Michael Jackson’s Black or White may be his first song request when he sits.

We will discuss a plan the night before about his following day. We will go over his plan in the morning before I drop him off.

Though exhausting at times, this is who he is. He needs to know about what will be happening. It’s as redundant as my kitchen sink piling up with dishes. I hate doing dishes.

The real kicker this summer is the road work going on outside our home. At any given moment, a road route could change. Though this may seem a non issue, try explaining that to Sawyer.

He has his own map. He has his way to get somewhere. He needs to know when work will be complete. He will perseverate on this day after day after day.

So though the excitement is in the air, I need to be realistic with what is to come. He and I are holding on to our seats for another summer.

What if

I don’t know what happened but I woke up one day as an adult. I had three children and twins on the way. I haven’t seen my brother in 8 years. My parents live in different states. I have no living grandparents.

Years ago, a guy at my gym used to respond when I asked him how he was doing by telling me that he had a wife, three kids, and a mortgage. He was 40. I was 23.

I’m now him plus more.

I don’t know his story. I struggle at times to figure out my own.

I see what I have. I see what I have lost. I see what I continue to gain.

That’s life.

I do worry about the what if though. It keeps me up at times.

What if Sawyer doesn’t make friends? Will his life be that of a loner who is known as Autistic? Will the label be with him regardless of his progress?

What if he decides to be independent even if he isn’t ready? How will my wife Kellie and I navigate the world of an Autistic adult?

What if there is no Kellie and I? How will Sawyer self advocate when he needs support? How will his siblings guide him and work together?

These are all unknowns and aspects of our life that we need to plan for.

These are just a few because once I start rolling, there is no stop.

There are nights when this starts at 9 and I see the clock at 10,11, and 12.

I envision every scenario. It’s almost like a freeze frame of a movie that I’m not holding the controls to.

That’s my reality. That’s my fears. That’s my honesty.

That’s my what if.

Homework Hero

After dinner, as the table cleared, as the homework came out, as the pencil took to the page, I almost raced to my phone to take a picture.

I didn’t. I sat. I watched. I just let my eyes track Sawyer’s every move.

I observed his recognition of numbers. I watched him add incorrectly. I listened to his scream when my wife Kellie, took out the plastic bear counters to assist him.

I saw it. He did it. He wasn’t thrilled about it but the job was done.

However, there was no picture. I have noticed that a picture would have displayed the process of success, which was only a fraction of the truth.

Yes, I’m proud of how hard Sawyer works. He shows his resilient drive in all of his being.

Autism may be a part of Sawyer’s delays, his ability to communicate, and his struggles to learn like others but it has never robbed him of his desire to work. He is a worker.

So Sawyer worked through his addition problems. Mission accomplished.

Fast forward to his reading where he had this read a sentence, find a picture, follow the instructions, and color the correct section.

There was no problem getting his materials as he ran downstairs to get his markers.

His feet slammed on the wooden stairs on his way back up.

Then there were tears when he felt like he ruined his paper as he recognized a mistake.

We aren’t talking a few tears, we are talking the opposing team watching a basket at the buzzer of a high school state championship type tears.

The shouts, the screams, the end of the world.

However, the noise, the sadness, the eruption ended. Sawyer went back at it. He moved forward. He continues to be the homework hero.

The 10th hole

My grandfather was an avid golfer. Though he has been gone for nearly 20 years, I find pieces of his legacy in the most unexpected places.

Sawyer’s middle name is Irvin after my grandfather. He was my hero. He was my everything. Life just loved him as much as he loved life.

Like Sawyer, Irv was one of a kind. He would go at pace of his own. His life was his interests. His agenda was what he wanted to do and if you wanted to see him, you either went with him or waited.

Sawyer has bow ties whereas Irv had the checkered plaid pants. Irv controlled a conversation based on his knowledge. Twenty plus years later, so does Sawyer.

Irv and I spoke about how to swing a club and life lessons that always seemed to be wrapped around a sports metaphor as we would hit golf balls.

Sawyer and I speak about what he did during his day. However, he changes subjects when he just doesn’t want to talk but rather ask scripted questions like, “were your kids good listeners today?”

Yes, Sawyer loves to ask me about my school day and my students.

Just like with Irv, I tried everything to gear our conversation towards new things and it would always come back to him.

During the present day, I’m always attempting to generate new conversation with Sawyer and go off his script. However, Sawyer isn’t very flexible.

Neither of them are or were.

However, I find this odd comfort in my realization. It seems that once I turned 40 last year, I started to see a lot of Irv in Sawyer. And it just wasn’t the moniker on paper.

For the first 9 holes of my life, I never thought there would be a person like Irv. However, on my 10th hole, I have met him again in Sawyer. I’m thankful to be on the course.

The internal atlas

As I look back as a passenger in our car, I see three children. Two of them are looking at me, whereas the third one is looking out the window.

Whenever I ask Sawyer what he sees, he will respond with the road. However, what in his brain is allowing him to comb all areas like a computer?

For example, last summer I tried to take a left hand turn on a road near my Moms. There was construction so we had to go a different way. It was something I never thought of ever again. It was just another day, just another drive.

This was until the other day when we left our favorite ice cream hangout, The Inside Scoop in Bedford.

We got into the car and Sawyer wanted us to go a different way to his Grandmother’s house in Merrimack, which is a town over.

At each stop, he told my wife, Kellie to either turn left, go straight, go right, or go here or there. There wasn’t a reference to a street name nor a number. There was only the destination he cared for.

What I found incredible was that from the Scoop, it is a legit 15 minute ride to my Mom’s house. It’s not just a straight shot and we have never taken him the way he was taking us.

Even more jaw dropping was he led us to the road that I tried to take last summer, which was another observation that he must have made that one time.

So this leads me to more questions than answers. What does Sawyer see while driving? What is he processing? Why are routes so important to him? Can I ever get a glimpse into how his brain works?

It’s puzzling but intriguing at the same time.

When we got to my Mom’s, all I could think about was a giant grid of angles, and colors that Sawyer has associated landmarks with in the past.

Was this how he got us here? Does he have an internal gps that can lead us anywhere?

Will I ever understand?

The open window

When I was 7, the days were marathons, the seasons were a mini series and summer was a movie that I wouldn’t take my eyes off. That’s how I remember it. It was my world of endless possibilities and zero worries.

That was my childhood. That is what I thought childhood should be. It would just all work out.

It’s not that I don’t find myself thinking that Sawyer’s life will work out for him. I do believe that he will find his way. I just find myself scared about the unknown. And the unknown is like being in a maze of mirrors. Everywhere I look appears to be another road to a solution.

The dilemma is to explain the unexplainable. Autism isn’t a paragraph long. The Spectrum isn’t a legend. The unpredictability are not lyrics to a song that brings me joy.

Sometimes Sawyer yells. It happens in public. People stare at us as we ask him to try again and again until he articulates what he wants or needs. Some may think he is being a brat. Some judge how we respond. I can’t control what others think. I’m not in the business of appeasing ghosts.

Sawyer struggles to comprehend what he reads. He can point to a picture. He can read the text. He can repeat a lesson. However, he just struggles to understand what he reads or what is being read. This is who he is right now.

Sawyer gets invited to birthday parties. This is now. I don’t know or want to think about the day that it may not happen anymore. I never had that be a concern for my childhood or that of our other children.

I know what time means right now. I see the success and I live with the struggles. I do know that the window of progress and promise remains open. It’s just a matter of fighting to not let it close.

Playing in the shawdows

When our youngest child was born, every adventure out was a first. It seemed like there was so much thought into each purchase. It didn’t matter if it was bottles, clothes, or even shampoo as we navigated through the world of parenthood.

I don’t think we over analyzed things but we just didn’t know due to the lack of experience. I mean, when I was a baby, I’m fairly certain I bathed myself since I don’t have any pictures of my mom or dad washing me in a sink or tub. For all I know, I could have been hung outside on a clothesline to dry off.

Nevertheless, we did our best on the choices we made. So when we had our second child, we learned from our first, and when Sawyer arrived, we had years of parenting under our belts. It’s almost like we were graduate students compared to freshman.

We had 5 years to collect knowledge. 5 years of ideas to pass on to another child and though the number of years stretched to 8 once Autism was a reality, we still had our tool belt of ideas and practices that were in play.

All of this was like our shiny, well sculpted, rectangular tool box. It had years of fun things to dress up in and play with. Once it was opened, the imagination would run wild and playing would commence.

However, Sawyer didn’t open it. It stayed shut. It remained closed from ages 3 to 7. It may have cracked open at times but everything that the other two considered fun, didn’t exist in Sawyer’s world.

Sawyer’s ideas of playing was chasing, crawling, or shouting. His display of fun mirrored a Simon Says game. The lights would shine, it would follow a pattern, it would make a sound, and then it would turn off.

This was his form of play.

So we encouraged him.

We modeled for him.

We tried playing with him.

However, nothing truly stuck.

We have seen moments of interest. We have seen periods of time that he plays longer. We have seen him try like the other day when he played with a Beyblade. It was well worth the screaming when he let it rip off the line that makes it go and was trapped under the couch.

Though it is a struggle to explain that we could get it back, he needs to learn to try things that don’t come easy for him.

Let’s face it. Playing is foreign to him. He has to learn how to do it. That’s who he is.

As we celebrate all of Sawyer’s successes, we don’t ignore his challenges. As of today, he continues to play in the shadows. We hope to guide him into the light.

The unpredictable

There was a crash and tears echoing from the boys bedroom a week ago. This isn’t uncommon in a house full of kids. However, It is very unique for 7 year old Sawyer to cry and not to stop.

As my wife Kellie rushed down to see what had happened, she discovered Sawyer on the ground grabbing at his foot. His tears were streaming and was shaken by whatever occurred.

Here’s the dilemma with arriving to a wounded Sawyer. How can we know what had happened and how do we know how hurt he truly was?

Kellie asked him questions as he settled. He said that he fell from his bunk bed. Then it was his bunk bed ladder. Then it was he fell on the floor. As you can imagine, it wasn’t as clear cut as an CSI episode. Figuring out what happened is an ongoing investigation.

Regardless, Sawyer struggled to walk. This was a problem. To be proactive, we decided to take him to be looked at. Here is where Autism can simply drain you.

We only live 5 minutes from where Sawyer’s X-rays were taken. In those 5 mins, Kellie and I were asked about getting a cast? This stems from last summer when Sawyer’s older sister fractured her growth plate.

This questioning continued over and over and over again. What started in the car, it continued in the waiting room. It continued in the office. It continued during X-rays. It continued during its results. It was his perseveration that wouldn’t stop.

Though there was no break (thank god) it’s almost like Sawyer turned into a Jedi as he was trying to convince all parties that he didn’t need a cast. This is who he is as he reassures himself to only the answer that he wants to hear.

This is certainly an avenue that we are working through as not every obstacle is going to go his way. He has to learn to work through it rather than always walking away with getting his way.

So though he could barley walk out of the doctors office that day, as he hobbled with a special shoe, than a day later, a boot. It is on the forefront that the unpredictable is a predictable challenge. And like every challenge, we continue to find ways to solve it.