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