Happy Birthday To Who?

My baby girl is turning 1 on Sunday...

Ahhh, the kiddie birthday party...I have been to a few hundred of them in the past 15 years or so courtesy of my fairly large family and group of friends. The 1-year old and 2-year old years seem to be the ones that bring on the most celebration.  

There is a running theme throughout these affairs. I'm not talking about Elmo or Dora theme (though I have had my fill of each of those). The theme that I find to be most consistent is that the guest of honor spends all or most of the day in a total and complete state of misery.

Why is this? Well, mainly because a 1-year old or a 2-year old can get a little overwhelmed when faced with 50 or 60 people in one room all staring at them. Mom and dad have probably gone all out - over the top decorations, goody bags, tons of food, and not much energy or patience left to spare once the actual party day arrives.

Inevitably, the day will begin with either an incomplete or nonexistent nap for the birthday child. Though Mom and Dad have taken great pains to schedule the party around the nap time that the child has consistently stuck with for the past two or three years, this will be the day that the little prince or princess will go all independent and change it up on you.

They try to stick to the schedule...carefully planned out times for arrivals, greetings, eating food...but something usually happens to screw up the plan. If there is entertainment hired - say, a visit from the aforementioned Elmo or Dora, there is a good chance that the birthday child (as well as many other young guests) will have a total and complete meltdown when faced with a gigantic, furry version of the sweet little character that they are only used to seeing on the TV screen. So Mom attempts to scare the fear away by jamming the kid in the face of the thing, while Dad is thinking "Cha-ching! That's $300 we'll never get back!"

Who wants cake?

Mom is now officially sweating buckets. Dad is trying to take pictures, but the flash isn't going off or the battery is low, causing "Sweaty Mom" to mouth obscenities at him over the writhing head of the birthday child being restrained in mid-air on top of a frightening character cake that the poor kid wants no part of. One or both Grandmas are reaching for the child, trying to help, causing SM to shoot the daggers at them instead of camera-spastic Dad. Thirty other kids are singing Happy Birthday with their grimy mugs about four inches from the cake, all waiting to blow spittle at exactly the same moment in an effort to "help" the

birthday child.

Even though Mom and Dad have pre-determined that presents will NOT be opened until after the party, there is at least one person (most likely a grandma) that feels that their present is way more important than everyone else's and MUST be opened on public display. This sets off a domino effect, of course, and before you know it, Mom is frantically trying to take mental notes of who gave what because cards are being opened and thrown to the wayside along with the discarded wrappings - thank you cards will be a total

crapshoot.

And it is usually at this exact time, while watching the birthday child look at a piece of ribbon as if it was the most amazing gift of all, that the parents realize that they could have saved a boatload of money and aggravation and amused the kid with some leftover tissue paper from last Christmas.

Let's face it - these parties are more for the grown-ups than they are for the kids...they would be just as easily amused without all of the pomp and circumstance - and at a fraction of the cost!

Humor Has It...

Me: Hey, the new neighbors moved in! We should say hello...
Him:  Why?
Me:  Because it's the neighborly thing to do!  We should get to know them...
Him: Nah, we know enough people...
Me: Heavy sigh...


Sometimes we have a conversation and I wonder how we ever became a couple in the first place. I have always been a social person - I can make a friend alone in a room as long as there is a mirror - my husband? Not so much...


We have been an item since 1985 (27 of our 41 years)...that still freaks me out!  Some days I want to physically harm him...others my love for him is so strong that it hurts.  Sometimes we are almost like friends...others we are teammates united against a common enemy (aka our children).  Why are we still together? In a world where divorce has become more common than a cold, how have we made it this far?  


It's because he makes me laugh.  It's simple, but true.  He can find humor in the most mundane circumstance...when we were in high school he used to nickname condiments - mustard was Mustardo Kinski - I have no idea why! But I would laugh...


He makes up fake song lyrics - we used to call him Rain Man for his uncanny ability to memorize song lyrics after listening to a CD only once or twice (of course, that was before Rain Man meant something different to us entirely...) - but he can take a song and insert a story about something else, and it's hysterical. Movie lines...his brain is stuffed with them!  Comedies, dramas, you name it - he will know the lines - go ahead and quiz him.  The shit he can do with an episode of Dora The Explorer could blow your mind, trust me! 

I tell you these things because I know to the depths of my soul that humor is what has kept us together during the past few years of coming to terms with autism as a part of our life...our ability to laugh at things that are sometimes borderline inappropriate has been a constant dating back to the beginning of our relationship...


I remember when I told Adam that Luke would be taking a bus to school - he was three years old and was going to be attending school about 15 minutes away from our house - he looked at me and said, "Like a yellow bus? A small one?" I nodded yes and I could see what he was thinking without him even saying it - Luke would be riding on what used to be referred to as the Tart Cart when we were kids..."Well, that sure came back to bite me in the ass..." he replied without missing a beat.  I burst out laughing, because in our house, sometimes the alternative to a burst of laughter is a bucket of tears. 


In a house packed with tension, laughter can cut through, providing a release that you don't even know you need until you have it...it interrupts the day-to-day frustrations and keeps us moving forward...

I realize that this may sound a bit twisted...but it works for us.

Me:  Wait until the new neighbors get a load of Luke...
Him:  You mean like when he is jumping naked on the trampoline?
Me:  Or launches his sippy cup over the bushes into their driveway...
Him:  Hey! We may finally get that 8-foot fence across the back yard that we can't afford!
Me: Way to find the bright side, hon.

You just gotta laugh ; )

Autism Doesn't Just Speak - It Yells...

When I started this blog (a whopping 2 days ago), I intended to wow you all with my comedic talents to lure you into being a fan of my work...I wanted to show you the humorous side of autism and how my family gets by with a little help from our jokes...but then I headed into my first Autism Speaks National Volunteer Leadership Conference here in Chicago...well, as my friend Sharon said - it's not really Chicago - it's a 2-day layover since we are at an airport motel at O'Hare - nevertheless, here I am at the end of the first full day of the conference and struggling to find the hilarity in it.

It's very hard to describe the emotional impact of being in a room with over 300 people that are fighting your fight.  We sit and talk to each other, and within 5 minutes, I relate to a person that I know nothing else about other than that she is living with an autistic child.  We have struggled with the same fears, cried the same tears, been angry at the same world that has put us in this position.  There is an instant, unspoken bond that we share, though both of us would have been happier to have never met before...it is autism that brings us together.  There is a silent understanding that we GET each other.

I don't want my blog to become an Autism Speaks commercial, but I have to say that sitting in a ballroom all day SEEING and HEARING where the fundraising dollars are spent is fascinating, reassuring, powerful and impactful.  Since becoming a part of the Autism Speaks community, I have heard negative remarks from several autism parents - in fact, I recently read a few articles that were anti-AS because I wanted to know what their beef was.  The top three specific complaints that were listed included:

1) They don't have any autistic Board members.
2) They act like autism is a disease instead of accepting it as a lifestyle.
3) They spend too much money on research instead of giving it to families.
  
Go back and read those three things again.

Are these people out of their fucking minds?

I can only speak about my son Luke, but suffice it to say that he would not be a positive addition to any Board Of Directors...and he doesn't have much of a lifestyle to speak of unless jumping on a trampoline and breaking shit is now considered a "lifestyle choice"...and too much money on research? For real? I will always support the organization that spends the MOST money on research - I refuse to accept that this will be my son's life and I will spend the rest of my living days raising money and advocating for research, progress and a cure. Period. End of story.

OK - off the soapbox...

I have had the pleasure to get to know some pretty amazing chicks on this journey...not something I was open to in the beginning...but something that I have now come to appreciate as one of the few bright spots in this unchosen life.  A recurring theme of today's conference was the terminology of the people volunteering and raising money for Autism Speaks - the parents of autistic children are DRAFTED - we didn't get a choice (and damn I would have made a hot run for the border if I knew the draft slip was coming!).  People that do not have an autistic child of their own (or close to them) are the CIVILIANS - they read and watch stories about the war, but they are not on the front lines.  There is a whole other group of heroes and heroines we will call the ENLISTED - people that do not have autistic children of their own or even in their extended family - yet volunteer out of the goodness of their heart and their general understanding that autism really does affect us all - if you don't believe that it affects you, go and Google "Autism Costs Of Care" and then shield your eyes from the staggering numbers - all the walks in the world won't pay that bill!


I have had many people tell me that I am "amazing" and "incredible" for raising money and advocating the way that I do on behalf of my son...but please understand that I am his mother - it's my job and I do not have a choice.  But these enlisted soldiers are CHOOSING to be an active part of this fight - they are volunteering to stand next to us on the front lines...what is more amazing than that?


Well, it's my last night here in semi-Chicago - so I am off to savor the large, fluffy bed ALL BY MYSELF and dream happy dreams of beakers, bunsen burners and scientific breakthroughs...back to reality tomorrow as the Cinderella Business Trip Glass Slipper and Royal Coach turns back into flip-flops and a pumpkin...

What's Old Is New Again?

Sitting here at the Rosemont Convention Center in Rosemont, Illinois, exhibiting at a trade show.  Trade shows are amazing displays of human interaction and dynamics - if you have ever been to one, you know what I mean.  If not, trust me when I tell you that it's almost like entering a twilight zone...professional sales people, working the aisles, trying to draw attendees into their booth space - "Come see my wares..." - it's kind of like spending all day at the mall, except there are no real stores - just rows and rows of the annoying kiosk people that you try not to make eye contact with.

Most people come to these shows with a plan - who they want to see, when they will see them...but this doesn't stop the exhibitors from pulling out all the stops to get you into their booth.  Shiny bowls of free candy, pens, trinkets, there is no shame in their game!

There are never any windows...you are purposely cut off from the outside world - it's the casino mentality - keep them shut off from distractions so they spend as much time as possible on the show floor.

I know of what I speak because this is not my first time at the rodeo, as they say.  I am exhibiting at the CHA Show - Craft & Hobby Association, an organization that I worked for from 1992-2005...yes, I used to be the one running around with a walkie-talkie, supervising operations and logistics for this show.  I left CHA in 2005 after the birth of my second son to take advantage of a work-from-home opportunity that would allow me to spend more time with him.  I went back to work in late 2006 at a new company, only to leave 9 months later when we entered the Wonderful World Of Autism when Luke was 20 months old...

Cut to 2012 - out of work at this point for almost 5 years, I get a call from a former co-worker about an opportunity to go BACK to work for my old boss from CHA - she now has her own company, as she left CHA about a year before I did...and back to work I go!

They say the world works in mysterious ways...if you had told me that I would EVER be exhibiting at a show that I put 14 years of blood, sweat and tears into, I would have called you certifiable!  The ultimate irony are these full circle moments in life where you get the opportunity to ask yourself "How did I get here?" and you realize that you don't really know the answer...you just keep moving forward, hoping that someone out there knows what they are doing and is nudging you along the right path.

I ran into a lot of "old friends" this week - people that knew me when...and after speaking with several of them, I can attest that I am not the same Candi that I was back then.  Things that seemed important no longer rate...things that may have bothered me now roll off my back...and never again will a company get my blood, sweat and tears.  Only my family will get that...call it maturity, call it prioritization, call it life experience...whatever you call it, it is a realization that many people do not make until it is too late.  One of my all-time fave quotes is "No one ever said on their death bed that they wished they had spent more time at the office..." - true story!

Popping My Cherry...

My BLOG cherry, that is! For years I have had people urging me to blog...not really sure why it took me so long. Oh wait, fear of failure - now I remember! I am completely paralyzed to give writing a true shot because it is my "dream" and what will I have left if that bubble bursts? But I find myself at a place in life where I don't feel I have much to lose...so I am going to give it the old college try.

So what to blog...what to blog...

Well, they say write what you know.  And there are many people in my life that would say that I have a tendency to think I know everything! There was a time that this was a fairly accurate assessment - I can't lie - but that has all changed.

My life has become twisted up into a boy scout knot of what the fuck.

I guess in some ways it has always been this way.  Clarity and desperation have just forced me to see things differently since "the diagnosis"...

Our son Luke was diagnosed with autism 5 years ago, at 20 months of age.  Not Dustin Hoffman, counting toothpicks, winning me $$$ at blackjack autistic - regular old crappy autistic...non-verbal, high energy, odd behaviors...one big package of fun! How can I joke about my son's autism you may ask?

How can I not?

One day with Luke would probably push most parents to the edge...we just passed the 5-years mark since the diagnosis...5 years made up of chaos, confusion, rage, tears, depression, desperation, exhaustion, judgment, condescension, false hopes, doctors, doctors and more doctors.  And laughs...because if you can't find the humor is things, your only other option is to roll up in a ball and give up.  And I'm just not built that way.

Are we having fun yet?

And thus begins my story...I say begins because the rest is still unwritten (I hate that frigging song.)  And because autism is not my only topic of choice...I am and have been many things in my 41+ years...including, but not limited to:  daughter, granddaughter, sister, cousin, niece, friend, ex-friend, girlfriend, fiancee, wife, mother, working mommy, stay-at-home mommy...

Shit that I have experience with: being fat, dieting, weight loss surgery, losing weight, gaining weight, being the "good girl", marrying the high school sweetheart, small-town-lifer, trade shows, PTA, Italian families, youth sports programs, autism, the autism community, infertility, divorce, relationships, parenting, the wonderful world of special needs...

And my interests and obsessions are vast and brainspace-consuming: pop culture, Facebook (Crackbook), HGTV and The Food Network (psychotic obsession), the Kardashians (call me Kandi), Tori Spelling, General Hospital, random and useless trivia of all types, Dancing With The Stars, Family Guy, Jennifer Weiner, sangria, ipod playlists, lists in general, planning events, taking pictures, hair bows for my daughter, my iPhone...

I have always had a lot to say...and I plan to share! I hope I make you laugh, think and laugh - in that order!  I can promise you one thing...I will always be CandiDLY SPEAKING...