What Do You Say?

"What Do You Say?"

A friend of mine recently announced that he and his wife were expecting their first child.  He explained that his wife was "worried sick" about the prospects of Autism. 

Another friend recently confided in me that he and his wife were beginning to "have concerns" that there might be issues with their young son. 

What do you say?  How do you answer these things?  How do you explain that, while nobody would sign up for such a life-altering curve ball, a life with Autism is not something to offer condolences for?  How do you describe the depths of love they will find within themselves if, and when, their fears are confirmed?  How can you possibly communicate the incredible rewards that lie ahead for their family as they learn to celebrate each and every Tiny Victory that typical families too often take for granted?  Is it possible to effectively explain the feeling of unity and love they will find within their marriage if they commit to fighting back the stress, fear and blame?

All I could say was, "Look.  Everything is going to be O.K.  I promise that in ten years you will look back on today and laugh at your silly worrying about the future." 

Whether or not they become an Autism family, those words will ring true.  I guarantee it.

My Pledge To My Children

I won't... demand perfection.
I will... demand your best effort.

I won't... excuse your misbehavior.
I will... defend and advocate for you until my last breath.

I won't... abandon or ignore you in rough times.
I will... give you room to succeed or fail on your own.

I won't... fight every battle for you.
I will... always have your back.

I won't... tell you how to live.
I will... offer advice and guidance.

I won't... hold a grudge when you ignore my advice.
I will... be there to comfort you when you learn a tough lesson.

I won't... always agree with your choices.
I will... honor the choices you make.

I won't... always have the right answers.
I will... help you find your way.  

I won't... ever stop loving you.
I will... try to not smother you with my love.

Daddy Loves You!

What If My Son Reads This?

365 days ago I wrote my first blog post about my family's journey with Autism. 

Throughout this year I have done a lot of soul searching.  I have also begun to ask myself, "What if my son reads these things some day?"  What message am I sending to my adult son who one day delves into his Dad's soul through my past writing?

Here's the thing, Handsome:  Daddy is on a journey, just like you.  Daddy is learning as he goes, just like you.  Daddy's thoughts, emotions and opinions change and evolve as you lead him through this amazing life.  If I ever thought, implied, or wrote about you being "broken" or "imperfect" in any way, I was wrong.  Let me repeat that and make it perfectly clear... I was wrong.  You were a curve ball in my life, to be sure.  But what a perfect, awe-inspiring, greatly-needed curve ball you were. 

I don't "hate" Autism.  My biggest regret is ever using that vile word.  I no longer think Autism is something to "Attack."  My writings of delight at your smallest expressions of empathy, sarcasm, love and humor were not meant to imply that I thought you were incapable of such things.  But your Mom and I were waiting so long for you to express them that we were literally staggered when they emerged.  I have apologized to God for cursing him during my darkest moments.  Now, let me apologize to you.  I am sorry, Kiddo. 

I will continue to write.  And I will never go back and edit my work.  I think it's important to chronicle our little walk together.  But each lesson you teach me, improves me... and I just wanted to thank you for that. 

Love,
Daddy

My kids are not "victims"

http://ideas.time.com/2012/11/30/autisms-invisible-victims-the-siblings/

Dear Time,

Look, I don't want to be the word police. I think there is too much of that going around these days. But language does matter. The words we choose to describe our kids set a tone. Regardless of how you feel about the causes of Autism, labeling them and their siblings "victims" sets the wrong tone. "Victim" connotes a wounded, helpless individual to be pitied. I will have none of that for my son. And I certainly will not allow his neurotypical older sister to accept the notion that she is a "victim."

Both of my kids are strong, capable and courageous people. Over my dead body will they be treated like "victims".

Frequently Asked Questions

Some have asked... others have whispered to friends and family (they think I don't know)... Why do I do this?  Why do I choose to open my life to the public so willfully and... so freaking much?  The answers change depending on the day:

Sometimes I just need to vent.  I'm a very introverted person in real life.  I've mentioned in the past that the emotions and thoughts I share in my blog are often the first time my wife and family hear them.

My wife likes it.  Because I'm so quiet and introspective, my wife enjoys the glimpses she gets into my soul that I'm simply not able to share vocally.

I'm good at it and it's fun.  And it keeps me from hitting the bottle!

I am addicted to the "thank you"s.  It feels amazing to know that my words have helped people out there (especially fellow Autism dads) get through some tough times.

I view this as a journal of my family's journey that my daughter and son will someday pour through and enjoy much like a photo album or home movies.

I'm needy.  I like the attention.  Deal with it. ; )

Mountains

Sometimes I fantasize about moving away with my family to a cabin in the mountains of Montana.  I drift off and dream about unplugging my son from the daily pressures of society and artificial milestones and expectations that we all place on him.  I ponder how nice it would be to just live on a mountain surrounded by the people who matter most to me and just let my kids grow up with no preconceived or forced notions about... growing up. 

I've actually done the math in my head.  I've actually perused real estate sites in Montana.  It's just not possible right now.  It might not ever be possible. 

But my fantasy still serves a powerful purpose:  When I close my eyes and dream about my wife and I watching our kids play on that mountain, all of a sudden... like magic... all of the garbage is stripped away.  In an instant I am reminded of what really matters, what is just noise and what I truly need to be happy.  When it comes down to it, all I need around me is my family... exactly the way they are.  And guess what... I already have that.  The trick is staying grounded and stopping to smell the mountain air more often. 

An Autism Christmas

'Twas the night before Christmas and in the living room
A tired, haggard Mom swept with a broom.

Another shattered ornament tossed in the air
by a naughty little eight-year-old with candy cane in his hair.

He doesn't mean to be bad or make his mom cry.
He just is impulsive and thought it could fly.

They ask what he wants from Santa this year
He replies with a rote "Santa fly reindeer".

They politely decline invitations from friends
Instead they will celebrate alone again.

It may seem sad or tragic, I guess.
But an Autism Christmas is different not less.

Their gifts are from heaven.  None could be bought.
They thank God for their child and the lessons he's taught.

He's not wrapped up in the latest toys, styles or  fad.
He's happy in his PJ's, being tickled by Dad.

Dad's happy too, although it took a while to get there.
What used to be important dissolved in thin air

the day he discovered his purpose in life:
To serve and protect his children with his beautiful wife.

Lessons of Jesus and Mary can wait.
This year it's just managing what's been put on their plate.
 
Their life appears to be a chaotic coaster ride.
But in so many ways it's become simplified.

It's all about Love, the rest is just dressing.
Don't pity their state, learn from their blessings.

Merry Christmas!