The Journey Takes A Turn...

I write this post with a heavy heart but with a renewed sense of purpose as we embark on a new phase of our journey with autism.

After six years, I am saddened to say that Laps For Luke will not be participating in the 2015 Walk Now For Autism Speaks event.

Before I go any further, I want to tell you that there are no words for how appreciative our family is for the love and support we have received from everyone in our life.  I will forever be proud to say that our team raised over $100,000 in the past 6 years - a feat that never would have occurred if not for this love and support - and the various team members that worked tirelessly to raise money.  More important than the money was the awareness we raised along the way...I will forever hold in my heart the vision of red shirts walking for my little boy. We are well aware of our immense blessings.  And this feeling is one that makes this decision so very hard to make.

First and foremost, I am just tired.  It takes a lot of time and energy to be the captain of this team. While it has always made me proud and made me feel like I am doing something important for the autism community, I had to take a long hard look at my own home and family and realize that often times they were coming in second place to fundraising for a few months out of every year.  There was a piece of me that believed that if I just focused on doing good things that the good karma would be returned to me by way of Luke.  But I am sad to tell you that he is not showing the improvements we have hoped for.  He is getting older, and stronger, and more difficult to manage.  Other areas of our life are being affected - time and money are two things we just do not have enough of. It's that simple.  And I am sharing this with all of you because you deserve to know the full story behind this decision.  For the sake of my family, my marriage, my home, my other two kids, and my Luke, I need to put my 100% focus on them for a while and see if I can turn some stuff around.

The Walk has been such an important thing to so many people in my life, and again - being honest, that's part of the reason I stuck around as long as I did. The community involvement, the generosity of friends and family that makes them feel like they are helping me in some way...this all combines to make it one of the most difficult decisions I have ever made. To have strangers stop and knock on our door to offer donations...to have young girls selling lemonade and handing us the proceeds, to have a little girl give us a donation out of her own Communion gifts...there is no way to fully acknowledge the ways that our hearts have been touched.

I do have some fundamental differences with Autism Speaks and what they support and spend money on - I cannot truly say that their beliefs on autism line up with Luke's version of autism and what he needs/will need for the rest of his life.  Regardless of that, I one million percent believe that they are helping large quantities of people in this community - even if their methodologies don't jive with my own, I have never felt that I was raising the money for LUKE - my efforts were for all of the kids affected by autism - low and high functioning and everything in between.  I raised money for the kids that have yet to be born - to find answers where there are none.

2012 - The "Wheelchair" Walk

Having said that, I feel strongly that I need to make a true attempt at the special diet and unconventional therapies that I have seen work for so many others in giving their child a better life.  I am aware that they may not work for Luke - but if there is a chance that his life can be easier for him than it is right now - I have to take that chance. He will be 10 years old this year - he is in diapers, he is nonverbal, and I believe that he lives a lot of his life in physical pain - and it breaks my heart every moment of every day.  Taking this chance requires lots of time, energy and money - I have none of these three right now - but I need to do whatever I can to find all three - and taking a step back from commitments like the Walk (as well as serving on the Walk Committee) is one of those necessities that has to happen to achieve this.

2013 - Too Wet For Team Picture

I want to make it extremely clear that just because we will no longer do the Walk does not mean that I will EVER stop advocating for my boy and the autism community.  There is no end to that.  While I did not choose autism (it chose me), I will continue to embrace it as my passion in terms of seeking out answers, sharing information and staying involved.  While there are those who will say that we have "enough awareness" I do not believe this to be true.  Awareness means different things to different people. When I tell a stranger that my son has autism, and the response is something like "Wow, what is his special talent?" - I know that the awareness is not where it needs to be. This is the biggest challenge in the autism community - the "spectrum" is so vast and spread out - different kids needing different things - it is almost impossible to believe that real progress will ever be made.  But that will not stop me.



So while this part of our journey ends, we go on.  We do so knowing that we have the continued love and support from so many - and there are no words to convey the importance of that.  There are days that are just so hard...we are blessed to have people in our world that offer what they can...a laugh when we need one, a shoulder when we need one, always compassion and never pity.  For this we are eternally grateful.

2014 at MetLife Stadium - The Last Walk

And it is our sincere hope that you will ALL continue to raise awareness for autism and children on the spectrum in whatever ways you can - teaching your kids, sharing stories with your friends and family, sticking up for those who do not have a voice.

Here is a link to a video slideshow that I made following the 2012 Walk...memories that we will hold in our hearts forever.

http://www.kizoa.com/Video-Maker/d4110612kP173035658o1l1/laps-for-luke

With Much Love & Appreciation,
The Calderone Family
Candi, Adam, Evan, Luke & Gia

An Open Letter To Katie Couric...

Katie and her Godson Jay

Dear Katie:

I wish this was a thank you letter.  That after watching yesterday's show (Living With Autism) I would be so moved at its attempts to tackle what living with autism is really like that I would be inclined to write you a big fat thank you letter.  Alas, this is not the case.

Katie - you did us wrong.

Who is us? Us is the OTHER side of autism.  The messy, ugly, uncomfortable side...where so many of us "live" with autism in a place that looks quite different from yesterday's show. It's very crowded over here on this side...

The side where parents are physically drained and mentally exhausted just trying to make it through the days...

The side where the kids remain non-verbal...and in a constant state of frustration...where trying to communicate often leads your child to hysterical tantrums and sometimes violence...

The side where financial struggles are plaguing families in multiple ways - extra expenses related to non-insured treatments and therapies, special diets, extra babysitting - piled on top of parents that have either left their jobs to care for their child, or had to take a lower-paying position in order to be more available to their child...there is never enough money on our side...

The side where the kids are not yet potty-trained beyond the traditional diaper sizes...where you have to go online to find diapers...where you have multiple poop-smearing stories to share at parties...(oh wait - we don't really go to parties on this side)... 

The side where the divorce rate is even higher than the rest of the country...and where even the couples that manage to stay together still live life as two families - where one parent stays home with the child that can't go to the parties and functions and places that just don't work - and the other goes with the other kids...or alone...or just not at all...

The side where your child's "talents" and "gifts" are less musical and artistic and more breaking things, escaping, and remaining in a constant state of motion for more than 10 hours a day... 

The side where siblings also suffer...and have feelings of resentment...and then feel guilty for feeling that resentment...and act out on these feelings in numerous ways that only add to the fun for the parents that are already struggling to get through the days...

The side where people stare...and whisper...and judge...and say the wrong things - sometimes because they are uneducated asshats, but sometimes because they just don't know what else to say...

The side where any interaction with members of the medical community leads to frustration and resistance...because autism is ONLY neurological, they say...where they are only too happy to discuss the importance of immunizations with you, but not as willing to chat about why your child has bizarre bowel movements, strange rashes and a diet that consists of carbs only...

The side where parents spend hours in closed rooms with administrators from school districts in exhausting IEP meetings, begging for services that should be given willingly...where they are cast as troublemakers, just for trying to do right by their own child...

The side where the word spectrum is a dirty word...where that word divides the autism community in a bitter and self-damaging way...where children that fall on opposite ends of said spectrum do not desire or require the same actions...and how the invisible walls between the various locations of this spectrum serve as roadblocks to true progress for all...

The side where you find yourself wondering if and how your child will ever function in the real world...where you question what will happen when you are no longer here...where the future is unknown, frightening, and keeps us awake at night...assuming that our children are not already doing that for us... 

You see Katie, it is a very different reality over here on our side.

So go ahead and show the good stuff...show the Temple Grandins and the Jacob Barnetts and the Chad DenDantos and the musicians and the artists and ALL of the gifted and talented members of our community and let their accomplishments inspire as they should...but you have to show the other side...you can't show the good without the bad...at best, it is irresponsible journalism...at worst, it is a step back for all of us...

Signed,
An Autism Mom Living On The Other Side 

The Day We Figured It Out

April 6, 2007...Good Friday...

Starts out as just another day...final preparations for Easter - do I have enough stuff for my boys' baskets? Do I have something for them to wear on Sunday? Do I have all the stuff for the artichoke pies? What am I wearing? Always the same pre-holiday questions...

At approximately 4:20 pm, I am moving from the hallway to the kitchen, and out of the corner of my eye, I catch Oprah on TV - my eye is caught for 2 reasons - first, because she still has those giant yellow chairs that I always loved (same ones that Tom Cruise did his Crazy-Katie-I'm-In-Love routine on)...second, because behind Oprah is a big screen...on this screen is a list of four things...at the top of this list are the words SIGNS OF AUTISM...

My heart starts to race.  I read them and I read them again.  They describe my son. Perfectly.

I go into the TV room next door where Luke is "playing" - I call his name.  He doesn't look up.  We have already had his ears checked. Twice.  He is 20 months old.

I put quotes around playing because it's actually his version of playing.  This is before I learned all of the dreaded and horrible words that would take over my life in the next few months...appropriate play, purposeful play, meaningful play...I will learn all-too-soon what all these words mean...right now I just think that my son likes to spin shit, jump high and throw stuff.

"Look how fast he can spin that wheel! Wow!"

"He's got some arm - what a throw!"

"He's getting major height on that couch! He's very athletic!"

By the time my son was 19 months, I was convinced that he was going to be in either the MLB, the NFL or the NBA - or maybe he would become the first one ever to do all three!

At 20 months...things changed.

I knew within five minutes of reading those word's behind Oprah's head that my son had autism.

That night, after the boys are in bed, I broach the topic with Adam.  Before I can even get out the words, he looks at me and says "You think Luke is autistic, don't you." - no question mark - he didn't ask it as a question. He said it like a statement.  A statement that he wanted me to refute or laugh at - not one that he wanted me to confirm.  But I did. Confirm it.

"Now what?" he looked at me with tears in his eyes.

And thus began the journey...initial appointment with pediatrician - "I wouldn't worry about it -he's probably just a late talker - let's wait until his 2-year check-up"...the second I walk in my house from that appointment I call the state (sorry Doc) - Early Intervention is what they call it - evaluations scheduled - some are at the hospital, some are at my house..."professionals" spending 15 minutes with my kid and giving an opinion...is that really enough time? I think not.  Watching him "play" in front of them, willing him to put the right damn shape in the correct frigging hole.  Just once. Prove them wrong baby.

"We don't think he has autism - we think it's just a delay with the SIGNS of autism"

Quite possibly the most damaging sentence that a doctor has ever spoken to me...due to that sentence, I spend the entire first year of this journey in semi-denial - oh, I got him all the therapies, and did what the case worker told me to do...but I did not utter the word autism...did not read one book, article or blurb about it. You know why? Because of what that doctor said.  He doesn't have autism.

But he did.  Oh boy, did he ever.  I went into the Early Intervention phase confident that we had "caught it in time" - that getting him so much help at such an early age would nip this shit in the bud.  That's not what happened.

The 6 years since that day have been more heartbreaking than heartwarming...the progress is slow and torturous...the setbacks are devastating.  The questions have no answers.  The problems have no solutions.  There are no experts.  Oh, there are a hell of a lot of people who THINK they are experts.  But they are not.  Is it medical? Is it neurological? Is it environmental? Why is this happening to so many kids? Why boys? Why New Jersey? The questions don't stop.

And every year, on Good Friday, I think back to that day.  Oprah. The yellow couches.

The A-Ha Moment I never wanted.