Graduation Day is Almost Upon Us

My oldest son is graduating high school (hopefully) in 10 days.  There were more than a few moments of doubt that we would ever get to this place.  Yeah, my kid has got some issues and I have more than a few issues with school, with expectations, and with life in general.

So, it is as a parent of this type of child, and as a person who hated and did not fare all that well in school, any school, that I look at these commencement exercises as not a beautiful stepping stone, but something to be done with, preferably quickly.

First of all, the ceremony is on my birthday.  Name for me one person who wants to sit at a graduation ceremony on any day, much less their birthday. Seriously, please, tell me and I will call them up so that they can take my place.  My kid will never know.

Second of all, I received in the mail a laundry list of rules of etiquette that irritatingly took the jam out of my doughnut.  One of the bolded headlines is MARCHING INSTRUCTIONS.  Is this a class of Hitler Youth, or just, you know, regular kids?

A few tasty excerpts that really get my blood boiling are:

" you have paid for your cap and gown so you can "keep it" as a souvenir"  

Whoo, whoo, whoo!  Effing really?  How much did that cost?  WHAT THE HELL DO YOU DO WITH A GRADUATION GOWN AFTER GRADUATION?  And why is "keep it" in parentheses?  Is it because you won't "keep it"?  Your "parents" "will" in their "garage"?  

What a total waste.

" boys should wear a dress shirt and tie, dress slacks with dark socks and dark dress shoes.  Girls should wear a dress or a skirt and blouse "

a)  Great.  There goes another $150
b)  What century is this?  Why do girls have to wears skirts or dresses?  

Gross.

" A professional photographer will be taking a picture of each graduate as he/she receives the diploma. (this part is inexplicably underlined)  These pictures will be available for purchase on line on a secure website. "

Meaning:  Cha ching  

I will take my own shitty pictures, thanks.

Oh, and " the ceremony will be recorded and you will be able to order a copy."

Oh, goody.  Nothing better I can think of than fast forwarding through two hours of yawn-tastic ceremony to watch three seconds of my kid NOT looking at the camera.  And I get to pay for it?  Where do I sign?!?  

One last thing:  "you will receive your diploma only if all financial obligations with the school have been cleared, and if you exhibit appropriate behavior during the entire ceremony."

I would love for them to try and tell me that my kid did not behave, so therefore, he does not get a diploma.  Nice try.  We are finally out of here, I think the kid is entitled to flip off the principal, no?  I mean, NO.  I don't want my kid to flip off the principal, but seriously?  Way to try and scare us into being good little automatons one last time.

Maybe I am just an antisocial jerk.  Maybe I just don't get it.  I mean, I get (to a point) rules.  I get (to a point) ceremony.  I just don't get why my kid can't wear sneakers.  I don't get why there is not an open bar for parents (they would clean up!) to make the ceremony more enjoyable.  And I really don't get mortarboards.  

Anyway, Happy Graduation, everyone!  ***takes a shot***
 

Porn: You're Doing it Wrong

*** disclaimer:  I WILL be talking about (whispers...) sex in this post.  Proceed at your own risk. ***

My BFFF and I were having an inbox discussion about things that we found porn-y that were not porn (ie:  things that get us hot that are not your typical bow-chicka-wow-wow things.  Further, bow-chicka-wow-wow rarely works for me, but that might be a post for another day, like, when I am 80 and I really don't give a shit about what I write or, who reads it.)


My friend says that Charlie Hunnam punching out Robert Pattinson would do it for her.  My answer to her about that is where I got this post title.  

"Porn:  You're Doing it Wrong".  

I mean, sure.  I was totally rooting for the werewolf in Twilight.  And this is coming from someone who LIKES vampires.  At least, I used to, until Hollywood got ahold of them in recent years.  Christopher Lee as Dracula?  Yes, please.  Tom Cruise as Lestat?  Dear God, no.  

And yes, I realize that Interview with the Vampire came out in 1994.  1994 IS recent when you are old. 

Maybe if that Twilight werewolf had had a smidgen of acting ability, it would have been a little porn-y for me.  Alas, the in-my-head, book version of Jacob was way hotter.  Yes, I read the books.  So, who I am to judge anything?  

I find it more-than-mildly porn-y listening to Jason Statham's Cockney sarcasm.  It doesn't hurt that he is nice to look at, though, not what you would call classically good looking.

mmm...

This all started because I mentioned that they were making a Magic Mike 2.  I mean, I get that Channing Tatum is cute AND a good dancer, but I don't find male strippers, even ones that look like 

Channing Tatum

and Joe Manganiello, 

attractive.  Okay, maybe I said that wrong.  They are attractive, but I don't find stripping and dancing around in g-strings to be a turn on.  I really don't need to see that thing flapping around in my face. 

 Seriously.  

Penises are like little aliens attached to men's fronts.  They seem have minds of their own and I find that unnerving.  

There are plenty of parts of the male body that I find attractive, but that thing?  Yeah, it's just a tool, for me.  Get to work and quit waving it around.  Yes, I see it.  God.

Then, we got on the subject of another movie coming out:  Fifty Shades of Grey.  

I could never write a review as hilariously accurate as this one, so I will link to it.  I have probably read it fifty (har har!) times and it makes me cry with glee every, single, time.

Suffice it to say that I did not find those books, scratch that, BOOK, since I only got through about six chapters of the first one before I started skimming, to be a turn on, at all.  I did find them silly and annoying, though.  I kept texting the BFFF things like:  "Is she for real?"  "Oh, yes, a 21 year old virgin.  That's believable" and on and on until I finally threw the book across the room.  

Maybe I am a snob.  Maybe I am a prude (not likely, but sure.).  Maybe I just don't get the attraction.  Maybe I just don't like smarmy guys who think money can buy everything.  Maybe I don't identify with weak women.  Maybe the whole thing just went over my head and yanking a woman's tampon out is super, wildly, sexy.  

Maybe.

But, I doubt it.

Part of me is wondering if this is going to become like The Rocky Horror Picture Show and people are going to bring tampons to the theater to throw at the screen.  THAT, I would pay to see.  Actually, I might just start that trend.  

Anyway, if you hear me snickering in the back row, try and ignore me and remember, it's what you think that counts, not me...(weirdo).

Meet the Neighbors

Today is the twentieth anniversary of the Northridge earthquake.  How twenty years have gone by is just crazy to me, but, somehow they have.

I was living in Hermosa Beach, California at the time, but spending most nights at my boyfriend (now, husband)'s house in L.A..  The night before the quake, we stayed up late, knowing we had the next day off.  We noticed the cat was acting funny, but didn't think much of it.  I mean, sometimes, cats do weird things.  Poor Poo Poo Meow was trying to warn us, but we just kept laughing at him as he tried to hide under things that were way too small for him.  

We got to bed at around 1:30 or so and were woken up by a jolt that turned into heavy shaking somewhere around 4:30.  I'm not sure at what point I realized it was an earthquake, but it definitely did not register immediately.  All I knew was that it felt like the world was ending.  I could see lights flashing through my closed eyelids (transformers) and I could hear screaming.  I realized hours later, since my throat was so sore I could barely speak, that the screaming had been coming from me.  

After what seemed like hours, but was less than a minute, everything stopped.  I could barely breathe because Danny had thrown himself on top of me when it started.  Once he let go, he immediately jumped up and went into Marine mode.  He searched for his flashlight (buried) and tried to get out the (stuck) door, slipping on cracked and fallen cd cases as he went.  In my terrified state, I wasn't about to let him leave my side, so I followed him, slipping and crashing behind.  

It took a few minutes of adrenaline based shoving to get the door open and when we tumbled into the hall, we began shouting for our roommates.  Everyone looked ghostly pale in the faint light.  

Once we realized everyone was okay, we headed outside to assess the damage and get away from the wreckage in the house.  We all kind of assembled on the front lawn, none of us wanting to move too far from the others.  We kind of stood there for a little while, talking about what had happened, wondering how many aftershocks there would be (many) and wondering how trashed the house was (kinda, but livable).  

At some point, I realized I was cold.  When I looked down at what I was wearing, it turned out to be Danny's flannel shirt, unbuttoned and inside out and a pair of underwear.  I remember thinking, huh, I should probably put some clothes on...maybe some shoes, too.  It was January after all, and even in L.A., these were not weather appropriate.  No matter that I was half naked, outside on the front lawn.  We all were.  The fact that no one cared or really even noticed was just proof of how scared we all were.

I did eventually fix the shirt and get some shorts.  I might have put on shoes, but, I'm not sure.

The first coherent phrase that escaped my lips, maybe ten minutes after it all happened was "It figures that we have an earthquake on our day off!  How many Mondays do we get off?!?!".  I wasn't even trying to be funny.  I was actually pissed.

After getting over the initial shock, we started to take in our surroundings.  The next door neighbors were huddled on their front lawn, as well.  All of a sudden, we hear our roommate say to one of them:  "Hey!  Weren't you in "Tales From the Crypt"?", as if he just walked into a party and was making small talk.  The guy kind of looked at us blankly for a few seconds and then said "uh, yeah".  We found out later that he had just moved to L.A. from New York the week before.  What a welcome!  He turned out to be a nice guy and a good friend and he's now semi-famous.  But, hey.  That is L.A. in a nutshell.

The twenty four hours afterwards have become somewhat of a blur to me now, but a few other things stand out; like not wanting to sit on the toilet (feeling a porcelain tremor go up your butt is not nearly as fun as it sounds) and not wanting to sleep alone.  We all (roommates + girlfriends and assorted others) tried to sleep in the living room that night.  Mostly, we talked and joked.  I still laugh thinking of one guy moaning in his sleep every time the ground shook.  I think he was the only one who actually fell asleep before light.  

So that's it; my earthquake story, twenty years later.

Hypothetical

I have written ad nauseum about losing a good friend (ex-boyfriend) of mine.  I probably wrote five or six (or more) different posts on different blogs about it over the years, and much, much more than that in various diaries and such.

Here is an excerpt from one of my favorite posts:

My favorite song to listen to when I am depressed is "Smoke" by Ben Folds Five.  You can feel the despair in the way he bangs the piano keys and in the catch of his voice.  

But, the lyrics...therein lies the magic.
"Here's a secret...no one will ever know the reasons for the tears"

That line says it all.

It's hard to lose someone that you love, but I have found that it's the sadness that no one understands that is the hardest to deal with.  

For example:  if your cat/dog/significant other dies, everyone knows why you are sad.  If your high school boyfriend that you hadn't seen in three years dies, people are sympathetic, but only to a point.  When it's been a year and you are still talking about it, people wonder what's wrong with you.  When it's been almost twenty, they just think you are crazy.

"They were broken up!" they say to themselves.  They think they know the whole story.  But they don't.

This year marked twenty two years since he passed.  It also marked the fact that he has now spent more time dead than he ever did alive.  

I've spent many hours contemplating his death.  Even so many years later, I still find myself reaching for him telepathically.  I know that this will sound weird, but of all those that I have loved and lost, he has kept in touch the best.  It's complicated; just like it was when he was here.

I imagine that it's hard for my husband to understand this relationship.  I say I imagine because we haven't talked about it much.  Mostly, I am afraid to bring it up, for fear of sounding like a crazy person.  Of course, I am much more prone to jealousy than he is, so maybe I am just that:  crazy.  

The dead have a way of only showing their good side, though.  I forget how angry he made me and remember how much he made me laugh.  I forget that his skin was not always flawless; in the beyond, he glows with color and health.  Dying before your twenty first birthday helps, too.  I mean, it's pretty much downhill for your looks somewhere around twenty eight, so he had the privilege(?) of dying before he started balding or developing a beer belly.

I'm not saying any of this is logical.  What I am saying is that it's a tough act to follow.  

The guy I was with when it happened understood this and was, in turn, totally jealous of a corpse and actually angered by my grief.  Those were fun conversations.  Seriously?  I need to explain why I am crying?  Or worse, hide the fact that I am sad?  Geez.  

I'm pretty sure that was the beginning of the end for us, even though we stayed together for another eighteen months.  I was lost in wishing I had done things differently; regretting that I hadn't called my friend after what would be our last fight.  Too much grief and too many unresolved and un-resolvable feelings messed me up.  

I can barely remember the girl I was when I met my husband in 1992.  I was still grieving KD and I had just lost my maternal grandfather, whom I adored.  I was lost.  I remember arming myself with sarcasm and hiding my vulnerability behind a thin wall of bravado.  "You are dating someone else?  Who cares?!?"  (ha).  I'm not sure how quickly he realized that I was mostly bluster.  I'm really not sure what there was of substance for him to be attracted to, but there must have been something. I think in my sadness I had become something of a ghost, myself.  Maybe he was a bit lost,too.  Maybe we rescued each other.  

In any case, this year marks twenty years that my husband and I have been together.  Twenty years!  In that time, both of our lives have been touched by plenty of grief.  We've lost five grandparents and three parents.  We've worried and struggled and have become a family of five along the way.  

Somehow, midst all the pain, we've managed to become more, rather than less.  The sorrow has colored us in, rather than diminishing us.  We've become stronger as a couple and grateful for what is, rather than wishing for what isn't.  It hasn't been an easy lesson, but I am grateful for it.  

I am glad that I have learned that there is more to life than "counting my abs and lovers", something I used to say about my hypothetical single life.

As for my long gone friend, I will always miss him.  I just will.  There is not much I can do about that.  But as I have grown in wisdom, I have learned to feel lucky for what was and what still is.  Life is a gift.  It may be poorly wrapped at times.  It may be smaller than what we were hoping for, but if we hold it up to the light, we will see its beauty and it will be a joy to behold.

Negative

Recently, a friend of mine made an offhand comment about some of the negative things that I had posted on Facebook.  I was a bit taken aback, mostly because over the last several (probably six or so) months, I have been really striving to only post positive things.  The only exception to this rule is that if I post something ugly, or horrible or sad, I won't just post it with a sad face :( ; it will be something that I am actively working on changing.

For example, when I post about the plight of Russian orphans with Down syndrome, it's not to boo hoo about it (though, it does make me cry), it's to call attention to something that I am actively working on changing.  Change takes time.  Change takes outreach and noise.  Change takes reaching out to people who speak different languages.  Change means shining a light on perceived "norms" and asking questions and challenging individuals to look at things differently.

Facebook has it's issues, and being a huge time waster is one of the biggest; so in between posting memes of funny cats and hilarious "Fifty Shades of Grey" reviews, I want to spend some time doing something good, even if it doesn't appeal to everyone.

I mean, I get it.  The world is effed up.  There is a ton of stuff to bring us down; crazy world leaders, environmental degradation, extinction of beautiful animals, children in danger...the list is endless.  If you let yourself get sucked into all the horror, it's hard to feel positive about anything.  I mean, why bother?  It's so easy to be consumed by it all and to feel like whatever good you can do will be swallowed up by the rest of the crap.  Maybe it's best to just focus on the good things and ignore the rest.

Except, I can't.

I mean sure, I love cute pictures of babies (here) and animals (here).  I love videos that help restore my faith in humanity (like this) and (this) and (this).  I KNOW that there are more good people than bad and I KNOW that there are so many individuals hard at work, changing things for the better, in small ways and large.  

But, the bad stuff is there and it needs facing to keep it in check.  

Every day, every minute, I have a choice.  I can ignore the bad, stick my fingers in my ears and say "la la la, I can't hear you" and continue playing Scrabble, or I can take a deep breath, see what issues feel pressing at the moment and dive in.  It's constant battle between the two.  Sometimes, the issues are so absolutely soul crushing that I need to walk away for an hour or a day or a week before picking up the thread again.

Sometimes, I am so struck by the hatred (this guy), that I feel paralyzed and it takes me a few days to formulate a plan of defense.  I was ready to begin writing about the Michael Laws' of the world, when my friend posted this.

My first reaction was "god damn it.  I can't deal with every slight, every single infraction, every joke made at the expense of kids like mine" and I played some Scrabble and scrolled and tried to formulate the blog post that was percolating along with the coffee and watched the snow fall fast outside my window.  

My second reaction was "god damn it!  I have to email the guy!" and I did.  This is what I wrote: 

Steve, 

I get that the onion is satirical and my sarcasm muscle is usually sore from overuse. But, kids should be off limits.  

Babies with Down syndrome are still, in 2013, routinely sent to filthy orphanages to rot in Russia.  Children with Down syndrome in this country still have to fight to be included in school, in sports and in a society that too often does not want to "deal" with them.

My kid and children like him are not broken gifts.  They are cherished members of their families and their communities because I and many parents like me have fought for years against prejudice.  

Please don't make this job harder.

It took me all of five minutes and it felt good hitting "send".  I supported the friend who posted it first and supported my kid in NOT ignoring it.

I'm not saying that I will jump on every bandwagon.  There are only so many hours in the day that I can tweet celebrities who think calling people "retards" is still honky dory.  There are only so many items that I can focus my attention on before I become pulled in too many directions.  

The only things that keep my going are the fact that I am trying, in spite of the overwhelming-ness of it all, to make the world a more welcoming place for my children and that I am not alone in my quest.  

Alone, I would hardly make a ripple in the vast ocean of insulting, unfunny and downright dangerous debris that I wade through.  Together, we make waves.  From the tiniest splash made the first time a parent kept their kid home instead of placing them in an institution, to the parent whose kids are going to college and driving and getting married, we are making our presence known.  

You feel that wave?  That's us pushing back.

Boxes: Labled and Otherwise

A TED talk I watched today (Here's the link) really got me thinking about the boxes we put ourselves and others in and how we label those boxes.  

We label things out of necessity, otherwise everything we owned would be put into a giant junk drawer/closet/garage, never to be found again.  So, labels serve a purpose...for things.

Labels are good for people if, and only if, the person you are labeling identifies with the label and you may use it only if they feel positively about it.  For example, you could label me fat, but unless you want to make me cry, please don't.  Label me funny and you will be right...and if I cry it will be because I am a total sap, not because you've hurt my feelings.  

Positivity in labeling is VERY tricky in the world of disabilities.  That is a post (or seven) for another day.  All I will say here is PLEASE follow the lead of the individuals with disabilities and their advocates; always.  Words matter.  

I found it interesting when Ash spoke about how angry it made her to be asked whether she was a boy or a girl.  I wondered why she chose to dress in a way that made it ambiguous if it was such an issue.  I mean why?  If you want people to know you are a woman you should have long hair and wear pink and not camouflage, right?

I'm kidding, ...sort of.  The problem, of course, is the boxes that we put people into.  The ??? box does not work for us.  We need to name it.  We need to know.  Does a gay man go in the pink box or the blue box?  What about a woman?  What if she is straight but HATES the color pink? What if she had cancer and her hair has not grown back?  What if she is happily married, but HATES long, sweaty hair?  What if she is a lesbian but (horrors!) looks straight?  What if they are trans-gendered?!?!? Boom. Heads explode.  

And to answer my own question about how Ash dressed:  Maybe she was comfortable that way.  Maybe she wanted a fight (I can relate to that).  Or maybe, it was a little of both.  Or, maybe she just didn't feel that she had to put herself in the "girl" box.  She is a girl/woman, she is gay, she dresses in jeans and button downs and her hair is short.  Geez, that's a long label.  It doesn't fit and that bothers us.  In turn, it bothers(ed) Ash (she seems cool with it now) that it bothers others.  

This is getting to be like a movie that involves time travel.  I'm going to leave the "chicken or the egg" conundrum for another day as well.

This talk also made me pause and think about how my occasionally (okay, often) militant approach to issues might have backfired.  It is something I have been thinking about; trying to figure out a way to get my REALLY IMPORTANT POINT across without resorting to shouting, or my absolute favorite: sarcasm.

It's really, really hard.  

I don't think I realized I was doing it, or rather, realized how it sounded until I encountered some other shouty people with whom I mostly agreed.  The substance of what they were saying had merit, but the delivery system was flawed, to say the least.  

NOONELISTENSWHENYOUSHOUTATTHEM!!!

Wait, what?  No one listens when you shout at them.

They might hear you for a few seconds before it becomes BLARRRGH!  and they tune you out; maybe forever.  

So, you need to pick your battles, your forum and recognize that you are not the only one fighting.

Lastly, this talk got me thinking about my own labels.  It's funny, because when I think of labels for myself, none really come up, other than ME.  Finally, I am me, after years of trying to figure myself out.

I have short hair, which I love.  I am a mom.  I am a terrible dresser.  I have blue eyes that I think are nice. I am married to the best guy I have ever known.   I identify as being straight, but I love K.D. Lang and think Salma Hayek is hot.  What does that mean?  I means I have ears and eyes; not much more.

It's not that I don't think labels can be useful.  They can.  They can help navigate grocery aisles, or libraries, or help you find a file.  I'm just not so sure how great they are when used to identify an actual, living breathing human and not some caricature.  Labels don't tell the whole story, just a little, tiny piece of it and only the piece that your mind can perceive.  No matter how many labels you put on me, you'll never never know ME, unless you put them away.

Meanness

I updated my Facebook status this morning ( as I do most mornings ) and this is what I wrote:  

Hey Annoying Neighbor! The chances of you being discovered and given a recording contract while twanging on your front porch are about a zillion to one. The chances of me coming over there and smashing your guitar Pete Townshend style? Getting better every day.

It got a few likes and a few comments.  Another neighbor agreed that this guy was among the most irritating people on the planet.

I knew it was negative and nasty; but it was also funny.  Funny usually trumps negative and nasty for me.  Uh oh.  Now I sound like Bill Maher.  Not a road I really want to go down.  We'll save that post for another day.

So, I began to think about why this guy bugged me so much and what it meant for me as a wannabe good and kind and peaceful person to write this about him.  

Sure, it's a joke (sort of) and he won't ever see it (maybe), but does that make it okay?

You know that saying "if you have to ask you already know the answer"?  Yeah.  Well, I do.  Making fun of this guy makes me no better than him.

Sure, he drives me nuts.  When he's not twanging out of tune on his front porch, he's yelling (yelling is his communication style of choice) at his kids or weed whacking.  These seem to be his only hobbies; except in winter when it is yelling and snow blowing.

I am aggravated that my dear husband (who is so much nicer and more tolerant than me) cannot even be in the front yard when this guy is out there, or he will get caught up listening to him for an hour or more.  There is no give and take with this guy; just "here is a laundry list of my problems and some anecdotes that I will blather on and on about until you literally turn your back and walk away from me".  Sometimes, even walking away is not good enough to deter him.  He is the human version of a remora.  Or the animal version of a burr.  He is very hard to shake off.

There is also the fact that he is milking the system for an injury sustained on the job, when he is clearly not injured anymore.  

And then, he complains about the "system".  And I just go ballistic.

So, what does it mean if I can't be nice to this guy?  Am I a bully?  I kind of feel like one.  The more I think about it, the more I see that he is just a little bit off center; not quite in the range of what one would think of as "typical".  Maybe he's got a diagnosis, but probably not.  I'll bet he did poorly in school, though.  I'll also bet that the silly, attention seeking stunts he pulls (like yelling so we can all hear him and playing tuneless ballads to the neighborhood) are holdouts from his childhood.  Maybe he was the kid that tagged along but never fit in.  Maybe he wasn't invited to play.  

Then, I feel sad for him because I know that feeling.  And though I certainly don't think my kids are (by a long, longshot) annoying, they do have some trouble socializing and making and keeping friends.

I'm not sure that I could ever be friends with this guy, but I need to look at myself when I plead with the world for tolerance and acceptance for my children and anyone who doesn't fit the neurotypical mold.

Maybe I need to give this guy a break before I expect one for my kid.

Maybe I'll be a better person if I take a moment to put myself in his shoes.

And maybe I won't post anymore mean status updates.

Aggravation

So, a woman sits down next to Charles and me at the beach.  Charles was digging in the sand and making walls and she said " Wow, he's really doing a great job, there!"  I smiled and said something like "uh huh" and she kept going.  "How old is he?" "Fourteen", I answered.

I was already annoyed by fact that she was sitting two feet away from him but addressed her questions to me.  I could see that he was also bothered by her.  

Her next question was "What's his name?"  So, I said "Charles, what's your name?".  He didn't answer and his body language was "JUST GET THE HELL AWAY FROM ME, CRAZY WOMAN!"

So, obviously oblivious to Charles' aggravation, she says to me "Does he speak?".

I gave her a look like "Are you freaking kidding me?"  Then, I gave a forced laugh and said that he did.  In my head I was thinking "Yeah, he talks, but not to insane strangers who approach him on the beach!"

At this point, Charles got up and headed for the end of the dock, where he jumped in.  He was clearly done with this idiot.  But, she wasn't.  She watched him jump in and asked me "Can he swim?"

Um, no.  No, he can't swim.  I'm pretty sure the lifeguards will save him, though.  I'm just going to casually observe from fifty yards away.

ARE YOU KIDDING ME PSYCHO LADY?

Otherwise, it was a lovely day.

The Fight Goes On...and On

Garrett Holeve is a role model.  At five feet tall and 140 pounds he is a compact ball of muscle.  He works out hard everyday, putting up crazy push up and pull up numbers, jumping rope and sparring.  Garrett, like many other twenty-three-year-olds, wants to fight Mixed Martial Arts.  Nothing unusual about that.

What some are making an issue of is the fact that Garrett has Down syndrome.  Never mind that his dad trains with him and he's lost weight and gained confidence.  Never mind that he is in better shape than 90% of the population, when people with Down syndrome tend to be overweight.  Never mind that he is encouraging a virtually unseen and unheard minority to literally fight for their acceptance. The focus for the naysayers is his Down syndrome.  

When we should be applauding (and many are) his efforts, there are a vocal few that find it appalling that a fighter with Down syndrome is even allowed to exist.  Because, aren't they all just sweet, chunky bundles of love?  Barf.

I get not liking MMA.  It's bloody and brutal.  It leads to injuries, some serious.

But, those facts are true for everyone who enters the octagon.  

If the fighters have medical clearance, what is the issue?

We are not talking about turn of the century side show attractions, here.  We are talking about men who have worked for months and years, only to be turned away at the last minute.  Literally, the State of Florida stepped in five minutes before last weekend's bout, which Garrett and his opponent had trained hours a day for weeks for.
http://www.winknews.com/Local-Florida/2013-08-05/State-stops-controversial-MMA-fight#.UgGDv5KThVJ

That is just cruel.

http://www.bloodyelbow.com/2013/8/6/4594176/mma-downs-syndrome-garrett-holeve-florida-stops-fight-david-steffin-cerebral-palsy

And Bryant Gumbel is right.  He doesn't get it.  He doesn't get that it's not about having a disability, it's about doing what you love.

http://www.youtube.com/watch?v=UXZMxEFRbmE

Gumbel says that these fighters might not understand the long term risks.  As if their loved ones didn't talk to them about what those might be.

And from another angle, do high school or college football players fully appreciate what the long term effect might be from years of cracking helmets with their opponents?  Maybe, but most likely not.

And Gumbel and the other naysayers don't get that this is not meant to be a freak show.  If he sees it that way, that is his problem and he needs to do some soul searching about it.  It is merely about a man who has a dream and that dream is being squashed out of prejudice masquerading as concern.

Garrett is not a pitbull at the mercy of cruel handlers.  Garrett is a full participant in his own life.  And he wants to be a fighter.  Who are we to say no?

If Gumbel is truly concerned about the welfare of people with disabilities, maybe he should help to expose the horrific conditions that people with Down syndrome and cerebral palsy live in today, right now, around the world.

Don't pick on Garrett Holeve and David Steffin in the name of outrage.  Pick on those that don't see these men as capable of making their own choices.

Check out Garrett's ESPN feature here:  http://www.garrettsfight.org/ and judge for yourself.

Rousing the Rabble

I am not one to remain quiet for very long.  Remember the woman in "Eat Pray  Love" who is "in silence"?  I would love to try that, just to see how far I could get.  I think, in my case, silence would have to mean not writing in a public way (meaning, my mom and sister and best friend won't read it), as well.  I get my ideas across much better through words on a page or screen than I do in conversation.

To keep these words and opinions to myself would be difficult, to say the least.  I would probably need lots of chocolate and terrible movies as a distraction.  Or maybe I could start running again.  That would certainly be the healthier way to go.

I should preface all of this by saying that I don't ever really intend to shoot my mouth off without thinking.  That is why I prefer writing.  I can delete before anyone sees how really crazy I am.  It does not work that way on the phone.  No.  On the phone, a person can sit in their comfy office, surrounded by colleagues that have already been warned of your lunacy with only your muddled CaliforniaMidwestNew Jersey accented voice over the speakerphone in your corner.

Sigh.

Change is really hard.  Change for the better should be much easier than it is, but somehow, we get caught up in what is easy and what is familiar and just what IS.  Sometimes, we get complacent.  Sometimes, we just wish someone else would take up the mantle of our cause and let us sit quietly on the sidelines reaping the benefits.  I'm not knocking that last part.  I have enjoyed many things that others have given their blood, sweat and tears to secure for me.

At some point, however, each one of us needs to stand for something we believe in and let the ones that come after reap the rewards.  Because if we don't, we cannot be sure that there is someone to take our place in the fight.

I just got off the phone after an emotionally exhausting hour of having my ass handed to me by someone that I thought was on my side.  It can be hard to convince people outside the circle of special needs that changes need to be made, but, when you can't even gain consensus with people who are supposed to understand, well, let me tell you, it's a punch in the face.

It cannot be a knockout punch, though.  I need to get out the smelling salts, dust off my pants and my ego and go out there again and again and again, because I know it is the right thing to do.

The main focus, for me, is the human and civil rights cause of inclusion on all levels for those with intellectual disabilities.  If you look at all the civil rights causes that have grown before this one, for blacks, for women, for gays, the fight continues until full acceptance and inclusion is achieved.  This has not really happened for any of these groups, but women have come pretty far (there is just that pesky gap in pay, limiting reproductive choices, rape culture...), blacks have as well (again, a huge list of what could be better) and gays still can't get married in most parts of the country.  So, those fights continue.

For individuals with intellectual disabilities, the fight is still in it's infancy.  Sure, we have come a long way since the days of putting your kid into an institution at birth to be forgotten.  Well, in this country, we have.  Around the world there are thousands and thousands of forgotten children in cold, soulless, hopeless rooms that they will never leave while still breathing.  

http://www.disabilityrightsintl.org/learn-about-the-worldwide-campaign-to-end-the-institutionalization-of-children/ 

So, with all the horrors in the world, I can kind of see the tendency to pat ourselves on the backs and say "Look how much better we are!".  But, when it comes to human lives, better is not enough.  

We need to rise above better and become 

The best we can be.

Open.

Welcoming.

We need to change the way people with intellectual disabilities are viewed.  We need to change hearts and minds.
We need to show those in power that we are all a sum of our strengths and weaknesses and not numbers on a ledger.
We need to show that there are ways to contribute in this world other than through our monetary earnings.
We need to show that equal treatment does not mean special treatment.
We need to be a voice for the voiceless, the powerless and the most in need of support.

We need to get out of our bubble; no matter how safe we feel in there.

MyFace

See what I did there?  

I think way too much.  I know it doesn't sound like a bad thing, but trust me, it is.  

I also, occasionally, think too little.  I am spontaneous and short tempered and passionate.  Sometimes, I forget to think before I act.  Sometimes this works out alright and sometimes, well, it doesn't.  That's okay.  Some of the greatest gifts in my life came out of acting as though rational thought was not even a consideration (my husband, a couple of my kids...ok, all of my kids, moving to California...).  The list is practically endless.

Then, there are the things that I perseverate on: 

Injustice

My weight

The environment

The meaning of life

I drive myself kind of crazy.

This tendency was bad enough before the invention of the Internet, but now, it has gotten much, much worse.

Now, whatever scary thought I get in my head ( " I am having a heart attack " / "my kid has Leukemia" /  "The World Trade Center Attack was an inside job"), I can find "proof" of it on the WWW.  Usually, I can find six million reasons why I should panic in the matter of half a second.

And I do panic...at least a little.

And then, the tiny, rational part of my brain says:  "Uh, hello?  Crazy?  Yeah, you need to take it down about seven thousand notches".  

And that also works...until the next time.

I was thinking about all of this when I heard back from the hematologist concerning my middle son, Charles, who had recently had a potentially scary blood test result (see Leukemia, above).  

After hearing that things were okay and hanging up, I had about two minutes of happy before I started to get sad for the kids who did not hear good news.  

I started to think about a little boy in England with months to live, thanks to effing Leukemia.  I thought about how, before the Internet, I probably wouldn't even know he existed, even though he is now pretty famous since he met the "Queen".  

http://www.newsday.com/entertainment/celebrities/helen-mirren-as-queen-elizabeth-ii-meets-with-sick-boy-1.5327321

Before the days of Facebook at least, and for sure before the Internet and email, if and when I heard this story, it would be gone from my head soon after.  Sweet and sad, yes; but I don't know them.  I can't get wrapped up in every tragedy.

Today, however, I feel like I know little Ollie, the boy in the story.  I am a fan of his page on Facebook.

https://www.facebook.com/OneLittleLifeInspiresEveryone?fref=ts

I have read his mom's personal account of his daily journey.  I have seen the many pictures of what going through chemo means.  I have cried for him and his family.  I am hoping for a miracle, as I know they are.

This is where it gets terrible and wonderful at the same time.  

Facebook has made me hate some people that I thought I loved and love some people that I have never even met.

It has made me realize the kind of person that I want to hang out with, call my family or friend and what kind of person I should aspire to be.

On this wonderful/terrible web I have met Buddy, 

http://reecesrainbow.org/?s=buddy

who lives halfway around the world, but I think of him every day and I am doing my best to make a small difference in his life. 

I have all this endless information in front of me.  Can I use it to fill my days with conspiracy theories and nonsense?  Sure.

Can I get angry at the injustice in the world?  Yes, and I should.

Do I perseverate on it?  Yes.  

But, I think that as much as I get aggravated and sad and sometimes, completely heartbroken, it is worth it, if I can do some good with it.  

Even if I just send some more love into the world, isn't that good?  I won't stop there, though.  I am doing...a little bit every day, but I am doing something.  

I hope my ripples meet Buddy and Ollie and Ethan Saylor and all those that I think about and work to help everyday.  

The same ripples have already washed over me and made me stronger and more determined to fight, to be heard, to stand up, to love, really love those that mean so much to me.

Facebook, with all it's flaws, has made the world closer.  If we can weed out the negative and cultivate the good, what kind of wonderful place will we live in?  

That, my friends, is something to think about.

It's Getting Weird in Here - Amy's Brain; Part One Zillion

What is up with men who feel the need to compare some kind of pain they have had to childbirth?  Are they seriously bothered that a woman might be tougher than them in this arena?  Like they don't have enough power already?   You know, like making more money and holding more elected offices (by a lot);  they also need to win the "pain threshold contest"?  How insecure do you have to be to think like this?  I bet they are not challenging former POW's to a pain contest.  "Oh, bamboo under the nails?  That's nothing.  I had a kidney stone, once."  Please.  Get a life.

Oh, and kidney stone guy?  Guess what?  Women can get those, too!  But, you will never be pregnant.  You will never carry what amounts to a giant parasite in your body for nine months before passing it through the most sensitive part of your body and then breastfeed it for twelve months afterwards.  It will never happen.  

Don't even get me started on mastitis and how it feels like pulling a red hot poker out of your nipple.

Why can't you let women have this ONE and just be thankful that they do?  With all the shit we have to deal with on a monthly basis; couldn't you just be like:  "Wow.  Well done.  Thanks for putting up with that!"?  

http://www.youtube.com/watch?v=Qd1PvK6NEBo

And do me a favor.  If you and your partner decide to procreate, please FOR GODSAKES, do not say "We're pregnant!"  I am just warning you now, that if I hear this come out of your mouth, I will have to punch you in the nads.  Let's see how pregnant you think you feel with that pain.

How this guy ever got laid while being such an obvious douche, I will never know.

Marathon

(this is my condensed marathon story...re-written because I cannot find the file in which the full version is saved.  Sigh...)

My only goal at mile 23 was to not let the street cleaner pass me.  I had heard it for a while, coming up behind me, sucking up and scouring the debris from the Chicago street.  But, like most every goal I had at the start of the race, this one eluded me in a cloud of black smoke and stench.  

And I started crying.  Again.  I had pretty much given up trying not to cry at this point.  I had been crying on and off throughout the race.  First, my tears were of joy and happiness and just being overwhelmed by the sheer size of the mass of humanity surrounding me.  Runners, millions cheering, the theme from "Rocky" blaring...it was too much.   Who doesn't get choked up when they hear "Gonna Fly Now"?  

So, yeah.  I was crying again.  Only, these tears were of disappointment and thirst and hunger and agony.  WHY?!?! Why was I doing this, again?  

Something about bucket lists and wanting to rediscover my inner athlete and oh yeah, lose weight.

What an idiot.

I looked up at the street sweeper as it lumbered past and I saw the driver was gesturing to me.  Sweaty, dirty and humiliated, I was in no mood to be laughed at by some guy in sanitation.  

I looked again, too tired to flip the guy off, but wanting to and I saw it:  Three fingers.  Three miles to go.  Then, a thumbs up and a smile as he rolled past.

I still get emotional thinking about that moment.

He could have laughed.  He could have ignored me.  Instead, he chose to cheer me on, my only fan besides poor Yuyi, who was running behind me, afraid to leave me alone.  

I smiled for the first time in miles and miles.  I reached down and found some previously untapped reserve of determination and picked up the pace.

I finished that race, the 2004 Chicago Marathon, in eight hours, three minutes and 51 seconds.  

I was the last official finisher.  Go ahead, Google it.  

If you don't believe that, here's the article that some douchey writer from the Tribune wrote after he interviewed me by phone.  He stole all my best lines AND called me a "terrified homemaker".  Jerk.

http://articles.chicagotribune.com/2004-10-15/features/0410150059_1_chicago-marathon-finish-race-director-carey-pinkowski

That was not the plan.  Finishing?  Yes.  Last?  No.

It is here where I will say that something like 800 people dropped out of the race or finished after they picked up the carpet with the timer, which was, literally, the second after I crossed.  The guy was actually picking it up when Yuyi and I were approaching.  But, seeing us, he called us over and said "step on it!".  So, we did and there you go.  

But, I finished what I had started six months earlier when I first saw the flier advertising training with the AIDS Marathon team.  I guess that is what matters; sticking to it.  That cheesy ad "Just Do It"?  Yeah.  That's me.  :)

I think it's time to dust off the old running shoes and set a new goal.  

2014 will be the year that I reclaim my badassedness.

You can bet on that.

Frustration

I just got off the call hosted by the NDSC, the NDSS and FRIENDS regarding Ethan Saylor's death.  I was hoping, not really expecting, but hoping that I would come out of it feeling a little bit better, feeling like they really do get it, that I really am heard...but alas, I do not.  

Training?!?!  Really? We are still talking about training?  How much training does it take to be a decent human being?  How much training does it take to recognize Down syndrome?  Anyone with eyeballs that work can usually recognize the features of Down syndrome.  Do we really need police officers to be specifically trained to "deal" with people with differences?  

Ok, maybe to that last part, we do.  It would be very helpful if officers were taught to recognize a few simple signs in ASL.  It would be helpful if officers were trained that people with cognitive challenges may not respond as quickly as a "typical" individuals to their commands.  Yes, I believe that is true.

What I don't believe is true is that these three off duty officers needed more training.  Between them, they had 40+ years experience.  They knew that the face down restraint was dangerous.  They used it anyway.  They heard him cry for his mom.  They killed him anyway.  They didn't listen to his caregiver.  They didn't wait for his mom, who was on her way.  The left him to stop breathing face down on the disgusting movie theater floor.  

This is a homicide.  It has nothing to do with Down syndrome or obesity or whether or not Ethan broke the law at all (which is highly debatable).  It has everything to do with three human beings who have sworn to SERVE AND PROTECT killing an unarmed individual. 

I want to know why.  I want to know what they were thinking.  Why they thought Ethan posed such a threat as to deserve that face down restraint usually reserved for violent criminals.  I want to know why there isn't more outrage.  I want to know why our national groups haven't publicly denounced the officers actions.  I want to know why they haven't plastered every newspaper with a headline that says "Down syndrome is not a cause of death".

Our national groups should not be focused on training.  They should be focused on telling the world that it is UNACCEPTABLE for police officers to kill an unarmed person.  PERIOD!  The authorities want this to go away and blaming it on Down syndrome is one way to do it.  "Oh, if only they had been "trained" to recognize Down syndrome this never would have happened!"  they cry.  BULLSHIT, I say.  

What they aren't saying is that Ethan was an easy target.  What they aren't saying is that they really don't think Ethan deserved the same rights as you and I because he was different and he dared be out in public.  What they aren't saying is that when it comes to understanding and accepting people with disabilities as equals, we are as far away from that today as blacks were in the 50's and 60's.

This is a civil rights issue and until it is recognized and treated as such, we will get nowhere.