autismdadinthe603

So there I was sharing a story about an author who took 15 years to get his work published with my 5th grade students. 15 years. That’s nearly the length I’ve attained in years teaching. At that moment, I really didn’t think much more about it. It just came up in conversation about an author and how long it took him to get his book published. It was just conversation.

This was weeks ago as I have not written anything of substance that I’ve cared to pursue. This even includes my children’s book (The Code of Sawyer) that seems to stare back at me as I stare at the cursor that I hope has magic to turn this attempt into greatness for audiences to understand our version of Autism.

This is my internal strife. Why write?

My blog has been dormant. It’s not that I don’t have a laundry list of things to share about Sawyer. Chronicling his success and struggles are a daily habit of mine. Getting to watch him grow is one of the highlights of being a father to him and his four siblings.

Do I think I’m a good writer?

I believe I’m a good story teller. And telling the story of Sawyer is something I feel like regardless of how I put it together is a raw approach that hopefully anyone who reads my work can understand and want to understand.

Does it matter if people read my work?

I used to be disappointed when people I knew didn’t read anything I put together. My initial thought was if I can’t get people that I know to read, how in the world will anyone else read it? Not to mention, do those close to me understand how difficult it is to raise and advocate for Sawyer? Do they see a picture of him and see the smile and believe that’s him and Autism floated away?

So what now?

It all comes back to the author. He believed in his work. He had his doubts. He had his insecurities. However, he learned to not give up his desire to tell his story. I will do the same with a newfound realization is that telling my story of Sawyer will always be something that evolves just like his dad.

In 2020, you will hear about the ballet bopping, page turning, basketball shooting, hand writing, homework stomping 3rd Grade something through my eyes and his actions.

Happy New Year!

6 weeks. What does that mean? For our family, it’s the one year mark of the birth of our twins. One boy named Simon. And one girl named Rosie, To say that having two children at once has been an adventure has been an understatement. However, it’s also meant a year of growth, chaos, and exhaustion.

Interesting enough, a year ago, we were parents of 3. Our youngest Sawyer being on the Autism Spectrum. My focus each week was to chronicle his triumphs and tribulations as a 7 year old finding his way in the universe.

I was marginally successful. Writing was easy for me. I could set aside time and focus on whatever I noticed and do my best to convey it anyone who would listen. I would put it out on Twitter, Instagram, Facebook, and just share it until I was ready to move onto the next piece.

Sometimes 200 people would view it. Sometimes 100 people would share it. Sometimes 50 people would comment on it.

So what happened? Why did the noise fade away? Why did people stop following?

They didn’t stop. It was me. I legitimately ran out of gas. I had stories to share but struggled to write. That’s on me.

When I ask myself why do I share all things Sawyer, it’s because I pride myself on being his father. I find myself fascinated on how he thinks. I struggle to understand what he needs and what his future may end up being.

So I’m back to share stories of a boy who can read maps but not add single digit numbers. I’m back to point out that being a 3rd grader is the ultimate test to see where Sawyer is with age appropriate play. Most importantly I’m back because I love to write about my son, Sawyer. He’s the most lovable, caring, inquisitive 8 year old I know.

Thank you for reminding me that the game is never over unless you don’t check back in.

I saw the clock each hour many of times since October. That’s when my wife Kellie and I had our 4th and 5th child. That is when our family in theory became complete.

The near 9 months since then has been a grind. I knew it would be. You don’t have 5 children, 2 of them newborns, 2 knocking on the cusp of teenage youth, and 1 with Autism , and forecast smooth waters. That’s impossible and a fantasy.

What I wasn’t anticipating was the loss of a dear friend who battled to his last breath in a courageous fight with cancer. The aftermath of his loss and how it affects those who loved him knocked the wind out of my sails.

As Sawyer would say to me, “Is Chris in heaven?” I would say, “yes.” However, in Sawyer’s world, heaven is a place where Michael Jackson, Joe the dog, and now Chris reside. Nobody else. Those are the only 3 people he knows who have died.

Sawyer sees things so black and white. Sometimes I wish I could see it just like him but that’s not me. And it’s a big part of what makes Sawyer who he is.

For Sawyer, life goes on. He is in his own world. He hears someone dies and he can repeat it. He can script a conversation that he heard to make it appear like he gets it. However, the true context to what reality is hasn’t hit him.

Maybe it’s his age? Maybe it’s his developmental delays? Though he closing those gaps that we see some behaviors that mirror that of a kindergartener rather than a soon to be 3rd grader.

Here is the thing though, Sawyer cries when he spills water. I cry when I lose someone irreplaceable. Explaining that to him may be a life long process. I suppose at age 10 it could make more sense? Maybe age 12? Maybe 15? Maybe this means more to me that this understanding needs to happen? Maybe I’m just scared that he will never understand?

I do know this that the loss of my friend hurts. It hurts because I didn’t think it would happen. It’s not fair and I’m angry about it even months later. I just don’t understand why it happened?

When I hear Sawyer asking if Chris is gone, It’s hard to converse about it. However, after a few months of not writing and spending time thinking, I have realized that a major loss can’t be healed. It can only be accepted.

I continue to accept Sawyer’s understanding of his world and I begin to accept the loss in mine. Once again, he teaches me when I least expect it.

Off the bus she ran. Tears down her eyes and her face flushed red. One of her friends said the word “retarded” a few times. In what context it wasn’t clear but she heard it. It hurt her feelings that it was said. She had questions on why the word still exists.

The child who heard this was my daughter, Evelyn.

A group of kids were chatting. One of them mentioned that her parents made fun of the short bus. They laughed at the autistic child who rode it. Her brother and sister jumped in mocking the child around the dinner table.

The adult who heard this was me.

Like my daughter, my feelings were hurt. Regardless of who says hurtful words, regardless if it’s hurtful actions, it’s out there. It exists.

This isn’t a specific attack on Sawyer but I take it as so. Sawyer has special needs. He could easily be the kid made fun of. Maybe he has been and hasn’t realized it. I hope that day never happens but we have to be ready if it does.

As Sawyer’s father, I love sharing stories about him. I try to explain who he is, what is difficult for him, and what is not. That’s a part of of who I am and not just about raising awareness for Autism.

Sawyer Rubin is autistic. He is different. He is not immune to hurt feelings. He has them and expresses them in ways that may not be like you and I.

This Tuesday is World Autism Awareness Day. We will be wearing blue for Autism. We will be wearing blue for Sawyer. We will also be wearing our colors for those who have special needs. Those who are made fun of or mocked. We are with them. We will support them and we will continue to educate those who want to learn.

It’s not about the right thing to do. It’s about what we love to do. On April 2, spread the awareness!!!

Dear Sawyer,

I can tell you what you don’t remember. Like the time you were a baby and slammed your feet on your mattress that echoed through the ceiling in our kitchen.

My look of puzzlement would lead to a bout of laughter. It was always expected during the morning hours.

I thought it was cute and it would pass. I never thought it would be the beginning of parts of you that I wouldn’t understand.

At two years old, we would prop you up on a pillow to drink milk out of your cup. Your muscle tone was too weak to do independently.

At age three, we went to the most magical place on earth. However, the familiarity of Mickey Mouse brought you zero joy as you were overwhelmed by the crowds and the long lines.

Months later was your diagnosis of Autism. We finally were given a gateway to hope. With that hope, we began to understand the importance to being your voice until you developed one.

We watched the strides you made at age 4, age, 5, age 6, and age 7. From chewing food, to communicating, to going to school, and making friends.

We have watched you learn to read, learn to write, and inform us when we have taken wrong turns.

All the milestones are just a reminder that what we may not understand is just questions. Your ability to move forward and succeed is always your answer.

Whatever walls you encounter, you go through them. You continue to inspire us with your love and desire to work hard at all you do.

Age 8 is here. If you have noticed, you have made me understand that each year is a building block to where you are. And I can’t wait to see where this year takes us.

I love you,

Dad

I start. I stop. I stop. I start. This has been my dance over the past two months.

I place my fingers on the keyboard and I blurt out a thought. As I stare at it for a few minutes, I delete it. I’m like a toddler tracing letters in shaving cream. It is real fun until I realize I’m making a mess that only i can clean up.

This is the life of a father of 5 right now. I hold onto the few moments of self reflection. It happens but not like it used to.

Here is the thing. When you have a lot children, you have to find ways to give them what they need. For 4/5 of my children, I tell myself that I get it. I may be kidding myself with my proclamation but when you’re averaging about 4 hours of sleep per night, you too tired not to believe in yourself.

As the school year has unfolded with Sawyer, I’ve had to reevaluate my goals and expectations because they were for me and not for him.

This mindset can happen when you want so much for things to unfold a certain way. I wanted him to be able to close gaps that have unfolded over time. Such as, making friends. Such as, keeping up with grade level work. Such as, being able to communicate his feelings in a age appropriate manner.

However, these were my goals. Articulating my goals as his goals isn’t fair. I didn’t really notice this until one of my 2am baby feedings.

It’s amazing what goes through your mind when your fighting to stay awake.

Regardless, I started to look at what Sawyer has been achieving versus what i want him to achieve. To be specific, Sawyer can calculate elapsed time whereas I was too busy looking at his struggles with basic computation.

Sawyer has made some friends. This goes beyond play dates. He even recently went bowling with a family without us. We are well past the moments of being petrified of how he would interact with adults that weren’t family.

Sawyer has been able to overcome his obsession with music being on in restaurants. Thank goodness that he enjoys eating out again.

So these benchmarks are uncharted waters. They are this way because I wanted to see them. Though my dance is scattered, my eyes have finally opened again.

My life has morphed into the second season of Lost. This was when Desmond would be frantic if he didn’t enter the numbers into the computer every 108 minutes. His time couldn’t be wasted and his exhausted soul couldn’t be broken.

While home, our lives run on 3 hour intervals. This has been the around the clock cycle at the Rubin household. What I’m getting at is the Rubin twins like to eat!

Ironically, Sawyer’s life as the big brother seems to reflect his life as the younger one. I keep waiting for this big outburst of something. It’s almost like I’m waiting for it to wake me up as I’m shocked that his adjustment has gone so smooth.

To be fair, our family has undergone months of good fortune. Our community showered us with kindness whether it be meals, stacks of diapers, wipes, and their time. Our friends have gone out of their way to offer their love and support. And my school community made me feel like a celebrity with their overall kindness and excitement towards us. Quite frankly, I don’t know how to thank all of the above as words can’t do it just.

To add to the thrill of it all, my two oldest children’s sports teams qualified for completions in Orlando, which was parlayed into a Disney trip to Sawyer.

For the record, Sawyer at Disney at age 7 was a far greater success than pre diagnosed Sawyer at age 3. Though overstimulated at times, he had the time of his life and he has his grandmother to thank for the entire trip!

He met princesses. He swam. He went on rides. And he loved every minute of it!

So here we are about two months post our new additions. It’s very surreal holding newborns at this point. I’d be lying if I didn’t say that each day I look at the babies and compare what they do towards the baby Sawyer was. It’s impossible not to.

Sawyer was a challenging baby. He couldn’t be comforted. I don’t want life to be as challenging for the twins as it was or even is for him.

I don’t hate myself for saying that though it hurts to admit it. As much as I thank everyday for Sawyer, I don’t thank Autism the same way.

And that’s where I’m at as I take it a day at a time. And now I’m back.

In true Rubin family form, we welcomed our babies into the world in loving chaos a week ago. A scheduled C section for my wife, Kellie, went as expected. It was unpredictable, exhausting, nauseating, and well worth it. Easy for me to say as I was right by her side rather than living the battle.

It did bring us to a complete family. Simon Meyer was born at 1:21 in the afternoon with his sister, Rosalie Jae born a minute after. Their weights at 6.8 and 6.7 respectively. If you ever met my wife, Kellie, you would never think she could have two babies in her belly at that size.

Not to get lost in this whirlwind is the pure joy of welcoming children into this world. As graphic as the scenery is, the first breathes taken is a transcendent moment in all of our lives. If there could be a pause button, it would have been right there.

As I stood in the OR, I pivoted between the twins and my wife. I was just attempting to soak it in and was just hopeful we could get into recovery and begin our lives together.

Our three older children were eager to visit. However, we just had to see how the afternoon played out before their first meeting.

For months, Sawyer would stim like it was Christmas morning as he talked about the babies being born. He even said to his big brother, Cobe, that he would have to teach him to be a big brother.

Once we hit October, he talked about the twins arriving soon. He did this everyday up to the delivery.

Thankfully the kids were able to visit. A depleted Kellie, who lost a ton of blood due to a postpartum hemorrhage along with vomiting wasn’t necessarily in prime condition to be seen.

To make matters more stressful, Simon turned blue, sounded like a dolphin and was moved up to the NICU.

Like I said, this narrative was fitting for Team Rubin.

Disclaimer: Simon has premature lungs and is making great progress. He appears to be a few days from being released:).

As all three older Rubin’s arrived to see their mom and new brother and sister. They had looks of excitement and puzzlement in their wide eyed faces.

We did our best to normalize everything as quite frankly in that moment, we had little clue of what to say.

Thankfully, there was Sawyer. He held his baby sister, Rosie with joy but needed to see, Simon.

He marched into the elevator and waited his turn to push the correct button. He washed his hands as he was instructed and stood at Simon’s side to do his best Doc McStuffin’s diagnosis by telling him that he’d be ok with some rest.

As he was about to exit, he turned back into the door to wish Simon a happy birthday.

As always, the normalization of the moment is held by the one who we least expect it from. That’s the big brother, that’s Sawyer.

It’s been awhile. Longer than I’d like but as we await the birth of our twins, my time has been all over the place. As matter of fact, if I were to be hanging from the last fiber of a rope to survive, I’d wouldn’t be that far off.

This is the story. I’m teaching a new grade, I’m learning an entire new culture of what will be successful and what won’t be. Regardless, it has been a lot of fun, time consuming, and extremely challenging.

Speaking of challenging, we learned something new over these last few weeks. It was hardly on our radar but is alarming to say the least.

The thing is that is has been very easy to focus on the success of everything Sawyer. He had a great summer of conquering his fear of going under the water. He attacked the diving board like it was brick wall by smashing through it. And he did so in a matter of weeks.

This has always been the case in any obstacle. Sawyer gets scared, he works through it, he conquers it, and he moves on.

Unfortunately in the world of Autism, it’s typically onto another topic to perseverate on. Our current fixation is music.

Two things that give Sawyer a lot of excitement is going out to eat and listening to music. He is well known for asking for a little Michael Jackson the moment we get into the car. Or he will be not opposed to a repeat rendition of a Pink tune.

This was a given. What wasn’t a given was his insisting of no music being played in the car anymore. That is if he can’t select the song. So for now, it’s either his play list or nothing.

To make matters more peculiar, he will only have his hands on his ears if he hears music at a restaurant. He will hardly eat and the once bopping of his head while singing is gone.

We watch his face tense up. We watch his food sit. All he does is ask who is singing? If it’s a boy or girl singing? And when can we go?

It’s almost like it happened overnight. What in the world happened? Do we bring headphones with us to dinner? Is it a sensory issue? Is it a loss of control?

I know this as every time you conquer something in Autism, you are onto something new. We were riding high on the summer success, basking in the fun in the sun. Now we are back at ground zero in another pocket of fear.

Bring on the next challenge.

Dear 2nd grade,

We are only 4 days into the school year. However, you have been on my mind for many years. I looked up to you as Sawyer began preschool, traveled the halls of kindergarten, and progressed in 1st grade.

Ironically, it was you that scared me all along. I knew there would be a day that Sawyer would be with you. His spirit, his excitement, and his curiosity would enter your world.

So here we are. My fear is real. 2nd grade seems like where old kids reside. Knocking on being 8 years old scares me. Because the more I see Sawyer’s peers, the more I see the difference. He is not like them. And how long will his peers tolerate him being different?

Sawyer enjoys the monkey bars, pretending to hunt for treasures, and repeating tv show openings so he can hear the same theme song. This is where he is developmentally. Though he is 7.5 years old, he behaves more like that of a 5 year old in many ways.

It is charming, cute, and loving. It’s also should be noted that he is making phenomenal progress. His conversations, his reading, his math, and his writing have blossomed. This is exciting.

It’s also a cruel reminder of what is real. Sawyer’s peers are moving on. They are developing as they should.

What was once a collection of acceptance could expire soon. As friendships form, homework begins, and expectations accelerate, I worry.

And I worry. That is my problem. Not Sawyer’s, not his teachers, and not his peers.

So though I welcome 2nd grade into our lives, I do so cautiously. I just want Sawyer to continue his path while I learn to continue to embrace his differences.

Have a great year,

Autismdadinthe603