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

Unity In The Community...

"United we stand, divided we fall.  Let us not split into factions which must destroy that union upon which our existence hangs..."  Patrick Henry

Now that April is over, I am doing my annual "BIG EXHALE" and reflecting on how I am feeling about autism this year.  It occurred to me this week that I am sort of like a "veteran" now in this whole autism thing. Not because my son is almost nine years old and has been on this journey for seven years.  If we are breaking down time, I spent at least the first three years in a state of numb disbelief, getting through the todays by not thinking about the tomorrows and smoking many packs of cigarettes.  When I did eventually shake it off and put on my big girl pants (which were literally quite big as I was also consuming many cookies with those cigarettes), I focused mainly on my boy - what went on between the walls of our home, and at his school.  I had a hard time reading materials on autism - even the inspirational stuff.  ESPECIALLY the inspirational stuff.  It just pissed me off.  Even though the panties were on, the brain was still lingering over there in the "poor, pitiful me" section of the arena.

I guess it was really just about two years ago that I started to read.  And then I went to town.  I read it all - anything I could find.  I started to realize the true enormity of what is going on here.  I figured out that my Luke is only but a blip on the autism radar.

The result of that research is that at this time, I feel confident and comfortable making the following statement about my child's autism and what I believe to be the cause/reason/why/story of what the hell is going on around here:

I believe that my son's autism is a result of toxic overload, including, but not limited to toxins resulting from the environment, the air we breathe, the products we clean with, the food we eat, the vaccines we inject, the medicines we take, the carpets we walk on, the water we drink.  I believe that it is a man-made affliction, and not a random genetic quirk.  I believe this as a result of research, and not because it's what I WANT or NEED to be true.  

One very important thing I want you to notice in the statement above:

It says MY SON'S autism.  It says this because I do not for one second believe that all of these kids have the same thing.

My belief is that this "spectrum" word that gets thrown around is actually an all-encompassing toxic tundra of illness - autism, ADHD, asthma, allergies, autoimmune diseases...and taking it a step further, I also believe that a large number of cancers are also taking up some space with us here as well.

Yup - I said that.  I don't think they all have the same thing.  I don't mean that they are all "different" or "fall on different parts of the spectrum"...I mean that they should be diagnosed with different things.

See, according to the "professionals", autism is not a medical thing.  Again, those that know me may not realize this because I have called it medical for years now.  But the party line according to "the powers that be" is that autism is a neurological disorder.  This means that any and all bizarre medical side effects are considered to be just that - EFFECTS of the neurological disorder.  Starts with the brain.  Go see a neurologist.  Blood work doesn't matter.  Diet?  We don't need no stinking diets!

But there is much evidence to the contrary.  Evidence that says that it starts with the body, or more specifically, the gut.  And that a damaged gut can lead to a MYRIAD of physical problems, as well as altered neurological behaviors, many of which resemble the typical actions and mannerisms of autism.

What if it's BOTH?  What is there is a condition that we will (for the sake of this discussion) call "typical autism" - a neurological condition with minimal physical side effects, multiple social and communication challenges, sensory issues, etc.  BUT - what if there is ANOTHER condition (hmmmm...let's call it "toxic autism" - again, for the sake of the discussion) - and THIS version starts with the gut - an intestinal system ravaged by toxins in all forms, not able to successfully process the overload...leading to a myriad of physical and neurological effects.

I am not crazy.  This makes sense.  Think about the autism community.

There is a large segment of the autism community that do not want a cure.  In fact, they are horribly offended that one would even refer to autism as a problem to be fixed rather than just a part of who they are. They rally against Autism Speaks and similar groups, with signs reading "You don't SPEAK for us!"

And I get it.  I really do.  I respect that you are an individual, aware of your own challenges, working hard every day to find your place in this world.  I respect your right to live your life and treat your autism as merely an identifiable piece of who you are.  In fact, I applaud you for that.  And you deserve all of the programs, devices, systems and supports available to aid you in fulfilling your potential as a high-functioning individual on the spectrum.

BUT - and stay with me here - that is not my son's life.  My son's life is limited. And difficult.  We do not use the word "blessing" when we speak of autism in our home.  He is non-verbal. He wears diapers. He spends his days running, jumping, stimming...we spend our days watching, corralling, protecting...he will most likely need to be taken care of for the rest of his life. And you want me to just accept that? Not on your life.  

Does he smile? Yes. Does he like to be tickled? Oh yeah. Do I believe he has feelings for us? With all of my heart. Do I value him as a human being and consider myself blessed that he was born? Absolutely.  Do I love him?  With every inch of my heart and soul.

But do I think that his autism is just a challenging little piece of him that we should learn to embrace?

NO. JUST NO.

Why have we not entertained the notion that this spectrum is not really what we think it is?  That all of the various degrees of "autism" may not BE the same thing?  Since "no one knows" why autism is happening in the increased numbers that it is, should we not consider the fact that we have it all wrong?

Think about it - what if the rightfully proud, socially-challenged, high-functioning ASD or Aspie kid does not have the same thing as my child, or the millions of children like him?  It stands to reason that this "group" would require a completely different set of services than someone like my son, don't you think?  And yet here we all are, fighting against each other over what we should be fighting for instead of considering the notion that we may just have it all wrong.

The ridiculous in-fighting within our own community is only serving to delay progress for all of us.  We can't even agree on the basic premise of exactly what it is we all need or want, and this may not even be our own fault.  This needs to change if we ever expect progress of any kind.

In the interest of the greater good, I will continue to support any and all groups, factions, theories, programs and what have you when it comes to autism - because until we know with absolute 100% certainty what the HELL is going on here, NO ONE has the right to discount any part of this discussion.  If that offends the high-functioning segment of our community, that's just too damn bad.  Autism is not just yours.  You do not get to determine what it is and what it isn't just because you have your own voice.  You can decide not to support a specific group if you like, but maybe instead of creating a split within ourselves we can all wake up and realize that it's not low-functioning against high-functioning - it's autism against the world.

We stand together - or we fall apart.  

1 in 68...Are Still Waiting...

WARNING:  Mama is not happy today.  Sarcasm and anger to follow...I am far past the point of gratuitous sugar-coating when it comes to all things autism people...deal with it.

Today the CDC released the latest statistics on autism prevalence in our country.

1 in 68.  ONE out of every SIXTY EIGHT children in this country has an Autism Spectrum Disorder (ASD). This is a 30% increase over the previous statistic of 1 in 88.  Oh, you remember 1 in 88...you know, the report from TWO YEARS AGO.  Yup, you read that right - 30% increase in just two years. 1 in 88 is just SO yesterday!

Here's something you may not be aware of - this study is done every two years on a sampling of children that are eight years old.  Though it is currently the year 2014, this is the 2010 statistic (four years to tally the numbers I guess?) This means that the 1 in 68 statistic applies to children that were born in the year 2002. Twelve years ago.  My son, and all of my other autism mama friends' kids were not even born yet.  Gee, I wonder what the number will be for Luke's year? At this rate, it will be 1 out of 2 for the year my daughter was born! I'm not really joking.

New Jersey is one of the 11 states used in the national analysis.  Ready for this one?

1 in 45 children in New Jersey has an ASD.  1 in 21 boys.

ONE OUT OF EVERY TWENTY ONE BOYS BORN IN THE STATE OF NEW JERSEY IN THE YEAR 2002 IS ON THE AUTISM SPECTRUM.

Yes, I am aware that caps signify yelling.  I AM YELLING PEOPLE.

For those of you that are not grasping the reality of these numbers (or if you just suck at math), let me throw a little comparison out there for you...there are more children with an ASD than are affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome – combined.

COMBINED. As in, all of them together.  The fact that each of these INDIVIDUALLY receives more government funding than autism does is a topic for another (angrier, sarcasmier) blog post.  But here's a little visual on that interesting situation from a few years ago taken from our good friends over at TACA (Talk About Curing Autism)...

And yet, the CDC continues to downplay the statistics.  They refuse to label this as an EPIDEMIC, or give it the national attention it deserves as a PRIORITY to be investigated and FIXED.  Did you know that they gave trampoline injuries a status of "epidemic" based on 1,200 children getting hurt in 1996? Hmmmm...now let's think about that.  Who suffers when a child is hurt on a trampoline? No, BESIDES the child silly!  They don't give a rat's ass about Timmy's busted arm! But you know who DOES pay? Literally?  Home insurance companies.  What? You didn't know that? Oh yes, home insurance companies can deny you coverage if you have a trampoline in your backyard.  I am going to venture a guess that the "epidemic" label helped the insurance companies push that sucker right on through.

You know who else can't be sued? Vaccine manufacturers.  What do I mean?  Well, it's really quite simple. In 1986, the Vaccine Protection Act was passed - hey, that sounds like it would be protecting us from vaccines? What's wrong with that?  Jump back sister...the only thing this act is protecting is the MANUFACTURERS of the vaccines. As of 1986, these "big pharma" hotshots could make anything to be jammed into our kids, and were given indemnification from legal action in any case of a negative reaction, whether it was a rash or death.  And then THIS happened...

Insurance companies...Big Pharma...wait a minute...this sounds like it has something to do with MONEY? Nah, that CAN'T be true!  

My son was diagnosed in the year 2007.  In one of the more twisted ironies of my life, that anniversary falls right around the same time as WORLD AUTISM AWARENESS DAY! (I could not possibly be more aware...trust me).  In the past seven years, I have heard TONS about what does NOT cause autism.  It's NOT the vaccines, it's NOT the environment, it's NOT medications, it's NOT the air in New Jersey (1 in 21 = 3 times the national average...hmmmmm), it's NOT GMOs or PRESERVATIVES in our food...

Can we please STOP talking about what is NOT causing it - and START figuring out what IS causing it?

Check the air, check the food, check the cleaning products, check the water, check the medicines, and YES - CHECK THE VACCINES - check them all - completely and thoroughly and figure out what the hell is going on before we lose another generation of children.  Enough is enough.

I want to finish this post by saying something that I don't normally say.  I don't feel the need to scare people - I have always gone by the assumption that parenting is an individual and personal journey for everyone, and unless someone ASKS me for an opinion on this stuff, I keep the gloom and doom to myself.  Well, I have changed my mind.  I am publicly stating that ALL NEW PARENTS or PARENTS-TO-BE need to be aware that this is happening.  It is scary.  But it is on you to be aware, to do the research, to trust doctors, but to QUESTION them when your gut is telling you to.  To read food labels. To limit your child's intake of acetaminophen, antibiotics or other medications when they are not truly necessary.  Take whatever precautions you can in your home to create a "clean" environment...because they DO NOT KNOW WHY THIS IS HAPPENING.  It could be all of that, it could be none of that, it could be a bizarre combination of several of these things...BUT WE DON'T KNOW.

This is not just a problem for families touched by autism.  This is everyone's problem.  Those that know my son may think that they are off the hook (dodged a bullet so-to-speak?) as he is the ONE in 68 in your world...but every two years that number is going up...and even if your kids are spared...do something about this today that may help other peoples' children...or your future grandchildren...go back to the top and read those stats again...what do you think they will be when your kids are having their own children?

Please get angry.  And then go to this website and share that anger:
Click here to contact our elected officials

For two years our autism community has used the mantra "1 in 88 can't wait..."

Well, now it's 1 in 68...and they are still waiting.

More Than Words...

Yes, I read the letter.  Several times.

I will post it here just for the benefit of those that have not experienced the uneducated wrath of "one pissed off mother"...

This eloquent missive was stuck underneath the door of a family's house in Canada - home to a teenage autistic boy - and big surprise - no signature!

The most shocking thing to me about this letter?  The fact that I do not find it shocking.

Yes, it's abhorrent, offensive, crude, aggressive, ignorant, abusive, repugnant, abominable, callous - I could go on - but why, you ask, am I not shocked?

Because we live in a society where the string of adjectives above describes not only this letter, but a large segment of the people that walk among us.

We live in a society ruled by narcissism, skepticism and egotism.  Common courtesy is out the window. Unwritten rules no longer exist.  And written rules are often ignored.   We live in a world full of confrontation, judgement and litigation.  People are mean. People are selfish.  What's in it for me? Why should I help you? What have you done for me lately?  Kindness is the exception rather than the norm.

Take the news for example.  How they make a HUGE DEAL out of someone doing the "right" thing. We get treated to a "feel-good" story a couple of times a week...usually the result of a Good Samaritan doing what used to be considered normal. Lending a hand. Wait, is there a reward? No? Damn.

Witnessed any accidents or fistfights lately?  Or even extreme weather?  Did you notice all the people standing around with their phones out, taping it and taking pictures like they have a Press Badge but not giving two thoughts to whether or not someone may be in danger.  Pictures first! I'll call 911 right after I get this shot!  

This letter is about so much more than autism.  It is a shining example of the lack of compassion, empathy and general benevolence that has poisoned our world.  Not only against autism, but against any group that is different in any way.  People fear what they do not understand.  Autism clearly fits that bill, but can be easily substituted with a variety of communities that "they" don't consider to be normal.  Color, creed, culture, class...all up for judgment.

I could write a couple of paragraphs that blames the media, the government, rap music, technology, etc.  But let's call a spade a spade here - it's all about the parents.  A baby is not born with the ability to judge, to hate, to crucify, to detest...these are learned behaviors.

Bringing a child into this world comes with a set of responsibilities that many "adults" do not seem to comprehend.  First and foremost, it means that the child and its needs come first.  BEFORE YOU. BEFORE YOUR NEEDS.  You are signing an unwritten agreement to raise a human being - this requires nurturing and love and security.  If you can't get on board with this concept, or you will not be able to handle being SECOND, then don't have children.  It's really that simple.

As the mother of a non-verbal autistic child, I am tested in this capacity beyond the traditional requirements. My son is demanding, exhausting, taxing, challenging - he requires more from me than I ever thought I had to give.  There are days that I hate my life.  Yup, I said it.  And there are days that I see the tiniest glimmer of hope and I remember that my boy teaches me things.  How to be patient, how to appreciate the little things, how to not give a second thought to so much bullshit that used to clutter my brain.  As much as I would not wish this journey on anyone, I will admit that I have evolved into a better human through my daily dealings with autism.

Can the person that wrote this letter say the same?  I think not.

This letter does not make me angry.  It makes me sad.  I feel sorry for the person that wrote this letter.  It must hurt to have that much hate in your heart.  And I feel sorry for her children.  They will most likely grow up in an environment of anger, resentment and judgment instead of nurture, love and security.  And they will suffer for it.  

As will we all.

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