Off the script

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.

Show the way

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.

Progress report

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.

Dear 7,

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

Give him a chance

Sawyer was ready. He’s been ready for nearly a month. It was almost like the countdown to Christmas because being invited to a peers birthday party was that big of deal in these parts.

It’s not just the invite alone that was exciting. It’s the recognition that Sawyer isn’t little anymore. He’s almost 7. Friendships are beginning to form and we are wondering how he will fit in or can he?

The progress is there. I see it. I see the work that is being put in behind the scenes. From the social groups, to reading, to the fight for independence. Like my son Cobe said recently, “daddy, Sawyer would never been able to do that 3 years ago.”

He’s right and he was referring to raising his hand to tell someone his choice of food.

Now there are moments that are frustrating too. Such as a recent trip out, Sawyer HAD to use the bathroom in each place we stopped at. For whatever reason, he is fixated on the sound of the toilet flushing. It’s how his brain works. It’s a part of the gift of Autism. It’s endearing the first time but not the 15th!

However, it’s who he is. And I love that about him.

I also love that when the lights went out during his friends birthday party, he wasn’t worried. He knew it was part of the bounce house theme. He could roll with it.

He jumped. He ran. He checked in with me to tell me he was having fun.

I don’t know how it will all play out in the future. I don’t know what friendships will be to Sawyer. I do know that today was a chance. Today, Sawyer was given one.

Milestone

Everywhere I go there is a clock. From my Fitbit, to my phone, to my Apple Watch, to my car, to even the gym that has them scattered in every nook. Some of these clocks are in sync and others are just a little off. In theory, a few seconds or minutes doesn’t really alter my day but I’m aware of it. For Sawyer, it’s just one clock and it only matters to what time he wants it to be.

Time matters to every family in the morning. Especially when you’re aware of what needs to happen to ensure everyone gets to where they need to be.

Sawyer’s schedule is his own. He comes upstairs, has breakfast, watches a show, gets dressed, brushes his teeth, and waits by the front door to watch for his bus. It seems simple as my description of it is so bland. Bland as I can sum up his routine in a narrative without punctuation. However, I can leave out the reminders, the redirection, the meltdowns, and perseveration over simplistic things.

For the record, the aforementioned isn’t just Autism. All of my kids have some sort of mayhem before heading out the door.

Nevertheless, we are in the now as two years ago we weren’t. Independence was a pipe dream. Trust me, Sawyer wasn’t going to his room, picking out his clothes and making a bagel with cream cheese back then. He also wasn’t getting a Keurig hot chocolate capsule out of the pantry, loading it up, waiting it for the be complete, putting ice cubes in it, and drinking it at the kitchen table. This wasn’t anywhere near my radar.

It also wasn’t on my radar when he came home jumping up and down that he got a invitation to a classmates birthday party.

I had tears roll down my eyes. I only dreamed of that excitement for him because I never truly know how he is welcomed amongst his peers. I hear stories that sound wonderful but stories and proof are two different animals.

The thing is that this was a boy at age 2 who wasn’t walking. He was hardly speaking. His smile was the only milestone that I could only see or hold to.

It didn’t matter that we had two other children who could seemly reach the moon. Sawyer wasn’t and that’s all I could see. That was my clock and I prayed that it could stop so he could catch up.

So today, we celebrate another milestone. We celebrate an invitation of a birthday party to attend. We celebrate that a clock may tell time but each one is different if you allow yourself to see it.

The prince of routine

Some may define structure as a plan or an organization strategy that is consistent. Though I agree with the definition, I find it difficult to implement it in a concrete form at times for Sawyer. The thing is, his type of structure is very black and white and as he is getting older, it can change without a narrative that has any rhyme or reason to it.

Living with Sawyer has certainly taught me that whatever I think I know about what he needs tends me to discover more questions than answers.

I do know the basics right now. He likes to do EVERYTHING by himself. He wants to pick his own clothes. He wants to fill the tub. He wants get his own water. He needs to open the door for anyone who comes to it. And most of all, he needs things to go his own way. If not, the ripples of his distaste are felt throughout the household.

Sometimes this is cute. Sometimes it’s charming. Sometimes it’s maddening. The thing is that Sawyer needs to learn that Sawyer isn’t the only one in a house or in the world.

From the outside, many see how much he has changed. I agree. However, as much I do celebrate his growth, I still want him to learn. I mean there is a huge difference of cuteness of running towards the refrigerator to slam it shut at near 7 years old between the possibly of doing the same thing at age 12.

It’s these social parts to him that I do worry about. I don’t want his world to crumble for the day if his pencil breaks at school, which could cause him the fear of using a pencil for 2 months or more.

Now this hasn’t happened but as Sawyer gets older, it could.

So for now, the prince continues to be consistent. However, the prince’s father searches for ways to add flexibility and understanding to his routine. It’s a never ending adjustment that redefines the structure for all.

Dear 2018

Sawyer,

Many spend hours upon hours creating their New Years resolutions. The range of what these new goals come from is about as predictable as your reaction to when the WiFi goes out. Everyone is just that different and in being different, I find more ways to relate to you. This is one of the gifts you have given me as I no longer crave for you to be anything but who you are.

I think I learned this in 2017. It wasn’t until I saw you with your peers on stage for your kindergarten graduation. You were so cute in your suspenders and bow tie. Even if someone didn’t know you, they would know that you were someone just from your presence. You just put a lot of smiles on people that day.

What a day that was. I finally found myself closing my eyes and feeling calm. If it was a movie, the camera would have pulled away from my expression and some sort of happy melody would have played in the background. Or the credits would roll with the text of a lighthearted epilogue.

The great thing is that this isn’t a movie. This is reality. I got to see you change in ways that I didn’t anticipate in 2017.

You gave me moments of conversation even though it wasn’t daily. It happened. It’s there inside you and nobody can take that away from you and nobody can take that from us.

You showed an interest in having play dates. Even when it happened, you had a tough time playing but you tried!

I even heard rumors that they are working with you on tying your shoes at school? Incredible!

So 2018 is here, Sawyer. I don’t know what I want as my resolution. It took me 365 days to really understand what I wanted in 2017.

Just know that I promise to learn with you and love you, your brother, sister and mother with all of my being in 2018.

It’s because of you that I’m understanding how important each year truly is.

I love you,

Daddy

Capture the moment

I could go on and on about Christmas morning. I could write words that could capture what I watched. However, I think these 28 seconds capture what I have been wishing for since they day I met Sawyer. For these 28 seconds, Sawyer was a boy surrounded by his family. A family that loves him. Take a look but more importantly, take a listen.

This is what the holidays are all about. Wishing all of you love, peace, and happiness.

Discovering Santa

I’m the master of loving the holiday season but if it wasn’t for my wife, Kellie, I don’t know if the menorah would be found or if a tree would be put up. Luckily for me, she is on top of this and pretty much everything in our home.

In the house I was raised, we celebrated Hanukkah so I spent my childhood being annoyed that I didn’t celebrate Christmas. It drove me nuts. I almost considered interviewing Rabbi’s in Southern New Hampshire to see if it would be kosher to just get a tree and have presents under it like everyone else.

Fast forward to having my own family, I was adamant to enjoy Christmas at any cost. I’m talking a real tree, ornaments, lights, tinsel, egg nog, and presents! Lots of presents!

I just thought it was so easy to understand. You make a list, you decorate, you sit on Santa’s lap at the mall and when the kids go to bed, you watch A Christmas Story.

Here was the thing. Sawyer didn’t get it. He didn’t get Santa. He didn’t care about Rudolph. He really didn’t care about presents.

December was just another month to him. Christmas was just another day. It felt like he was getting robbed of another thing. The heartache in watching your child not care about what the majority of the child population was just that final end of the year punch to the gut.

We tried. We went to see Santa. We encouraged Sawyer to open presents beside his brother and sister. Though the spark wasn’t there.

It wasn’t there at 2, nor 3, not a 4, hardly at 5, but at age 6, we’ve made it!!!! Not only does Sawyer know what’s happening, he’s counting down the days!

He opens his Advent Calendar! He builds gingerbread houses! He searches for his Elves on the Shelf! He even made a list!

So if you are celebrating this holiday season, think of Sawyer. He has discovered the magic that I’ve been searching for all along.