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.