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.

Exceeded Expectations

When it has come to Sawyer universally, I had a measuring stick that continues to be invisible. I tend to get neither too high or too low as I refuse to compare him to his peers, his siblings, or even others on the spectrum. It’s not fair to him and quite frankly, it’s energy that I have learned not to exert.

It hasn’t always been that way though. I wanted Sawyer to be someone he wasn’t for a long time. It was like I made myself a force field for him. I wanted to protect him before any situation. If someone asked him a question, I wanted to answer it for him so I didn’t have to explain what made him different. I thought I was being helpful but I found myself more focused on me than on him.

As we are close to the end of 2017, I see so many changes in him and myself. It’s almost like my force field has evaporated and I can finally let him be who he is.

He’s almost 7 now. It’s hard to admit that. It’s hard to take in that he isn’t little anymore. He’s a first grader doing first grade things. He’s not like everyone else but that doesn’t matter. I find myself viewing him as not different and just viewing him as Sawyer.

He isn’t the 5 year old who would turn pages of a book and just recognize letters. He’s the near 7 year old who is using his knowledge of site words to help him sound out words he doesn’t know. Don’t look now but we are witnessing a novice reader!

Gone is the 4 year old who would just walk past the lights of a Christmas tree. He is now actively trying to figure out when Santa is coming as he pulls puzzles out to do out of his Advent Calendar.

The days of just wanting to watch the same Mickey episode has been replaced with a collection of shows, characters, and movies.

Instead of not knowing how to play, he will go find his train set and build train tracks.

This is Sawyer now. He may have exceeded some of my expectations but he has taught me to not worry about setting any because he will always find a way to surpass them.

I love you pal.

Legacy

Sawyer was given the middle name of Irvin. It was the name of my grandfather on my dad’s side. Irv was quirky and spent hours on the road selling neck ties while spending every other moment on the golf course. His priorities were ties and golf. His boys and his wife may have cracked the the top 3 but lumped together like his irons and woods in his golf bag.

When my father called me last week, he didn’t waste time letting me know that Irv’s widow, 93 years old, my grandmother had passed. If it sounds business like in delivery, it’s because it was. This was the end.

However, the end occurred years prior. Sawyer was only 2 years old in the midst of his pre-Autism diagnosis. He didn’t speak much, his walk was a wobble, and his interests were non existent.

This was my grandmothers only meeting with him. It only lasted a few days. She held him. She spoke to him. She smiled at him. She marveled at just what he was.

Looking back, the parallels meshed. My grandmother’s Dementia had just started. She started to just lose her self. She knew of us but began her journey into her own world. It was like she was passing Sawyer on a bridge as she was going one way, and he was going another. Both were in their own worlds but they were content in it.

My grandma had no recollection that I existed these last few years. The woman of strength and determination was here but in fact gone. It hurts. It makes me sad. I wish that it didn’t.

I have memories, I have pictures, I have my feelings. I don’t wish she had to be here just to be here. I do wish there was more opportunities for her to see Sawyer grow up along with my other two.

As I mourn her loss, all I can do is pass on what I know about her. That’s life. That’s love.

Sawyer may be in his own world at times but to honor those of the past, I will continue to celebrate what was. That’s what legacy is all about.

Tooth Fairy and the 603

I have been in a writing rut. I received an email informing me that I’m closing on one year of writing my blog. This was a kind reminder that I owe them money to retain my site. However, it made me read through all of my posts and made me question what direction I was going in. I’m talking two weeks of reviewing my own material.

I have spent nearly a year looking back into the past. I relived many moments of heartache and triumph. I thumbed through thousands of pictures in attempt to jog or jumpstart my memory. This is has helped me process years of being an autism dad. I have been honest, raw, and hopefully pure.

One thing I have learned this year is to focus on the now. The past has been written and the Sawyer of even a week ago is not the same. Understanding this has taken time. He isn’t 3,4, or 5 anymore.

He is a near 7 year old who is in first grade. With being this age, I tend to forget the small things that are truly big.

He was wiggling his first official loose tooth just about 2 weeks ago. He talked about it, hyper focused over it, and refused to let us take it out even though it was ready.

His face lit up with the idea of the Tooth Fairy coming to get his tooth though. In his words, “The Tooth Fairy will bring me something special.” This line was almost on a loop. You see, Autism and a new discovery can be a gift or quite possibly the most exhausting aspect of ones day.

We have had a bunch of conversations about the Tooth Fairy. Such as when she or he will come? Why it’s a he or she? What will he or she bring? Where will my tooth come out? Will it be scary? You name the question, Sawyer has asked it! Even Alex Trebek from Jeopardy would turn off Sawyer’s buzzer!

Two weeks down and Sawyer and I are out walking Oscar. Here is a snippet of our conversation as we walked back home.

“Daddy, I lost my tooth at school,” said Sawyer.

“Sawyer, let me see,”I yelled!

“No, I will show you when we get home. I will show you then Mommy. After that, the Tooth Fairy will bring me something special, he said.

So there we have it, my rut in writing was saved. The Tooth Fairy has come to the 603 and made me excited about the present rather than always reaching into the past.

The pictures paint the story you wish to tell

Social media can be my best friend at times. I’m guilty of putting up a ton of photos that chronicles everything that we do. On the other side of the coin, I manipulate the picture to share only what I want the public to know. This is when social media becomes my worst enemy. This is my daily tug of war when it comes to my family.

What do I share? What don’t I share? What should I share? Should I share at all? All of these are loaded questions that sometimes I have the energy to face them and sometimes I don’t.

The thing is that I didn’t order Autism on a menu for Sawyer. It’s not something that I picked up at the grocery store in aisle 2. It fell in our lap like an ace from a deck of cards. It wasn’t a likely draw but it was the card we were given.

Even a few years into the new world for us, I have been guilty to painting a picture that the world could see.

Many see the happy boy with a smile along with his brother and sister. They don’t see that frustration of slamming his hand to the ground, the long stims of trying to regulate himself as others stare at him. Many don’t see his day to day struggles.

They aren’t here with us as we worry about his future. The endless questions of what Sawyer will face as he chases independence and the survival skills to be on his own someday.

What I do know is that I refuse to chronicle each second of a roadblock. I rather celebrate each success and open up the world to what we know.

So with each picture I share only tells a fraction of the story, I hope everyone can enjoy the life of Autism and Sawyer that I’m trying to share. That’s my favorite picture to show.

The new normal

When I was a child, I loved looking through a kaleidoscope. I would marvel at the colors and patterns that would form as I would turn the dial both clock and counterclockwise. It was almost like my version of Wonderland or Oz.

Just imagine a sea of colors just for a matter of seconds. It took away any thought or fear that existed.

For me, I could return to the world that existed. I could put the kaleidoscope down and return to color pictures of Clifford. I was game to head outdoors and ride my bike. I would take my GI Joe action figures and create a battle in a sandbox.

That was my story. It was what I considered to be normal. When it came to Sawyer, the term “normal” was something that I couldn’t grasp. I had zero clue. However, I became an expert faking that I knew him.

I would pick him up for school and ask him about his day. All he would do would repeat things that I asked him. Otherwise, it was a line from Frozen.

People would ask me how he was doing. I’d say great. What else would I say? I was only going with what I hoped for.

That was my truth.

Sawyer couldn’t play. He didn’t color things for longer than two minutes. He had zero interest in puzzles. He wasn’t like other kids.

His normal wasn’t mine. His was new. It was on me to find a way to learn it. It wasn’t up to him to teach it.

The Little Family

I will be the first one to admit the the past is a nice place to visit but not to stay. Unfortunately, I was guilty in looking back when it was too little and too late.

We were now a family of five and the jokes about going from a man to man defense to a zone were getting really old. As matter of fact, the world of Autism had zero defense. There was no scheme that could prepare us for what we were embarking on. Rubin island was no picnic.

I remember picking Sawyer up at the after school program that he attended. There were kids his age. They were running around on the playground. I saw the excitement in their eyes that they were outdoors. I heard the laughter of climbing structures. I felt childhood like I expected it to be.

I had it before. I lived it. I breathed it. I lost it.

It was gone as I looked for Sawyer. I just hoped he would be a part of the action. I wanted to walk onto the playground and feel the past in the present. I wanted it for me.

There he was though. All by himself. It was like a hermit in exile. There was no laughter either. All I could see was someone different than the rest. It wasn’t fair.

What was fair? Was it fair that I wanted Sawyer to experience the childhood that his brother and sister had? Was it fair that he was perfectly content swinging while I wasn’t?

Our little family had grown up but it was me who needed to also.