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Archive for October, 2011

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Yesterday afternoon, while at school pick up, a mother tracked me down…

“I’ve been meaning to tell you,” she started, “your blue hair…”

She went on to tell me how she had been sitting watching a group of kids.  The topic of Brooke’s dad with the blue hair spontaneously came up in conversation which started a discussion about autism, autism awareness and what autism is…among the kids…with no adults!

She wasn’t close enough to hear every detail, but she was impressed that the kids carried on the conversation for some time and that the topic had been brought up because of my blue hair.

“I thought you would want to know your blue hair is doing its job,” she said.  She was absolutely right.

I told her maybe I should think about keeping my hair blue all year.

“No, no,” she replied, “then they’d get used to it.  Every once in a while, it’s good to shock them and make them think.”

Even though I’m getting my marathon out of the way with NYCM next weekend, maybe I should consider going blue again next year.  I feel like each conversation Brooke’s peers have about autism is one more kid who is aware that different is okay.

Thank you to the mom who let me know that I was making a difference even when I wasn’t around.

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RIP Dear Friend

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Last night was the first night I really missed him.

May he rest in peace.

No, no, no. Nobody has died, not yet anyway.

I am in mourning not for a person nor pet. No, I am in mourning for my treadmill. After many years of service, the last three being fairly intense, my familiar friend TM has become injured beyond repair.

Like a horse with a broken leg, it may be time to put TM down.

His first injury was actually a little over a year ago when the elevation motor died. At the time I wasn’t too worried because I was training for an incredibly flat marathon (Smuttynose).

But it finally happened.

A few weeks ago, while trying to get myself back into the groove of running, I hopped on TM for a quick 8-miler.

You may ask, why didn’t you just go outside?  Honestly, as much as I love running outside, there is something very zen about hopping on a treadmill and being able to turn the brain completely off – plus, I find it a good opportunity to catch up on shows Jess doesn’t like on my DVR.

But I digress…

About 4 miles in I heard a loud “CRACK” and suddenly the ride got a little bouncy – not overly so, but I definitely felt like I was running on a small trampoline. As long as I didn’t run down the center of TM, it didn’t get too bad.  He had essentially split down the middle.  I was determined to get my 8 miles in, but I now had to run with my feet slightly apart.  The zen running was no longer very zen.  I did manage to zone out a little but as I passed 7 miles I started to hear a flap! flap! flap!.  I looked down in horror to see that the tread of the treadmill was coming apart at the seams.

It was time to stop.

At this point, I realized that TM was probably beyond repair, or that at the very least, the cost of fixing him would be more than simply replacing him.  Unfortunately, these are tough economic times, so a replacement will have to be held off for quite a while – as much as running is a necessity to me, a treadmill is a luxury.  Ultimately, outside running is better for you anyway, and I do enjoy time in the fresh air.

But last night, as I contemplated going out for a late-night run,  I realized just how much I will miss my dear friend TM.  We got our first snow of the year last night, and it wasn’t a children’s storybook gentle snow – it was a cold, hard, unpleasant snow.  As I walked the dog, I quickly decided that my run could wait another day.  As much as I needed a run, I didn’t need to be running in miserable weather.

And so I mourn.

Rest in peace dear friend.  You served me well.  Hopefully you are up in Heaven keeping the angels in shape.

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I cannot put into words how overwhelmed and supported I felt from your responses (both on and off line) to my #FAIL post.  Whether it was from those who felt the same way as me, those who had made their way back to God or those who had never left Him/Her, I felt the love and compassion from each and every one of you…thank you.

Last weekend Jess and Brooke went to New York City to see Brooke’s favorite movie on the stage – Godspell.  To really understand how Godspell has intertwined itself into our lives would take several blog posts – wait! —>there are several blogpost about that over on Jess’ blog<— (I suggest going to the beginning).  Suffice it to say, if you don’t have the time to read them all, Godspell is big, BIG in our home.  We knew she really wanted to see the show, but when you have a child with autism, you just never know how they are going to react to a new environment.  The experience could be a big hit or could end in disaster…

So it was with bated breath that I waited, here in Boston, to see how Jess & Brooke’s trip went…

*on a side note and a nod to the late Steve Jobs, the pictures, video and editing were all done on an iPhone.

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Therapeutic

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Not all is solved.

Not all is better.

The big guy upstairs is still on my shitlist.

The same problems that were there before are still there.

But MAN does a nice, hard 8 mile run go a long way toward making one feel better.

I had planned on a short 4-miler, in part because I just haven’t been running lately, I mean AT ALL.  But once my legs got moving, I just wanted to keep going.  They (my legs) knew I needed it.  After taking it relatively easy for 4 miles, I slowly picked up the pace.  It was hard keeping myself in check. The anger, the aggression, it all needed to be let out, but with so little mileage lately, I didn’t want to injure myself, particularly with New York just two weeks away.  After running mostly in the mid-8’s, I just let it all out – starting from about 4 1/2 miles to the end of mile 7 I ran sub-7’s.  I grunted, I yelled – I could feel the tension flow out of me.

As I cooled down for the 8th mile, I laughed, realizing just how much I’ve missed running, how much I need it.

By the end, I was spent.  That’s what a lack of running will do to you.

I need to get back to doing this regularly – it’s my therapy.

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#FAIL

Dear Lord,

If You did this to test me, then I believe I have failed.

Not because I have given up on my daughter.

Not because I have given up on doing what is right.

Unlike You, I will never stop doing those things.

I failed because I have given up on You as an all-powerful, all-loving God.

You are cruel. You are sadistic. You are uncaring. You are vain.

How else do You explain what we see in the world?

A test?

Your test is flawed.  It tests those who do not carry love in their hearts at the expense of those who do.

How many mothers do You make cry themselves to sleep at night? How many fathers do You leave powerless to comfort their wives? How many little children, the very essence of purity, do You make suffer by chasing them with demons and dragons – those innocent children who have no weapon to defend themselves but the love of their parents?  How many Brooke’s do you torment with unyielding anxiety?  What did she do to deserve her fate?  I may not have walked the righteous path all of my life, but that gives you no right to punish Brooke, and in turn Jess and Katie.  If you have a problem with me, then you should take it out on me, not them.

I am angry at You.

I choose no longer to believe in You.

And don’t give me the “that’s the point of Faith” crap again. It’s crap and You know it. If You really cared, You would make the wicked suffer and comfort and heal to good.

You wouldn’t send the world preachers who tell the poor and the sick and the hurting that they just aren’t praying hard enough, they just aren’t giving enough, they just don’t believe enough.

Shame on You, Lord!

Maybe You did make us in Your image. That would explain why we have people like politicians and bank presidents – masters of the universe that don’t care about the poor, the needy, those in pain. Just like You, they say they care, that they want to help, but in the end, all they care about is their glory, their wealth, their fortune, their comfort.

Maybe You are deaf.

I think You just don’t care anymore.

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Control

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You can’t treat it with surgery.

Or chemo.

Or a shot of penicillin.

Or Bubbie’s chicken noodle soup.

Or a week in bed.

It’s not always visible…until the inevitable meltdown.

There is no “cure”.   There are therapies and strategies to help make the world more navigable, but Brooke will always “have” autism.  Maybe someday she will test out of the diagnosis (one can dream), but she will still have the underlying architecture of a girl with autism.  Regardless, we fight to make sure she gets the support she needs so that one day, diagnosis or not, she will be a productive, happy member of the community, of society.

As a parent, as much as I (we) fight for her, there is a sense of a lack of control.  There is no easy “target”.  I can’t give her a Tums or an Advil or schedule a procedure that will take this all away from my beautiful little girl.  It’s like fighting the war on terror – you don’t know where your enemy is hiding; you don’t know when he will decide to attack; and often by the time you have marshaled your forces, he’s slipped away back into hiding.

It doesn’t help when Medicine and Education point to each other as the place you should go when they should be working hand-in-hand.

I’ve seen a lot of moms with PTSD – my own wife included.

Yes, control goes out the window.

***

One of the ways I have learned to take back some of that sense of control is through running.

Does my running help Brooke?  Well, yes and no.

My running does not benefit Brooke directly, but it is my way of taking control of something in my life – particularly when things feel out of control.  Running relieves the stress and tension, helps improve my health, and allows me to be more focused afterward.  In turn, that allows me to be more present for Brooke, and though there are no guarantees, hopefully means I will be around on this planet for a long, long time to watch over her.

I have said it before and I will say it again, running has helped save me from the abyss.  It’s restorative powers are undeniable.

***

What do you do when things seem to be spinning out of control?

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Brother, can you spare 30 seconds?

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So the blue hair thing is already paying dividends.

Friends, neighbors, acquaintances, strangers; children, adults – all of them are asking, “what’s up with the blue hair?”

I thought this would be easy – you ask me about autism and I can go on for a good 30 minutes, ranging on topics from awareness to therapies to educational methods. The problem of course is not everyone is as enthusiastic as I am; not everyone is as entrenched as I am; not everyone wants to listen for too long as I get on to my traveling soapbox.

So I’ve had to refine my pitch. I’ve tried to get my soapbox speech down to about 30 seconds or less at this point, but it’s kind of like suddenly being told you need to sprint a 5K after spending a summer training for a marathon.

Hopefully I’ll have it down pat by the time the New York Marathon rolls around.

Meanwhile, I hit the key points –

  • Autism Awareness
  • Fund Raising
  • Research
  • Beacon of awareness
  • Running New York with blue hair for Autism Speaks

So far I haven’t had one negative comment (except maybe one who said she just couldn’t take someone with blue hair seriously…whatever).  Over the weekend I think I probably spoke to over 30 people individually about the hair and why I did it.  Today I’ve already spoken with almost 10.  That’s 40 more people who might stop and think before judging one of our kids, siblings or parents the next time they fall apart at the grocery store.  Hopefully those 40 will tell their friends about the crazy, marathon running dad with the blue hair and they’ll remember to mention why that crazy dad is doing it.

Spreading Autism Awareness, changing the world, one strange look at a time.

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Why do you run?

And for those who think maybe Awareness is a tired, worn out theme, I ask you to read —>THIS<— and then tell me if that is really the case.

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