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Archive for August, 2013

Mad at Myself

I caught myself this morning wishing the most horrible thing – I wish our family was normal. What an awful, awful thing to think. We were sitting at breakfast at one of our favorite restaurants on our first full day of vacation.

The night had been a bit of a bust with Brooke refusing to sleep in her room with her sister. I woke up at midnight to find Brooke and Jess passed out on the couch. I moved them both to the main bed and crawled into Brooke’s bed where I lay awake for the next three hours.

Score one for sleep issues and epilepsy.

On the way to breakfast Brooke was in high anxiety alert, slipping quickly and “easily” from laughing to yelping and back again. Walking through town I couldn’t help noticing all of the “normal” families, their kids behaving or misbehaving in neuro-typical fashion.

Across the street from the restaurant, Brooke knelt down to pick a flower that was defiantly growing where the sidewalk meets the street. Jess warned her that she needed to back up because there was traffic and it was dangerous. Brooke yelped and then yelled.

I took a deep breath.

As we sat waiting for a table, Brooke began to lose the ability to cope with her environment. Jess asked for the iPad as a distraction, unaware that Katie was using it. Handing it over, Katie could not stop her pre-teen tween mind from sulking a bit.

Wasn’t this supposed to be a vacation?

I watched a family of six get seated. The kids were a bundle of voices, oscillating in volume, intensity and intent. There would be little screams from the littlest one (a baby), arguing from the older ones (maybe 9 to 11?), but it all seemed so “normal”.

And that’s when it happened. I caught myself wishing that my family could, at least for a week, even a day, be “normal”; and I hated myself for thinking that. Why couldn’t the debilitating anxiety Brooke suffers just go away for a little while? Why couldn’t she just be happy to share a room with her sister and have a “sleepover”? Why couldn’t Katie’s tween-angst be just that and not have to be peppered with having a sister she feels she can’t communicate with or even worse, who she at times resents?

As mad as I was at autism and epilepsy and tweenagedom, I was even angrier at myself for wishing “normal”.

Sitting at our table, Jess asked me what was wrong. My face had betrayed me. I waved her off. It’s nothing, I said. She didn’t believe me.

As soon as the food arrived my stomach took over, but I couldn’t stop myself from occasionally looking around, a feeling of envy creeping ever so slightly.

Breakfast done, the girls and Jess went for a walk, leaving me to pay the bill. I took a deep breath and sipped my coffee. A moment of calm amid the cacophony of a busy island restaurant. I almost began to cry.

***

That would have been the end of this sad post, but about 10 minutes later, I caught up to the girls. As we walked toward a toy store Brooke wanted to check out, Jess leaned over to me and said, “that was a little odd.”

I had no idea what she was talking about, but just as she was about to explain, a woman came up behind us, gushing to Jess, “I just want you to know that I read your page and I get so much out of your blog; I’m a teacher and your writing has been so helpful!”

And for a brief moment I thoughts maybe there is a reason for all of this.

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The Moon

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Phones are ringing all around me.

Social Media is abuzz.

Conversations between mommies,

Did you see we’re in the same class?

Oh, our kids aren’t going to be together!

We should see if they can share a locker.

Did you hear that Johnny ended up in Mrs. Jones’ class?

How awful.

How wonderful.

I can’t wait to send them back to school.

they fly back and forth,

by phone,

by text,

by Facebook.

Except not in my house.

***

Class lists came out.

It has become a tough time of year for me, and as Brooke has gotten older, it is becoming more so.  The conversations go whizzing by my head.  Occasionally I do the equivalent of who me? only to turn around and see that the person they are talking to is the cool kid behind me.

I used to love this time of year.

I used to be one of those moms.

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While folding laundry today I caught the very end of the latest episode of Real Sports, Bryant Gumbel’s HBO show.  I watched an entertaining piece about Donald Trump suing the nation of Scotland to stop them from putting up wind turbines.  It was what Gumbel said at the end of his show that irked me.  He brought up the topic of A-Rod, drug use and the outrage people feel toward him.

Here is his statement:

“Finally tonight, what are we supposed to do with Alex Rodriguez? Embrace him? Pity him? Scorn him? I can easily understand any or all of those reactions because I think he’s a liar and a fraud. But what I don’t understand are the expressions of shock and outrage over his alleged drug use because, frankly, this country’s crazy about drugs.

Modern Americans reach for a drug for any and everything – for problems real and imagined. It’s why we consume more pills than any nation on earth and why TV ads are relentlessly selling us Xarelto, Abilify, Stelara, Prodaxa, and dozens of other drugs we never ever guessed we supposedly needed.

Americans are only about five percent of the world’s population yet we take 80% of the world’s painkillers and a whopping 99% of the world’s Vicodin. We have four million kids on Ritalin, 22-million women on antidepressants, over 30-million adults on sleeping pills, 32 million on Statins, 45 million on another drug I can’t even begin to pronounce. The list goes on and on.

So think what you will of Alex Rodriguez but when so many moms and dads are active parts of a national drug epidemic, let’s stop crying that a ballplayer’s the one setting a bad example for kids. And let’s skip the expressions of outrage and shock because however you may choose to view A-Rod’s alleged drugs use, there’s no denying the ugly reality that that’s become the American way.”

Personally I don’t like A-Rod.  I think he is is fraud and a narcissist, incapable of seeing just what a jack ass he is.  I also don’t like that he has taken and apparently continued to take steroids during his career as a major league baseball player.

According to Bryant Gumbel, this makes me a hypocrite.  I am one of those moms and dad who is taking an active part in our national drug epidemic.  He pointed out that we are a nation of drug users, spouting off statistic after statistic, calling out parents who have their kids on Ritalin, women who take anti-depressives, people who take sleeping aids.

Guess what Bryant – I pop a pill every day for my blood pressure; is that cheating?  There are kids with real anxiety issues who take medication so they can access the educational process in their classrooms; is that cheating?  There are parents of both special needs and typical children alike who suffer a form of PTSD who take medication so they can get through the day without falling apart; is that cheating?

The difference, Mr. Gumbel is that many of these people are popping pills so they can get through the day without having a nervous breakdown or die of a stroke or have a cancer spread throughout their body.  Alex Rodriguez took steroids not so he could get to the end of the day or stave off a disease, but so he could cheat his way into a 10-year, 25 million dollar a year contract….twice!

If you can’t see the difference, Mr. Gumbel, I suggest you walk a year or two in the shoes of someone who is dealing daily with the stresses of IEP’s, fighting a system that wants to take away supportive services for their child, the financial burdens of out of school services, the isolation that many people feel because much of their community refuses to see them, the daily meltdowns, the daily wiping of feces off the walls, the constant need to be vigilant not because you are a hovering parent, but because if you don’t, your child could have a seizure in the tub or pool and drown.  Or maybe walk in the shoes of someone who can’t get up a flight of stairs because their lungs don’t function properly. Or maybe in the shoes of someone who is in the early stages of cancer.

If you can’t see the difference Mr. Gumbel, then you can kiss my ass.

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Dear Boston 13.1 Team Up with Autism Speaks Runners,

I am truly sorry.  I have not kept up my end of the bargain we made last Spring.  I was supposed to lead you through your training, inspire you to run long, ready you for the 13.1 miles you will conquer next month.  I have done none of those things.  Unfortunately, lung issues have put me on the shelf for the last month and I have not been able to lead long runs, any runs really, at all.  It has been 28 days since I last laced up; and truth be told, the week leading up to that last run was labored at best.

No, I have been neither a good leader nor team captain, and for that I am truly sorry.

I hope you have been training.  I hope you have been running at least three time a week with one long run on the weekends (you should shoot for 10 slow miles this weekend).  I hope you’re on target with your fund raising goals.

I’ve got one last challenge for you.  I know it’s a lot to ask, particularly as I have been an absent leader, but I ask you nonetheless.  As of this coming Sunday, there will be three weeks until Boston 13.1.  I want you to convince a friend to come join you in our little jaunt by the sea.  It’s okay if they say they are in no shape to run 13.1 runs because you know what?  Neither am I!  But I will be there – despite the complete breakdown of my running since mid-July, the Blue Afro and I plan on being on the course with you.  I may have to walk, but I will be there – and if I can do it, so can a friend.

I can’t promise dinner with Jess (adiaryofamom) since she is not running this year, but I can promise that the team dinner the night before the race will fill you with words of inspiration and feelings of hope and promise…oh, and a chance to break bread with the Blue Afro and me.

I look forward to seeing old faces and meeting new friends on the 14th and 15th.

Sincerely and Apologetically,

Luau

PS:  If you can’t join us for Boston 13.1 but would like to contribute in some way, please consider donating to my fund raising page (link below).

—>Luau’s Fund Raising Page<—

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Dear Brother,

We are not wired for this.  Our problem solving skills do not match up well with this unexpected challenge that has been unexpectedly thrust upon us.

What do you mean it can’t be fixed? 

What do you mean there is no cure?

I know exactly how you feel.  Even though my head knows better, my heart still wants to fix it…fix her, just like I know you want to fix him.

It is what we do as men – we fix things.  If something is broken, we fix it.  If we can’t fix it, we probably know someone who knows someone who can.  Flat tire, broken hose, leaky pipe?  No problem, pass the tools.  If it’s something bigger?  Pass the phone, I know a guy…

***

Dear Brother,

This is different.  Our kids aren’t machines.  It took me some time to come to the realization that our kids aren’t broken; they are simply different.  Can that difference make life harder?  Yeah, right now it can; but difference, whether it be race, gender, orientation, height, weight or autism can do that.

But different doesn’t mean bad.

***

Dear Brother,

Don’t be afraid of labels.  It took me time to realize that when Brooke received her autism diagnosis, she was still the same girl she was before the doctor said, “autism”.  The label doesn’t change our kids dear brother.  In fact, the label empowers them…empowers us.  The label gives us a powerful tool in helping our kids get the services they need.  The label can turn resentment of strangers into compassion, helping them understand that when our kids have public meltdowns, it’s not because they are bratty or that we are bad parents, but rather because the environment has overwhelmed our kids’ capacity to cope.  The label is not about pigeon holing our kids…it’s about setting them free.

***

Dear Brother,

It takes time for us to get to the place where our kids’ mothers are.  Truthfully, we will never occupy the same space.  We are not wired the way they are.  Intellectually we will know, but a small part of our hearts will always betray us.  But that’s okay.  Just like our kids, we are different.

Autism is part of who our babies are.  Admitting that doesn’t change them.  Admitting that doesn’t hurt them.  Admitting that doesn’t mean you love your kid any less.  Admitting that doesn’t mean you will stop searching for ways to make his life easier.  In fact, admitting that will in all likelihood hasten the influx of tools that are available to you, your wife, and most importantly, your son.

***

Dear Brother,

It’s okay to feel the way you do…it is how we are wired, but ultimately, denial only hurts the one, beautiful creature we are trying to protect.

Sincerely & Respectfully,

Luau

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With the Winter Olympics a year away, there has been a lot of talk both in the media and among athletes about the new anti-gay laws that were recently passed in Russia. Just today the world’s best pole vaulter, a Russian, came out in support of those laws. Reading some of the comments on the variety of articles I read on the subject, I was struck at how strong the opinions were of Americans. Wait, no, I was not struck – disappointed may be a better word.

If it isn’t obvious from my past writings, I am a pretty Left leaning guy when it comes to social issues. I hope my Right leaning readers won’t leave me for expressing this (freedom to disagree IS one of the foundations of our country), but WTF guys???

So, two thing –

I.

What is it about gay rights that scares the common sense out of the Right? Just because we grant gay people the same rights and privileges we take for granted does not mean, in the words of one very conservative reader, that the gay lifestyle is being pushed upon us.

I will give you a real life example:

  • I am not gay.
  • I have some gay friends.
  • I married a woman.
  • I did/do not feel any pressure to go find a man and explore what it means to be gay because…I am not gay.

See how easy and un-pressured that is?

It reminds me of the religious nuts out there who don’t want their flock to be exposed to other religions because those people might choose another religion…except NOT because you can choose your religion…you can’t choose your sexuality (straight, bi, gay or somewhere on the spectrum).

If your child or spouse or sibling or parent or friend comes out of the closet after being exposed to the gay community, those gay people didn’t make your child/spouse/sibling/parent/friend gay – at most that community gave your child/spouse/sibling/parent/friend the courage to stop living a lie; and isn’t that what we all want for our loved ones? Yes, I imagine being gay is probably more difficult than being straight in this country, but isn’t living a lie worse? Would you want your loved one to live a lie forever?

And let’s not bring religion into this (but Luau the Bible says…). There are a lot of things the Bible says and unless you are living strictly by its teachings, you really have no legs to stand on in a Civil Rights argument if you are going to use the Bible as Exhibit A. Not everyone follows the Bible. Would you want to have to follow the teachings of the Koran or the Torah or the Tao Te Ching? Although I disagree with many religions that are anti-gay, I would not presume to tell those religions what they should or should not believe.

So that whole “I don’t want that lifestyle pushed on me” leads me to wonder if there is an underlying insecurity about one’s personal sexuality.

II.

Remember what happened in Germany about 75 years ago? Yeah, that. I am not a skilled enough writer to be able to put it any better than Martin Niemöller did in 1946:

First they came for the communists,
and I didn’t speak out because I wasn’t a communist.

Then they came for the socialists,
and I didn’t speak out because I wasn’t a socialist.

Then they came for the trade unionists,
and I didn’t speak out because I wasn’t a trade unionist.

Then they came for the Jews,
and I didn’t speak out because I wasn’t a Jew.

Then they came for the Catholics,
and I didn’t speak out because I wasn’t a Catholic.

Then they came for me,
and there was no one left to speak for me.

Don’t we have the common sense to understand this and how it applies to what is going on today in Russia?

***

So I ask my friends on the Social Right once again, in the most respectful way…WTF???

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So when I wrote my Priorities blog post on Monday, I wasn’t being completely honest.  I didn’t lie mind you – I have been studying my butt off all week and will continue to do so until I get my certification.  I just wasn’t being completely honest about why #AutismStreaks was going on the shelf for a while…

It comes down to some very basic chemistry – in order to create an exothermic chemical reaction, one needs two things: a fuel and an oxidant – for endurance runners (really for any runner running over 400 meters…see?  I’m studying!) that means glucose and oxygen.  You take one of those two things away and it doesn’t matter how well trained an athlete is, s/he is going nowhere fast.

For the past several (about 3) weeks I have been having some breathing issues.  Don’t panic…my doctor doesn’t seem too worried at the moment so I’m not either.  BUT it has made running extremely difficult – toward the end of last week, even running 1 mile was an exhausting task.

More than anything I am frustrated.  I have almost always run through injuries; my general feeling being that I could usually run an injury back to health – whether it was my foot or my back or my hip or my knee, unless the pain was acute, I usually would run through injury and within a day or two that injury would be gone.  I have even used the same method with illness – whenever I would feel a cold or flu coming on, I would run; run hard to create an internal body environment that would be unpleasant for any virus that was considering setting up shop.  Again, this would usually work and I would be well within 12 hours.

This has been different.

My breathing is shallow; deep breathing takes concentrated, uncomfortable effort.

If I can’t breath, I can’t run – it’s simple chemistry.

I’m hoping my doctor’s sense of non-urgency is warranted and that this goes away as mysteriously as it appeared and I can get back to running at least semi-regularly.

Keep your fingers crossed!

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