autismdadinthe603

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

In 2011, Sawyer was born. I felt like I just wanted to rush him out of the hospital and get on with our family. I wanted no part of what I had already experienced with our two oldest children who were born in 2006 and 2008. That was my mindset.

I was numb to the nurses coming into the room. I was numb to the picture of Sawyer’s foot print. I had morphed into a father who wanted the closing of the curtain of a school play. I had zero appreciation or concept of the moment.

The love was there. Somewhere amongst my lifeless affect, it existed. I didn’t panic. I knew it was a rut. I suffered from just expecting what was to come.

However, it was a missed opportunities that I’ll never get back. I didn’t understand the opportunity of bringing another child into our world simply because I had already been a part of it twice.

What an awful feeling to carry with oneself. Imagine looking back and missing out on what was so precious? To this day, it bothers me.

Fast forward to now and my rut was on me. I’m not the same. Sawyer being autistic opened my eyes. I once would see a blue sky as blue. I now recognize the different shades and what the clouds can appear to be.

As I approached this summer, I was focused on moments. I refused to lose track of the importance of recognizing one.

I have seen a boy who held onto the side of the pool now jump off the diving board.

I have traveled to plays with him as he expresses how excited he is to be there to see a show.

I watched him conquer a zip line up north as he flew above ground like a superhero.

These are successes that would be for anyone regardless of their challenges.

You may have thought you once knew me? However, I am still learning myself.

Why am I autistic?  It’s a loaded question.  It is not one I thought I would hear from Sawyer yet.  Actually,  I still haven’t heard it directly.  It was directed to my wife, Kellie.  She did respond.  In her soft, direct, and in a nurturing way, she was able to share that he was born this way.  His brain just works different.

When Kellie asked if he was OK being autistic? Sawyer said he was and that was fine.  Case closed.  A give and take conversation in a moment.  If there was a hurdle, Kellie jumped over it with him.  She didn’t knock it over nor did she run around it.

Why am I autistic?

I on the other hand am struggling with my own response.  What if he asks me next? It is like in the movie, Good Will Hunting, when Robin Williams plays the role of a therapist.  As Williams explains to Matt Damon’s character who is a troubled foster child that he doesn’t know the life that he has lived by reading the book, Oliver Twist.

In my case, I can’t answer the question of what Sawyer is asking based on what I have read or been told.

Why am I autistic?

I don’t know the answer.  I don’t search for answers.  I don’t wish for answers.  This is who I am.  However, whatever I am may need to rethink my take.  Sawyer being autistic is who he is.  He is entitled to understanding the why, if that is important to him.

Why am I autistic?

I only see Sawyer.  He is autistic.  His brain works differently than others.  He can see things I can’t see.  He learns in ways that I don’t understand.  He hugs me by leaning into me.  He loves routine.  He loves our family.  He is now showing me how he loves himself.

Why am I autistic?

Sawyer, we will find out together.

Years ago we went to Disney. We watched Sawyer cry, scream, and shake at various points of our vacation. The magic of Disney may have been captured in pictures but there was nothing magical about our trip. It was a week long slugfest as the boy who loved Mickey couldn’t find joy in his park.

It was just a few months later that Sawyer would receive his diagnosis of Autism. Our world of understanding his needs had just begun.

Some of the biggest challenges for Sawyer is large crowds, noise, waiting in line, taking turns, and being allowed to do something himself. As you can imagine, a theme park if not planned accordingly can set him up for failure.

Thankfully, we are aware that most theme parks offer supports for those with special needs. So when we traveled to Story Land up north in New Hampshire, we were set up for the best experience possible.

Sawyer was excited. His vertical leap was at its all time peak from the moment we entered the park. And to enhance his experience, we were given a pass that gave him access to get on rides at the exit line rather than the entrance.

This was a game changer for Sawyer and our family. It’s almost like a golden ticket for a theme park.

So on a nice day, we had no lines, and the kids could go on rides with Sawyer as my wife Kellie and I watched.

All was great. All but our final ride before departing the park. As we had our pass, one of the workers looked at it and said, “well, the line is long enough so I guess this time, you can use it here.”

That was her making it her choice. Sawyer doesn’t have a choice. Kellie in a very direct tone informed her that the pass doesn’t work that way and our kids would be getting on this ride like it was explained to us. The worker didn’t say anything else.

The kids got on the ride. They had fun. We went home.

Here is the heartache of this. We had a great day but one part of our day reminded us of what is our reality. People see Sawyer and don’t see Autism. They don’t see it because he looks like any other kid. However, this doesn’t mean that he doesn’t have special needs.

Nobody made that choice for him. We never thought we would need a pass to be in front of a line.

We had it because he needs it. It’s a support. We just continue to fight for the understanding of the support he needs.