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Today I pay tribute to a streak ended.

Yesterday my friend Adam was forced to end his 510 day running streak because of a sudden injury.

510 days!

Just to put that into perspective, as of yesterday my streak now stands at 140 days. Even if I were to do that 3 consecutive times, I would still be 90 days short.  My streak stands at 20 weeks.  Adam’s streak ended one day short of 73 weeks.

That’s a lot of running.  That is endurance.  That is commitment and dedication.  That is strength.

***

What happened to Adam you may ask?

On Saturday Adam, while hiking the trails, he was forced to defend his family from a bear that tried to attack them. After bobbing and weaving away from the bear’s fierce claws, Adam punched it right in the nose. Stunned, the bear began to back off, but just for good measure Adam threw in a powerful side kick to the bear’s stomach.

The bear turned tail and ran for the hills. There was much rejoicing, that is until the adrenaline began to wear off.  That was when Adam realized he had twisted his ankle with that final kick. His ankle began to swell and he feared the worst.

On Sunday, Adam valiantly attempted to run. After a mile (the official daily minimum) he was done…he would not run on Monday. He knew that although he had defeated the bear, the bear had broken his streak.

I would like to emphasize, the rumors that Adam twisted his ankle heading out his patio door are patently untrue and in all likelihood were invented and  spread by the bear’s embarrassed family.

***

All joking aside, much respect to Adam and his 510 day streak. I look at that number with awe and respect.  A lot of things can go wrong over the course of 510 days that prevent a person from continuing, and somehow, through it all, Adam always managed to get at least one run (and sometime two or three) in.

Adam on the trail.

Adam on the trail.

A pox on the bear and his family…and on patio doors too!

Houdini

It happened in what felt like an instant.  With family and friends visiting, we were all playing, laughing, chatting in the backyard.  I think Brooke must have been maybe 4 years old.  At that point we were a relatively newly diagnosed family.  Jess and I were a bit overwhelmed by the sudden, almost complete opacity of our now uncertain future.

One moment we were all yucking it up, the kids running about, and the next moment it was, “where’s Brooke?”

The conversation stopped.

Someone asked the other children if they knew where Brooke was – blank stares.

Within seconds several of us were bolting to the other side of the house, which is where we found her, maybe 3 or 4 feet from the street, completely unaware of the dangers in front of her.

The next day I called a guy about putting in a fence, which we had in place within a week.

***

It could happen to anyone.  As parents, we have all had that moment of panic, that moment of where’s my baby? 99.999% of the time, we find them, oblivious to the unintentional scare they have put us through.

Whether or not a child is autistic, if the stars line up just so, something like what happened to Mikaela Lynch and her family could happen to anyone.  It happened again this weekend in South Florida where we lost a young boy to wandering and then drowning.

Some people have had the nerve to call into question the parenting skills of those kids’ mothers; that they should have been watching them at the time, as if they should have known that that was the moment.  Last week I responded to some of those people by asking them to a) take some time to actually walk in the shoes of the parents they were bashing and b) remember that the First Amendment must be tempered by the Two (Yes, TWO!) Commandments.

A lot (A LOT!) of our kids are escape artists on a Houdini-like level.  We can put up gates and locks and other barriers, and our kids, with their unique perception of the world around them, can see the invisible, gaping hole we have left for them to walk through.  We can buckle ‘em down in car seats six ways to Sunday, and they will still be able to squirm their way out like master contortionists.

Until we learn, or at least make a genuine effort, to see the world through the eyes of autistic people, our children will always see our own deficits as security experts.

***

Does that mean we need to watch our kids 24/7?

Sure…

But I defy anyone who says they can or do.

Is there anyone who can honestly say they are capable of that?  And if you think that you are capable of watching your child 24 hours a day, then do it after a week of daily meltdowns in public, less than 3 hours of sleep a night and hours of personally working as your child’s ABA therapist because you have to.  If you don’t take a calculated moment to breath here and there, then at some point, you WILL break – it’s not a question of if, but when.  Add to that the complete isolation from extended family and those once considered friends that many parents face and the parental duties become that much harder.

That’s why we take 30 seconds to pee in private or walk inside for less than a minute to sip a cold mug of coffee or step outside just to take a breath – those micro-breaks are what keep us from breaking,  and 99.999% of the time nothing happens and the world keeps chugging along.

***

There should be no judging or bashing of Mikaela’s family, her mother Bari in particular.

None.

Because it happens.

For so long society has brushed our kids and our families under the rug, into the closet so to speak.  Organizations like Autism Speaks have raised national awareness of autism, but that awareness, that understanding is still rudimentary.  Until society as a whole understands what it is many of our families go through on a monthly, weekly, daily, even hourly basis, they will continue to judge without compassion.  In this age of social media and digital news/reporting/blogging, it is a lot easier to spread negative, unsubstantiated stories without taking a moment to think about the consequences (or the truth for that matter).

Our community is with you Bari – we will not judge you; we will not bash you.  Mikaela could have been any of our kids; you could have been any of us; and when something happens to one of us, it happens to us all.  We have nothing but love for you.

It could have been her...

It could have been her…

The First Amendment

Amendment I

Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.

The Bill of Rights

***

There’s a reason why the First Amendment of the Constitution comes first.  It is, arguably, the most important Amendment of them all, and 4 words, found in the middle of the amendment (the freedom of speech) have come to represent what our country is all about.  We have the right to speak our minds without fear of reprisal from the government.

It protects the right to speak freely, openly and against authority…

…it also protects your right to be an asshole.

So if you choose to write a blog ripping a family who has just lost their autistic daughter, and with unsubstantiated facts, call into question their parenting skills and suggest they should be investigated for negligence, well, that’s the First Amendment at work.  If you want to be mean-spirited and call outraged readers nasty, I mean really nasty names, well, again, that’s the First Amendment at work.  If you want to accuse others of cyber-bullying when people respond in kind to your speculative, anger inciting, hateful behavior, well, you guessed it, that’s the First Amendment at work.  Yes, the First Amendment protects your right to be an asshole.

But here’s the thing…if you do those things, then you’re an asshole.

I think the Lord said it best when he gave Moses the Two Commandments…

realcommandments

So if you are that asshole blogger, just remember this – the First Amendment protects your right to be an asshole…that doesn’t mean the First Amendment tells you to BE an asshole.

Be cool.

Shoes

Different-Types-of-Shoes1

Whether we care to admit it, we have all done it – rolled our eyes as we’ve listened to someone go on about how difficult they have it.  I know I have.  Whether it’s food allergies or diabetes or behavioral issues, I’ve acted as if intently listening, truly concerned about what the speaker or speaker’s child is going through, all the while rolling my eyes internally thinking, really?  you’re complaining about that?  Oh.  My.  GOD!  Will you shut up with your non-problem?

I don’t try not to do that anymore.  I learned quite a while ago that for each of us, our issues are just that – ours.  They are personal, they are deep, and they can cause much distress in our lives.  I once rolled my eyes at food allergies – but you know what?  Food allergies can kill.  I used to roll my eyes at diabetes, self induced in particular – but you know what?  Diabetes can kill.

Unless you are living it (or have lived it) you can’t fully understand it.  Even within the autism community, there are such a wide range of experiences that are as unique from individual to individual as diabetes is to food allergies.  I cannot begin to truly imagine what it would be like to have to wipe feces off the wall on a regular basis.  I haven’t lived it, so I can’t/shouldn’t judge a parent in that situation for some actions that may seem a little “different” to me.

Which brings me to the awful events surrounding Mikaela Lynch.  Earlier this week, 9 year old Mikaela, who was more impacted by autism than my Brooke, slipped out of her parent’s care.  Sadly, a couple of days ago she was found in a creek, deceased.   Regardless of whether one was part of the autism community or not, I would have assumed that everyone would mourn the loss of this young girl and if nothing else, have thoughts of condolences to her parents and family.

But that was not the case.

To my horror, there were some who decided that maybe less than 24 hours after Mikaela’s body had been found, it would be a good idea to ask if  blame should be laid on the parents.  Now, I am not going to name anyone, in part because some bloggers get paid by the number of times people click on to their page and even more with every comment that is left on their posts.  The more clicks and the more comments, the more they get paid (I wonder what kind of writing such writers are inspired to produce?).

It became apparent that one particular person throwing blame at the parents was not a parent.  That person, when called on that fact, rightfully asked if the market on criticizing parents was cornered by those who are parents.  It’s true, non-parents have just as much of a right to criticize a parent’s action as anybody else…

BUT

…but that person, as any of us who would judge someone else, should have at least made an intellectual attempt to walk in their target’s shoes.

As much as we over share our lives via social media (and believe me, I know I am guilty in the first degree) how well do we truly know each other?  Not nearly as well as we think.

Were Mikaela’s parents negligent?  I can’t answer that because I didn’t know Mikaela, her parents or her 8 year old brother, who was apparently keeping an eye on her.  YOUR first reaction may be what? an 8 year was supervising a 9 year old autistic girl?  Horrors!  but then you would fail to recognize that you were looking at the situation through the lens of your life or your personal experience and  knowledge of 8 year olds.  I have known a few 8 year old kids who I would have trusted to keep an eye on things while I went inside to do dishes, sweep the floor or whatever it is that Mikaela’s parents were doing inside their house.   NT (neuro-typical)  siblings are unfairly asked forced to grow and mature quickly.  Unless you really know them, how can you really judge them?

I try not to jump to judgement on a daily basis and I fail at it over and over again on a daily basis (see Amy’s Baking Company meltdown on Kitchen Nightmares – it’s really hard not to judge) but I try to remind myself every time to at least imagine walking in someone else’s shoes for a bit before dropping the hammer.  I hope people will do that before snapping to judgement on Mikaela’s family, or anyone else’s for that matter.

IN ADDITION:

It would appear that there are actual specifics to the timeline that one certain mean-spirited blogger chose to ignore.  The blogger chose to write that the parents didn’t notice Mikaela was missing for 30 minutes and that they were inside the house the entire time.  Sensationalist at best, mean-spirited and money driven (clicks and comments – there’s a reason why this blogger responds to comments with insults; to get a rise out of commenters who will then leave more comments, putting more money in her pocket) more likely, this blogger painted the worst possible picture without any real facts.  Here is the timeline and what the mother was doing according to to the National Autism Association -

While her two children played on a trampoline on Mother’s Day, Mikalea’s mother was in the back of their vacation home putting screens on vent holes because the wasps were building hives in them. During this time, a bee scared Mikaela’s brother, he ran and Mikaela disappeared. Based on video surveillance and time stamp, Mikaela’s parents were two minutes behind her. Thirteen minutes into frantically searching for their daughter, they called the police.

Please stick to reputable news sources when forming an opinion – the examiner.com, though generally entertaining, is not one of them.

tick tick tick tick tick...

tick tick tick tick tick…

It is now less than 30 days until the TARC 100.

Cue mild panic attack.

Less than 30 days until I make my first (and possibly last) attempt at covering 100 miles on foot in less than 30 hours.  30 hours is the cutoff.  The race’s website states that if one is not on at least 30 hour pace when he or she reaches the various aid stations then that person will be pulled from the course.

30 hours. That’s 3.33 miles per hour.  18 minute mile pace.  Seems simple enough…until you really think about it.

Gah!

My buddy JB and I have set our goal to finish under 24 hours, with an A+ goal being sub-20; but this plantar fasciitis thing has proven to be harder to shake than hoped and that has set back training for the last few weeks.  Sure I’ve continued to run through it to keep #AutismStreaks alive (I know, not wise) , but I haven’t been able to put in the miles one should when training for a 100 miler.

Sigh.

So what to do?

My thinking now is just finish.  In my head now I’m thinking if we go sub-24, that would be fantastic, but in reality, if I can cover 100 miles in anywhere between 24 and 30 hours, I will be pleased as punch.  In a perfect world I would have done a 50-miler last weekend.  Instead, I ran a total of 4 miles.

The world’s not perfect; training doesn’t always go as planned; ultimately we need to make adjustments to our expectations.

That’s life.

The Starving Arts

Today I have the pleasure of handing the reins to a guest-blogger who shall remain anonymous.  She has fought demons that many “fitness” types will never admit they battle on a daily, even hourly basis.  Has she won, lost or fought to a draw?  I will let you be the judge – but be kind.  Despite posting anonymously, I think she is courageous to share her story.   I find the honestly in this post enlightening and ultimately uplifting, especially as I move ever closer to joining the fitness industry.
-Luau

***

People look at me and congratulate me on my weight. They see the outside, borne of exercise and hard work.
And starvation.
And obsession.
They don’t realize that every compliment drives me back onto the road, pounding down another two miles. They don’t realize that, some days, I survived on less than 500 calories and gallons of Diet Coke.
That starvation is control.
And that, if your world is falling apart, sometimes the only thing you can control is yourself. But I went about it the wrong way.

***

I approached Luau about writing this piece a while back; after therapy, I’d finally admitted what my husband and mother already knew: that was I starving myself. That it was a badge of courage for me.
I’d started running after finally being healthy enough to do so. Combined with being the primary caregiver of two small children, working a stressful job, and dealing with a strained marriage, running gave me an outlet for all the stress in my life.  But, as my husband worked longer hours, and as stress piled up, I couldn’t handle it. I started eating less and less. I told myself that I looked good, and that I was happy.

That was a lie.

I saw the truth in the mirror. The gaunt cheeks, the sallow skin. The dry hair falling out in handfuls. I felt my ribs in the middle of my chest, between my breasts, and was terrified that I had some sort of tumor. But I realized that those were my bones, rising up to meet skin because there was no fat between them. On I went, admiring the gap between my thighs, and the slimness of my calves, and the sharpness of my shoulders and collarbones.

You are beautiful, I told myself. I could model clothes with this figure, right? Most women who’d never given birth weren’t this thin; I wore my slimness as a medal of honor. My sharp angles were an award; they were a matter of pride. Every compliment fed the obsession; every word of praise was fuel to the fire of control burning within.

With help, I realized that my relationship with food, and my obsession with thinness…it was all a way to control myself. To get a hold of my life. To stop the downward spiral. She told me that I was an anorexic; I don’t know if that is true, but I think that the label “eating disorder” applies. I told my mother, and I reached out to another friend who I knew was a master of the Starving Arts.

I stopped running.

I started eating.

Later on, life improved. My marriage improved. And after I’d put on five doctor-ordered pounds, a friend said, “Thank God; you looked like a stick figure.” Those words hurt, but I know now that they were true. When my mother recently came to visit, she praised that my “face had filled out;” it took every fiber of my being not to stop eating entirely when I heard that. This, from a woman who had once criticized my heavier self in college, and who belittled her own body. Who had had breast implants and liposuction at some point to make herself more attractive.

Did she not see the walking contradiction? Did she not understand why I couldn’t believe her words?

I knew, though, that the day my beautiful daughter said her round little tummy was “too heavy,” I had to change. I immediately told her how beautiful her stomach was, and decide to commit to a life of self-love, as best as I could. And that meant admitting that I couldn’t control everything, and that I had to control myself in a healthy way. Which meant that I could no longer starve myself; I had to control that obsession and need.

Today, I look at pictures of beautiful friends, friends with soft bodies and ample breasts and hips. Friends who have a comfortable place for babies to rest on, instead of shuffling to get comfortable, as mine do on me. And I think to myself: You were happier when you were heavier. And I think again that I wish I had the courage to have their softness. Even if it isn’t necessarily the healthiest choice, that body takes the same courage that it does to run a marathon.

Their bravery is legendary to me, because I’m not sure I’ll ever have it again.

But I’ve written this story after eating a good dinner. And in a minute, I’ll have a brownie. Pretty good for a girl who used to say that no meal could be over 200 calories, huh?

And someday soon, I will run again. Not out of a need to control, but to know that my body is strong and healthy.

And that I am sound.

That life is better, and I am, too.

Grasping for Hope

There are a lot of parents of autistic children out there who just want to “fix” their child.  Although I believe my view on Brooke’s autism has changed over the years, I do distinctly remember a time when I felt exactly that.  Have I fully embraced the neuro-diversity camp?  No, but I do feel like I see more clearly why that group is so vocal, so adamant about their views, thanks in part to Jess’ outreach to the autistic adult community.

Still, as a father, it pains me when I see my baby struggling, and I can’t help but quietly wish that certain aspects of who Brooke is were different.  That sense of helplessness is what can get us, parents, into trouble.  We will grasp onto the slightest bit of hope, the tiniest shred of promise, the smallest particle of “proof” in the hope that we can “cure” our child of what “ails” them.  Whether we do it in our heads or actually move forward with it, we jump to attention when the snake oil salesperson presents us with an “opportunity”; we go to “that place” when the doctor says, “well, maybe…”

***

Yesterday Brooke has her annual check up with her pediatrician.  I like our pediatrician.  She’s the type that approaches things with a “don’t worry about it until you have to worry about it” attitude.  She sometimes seems cavalier about things, but because of that, when she says something needs to be done (like when she overrode the ER and said that Brooke needed an EEG stat a few months ago) you know she means business.  So yesterday we had Brooke’s annual.  After taking her measurements (at 10 she’s only 49.5 inches tall and weighs only 50 lbs.), the doctor looked at her growth chart and said she wanted to test for Celiac disease.

My immediate thought was really!  now this?  another goddamned thing to deal with??? Jesus Effing Christ!!!

We would have to draw some blood and have it tested, which we will do in the coming weeks.

What does this have to do with grasping for hope?  In talking about the effects of Celiac disease, the doctor mentioned some of the better know side effects (lack of growth, etc), but then she mentioned that in some kids Celiac disease can cause ADHD type symptoms and affect the child’s ability to learn.  Taking into account Brooke’s lack of growth and her precipitous drop in verbal IQ over the last two years, the doctor felt that we should cross our t’s and dot our i’s.  The likelihood is that it is not Celiac disease and that she simply burns through her calories because she never stops moving.

But what if?

But what if there is something going on there? What if there is something going on in her gut (shown to be our second brain) and it’s affecting her brain?  What if she went off of gluten and suddenly the anxiety and reading comprehension issues and processing issues went away?

What if, what if, what if…

Yeah, I went there.  I’m a parent.  I can’t help it.  I went to the exact same place when we were dealing with the possibility that Brooke was having epileptic seizures.  A small part of me hoped for the worst so that the path forward would become clearer – that there might be an answer.  How awful is that?  There is a small part of me that is now hoping, maybe it’s been Celiac disease all along?  Maybe the autism is much milder than we think.

Grasping for answers.

Grasping at any possiblity.

Grasping for hope.

grasping for hope...

grasping for hope…

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