April 2000 And Everything That Came After
I love the month of April.
No, not because of flowers. Flowers = Bee's. Bee's frighten the hair off of my chest.
April is an important month for me because it marks the month my first son, Noah, was born. He was born ten years ago today!
April is also Autism Awareness Month. Autism is currently hitting 1 out of 150 children and 1 out of 94 boys in America. Say that out loud to yourself. Regardless of the reasons why the rates are increasing we have to marvel at the numbers.
About ten years ago I thought Autism had ruined my life.
I was a moron.
I also once thought that I could slide head first off of my parents truck without any damage to my skull.
That just goes to show how smart I am.
Autism did not end up ruining my life.
Thats not to say that it has left me unchanged. It has forever altered who I am as a person.
I discovered that there can be peace in the midst of an epic storm if I just change the way I look at life.
What do I mean? Well....
I am a simple dude.
I like to live without conflict, complications, or heavy doses of stress. I am in constant need of peace and harmony in my live.
I am a creature of balance.
For every hour spent stressing I require an hour of relaxation.
For every hour spent toiling over something tedious I need an hour of play.
For every hour spent in the company of others I need an hour of quiet.
I am at my best when everything works in accordance to my profound need for this balance. When I am not living a life that is centered in harmony it absolutely feels like I am spending my days simply just trying to survive.
There is nothing else that soothes my soul more than having this symmetry exist in all facets of my life.
This is why Autism has been such a dirty, armpit sniffing, monkey Humper in my life!!!!!!
Autism swooped in like a crotch kicking paperboy and booted harmony out of my life quicker than NBC jetted Conan. Autism took my need for a life that is filled with peace and balance and replaced it with it's own suppository of mayhem, worry, struggle, and doubt. Autism grabbed my soul's longing for serenity by it's speedo and threw it in front of a runaway bus that was seemingly being operated by Sandra Bullock.
I had a plan for my family. Autism ate that plan like it was a mutant shark and my plan was mutant shark food.
For the past decade of my life our family lived life like we were a boat a drift on the sea that was being battered by a terrible storm. A maelstrom of intense anguish pounded our hull to the point where I was often concerned how much more we could handle. From the first moment that Noah was diagnosed with Autism it seemed like the waves of the storm were going to be too violent for a schlep like me to take. I was devastated when I found that the shoreline that I thought my families boat was headed became obscured by the dark clouds.
At the beginning of our journey with autism I fought against it to gain control of our lives. I lost. Badly. Life was hard and the struggles kept piling up.
I am not the kind of guy who handles living like that very well. Some people embrace that kind of struggle with a heroic zest. I react to that kind of situation like I would a Ninja who had a beard of bee's and was carrying a plate full of steamy nasty beets. My first instinct is to run. I knew early on that autism was going to make my need for harmony in my life an impossibility. There would be no balance....there would just be survival. I needed us to survive long enough for this storm to pass and then find the shoreline I wanted us to land on. It was just about survival....nothing more....
It was about surviving from one depressing doctor's appointment/therapy sessions/ to the next...
It was about surviving the daily heartache of watching my beautiful son lie in prison behind the walls of autism...
It was about surviving the dark days where it seemed like there would be no more progress...
It was about surviving the horrified looks of strangers as they reacted to his autistic behaviors....
It was about surviving the moments I sat and fretted over the future of Noah when I am gone....
It was about surviving the guilt whenever I felt like I wanted to pack it in and emotionally check out...
It was about surviving all of the never ending shit that comes with being a parent of a child living with autism...
It was about surviving the apparent death of all of the dreams I had for my son before he was born...
It was about survival.....
Nothing more.
There was no balance. There was no peace. There certainly was not any harmony. There was only the hellish storm. My life had less serenity than the Gaza Strip.
Early on I was a walking talking cliche'.
If you were to line up all the prospective father's across the world and choose the one who would be the most ill equipped to handle raising a child with autism I would be the last one you would want to pick. I had always been afraid of anyone who had special needs. I had often thought that I was allergic to people who appeared handicapped or different. I am a coward. I am, by nature a "me first" mother-scratcher. I possess as much bravery and fortitude as a year old bottle of ketchup.
I was not ready for the storm of autism that rocked our boat. I thank God that my wife was the captain and I could reprise my roll of Gilligan....
Many years have passed since the first gusts of the storms hurricane-like winds struck our family and I have grown accustomed to the chaos of being a daddy of a little boy navigating the spectrum of autism. I have become hardened and battle tested. I no longer flinch when the waves splash over the sides of the hull. This storm of autism has changed me from who I was years ago. I am not the man I was...I am forever different. Thank God.
The things I thought I could never survive have tested me to the core of my being...and I have passed. The storm has taught me many lessons...but there is one lesson in particular that surpasses all others:
I no longer fear the things I have no control over. I cannot control autism or the effects it is having on my sweet Noah. I cannot control what the future holds for him. The only thing I can control is the way I love him. I can't control how the world will react to him. The only thing I can control is how tightly I hold his hand when the storm intensifies. I have learned that the more I let go of the shit I cannot control the more peace I find. Harmony can be found in the storm if I quit trying to sail against the winds. There can be balance if I let the waves carry us wherever they need to take us instead of trying to ram our ship against them. I cannot control the storm of autism...but I can control my attitude towards it. Serenity exists in this storm...I just have to give up control.
Autism did not ruin my son's life. It made him shine in a way that the world has never seen before.
Autism did not ruin my families life. It made us closer than we would have ever been before.
Autism did not ruin my life. It helped me realize that the secret of my life is to not try and control it.
As autism begins to soften it's grip on Noah (a miracle that I attribute to the amazing efforts of my wife, countless people who have helped him, and the unconditional love of his two brothers) I am able to see the shoreline through the dark clouds. I am not sure what island the storm has taken our family to, but I know that wherever we end up I will find peace of heart.
Where I used to believe that harmony was achieved by taking control of my life and forcing it to exist. I have learned that true balance occurs when I let go and allow life to take me where it will. I stop worrying over the garbage I have no control over. I cannot control the storm. I can only control how freely I express my love for my family while the boat surges over the waves toward our destination.
There is something that is so beautiful about letting go. There is something so peaceful about riding the storm out....it is not about just surviving anymore. It is not just about trying to find the shore. It is all about loving my family with my entire heart.
Happy Birthday Noah....
I am so thankful for April of 2000 and everything that came after....
I love sailing with you! Here is to the next ten years of riding the storm out.....


I am not a guy who is prone to emotion when I read something, but I have to say that was wonderful and it made my day.
We can't wait to get you into our conference and speak! Plus I love your Ozzymandian stuff too. See ya next fall.
Mat Rian
Reply to this
Long time lurker here. I was so glad when I saw that after a month you decided to blog again!!!!! Don't wait so long to write again.
This is my new favorite entry. I am a mother of two autistic twins and your writing voice always makes me feel better, Laney.
Reply to this
The vulnerable honesty in this post is wonderful, John. Happy birthday to Noah.
Reply to this
Words fail me, but then they usually do.
Your message to relinquish the idea of controlling what we cannot was exactly what I needed today. Thank you for that personal kick in the pants.
As for you ... some people say we are never given anything we cannot handle. Personally, I don't believe that, but obviously you met the challenge. Noah is lucky to have parents like you and Jenni. Forge on!!!
Reply to this