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Tuesday, June 24, 2014

What Treatments Have You Tried?

The most common questions I get asked about my son revolve around the treatments and therapies we have tried and my opinions about their success or merits.

The honest answer is "too many to count," and "I have no frigging idea what has worked and what hasn't."  Does that surprise you?  It shouldn't.  Here is why:

For the last seven years of our lives we have committed everything to helping our son.  We have spent thousands of dollars on treatments, therapies and procedures (most of which were not covered by insurance).  Most of these treatments, therapies and procedures were happening simultaneously.  The biomedical treatments we have pursued have focused mainly on healing his gut issues and clinical symptoms.

I would be lying if I said that our first venture into the biomedical arena didn't revolve around a search for a "cure".  It did, at first. 

Was that naive?  Maybe. 
Was I searching for a phantom?  Probably. 
Was it misguided?  I don't know. 
Would he have made the same progress without these treatments?  I will never know.
Do I regret it?  Absolutely not.

You see... here's the thing:  My early years post diagnosis were rough.  I was drowning in grief, self-pity and fear.  I was starving for some sense of control... and hope.  Biomedical treatment represented a concrete target to shoot for and a plan to execute.  It gave me the hope I desperately needed to wrap my brain around the curve ball that was thrown to my family and gather the courage to face it.  I wasn't ready to hear, "different, not less" yet.  Does that make sense?   Seeing doctor's visits and therapy sessions on the calendar got me through many a dark night. 

Looking back, these pursuits... even the ones that had no discernible positive effect on my son, bought me the breathing room I needed to accept him for the cool little kid he is and unique individual he always will be. 

Eventually, my excitement for the doctor's visits changed from a hope for a miracle cure to easing his gut issues and making his life more enjoyable.  He still takes a cocktail of medicine and supplements on a daily basis.  But I am no longer looking for a magic elixir at the bottom of the bottles. 

I try to avoid the topic of specific treatments and therapies for our kids.  Often, the discussion degenerates into bad blood much like discussions of politics and religion.  Who am I to judge?  I just share my journey honestly and humbly.  If it helps someone out there, I am honored.  But I am not a scientist, and I am sure as hell not an expert.  I don't even know if I qualify as an advocate.  I'm a Dad searching for a path in the wilderness to help my family.  I look back often and they are still with me... and still smiling.  That's good enough for me. 

Monday, June 9, 2014

Lessons Aren't Always Obvious

So, I didn't get to complete the full 100 mile ride today. Since this is about teaching my son lessons, I thought I'd pass this one on:

Lessons aren't always obvious, kid. You start out the day with the intention of riding a long long way to prove that anything is possible. Then you are joined by some amazing friends and family who take time out of their busy and hectic schedule to share your journey. Some ride with you. Some get up early and wait around for hours in the hot sun to cheer you on as you finish.

Sometimes a very special friend chooses to take on the enormous challenge of riding farther than he has ever ridden in his life because he likes your company and wants to share this challenge with you. And sometimes that special friend pushes his body too far and gets hurt 66 miles from home.

Now, that friend will probably tell you to keep going and leave him on the side of the road to wait for help. You could do that. But that is not today's lesson. Today's lesson is you never leave a friend behind. As badly as you wish to finish the ride...as important as it seemed just hours earlier... there are some things that are just more important.

So you find a shady place to sit with your friend and you make him laugh. You change the subject from the pain he is in and you wait with him for help. And you thank him from the bottom of your heart for sharing the day with you.

Thursday, May 22, 2014

My Advice For The Autism Husband

1.  Admit to her that you're afraid.  You don't have to pretend to be Superman.  She ain't buying the act anyway.

2.  But be strong for her. 

3.  It's OK to get angry and frustrated.  But don't take it out on her. 

4.  You don't need to have all the answers.  Sometimes she just wants you to listen.

5.  It's OK to disagree.  But don't invalidate her opinions.

6.  Sneak up behind her and kiss her on the cheek.  You're welcome.

7.  Light a candle once in a while.  Again, you're welcome. 

8.  Don't keep score.  You will always lose.

9.  If you ever feel the urge to tell her, "That's your job", change the subject... quickly.

10.  It's OK to disagree about your kids' school and therapies, but NEVER at an IEP meeting.  You are a united front... always!

11.  Dance with her.  (I don't get it either, but trust me).  (You're welcome again)

12.  The only correct answer to the question, "Does this make me look fat?" is an unequivocal, "No."  And it must leave your lips within 1.82 seconds. 

13.  There will be days when all you want to do is sit and watch a ball game.  Tough. 

14.  When she says, "leave the dirty pots in the sink, I'll wash them when I get home,"  it's a test.

15.  When she tells you she understands if you don't want to join her and the kids when they visit her parents this weekend...  she's lying.   

16.  Repeat after me, "Your hair looks pretty today." 

17.  You don't have to fix it all.  You can't.  She knows it. 

18.  The only correct answer to the question "Do you think that girl is pretty?" is "Yeah, I guess so" (in a tone indicating you had never noticed before she pointed it out).

19.  Repeat after me again, "Let's take a bath." 

20.  Don't curse.  It doesn't impress her.

21.  Listen closely.  Those sniffles you hear in bed after the lights go off aren't allergies.  Put your arm around her.

Just Chill Out

Right now, somewhere out there a Mom or Dad is desperately trying to redirect their ASD child from a burdensome fixation or obsession.  They may be at their rope's end trying to curb that obsession and break through to that mystical, elusive land of "typical play" or "age-appropriate interests".

I want to share a story.  I share this story not as a therapist, doctor or expert in the field.  I share this story as a Dad who has been there.  I share this story as a Dad who has made mistakes and spends every waking minute of every day searching for the right answers.  I share this story with full confidence that many will disagree.

There once was a boy.  Let's call him, "Eric".  Eric was diagnosed with Autism at the age of 2.5 and, like most kids on the Spectrum developed limited and deeply intense interests.  Eric became fascinated (fixated, obsessed) at a very young age with Sesame Street characters. 

By the time Eric was 4 or 5, his Daddy started to become seriously concerned with his fixations.  Terms like "age-appropriate" and "typical imaginative play" were Googled regularly.  Eric's Daddy started to grow desperate to break his fixations.  Eric's Daddy started making mistakes that caused pain for Eric and had no success in curbing these fixations:  Mistakes like hiding Eric's favorite toys and becoming angry with his son for not playing typically. 

Then Eric's Daddy had a break-through and decided to try a new strategy:  Just Chill Out.  

Eric's Daddy decided that "age-appropriate" was over rated and "typical play" was an elusive, nebulous concept that only served to add tension and anxiety to his family.  Eric's Daddy decided to accept his son's quirky fascinations rather than attack them.

Well-meaning friends, family and experts quietly questioned this strategy.  Hell, Eric's Daddy regularly questioned this strategy.  But they plowed on... Just Chilling Out.

Eric's interest slowly began to expand to other animated characters.  But "typical play" remained elusive as Eric's preferred activity remained lining up his favorite characters, inspecting them, and stimming on them.  Eric's Daddy now questioned the wisdom of not nipping these fascinations in the bud early on.  It wasn't easy, but he kept on Just Chilling Out. 

Slowly, almost imperceptibly, Eric began to show signs of imaginative play.  Stimming sessions began to morph into detailed models of favorite scenes.

Soon, Eric began to incorporate dialogue into his models and they grew into complete re-enactments.  His style of play expanded to what any expert would recognize as "imaginative" and "typical".  

Then something even cooler happened.  Eric started to deviate from the scripted re-enactments of the scenes and pursue his own narratives, incorporating and intermingling different characters in a way that was unmistakably "imaginative."  

Finally, Eric began asking his Daddy to join him in his play.  He began seeking out creative ways to expand his play using props and craftsmanship that blew his Daddy away.

That's where Eric, now turning 10, and his Daddy are today.  Having fun, imagining and learning from each other... and continuing to Just Chill Out.  

To be continued...

Thursday, April 10, 2014

The Almost Locked-Up Series: Part 1: Busch Gardens

I'm kind of an emotional guy.  When it comes to defending and protecting my son, I am finding that I have a very short fuse.

Busch Gardens, Virginia:  If you have ever been there you understand that it is basically built on the side of a mountain.  It is extremely hilly and difficult to navigate on foot, and it's spread out over acres and acres of beautiful property. 

Understanding how difficult the terrain is to navigate, the Busch people designed an elaborate system of Sky Rides that gently whisk you through the air to various Sky Ride depots around the park.  Seems pleasant enough, right?

It was about 103 degrees and 99.9% humidity.  My son was about 4.  My daughter was about 7 and my wife was about... (do you think I'm crazy?)  We brought Eric's stroller that basically served as our pack mule for the day, loaded with all of our ammunition to keep Eric happy.  It held his juice, his Sesame Street guys, his cloth diapers, spare clothes, an ironing board and, probably a power tool or two.   And guess what... strollers weren't allowed on the Sky Ride (they are now, and I think I am solely responsible for that change of policy). 

I don't remember what got into us, but we must have been feeling especially froggy that afternoon.  We wanted to make a trip to the other side of the park, which might as well have been the other side of the continent.  We assessed the risk, Eric's mood, our overall stress level at the time and our chances for going down in flames, and decided to park the stroller and take the Sky Ride to the other side of the planet... I mean park. 

Eric LOVED the Sky Ride and, to this day it remains his favorite ride at any amusement park.  We touched down about 300 nautical miles from where we left our stroller and actually had a pleasant 4 or 5 minutes of entertainment.  Until....

Eric wanted his diaper.  No, I mean Eric WANTED HIS DIAPER NOOOOW! 

Patience has never been his strong suit.  I'm not quite sure where he gets that trait.  But he went into complete meltdown...  kicking, screaming... snot flying meltdown. 

I wiped the sweat off my brow and did what any chivalrous moron husband would do:  I volunteered to take the Sky Ride back to the other side of the planet with Eric and retrieve his coveted diaper.

I had to pick him up and carry him.  Did I mention it was 156 degrees?  We reached the Sky Ride depot and the line to board the freaking thing was about 20 minutes long.  Eric continued to kick and scream and was beyond being reasoned with.  I kept a brave face on and held it together all the way through the line.  I reached the boarding platform and... let's call him Billy.  Billy the 17 year old Sky Ride operator stopped us. 

"Sir, he can't get on the ride while he is screaming and kicking.  It's a safety hazard."

My peripheral vision started to go black, but I kept it together a little longer.  "He's OK," I said. "I just need to get to his stroller on the other side of the park.  He'll be fine once we get on."

My man Billy was bucking for Head Safety Officer or something.  "I'm sorry, Sir.  I am not allowed to let any child who is screaming and kicking on the ride."

Yeah, I think you know where this is going...

"Listen, Billy.  That is the second time you called this thing a 'RIDE'.  It's not a 'RIDE'.  It is TRANSPORTATION!  The jackasses who built this freaking park designed it so you have to use these flying death boxes to navigate this Hell Hole!  I'm not trying to get on for my enjoyment!  I'm getting on and you are pressing that God-Damned green button."

Billy had spunk.  "It ain't happening, Sir."  Then he picked up his little bat-phone to call security. 

I have a very well-paying job and a great pension.  My bosses don't often see the humor in disorderly persons arrests in far-away states.  I'm not good at math, but I did a quick calculation in my head and realized Billy was holding all the cards.  I backed down.

I carried my son through the entire park on foot.  Somewhere around mile 15 he fell asleep on my shoulder and I actually began to chuckle to myself.  "Someday I'm going to write about this.  They will never believe me."

Tuesday, April 8, 2014

Inept and Inadequate

So I've been doing this blogging thing for a couple years now.  I am so appreciative to everyone who has taken the time to read my stuff.  And it has been humbling to hear that the things I have written  have helped a few people.  My proudest moments are when I am told that I inspire someone or give hope to someone who is having a down day, week or year.  It is literally the coolest thing I have ever experienced.

But here's the thing...  (isn't there always a thing?)

While I try to "keep it real" and present our crazy life unvarnished as the roller coaster it is, I seldom post when I am a complete ass to my wife and snap at her during a tense moment or bad day (which are pretty common recently).  I rarely mention the times I lose my patience with my son and have to lock myself in the bathroom to avoid yelling.  I infrequently describe how many times I fail at this parenting thing.  And I never make witty or clever memes that represent how many times my selfishness and self pity cause me to break down in tears.

The danger with this blogging thing is it doesn't show the complete picture.  It is filtered.  "Acceptance", "Healing", "Finding your happy place"... whatever you want to call it... is not a destination.  It is a process... an imbalanced, often ugly process.  It doesn't magically end and the trajectory is not a straight line.  It involves good days and horrible days.  You think you have it all figured out for a few weeks and you get cocky... then your little hero bites the teacher or smears poop on the walls and you come crashing down to Earth.  It affects all of us.  It cripples some of us.  The best of us shake it off a little quicker and keep moving forward.  The phonies among us never mention it.  And those of us who are searching in the wilderness for some sense of affirmation that we aren't completely inept or inadequate often end up feeling worse than before we logged onto Facebook. 

So here's to the inept and inadequate!  Our club is bigger than you think.  I'm thinking of running for President. 

Thursday, August 29, 2013

You Just Get Faster

Legendary cyclist Greg LeMond is credited with a wise and brutally honest response to a question about his training and dedication to his sport:

"It doesn't get easier, you just get faster."

I received an email recently from a mom who was dealing with a fresh diagnosis of her four year old son.  She was asking for advice and a sliver of optimism about what stood before her family.  It brought me back to our early years when we were lashing out, grasping at any piece of hope, positivity or promise of security.  And it sent me on a week-long introspective journey that led me back to Greg LeMond's quote.

It doesn't get easier, the battles just change.  The initial shock of the diagnosis fades into fights with school systems and insurance companies over treatment and services.  The fear that he may never communicate fades into apprehension about leaving his warm, comforting teachers and starting middle school in a brand new environment.  These battles and fears will morph into new ones... and so it goes. 

Maybe, if you're lucky, you will find peace.  Maybe, if you're lucky, you will learn mechanisms to fend off those moments (days) of depression and crippling fear about the future.  Maybe, if you're lucky, you will learn to hide from that vicious, ugly monster named "Comparison".

Maybe you will find an outlet for all these emotions.  Maybe you will start a blog and write about these fears.  Maybe, if you're lucky, you will start to receive wonderful compliments from thousands of people you've never met who thank you for helping them get through their tough days.  Maybe you will lie in bed at night and giggle to yourself because you have them all fooled into thinking you have the first God-damned clue about what you're doing.

Then, maybe you will put a pillow over your face as your giggles turn to tears and try to mask them from your wonderful wife... because you have her fooled too. 

Then, maybe you will wake up the next morning, kiss your little hero on the forehead, fry up some bacon for breakfast, and get back to it.

It doesn't get easier, you just get faster.