Wednesday, September 7, 2016

A Night At The Beacon (Haydn's First Concert)

“That was a memorable day to me, for it made great changes in me. 
But it is the same with any life. Imagine one selected day struck out of it, 
and think how different its course would have been. 
Pause you who read this, and think for a moment of the long chain of iron or gold, 
of thorns or flowers, that would never have bound you, 
but for the formation of the first link on one memorable day.” 
- Charles Dickens

Haydn sat next to me, hands gripping the armrests, toes tapping on the floor, his eyes locked on the stage in front of him. The theater was almost full and the air was buzzing with anticipation. The houselights dimmed for a second, then shut off, leaving us and the rest of the crowd in darkness. Streaks of white light flared out from the back of the stage and Haydn's newest adventure began.

For those of you new to the program, this story (as are the rest down the rabbit hole we call Haydn's World) is about my son Haydn. Haydn is 11 years-old, wicked smart, has perfect pitch, is way too good-looking to be my kid and lives with an autism spectrum diagnosis know as Asperger Syndrome. A life influenced by Asperger Syndrome is often challenging, and Haydn's life is no exception. Asperger Syndrome affects every single aspect of Haydn's living experience, every day, everywhere he goes. His ears, his mind, his emotions, even the way he moves his body are all affected by Asperger Syndrome. The way the world touches him can lead to anxiety and fear which leads to (among other things) idiosyncratic behaviors and unhealthy coping mechanisms that, if left unchecked, can disrupt his life. 

Twitchy, snapping fingers. 
Wild, unfocused eyes. 
Repetitive body movements. 
Repetitive conversation patterns (often questions).
Even more 'typical' behaviors like frequent trips to the bathroom. 
All are indicators of high stress and if left unchecked can evolve into ritualistic, crippling behaviors that are difficult to eliminate and have the potential to rule and ruin Haydn's life.
For years, external forces and the internal forces that reacted to them caused nothing but trouble for Haydn, and for years Haydn developed ways to cope with, and eventually eliminate many of the anxiety sources in his life. But Asperger Syndrome is the gift that keeps on giving, and it always seems that when Haydn gets the major problems under control, new problems pop up in their absence (sometimes new, sometimes an old one that boomerangs back on him). 

There are no days off from Asperger Syndrome. It doesn't go away. You don't grow out of it. Asperger Syndrome is forever.
And Asperger Syndrome is a part of who Haydn is... And while it can be challenging, it has helped Haydn develop a strong character and fighting spirit that never lets up. 


For our purposes the Asperger-influenced challenges we must consider today are extreme anxiety (fueled by anticipation, the unknown and social situations) and sensory processing disorder (super-sensitive ears, which leads to physical, emotional and psychological discomfort). 

These details must be distinctly understood, or nothing wonderful can come of the story I am going to relate.
Sorry Mr. Dickens...

Haydn's 11th birthday was last month and since he is almost a man now, I decided to take him on an adventure way outside of his comfort zone. Haydn loves music, and his two favorite bands are The Beatles and Alice in Chains. 

It just so happened that one week after his birthday one of those bands was playing a show nearby.

So, I bought two tickets to an Alice in Chains concert.

At The Beacon Theater.

In New York City.

Did I mention we were going waaaaay out of his comfort zone?

I bought the tickets months in advance and surprised him two weeks before the show. His response:

"I'm not sure I want to do that."
Not unexpected...
Haydn's knee-jerk reaction may often be a negative one if the potential situation appears (to him) to be challenging and this was no exception. He never participated in anything even remotely close to the challenge of going to a concert. 

There is always a secondary reason for many of the things we do. Haydn may not be aware, but I try to find a challenge or teaching point in every adventure. 

A potential triumph lurks around every corner.

His initial statement was not great, but it was not a NO. 

It was not I CAN'T do it, it was I DON'T WANT TO...
And we can work with that.

"All things are ready, if our mind be so" - William 

Mommy and I spent the majority of the last eight years helping Haydn learn to handle the challenges life throws his way. His neurological toolbox is well stocked with techniques and coping mechanisms, tools that he can use to face down anyone and anything that troubles him. 

His response to the challenge of the concert, the tool he chose to use: 
It can be helpful to prepare for a potential challenge, and there is no such thing as too much knowledge, but there also has to be a limit to the amount of prep Haydn is allowed to do. I don't always let him do research (remember those ritualistic behaviors I mentioned earlier?), life is full of surprises and Haydn has to learn to deal with the unexpected, but if the situation warrants it, I will allow a little prep. The Alice in Chains concert was a situation potentially rife with challenges (and a whole new experience unlike any other for him), so I had no problem with his getting himself ready. 
He checked out the Beacon Theater website and watched a documentary about the renovation of the theater. He also had the good fortune of having gone to another venue, the Count Basie Theater, on a field trip last year and had a collection of positive memories and experiences from the trip to build off. It took him about an hour, and he managed to get himself at least open to the possibility that this could be awesome.
My only contribution to the preparation was to find a way to protect his ears from the amplifiers. I ordered a variety of ear protection online and Haydn and I tested them out (my bass amp cranked in the bathroom) until he settled on an earmuff style set that he felt comfortable with.
Then we closed the topic (no conversations) until the night before the show.

I waited until the night before the show to open the topic and Haydn and I had a brief conversation about the upcoming adventure. I asked him if there was anything he thought he might need to make our adventure as awesome as possible, and after a few moments thought he asked;
"Can we drink a lot of Dr. Pepper?"
"Haydn, we can drink all the Dr. Pepper you want."
"OK. I'm good"

The next night, Haydn and I drove east toward the city. Haydn sat in the seat next to me. We had a couple of Dr. Peppers in the cup holders and Haydn had a gummy lifesaver on every finger. We cruised down route 4 and listened to his favorite Alice in Chains songs. He looked calm and composed.

"What do you think kiddo? You ready to do this? The brain nice and quiet?"

A noisy brain is a stressed brain, a quiet brain can handle anything
He looked out the window, tapped his fingers to the soothing chords of 'Don't Follow' and said:
"I did the Count Basie Theater... I can do the Beacon Theatre."

And that was that.

Anxiety gone... 

And that was also the last mellow moment of the night.
Things got louder and rowdier the closer we got to the theater and by the time we parked the car, Haydn was amped up and ready to rock.
We walked across Broadway toward the theater and Haydn stopped for a second to take a picture:

We walked into the crowded, noisy lobby, Haydn stopped, put on his ear protection, and strode right into the crowd. I watched him strut (and believe me he did strut) into the middle of the lobby and pointed out the beautiful light fixtures and the awesome concert shirts hanging behind the counter. I watched and listened and laughed at his observations and marveled at the fact that I could not detect any of his anxiety indicators. He did not rub his nose, twitch his fingers or flap his hands. 
Not once.
He stood in the middle of the chaos with a huge smile on his face and pointed out all of the details that I should remember (lights, paintings, everything), grabbed my hand and led me to the concession stand. We bought a few water bottles and headed to our seats.
And they were great seats. 
We sat in the orchestra pit about ten rows from the stage (thanks Matt) and watched the weirdest opening act I have ever seen.

Puddle's Pity Party.

Google it. The less I write about it, the easier it will be to flush it out of my memory.

Opening Act over, a quick bathroom break, and then back to the theater. 

Which brings us back to the beginning of this story.
Houselights off, stage lights on, and the opening chords to 'Hollow' filled the theater...
Haydn jumped out of his seat and threw his fists in the air. 
Locked in from the first chord, Haydn was one with music.
The show just began and I could not have been happier. The night could not get any better.
And then it did.
Halfway through the first song, Matt (the fine fellow who go the tickets for us) came over to our seats and said:

"Hey guys. I have two empty seats that will be even better for Haydn. Follow me." 

From there to here, from here to there...

In Haydn's World there be nice people everywhere.

We followed Matt up the aisle and the second song kicked in...

"Holy sh*t Daddy! Them Bones! We gotta get to our seats!"

You gotta let that kind of language go when you're at a rock concert...

Haydn took his ticket, ran to our new, more awesome seats and set up in the aisle. He jumped and sang and banged his head like a maniac right from the get-go. 
Haydn was locked in on every note, every movement of the band. And to be honest, for the first song or two, I was so locked in (the boys sounded great that night) I did not notice what was happening two feet to my right. After a couple of songs I pulled myself back into my own head and there in the aisle next to me was Haydn, jumping and bouncing with the music. 

The theater was filled with people, singing and rocking out... and there, right in the middle of it all was one little guy, standing in the aisle, winning the battle with himself and the room.
One little guy having one of the best nights of his life.

Small in stature, mighty in spirit... that's my pal Haydn.

I was excited and surprised at his reaction to the madness around him. I knew he would figure out a way to make things work out for him (he always does), but I did not expect it come so easily. But as surprised as I was at the way he immersed himself in the music and the entire concert experience, the most startling thing was the look on his face.

The music was loud, the room was total chaos, and Haydn had a serene, peaceful expression that I can't recall ever seeing before. He was so connected with the music that none of his usual anxiety triggers (which would be EVERYTHING around him) could touch him.  

Anxiety, Fear, Autism, Asperger Syndrome...

All that tests and tries him. 
All the forces internal and external that challenge and frustrate him were nowhere to be found.
None of that could touch him.
His was an expression of pure joy that I have never seen before.
A calmness in the midst of a storm of energy and excitement.
For one of the few times in his life, Haydn had no anxiety, no fear, and no stress. Asperger Syndrome and the autism spectrum would not and could not have a negative influence on his state of being. 
There was nothing hiding behind that smile.
He was locked into the moment. The music, the band, and nothing else. 
Nothing in the future or the past mattered. 

This may not seem like that big of a deal, but for Haydn it can be an almost impossible state of mind to attain.

“To get the full value of joy you must have someone to divide it with." - Mark Twain

Haydn, his mind and heart girded with the power of music, went spread his unique and joyous way of living with everyone around him.
I looked to my right and saw three gentlemen in their seats across the aisle behind us drinking, singing along with the band, and smiling at Haydn.
The first gentleman in the aisle seat yelled over to me, "How old is your kid?"
"He's eleven!" 
"No f**king way!" shouted gentleman number two.
"It's true."
"That kid f**king rocks!" declared gentleman number three.
"Thanks. I'll be sure to tell him."

I had to smile. The one person in the room who probably should have been feeling the most uncomfortable was spreading nothing but joy and happiness all around him.

If they only knew...

A woman across the aisle danced like a maniac to every song and Haydn kept looking over at her. She caught him checking her out and flashed him a thumbs up and a big smile. Haydn's reaction:

He threw his right fist in the air, jumped up high, and threw it back down. He looked over at her and raised his fist in the air and she did the same. And, of course, for the rest of the night, every time he looked over, she threw him the fist salute and smiled. 
During another song Haydn jumped and thrashed and drove his elbow into the stomach of the biggest guy in the whole damn theater, almost knocking his beer out of his hand.
I looked over, ready to apologize (and possible catch a forearm to the face) when he said, 
"Is that kid trying to start a pit over here?"
"It's definitely possible."
He looked at Haydn, still locked in the zone, oblivious to all around him and banging his head like a madman, smiled and said, "Well, I don't want to f**k with that kid. I'm outta here."
He gave me a thumbs up and continued on to his seat.
Haydn, oblivious to my exchange with the heavy metal hulk, asked for my phone for a moment, held it over his head and snapped a picture:
"I just need to get one picture Daddy."

He handed the phone back to me and moved back to his rock spot. While Haydn rocked the aisle, some other fans walked by and quite a few of them stopped. They listened and watched the band with him and some talked for a few seconds. Others stayed and tried to show him a thing or two about killing it at a rock show. Every single person looked over at me before they interacted with Haydn, and every one of them smiled the whole time. One guy stayed a little longer and tried to teach Haydn how to give the heavy metal 'horns up' hand signal. Unfortunately Haydn's hands don't ways cooperate with his mind, and try as he might, he could not get his hand in the proper position. The best he could do was a somewhat corrupted peace sign, or just the middle finger raised high for all to see (perhaps we can amend his I.E.P. next year and set some new o.t. goals). 

And remember those three gentlemen seated a few rows behind us?

They found their way up the aisle and stood right behind Haydn. They mirrored his moves and he copied theirs. Between songs they talked about favorite songs and the band in general. After a few numbers, they went back to their seats, but before they left, gentleman number two looked at me and said, "This kid really knows his sh*t. He's f**king amazing. Don't let him forget that."

Fists were bumped, high fives flew all over and Haydn kept the rock going all night long.

Nothing could stop Haydn from having a great night. 
Every single thing about the concert was awesome to him. He loved the stage lights and effects. He was swept up in the energy of the crowd and the music lifted him to extraordinary heights of pure joy and happiness.
And when the band spontaneously broke into the opening riff from the Van Halen song D.O.A., he looked at me and said, "Hey Dad, that's song number 8 from Van Halen 2! D.O.A. That is totally sick!"

After a long set, the band left the stage and Haydn turned to me with a look of serious concern on his face.

"Dad. They better not be done. They didn't play 'Rooster' yet."
"Haydn, do you think there is any chance Alice in Chains will give a show and not play 'Rooster'?"
"They better not. And they should play 'Would' and "All Secrets Known' and 'No Excuses' and 'Voices'."
"Let's wait and see kiddo."

Well, the band did come back out. And they played four out of his six choices (left out 'All Secrets Known' and 'Voices') and Haydn turned the crazy up a notch. Foot stomping to every downbeat, singing every song, Haydn kicked out the jams all the way to the end. 

The last song, 'Would,' brought the house down. Every fist in the air, everyone (Haydn denies it, but I saw him singing every word) singing until the finally note rang out in the darkened theater. 
The crowd erupted in a raucous round of applause, the houselights came up, and just like that...

It was over.

Haydn and I joined the exiting crowd and walked through the lobby out into the cool summer night. 
We stood outside the theater and I put my arm on Haydn's shoulder. 
Haydn smiled and looked up at me. 
He looked exhausted, but happy. 

"It's late. I need to get home and get to bed."

"Did you enjoy yourself tonight kiddo?"
"Yes. That was an awesome concert Daddy. We should go to another one soon."

I'm Youth, I'm Joy. I'm a little bird that has broken out of the egg."
 - Peter Pan

Tuesday, February 16, 2016

A New Perspective, A New Approach, A New Hope...

Welcome back to 'Haydn's World.'
The posts have been few and far between the last few months and to be honest, it's not from a lack of writing (or caring)...

I have over 60 unfinished stories stacked in my hard drive, begging for endings. 

I have not been motivated to finish the stories (most of which are positive and fun) because I felt for some time that things were not quite right around these parts.
Haydn is doing well in fifth grade, his grades are fine, he enjoys school and all that it has to offer. He has turned into a pretty good violinist, experiences none of the old anxieties and stresses from his past and no new ones have popped up in quite some time.

Things are great...


The problem in Haydn's World is at home. 
The problem in Haydn's World over the course of the last few months has been me.
OK, to be fair the problem isn't only 'me,' we are a team around here and everyone is accountable.

Believe it or not, I needed to be reminded of that particular nugget of the obvious...
More on THAT later.


The main sources of stress and anxiety in Haydn's recent life were at home.
Rituals, compulsions, and the need for control popped up everywhere.
Haydn could not and would not relax.
He was incapable of keeping his head in the moment for any extended period of time.
He was wound tight and ready to explode.
And Mommy and I had no answers.
All of our techniques and tricks failed.
My ideas and solutions were terrible.
I caused more problems than I solved.
I butted heads with Haydn daily and could not do anything to stop it from happening.
Haydn and I were, for years, an unstoppable fighting force, a finely tuned machine, facing down all the challenges that his Aspergian mind presented, and now our relationship turned adversarial.
Every day I saw the nervous glances my presence caused.
My entering the apartment while he and Mommy did homework was enough to derail everything and ruin anything positive about the process.
Yet in spit of the sh*t-show at home, Haydn thrived at school.

What can I say? The kid is a bit of a bad-*ss.

Mommy and I were at a crossroads and needed to make a move.
We needed to get things evened out so we could best help Haydn with his next big challenge:

Middle School.

Holy Sh*T! How did that happen?


We considered many options - Social skills groups, Asperger camps, one-on-one therapy with a psychiatrist, anything and everything was a possibility, and then one day Mommy decided to reach out to our Asperger's Yoda.
For those of you new to Haydn's World, our own personal Yoda - Justin, worked with us when Haydn was five years old. He ran our home program and to be honest, he was the perfect person at the most critical time in our lives.
He will tell you otherwise, but trust me...
Haydn's real growth and development began when Justin entered our life.

It was not the fact that Justin had years of experience working with Aspergian kids (kids with Asperger's - Haydn hates the term Aspie).
It was not the wealth of information that he offered to us. Information about social skills, anxiety, and the inner workings of the Aspergian mind.
The most important contribution that Justin made to our life was the support he gave to Mommy and me. He supervised the home-based life skills and social skills instruction that Haydn received during his tenure and ran the home program, but he also empowered us to push forward with our own ideas about how to best help Haydn. He supported my decision to challenge Haydn daily with difficult social situations and environments. He supported Mommy's emphasis on developing emotional understanding of both himself and others.

And he shared the same anti-Pokemon, anti-stereotypical autistic interests, anti-everything attitude that we embraced.

I had very specific goals for Haydn at that young age, and very specific ideas as to how I wanted to achieve them. They were aggressive and I was not willing to back down.
The two main priorities were to teach Haydn how to exist in a world that assaulted his senses from every angle by immersing him in that world and teaching him as many coping mechanisms and tools for survival as possible. The second goal was to help him develop an understanding of who he is and how his mind and body work. Then he could learn to analyze challenging situations on his own and use the tools we gave him or (preferably) develop his own techniques to face down challenges and be the happiest kid in town...

And Haydn succeed far beyond anything I ever expected.

We made no effort to find his singular interest or talent and did not push Haydn into any one area of expertise. We wanted to expose him to as much as possible and let him find what he was looking for on his own.
We did not think that any diagnosis or neurological condition was sufficient to define Haydn or the life he would have. We wanted to push boundaries, shake things up, and try to redefine what autism, Asperger's, or any other neurological diagnosis really means.

I stayed up late every night reading about Asperger's, autism, anxiety, anything physical and neurological that might trouble him. I read books and articles about head trauma and tried to use some of the therapeutic concepts to assist Haydn's development in areas of neurological weakness. I took classes online about neuroscience, psychology and behavior analysis.

Some ideas were successful, some were not, but we always found a way to make things work (until recently).

We embraced the diagnosis and all that it brought with it (an answer to why Haydn behaved the way he did and the membership card to the club with all the services that would help him), but never allowed it to be a definition of who Haydn is.

Asperger Syndrome describes Haydn, but it does not define him.

We were empowered to try anything and everything we could to give Haydn tools to survive in a world that does allow for his comfort. I wanted to live right on the edge. Each day would have the potential for a monumental success or colossal failure. And we had a built-in support system and a readily accessible resource for advice that made us feel like anything was possible for Haydn.
After our time with Justin we felt like we could do anything.
The bigger the challenge, the more I enjoyed it. Bring it on.

It made sense to bring Yoda back in when Mommy and I were feeling lost.

So we ordered some Big Jim's pizza and talked.
And it was an eye opening experience.
First, he told us that Haydn was in a great place mentally and emotionally.
If you know Haydn, or have read the stories I post, it is probably pretty obvious that Haydn is living a pretty good life. He is always happy, but sometimes when you're deep in the sh*t, you don't notice the smell.
We put a microscope on our life and were focusing on problems (or more often, potential problems) and missing the progress and the successes. It was anticipatory parenting at it's worst.
So when someone who has a wealth of knowledge and experience told us that things were great... it made Mommy and I feel better.
But, there were still issues that needed to be addressed, middle school is right around the corner and we had to get ready.
We talked about the last few years and Haydn's emotional and social development. We talked about our family. And we talked about the tension that pervaded our home after school every day. Tension I felt that I caused.


The first thing that Justin brought into light was the need for a new perspective. We needed a new angle to approaching new challenges as well as old ones that snuck back into the picture. It was time to end the days of anticipatory parenting. No more would we analyze every room, and every situation for potential threats and difficulties.
The time had also come to evenly split the family work load.
Haydn, Mommy and I are all responsible for the quality of our lives and we are equally responsible for our successes and our failures. Believe or not, this was a radical change in my way of thinking. For years I put pressure on myself to do more, help more, to find every answer.
Not too smart.
One person can only do so much...
The three of us are a hell of a team and there was no need for me to try to push it as hard as I did (alone).
I have a pretty kick-ass power trio of a family here.
We are all up for the challenge.
There is no need for any one of us to carry all of the load.
For years Mommy worked tirelessly on teaching Haydn to recognize emotions in himself and others. she taught him to understand why he felt a certain way, and thought a certain way, and showed him how to express it.
For years I dragged Haydn out into the world and we fought and slayed dozens of anxiety dragons (hand dryers, malls, lines at stores, amusement parks, other people, movies, and all that noise, noise, noise).
We each did our part and helped each other when necessary, but there was a specific division of labor. I did my thing and she did hers.

AND Haydn did his, which Justin reminded us, is something special.

The funny thing is - we put all that time in and pushed ourselves to help Haydn have the best possible life, and when we achieved many of those goals, things started to go sideways.
To put it simply - We were not ready for his success.
I'm not patting myself on the back or looking for anyone to tell us we did well...
We did our part, but if Haydn was not Haydn, none of this would have worked.
Haydn is happy and has a head full of tools and techniques that he can use to handle the challenges in his life. He has a comprehensive sense of self and self-awareness and uses it to set and achieve goals on a daily basis.
He is doing better than we could have ever imagined.
But for things to continue to develop, we needed to figure out a way to keep things moving in a positive direction. Getting too comfortable with the status quo is a dangerous way of life in Haydn's World.

It was time for a full on family-wide change-up.

We determined that I had to change my approach to the after school experience (and everything else for that matter). No longer would I walk into a room, evaluate the challenge, find a solution and coach Haydn when necessary. I pulled myself back. I removed myself from the homework process. I came home and went back out to the gym. Or I threw a few hellos around and spent an hour or two playing my bass.

The other issue we had to address was Haydn's resistance to help from Mommy (or anyone else for that matter).
Haydn wanted independence, but was not always capable of achieving the level of success that he wanted. And that led to frustration. Haydn's frustration became our frustration.

Mommy pulled back her direct support from Haydn, making him more accountable for his own business and forcing him to reach out for help when necessary. Which he did.
We made little changes in almost very aspect of our life and it made a huge difference.
For the last seven years I felt that it was my job to scan the room, look for potential challenges and problems, develop a strategy, and help Haydn overcome the challenge.
And it worked well for us.
But now Haydn is ten years old and has a neurological toolbox stocked with tools and techniques that he can use to address the challenges in his life.

If we let him.


Haydn is growing up (and fast) and we have to step aside and let him.

It is time for Haydn move to the front and face all that life throws in his path. I am no longer in charge of this aspect of Haydn's life anymore. I do not make suggestions or decisions unless he asks me to. My role is more of a tool (ha ha... Haydn's dad is a tool), an accessory. I am a resource to be used when needed, not the leader of the charge.

When Haydn hits the wall, or is slammed with a challenge, he must face it and attempt to overcome it, ALONE. He must use his own tools, his own ideas, and only when he cannot succeed (and asks for help) will I step into the picture and be the hammer he needs to help him smash through the wall.

We all have a job to do and the division of labor in our life has shifted to 1/3 Dad, 1/3 Mom, and 1/3 Haydn. The successes, the failures, and (of course) the laughs are all OUR responsibility and WE are accountable for all that happens in OUR life.
We are all in this together.

The time has come to end one chapter of Haydn's life and begin a new one.
Now is the future and the future is now.

Our power trio family is recharged and realigned and ready to continue our assault on the shackles of anxiety, the challenges of the autism spectrum and the tyranny of preconceived notions.

This going to be fun.

"For last year's words belong to last year's language
And next year's words await another voice.
And to make an end is to make a beginning."
-T.S. Eliot