autismdadinthe603

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?

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.

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.

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.

There is certainly a honeymoon period of excitement when sharing the news of expecting not one but two children. It feels like everywhere you turn, there is an echo of congratulations and happiness.

It was a day that nobody could take away from me. I wish I could have paused it for longer. Only if those 24 hours could be stretched out to 72. I just wanted the honeymoon to not turn the page because I knew that there would be pockets of overseers whispering questions that I could choose to hear.

The first was the obvious. Was this accidental? Ouch. It’s almost like the thought that being in your 40’s with multiple children that expanding the family is taboo. I have to tell you that I never got that memo and our intention to have another child was our plan.

We looked at the landscape of our family and saw how our daughter and two boys connected. They are his foundation.

After Sawyer, there was no other Rubin in this household. He knows what he knows and that is his love from his big sister and brother.

He will now have the luxury to love two younger siblings. He will be able to teach them things he knows. He will have the opportunity to grow with them. He will be given the opportunity to be looked up to. The thought of this was impossible to even fathom years ago when he had little words, couldn’t walk, or even showed a desire to play.

By the way Jon, what if the twins have Autism?

I’m not even flinching. Here’s my response to this.

What about Autism?

We could read every statistic about the odds of having another Autistic child or children. I haven’t studied the archives. I haven’t looked at trends. I haven’t given it any thought other than when someone asks me the question, which unfortunately some have.

The thing is that Sawyer is Autistic. It’s a part of him. It’s not his nickname nor is it his title. He is in fact my son and I love him.

We don’t make decisions over here on what if, or maybes. We make it on building a family and take on the challenges that come our way.

I don’t have all the answers but I’m not scared of the questions. Bring them on!

On the day Sawyer was born, Kellie and I were not a united front. We were not necessarily broken but cracked. Our communication was lost. We were in the midst of the challenges of being husband and wife rather than just being Jon and Kellie.

Our bond was our children rather than our bond as a couple. I just thought it was the way things go. You grow together, you grow apart, and then grow together. It would be the ebb and flow of marriage.

So there we were in the operating room. Kellie was to have a C section. I went in with her and I felt like this was the conclusion to our trilogy. This would be our last child. We would now move onto reinventing our marriage. This is how it was supposed to be.

So that was it. No more children. We would be a party of 5. Roll the credits.

But the trilogy decided to reboot. We started to talk about the idea of having another child. And we weren’t kidding.

As we looked at the last few years, we’ve changed. We have learned to appreciate one another in ways that we didn’t know. We worked with one another rather than on our own.

So here we are. At the age of 41, I have seen loved ones lost, friendships come and go, moments I cherish, and moments I’d like to forget. However, I do know that the legacy that we will be remembered for will be by our children.

The hope is that all three of them will be there for one another.

However, all three will be joined by two more.

As I told Sawyer the news last week as I picked him up, I asked him if he wanted to hear something funny? That his mom had two babies in her belly.

His response, “two babies, how is she going to fit two babies?” This was followed by a giant giggle.

So the circle has now come full. Sawyer was once the conclusion of our family. He now will be the bridge to our future. He is no longer the baby, he will be the big brother.

Chicka Chicka Boom Boom was our go to book for a long time. As we would conclude our bedtime routine, we’d spend countless minutes on the very back page where each letter would be represented by its uppercase and lowercase version.

Sawyer would point to each letter and say what it was. There were some nights he’d recognize them and many nights it seemed like it was his first time that he ever witnessed them.

Whether he was 3, 4, or even 5 years old, this was our balloon of hope. Our dream that he would learn his letters and one day be able to read.

Reading opens up doors for all of us. It may even be something that we take for granted as it almost seems like a given. However, nothing is a given with Autism. If something is earned, it hopefully is never let go of.

History has taught me that everything I’ve read about Autism is that the spectrum goes on for miles. I tend to not even try to determine where Sawyer may fall. I’m more interested in his own book rather than compare it to others.

This is why at age 6, I was excited to see him grab books and pretend to read them. I recognized the interest was there. Even though he was scripting from what he had heard, I knew he was closer.

This was no different than the 4 year old Sawyer who climbed up a chain fence one afternoon at Cobe’s baseball practice and climbed down. He may have been two years late to the developmental party but he did it when he was ready.

So when my wife, Kellie called me last week on my way home from work to tell me that Sawyer read over her shoulder an email that she constructed, I was surprised but not shocked.

Nor was I shocked when he read to us aloud that same evening out of his Dora book.

This is who Sawyer is. He does things when he is ready.

He’s a reader now. He does so because he’s off his own script. And right now, his script is being written on his own terms.

My oldest son is 9 years old. Like most boys his age, the majority of shock value moments come from the bus. Unfortunately, bus rides these days can tend to be an uncensored, unfiltered YouTube videos moderated by children his age. However, today was more sensitive to him than most rides home.

One boy said to him that he knew three Autistic kids. Cobe responded with his brother was Autistic and that he was fine. The boy came back with that he was sad for him. That’s where the conversation ended.

Cobe unbeknownst to him took the high road. He didn’t get angry or upset. He peacefully told me the story and asked me why someone would say that? My response was that anyone who says something like that has a story behind their reasoning. My hope is that over time that he doesn’t see Autism that way.

Cobe nodded his head and I believe he got where I was coming from. And at age 9, he holds more power in changing the world than he could even understand.

He doesn’t see that Sawyer looks up to him more than being the older brother. He doesn’t see that Sawyer has learned how to play because he plays with him. He doesn’t have a clue that when Sawyer falls that helping him up is teaching him empathy and compassion.

This is effortless for Cobe. This is what he knows. This is who he is. This is what I hoped he would be.

So as far as the bus goes. It’s the real world. Kids will share things. Kids will be kind. Kids may be cruel. Kids just know what they know. I do know that Cobe will continue to be Cobe. He will continue to lead the way.

As a 4th grade teacher, I break down the school year like this. The summer blends into the fall, which is like a preseason of sorts. If all goes well, you feel pretty good once you reach Thanksgiving break. The real season begins in December when students are who they are and the honeymoon is over.

This leads to the New Year, which continues to my regular season of optimism and expectations. It’s my way of keeping my eyes on the calendar and recognizing that time is short and I need to reach benchmarks for that I have for each student and evaluate those goals once i hit each vacation.

I have the same philosophy with my own kids. I take inventory of what they do well, what they are struggling with, and how my wife and I can support them. It’s almost like a mini offseason.

My older children are fairly simple to keep up with right now. With Evelyn, she’s a 6th grader. We monitor her progress through what we see, what she shares, what we know, and what she asks for help with.

With Cobe, he’s a 3rd grade student, who thus far doesn’t have a lot of difficulty other than staying motivated to do his best. However, things come easy to him and has the ability to rise to the challenge when pushed. Like Evelyn, he loves to learn.

Then there is Sawyer. He comes home with notes in his binder each day. It can range from reports, snacks that he ate, things that he tried at recess, to work that he has completed.

Out of the three kids, I feel like I look at what Sawyer does with HD/3D/4K glasses whereas the others I view with binoculars. It really does feel like that much of a discrepancy.

Now, I’m for one that believes that you can love each one of your kids differently. However, when I get to a vacation like this one in February, I become almost in shock on how I’ve distributed my time with my own kids.

As present as I feel that I attempt to be as their dad, I do realize the importance of spending time with each of my kids individually and collectively.

So for the excitement I reached when Sawyer laughed at the appropriate time at a scene in the movie theatre. I was able to match that excitement when Cobe made an over the shoulder catch while we were outside tossing the football around. It was also important to stop what I was doing when Evelyn came home to share news about her gymnastics practice.

Though I’m happy to have made it to another vacation, I’m even happier to recognize areas that I need to fine tune.

Let’s face it, I’m human. I’m fatally flawed as I believe we all are. However, like Sawyer’s binder of progress, I’m making mine too.

Sawyer,

I used to think a birthday was a formality. Just another day on the calendar that would bring cake, presents, and balloons. This was until years after you were born that I understood the true meaning of February 20, 2011.

I remember that day. I remember taking for granted the notion of having another child. In 2011, I just felt that health, milestones, and the thought of a baby would be easy. That’s who I was back then. I was self consumed with the picture of a family but not the work that went into it.

When you came along that early morning, I held your finger. I smiled. I checked on your mother. I wondered when I’d get your brother and sister to meet you. And I rushed through the the joy of you being with us.

I did so because I thought of you as being the next child in the family. That you would come home and your life would be like that of your brother and sister.

But that wasn’t you. You struggled from the moment you got home. Your legs wobbled when I held your hands. You couldn’t hold your own bottle. You had little words to speak.

As each year passed, you had to work that much harder. As your peers walked, you didn’t. As your peers played, you didn’t. As Autism arrived, you ran with it.

The beauty of your narrative is that it continues to grow. You continue to reach milestones that we didn’t know you would reach.

That’s what I now take with me as we celebrate you. I no longer look at a birthday as a formality but a gift to celebrate. Today we celebrate you and I celebrate the appreciation of what you have given me. It’s 7 years of life that has made me my best version. And that’s a lot to celebrate.

With love,

Daddy