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Archive for June, 2012

200 miles, 36 legs, 12 runners, 2 vans and 1 captain – it may take me a while to process the 27 hour adventure into words, but in the meantime, please enjoy the slide show I put together from our little journey.

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Dashed

There were so many highlights, so many wonderful moments this past weekend…but, as what should have been one of those highlights played out on a screen, autism reached out and clamped its heavy hands around my throat and squeezed.  I didn’t say anything for fear that maybe I was seeing something that my wife did not.  I wanted her to turn it off.

I didn’t say a word until it was done.

That was…hard, I said.

And then I broke down.  I broke down and cried.  I cried like a young child who has been told the brand new puppy his family got must be returned.  I cried like a young teenager who just found out her crush likes the girl who terrorizes her.  I cried, wanting scream, It’s not fair!!! I wept like I have not wept in a long time.

***

This moment happened over 24 hours after the actual event.  We had traveled south for a cousin’s Bat Mitzvah.  The cousin and her family (and even her friends) had gone out of their way to make the event user-friendly for Brooke.  Brooke herself had a wonderful time, dancing the night away on the dance floor, even when no one else was dancing.  She got her cousins to join her; she got her cousin’s friends to join her.  To say she was seamlessly blending in would be a tremendous over-statement, but the truth is, those around her were accepting her for who she was and as parents, it felt great.

Before the party began, all of the kids were called into the ballroom to learn a flash mob style dance that would take place on the Bat Mitzvah girl’s entrance.  Honestly, it was pretty darn cool!  While in the cocktail hour I got a text from Jess saying that Brooke was getting right in there learning the moves.  Half an hour later, as the family members were being called in, I was beaming, watching my little Brooke stepping from side to side clapping, watching the people around her to make sure she was doing the right moves.  At the big entrance, the kids mobbed the floor and went into the routine.  Brooke went right along, watching, imitating, even anticipating.  I was so proud of her.

The rest of the night, she flittered back and forth between the kids table, the dance floor and occasionally just checking in with us to make sure we were there.  It was by far the easiest large scale party we have done with her – ever!  I am so grateful to our cousins and their friends for making it so easy.  On the way back to the hotel, both Jess and I told both of our girls just how proud we were of them, how well they handled themselves.

***

But then last night I helped Jess upload the video of “the Grand Entrance”.  I had been eagerly anticipating watching the video, reliving the awesome moment of Brooke participating in a flash mob; excited to see her dance with a group; waiting to exorcise the demons of the ballet recital that never was so many years ago that left me weeping in a parking lot for 20 minutes.

When the video finally came through, I pressed play.  I was so excited.

And then the wind simply died.  My anticipation was rewarded with a slap, a dose of raw reality.

I wanted to turn it off.  Yes, she was in there.  Yes, she was trying to keep up. But nothing was in sync, turns were in the opposite direction, occasionally she’d jump ahead.  I did not want to feel this way about something I had felt such pride about not 24 hours earlier.  But I can’t deny that it hurt to watch her; I can’t deny that my heart broke; I can’t deny that fear of the future got the better of me – what happens when she’s 13 and wants to go to a school dance?  Will her friends be so accommodating?  Will she always be “out of sync”?

And so I cried, weeping into my pillow like no man ever wants to admit.

God, I hate autism; any disability; though I know having to deal with it has made me a better man, husband and father, I still fail to see why God needed to brush my baby, anybody’s baby, with autism.

***

I know this pain will pass – at least on the surface.  I know there are more victories than defeats ahead of us.  I know the world is becoming a friendlier place for those like Brooke.  I know, selfishly, that I will recover.

But for now, it hurts.

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On the way out of the grocery store today with Brooke this afternoon, I watch a father trying to coax his 20-something year old, 6’2″ son with what appeared to be autism into the store – the father was gentle and obviously skilled after however many years of having to do what he was doing, but he was still having extreme difficulty convincing is son it was time to go in.

I could not help, but for a moment, feel anger – not toward the father or the son, but to the situation and whatever deity put them in that situation.

I know children seldom grow into the expectations parents have of them – Lord knows that A) in some ways, my life is completely different from what my dad envisioned for me and B) my own children have already changed (not for better or worse) what I envision for them as adults – but I can’t imagine that this father, some twenty plus years ago thought that he would be doing what was required of him today.  I imagine he foresaw his son leaving for school or taking a job and living independently.

Autism and other debilitating disorders do that – they don’t just change the dreams we have for our kids, they can crush them.

Brooke was brushed more lightly than others with autism.  She does not have Asperger’s, but she is verbal and she is socially motivated.  I see a kid that wants to be part of society, wants to contribute…someway, somehow.

Maybe my long-term expectations are high; maybe they are unrealistic…

…maybe part of the reason that I got a little angry this afternoon was that I was afraid that I was getting a glimpse of the future…

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