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...

AT SCHOOL.

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.

DRAMA AT HOME

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?

CALLING IN THE CAVALRY

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.

A NEW HOPE

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.

THE END OF THE BEGINNING

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



Sunday, November 8, 2015

The Crooked Tree...


" The person who follows the crowd will usually go no further than the crowd. The person who walks alone is likely to find himself in places no one has ever seen before."
- Albert Einstein


THE AWESOME HAT

Haydn, Mommy and I went to Van Saun Park with my parents two years ago. We walked all over the zoo and when we finished our tour of the exhibit of Australian animals we stopped in the gift shop. I stood by the door and talked to Mommy and Grandma about kangaroos when Haydn walked over and asked, "Daddy can I buy this?"
Haydn almost never asks me to buy him anything so I figured whatever he wanted to buy must be pretty awesome. Without even looking, I gave him a twenty dollar bill to pay for his new treasure and went back to my conversation. Two minutes later he made a gift-shop proclamation:

"This is definitely the best hat I have ever seen. I love this hat."

I turned around and there stood my son wearing this:

That's right folks, it's a plastic sun visor with retractable sunglasses

The best hat he ever saw.
No doubt about it.
He loved it and wore it everywhere for weeks.

What can I say? Haydn is an interesting creature.
Interesting?
OK, let's be honest.
Haydn is an odd little dude.
He is bit of a strange kid.
The best way to be...
He does what he does, the way he does it, whether it jibes with what the rest of the folks are doing or not.
He strives to find his place in the world, but has not compromised his individuality in any way.
He spent years working to get himself integrated into the 'mainstream' education system. He worked at it every day in school and at home. Haydn has had a lot of help, but ultimately it is his relentless drive to succeed that powers his success. If he wants to do something, he will figure out a way. It may not happen the first time, the second time, or the eleven-teenth time, but eventually he will achieve his goal.

INDEPENDENT PARTICIPATION

Throughout his life, Haydn has learned to deal with the physical and sensory challenges presented by his environment, the inherent social weaknesses of his Aspergian mind and the anxiety that these challenges fueled. When he did not know what to do or how to act, he watched the other kids and stole some of their moves. He tried to use their behavior as a model when things got tricky for him, but it was never a direct copy. Haydn used the other kids as a guide, but always did his own thing. He never wanted or tried to be EXACTLY like everyone else.

He likes what he likes and he does what he does and there is nothing anyone can do to change it.

He holds onto his individuality with the same tenacity that he applies to the challenges and difficulties that he encounters. He likes to be a part of the collective, but only to a certain point. He hangs out with his friends at recess, but has no interest in play-dates on the weekend.
Haydn enjoys the company of his classmates in the context of school and school sponsored activities, but does not want to go to sleepover parties. He tried team sports, and while useful as a therapeutic tool (it was another environment to expose him to his peers in a challenging situation. He developed relationships and worked out some anxieties), Haydn never enjoyed the games.
He does not have much interest in getting fully immersed in the 'typical' social world of a ten year-old.
At least not at the present time...
He participates. He engages. He has relationships. He has friends. He has fun.
On any given day he would love to hang out and play with your kids...
To a point.
It's not the way everyone else does things. Not even close...
And that's OK.
Haydn has fun the way he wants to.
On his terms.
And he does not care if you get it or not.

"I WISH I COULD BE MORE LIKE THAT"

Haydn and I went to a road race in town a couple months after the purchase of the awesome hat. The finish line was behind the high school where there was a DJ playing music and a few bounce houses. Within seconds of our arrival he had his shoes off and his bounce on with the kids in the biggest castle. He bounced so hard he lost a sock. He finished jumping around and climbed out, put his shoes and sock on and ran to the middle of the field. The DJ was kind enough to take a break from the Top 40 crap he was polluting the air with and played an AC/DC song. Haydn stopped his sprinting and jumped, danced and spun around in the middle of the field. An occasional kid stopped for a quick bounce or spin with him, a few walked by and high-fived him, and a quite a few more looked on in wonder.
A friend of his, an eighth grade girl, walked over and talked with me for a few minutes.

"How is Haydn doing this year?"
"He is doing great. He has a terrific teacher and loves the class. The kids are all real nice too."
"That's great..." she gestured to Haydn out on the field, "What's he doing out there?"
"Having fun."
"It sure looks like it. That's some crazy dancing. He doesn't care what he looks like?"
"Not even a little bit. He doesn't give much thought to what other people think. If he thinks something is fun or cool, that's what he's going to do. No matter what."

"Man... I wish I could be more like that."

She walked away and left me to ponder her last statement.

"I wish I could me more like that"

But what about all of Haydn's physical challenges?

"I wish I could be more like that"

And what about all his social difficulties?

"I wish I could be more like that"

Let's not forget rituals, compulsions, frustration and anxiety...

"I wish I could be more like that"

Wait a minute... 
Asperger Syndrome... 
Isn't Haydn autistic?

MISSING OUT ON EVERYTHING AND NOTHING

Mommy and I are reminded daily of all the things that Haydn DOES NOT DO.

If you have an autistic child, Facebook is a great place to go to see pictures and videos of all the things that your kid is 'missing out on.'

Nobody seems to understand that our kids have no desire to be a part of all the things they are 'missing out on...'

At any given moment I can scroll through the news feed and see pictures of football players after a big game, groups of friends sleeping in a backyard tent, yet another medal or trophy awarded for something (or nothing).
Picture after picture pops up of the smiling faces of kids that Haydn knows and likes very much...
But has no interest in spending any more time with than he has to.
Haydn enjoys the company of his 'school' friends, but that is what they are to him: 'School Friends.'

That does not diminish their importance to him, Haydn's friends are all equal in his mind, it is just the way that he classifies their role (like he does most everything) in his life. He met them at school, he sees them everyday at school, therefore they are 'school friends.'

Haydn does not have much interest in hanging out with them outside of his academic world. We encourage Haydn to socialize after hours (he goes to every after school and extra-curricular activity the school offers, and the summer at the swim club is full of non-school interaction), but I think Haydn does not want to hang out with the kids outside of school that often because of how difficult it is for him to get through every day AT SCHOOL. His mind and body do not always cooperate and I'm sure on some days school can be an exhausting exercise in focus and determination. It takes a tremendous amount of effort and self control to keep his anxieties and impulses under control so he can thrive at school, so by the time the weekend rolls around he is probably ready to step away from it all and relax a little (but not too much - we are currently back in attack mode on a new batch of challenges, so there is always work to be done).
I try to challenge Haydn to help him have the best possible life now and in the future, but I can not push him into uncomfortable and stressful situations all of the time. He is older now and understands why we do what we do, and I have to allow him to have more of a say in his own life.
Haydn loves school and everything it has to offer, but when the weekend comes around he wants to leave it all behind until Monday.

Of course all of this could be (probably is) Haydn's way of keeping order and control in his life...
But that's OK.
For now.
When Haydn is ready to change, things will change.
For the time being, Haydn is happy with the way things are and that is just fine with me.

Of course you know that I WILL change everything up on him later when he looks like he's ready for the challenge (or gets too set in his ways)... But we will live that story at a later date.

EVERYTHING IS OK

Haydn will never out grow out of Asperger Syndrome.
And that's OK.
Haydn will never be like his friends.
He may look like it sometimes.
He may act like it sometimes.
But Haydn is unique, and odd, and amazing.
Haydn will NEVER BE LIKE EVERYONE ELSE.
And that's OK.

There are no championship trophies and team pictures lining Haydn's shelves.
Haydn does not go to many birthday parties (he has been invited, but he always politely refuses).
Haydn does not march in parades.
And that's OK.

Haydn will have to face the challenges that his Aspergian mind and body drop in front of him for the rest of his life.

But don't worry about Haydn... He will be just fine.

Haydn will accomplish what he wants to accomplish when he wants to accomplish it.
Haydn will be happy.
Haydn's life is exactly the way it should be.

Haydn is not 'missing out' on anything.





















THE CROOKED TREE

Every day, the straight tree would say to the crooked tree, "Look at me... I'm tall, and I'm straight, and I'm handsome. Look at you... you're all crooked and bent over. No one wants to look at you." And they grew up in that forest together. And then one day the loggers came, and they saw the crooked tree and the straight tree, and they said, "Just cut the straight trees and leave the rest." So the loggers turned all the straight trees into lumber and toothpicks and paper. And the crooked tree is still there, growing stronger and stranger every day.