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

A Dream...Reinterpreted

Today is Martin Luther King Jr. Day.  He is remembered for his tireless fight for civil rights and equality, culminating in his untimely death by assassination.  We have all heard the stories and read the quotes over the years attributed to Dr. King.  As with most things in my life, autism brings a fresh perspective on events from the past.  Just as Dr. King dreamed his dream of freedom and equal rights for all, I too have a dream.

Dr. King with his wife and daughter

I dream of a world where the people in the autism community can come together and figure out a way to fight for the same things without cutting each other down.  Where high-functioning and low-functioning can live together on this thing we call a spectrum and both get what they need, when they need it.  Where all parents and educators can work together and figure out that we are stronger united than we are divided. Where we can learn to abandon the black and white and embrace the grey area - respecting the individuals that have their own voice and are not looking for a "cure", while still recognizing that some of their more affected counterparts on the lower end need intervention from the medical community and the government to get to a better place.  

After the years that I have spent reading countless posts, articles, comment threads and chat rooms, I can safely say that this dream is far from being recognized.  There is a disconnect that is so vast, so emotional that it will take much to overcome.  But I refuse to be black and white.  I will follow this journey and embrace all sides...I will share what I have learned with as many as will listen - I will continue to raise funds and serve in a volunteer role in Autism Speaks - haters are going to hate, but I will defend my mission - with knowledge and with passion, not with regurgitated rhetoric and untruths...and I will work tirelessly to see this dream come to fruition. It may not help my boy, but it will help someone's down the line.  And that is reason enough for me.

In looking back at Dr. King's more famous quotes, I am struck by how many of them can be applied to my ongoing autism journey...

“Never succumb to the temptation of bitterness.”
In the first days following Luke's diagnosis, shock was quickly followed by a general numbness and an overwhelming urge to just curl up in a ball and be mad - angry - bitter - all those things - why my boy? Why me? What did I do?  I knew without a doubt that if I gave in to those feelings that there is a good chance I would never have gotten out of that pit of despair.  It still rears it's ugly head once in a while, but I have figured out how to get past it (a good cry, a glass of wine, a chat with a friend...all good remedies...).

“Faith is taking the first step even when you don’t see the whole staircase.”
The happy ending seems so far away sometimes - when I let myself think about my son's future, it's hard to ignore that the picture in my head is not perfect - but taking each step as it comes blurs the edges of that picture and gives me hope that it will change a little bit every day.

“The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.”
I have loved my husband since I was 14 years old.  But NEVER have I loved him more than when in the heat of an autism-induced tit-for-tat spat I said to him "You can go - no one ever judges the father when he leaves" and he looked at me and replied "I would judge myself. And I'm not going anywhere."

“We may have all come on different ships, but we’re in the same boat now.”
Aaaaahhhh my autism moms...love them like sisters...rely on them like crack!  Where would I be without them? I don't want to know.  We are all different - our kids are all living on different parts of the spectrum - and let's face it - we would not be friends without autism - but we each have an oar on this great big boat...STROKE...STROKE...STROKE...

“There comes a time when one must take a position that is neither safe, nor politic, nor popular, but he must take it because conscience tells him it is right.”
Over the past seven years, I have read more information on autism than I thought possible.  And my conclusions don't seem to "mesh" with the mainstream - I have a very clear and specific opinion about autism and why it is happening...and even though I don't feel like my stance is currently on the "publicly accepted" list, it is what it is - I couldn't change it if I tried - I feel it in my heart and in my brain and in my gut.  You don't have to agree with me - I respect all journeys...just make sure you respect back.

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”
One day at a time - the autism mama's mantra - keep moving - keep learning - keep doing - and your child will get there.

"We must accept finite disappointment, but never lose infinite hope.”
Hope.  It's the only word that matters on some days.  What I thought was a bad day a few years ago is now a good day - these disappointments serve to make me stronger and more prepared for battle...and make no mistake, it's a battle.  And I plan to win.

Happy Birthday Dr. King...and thank you for the inspiration...

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...