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.  

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...

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 

A Tribute To The Moms I Know & Love...

Back in 2009, I wrote a Facebook "note" that paid tribute to all of the mothers in my life and how they impacted my world...little did I know that so much could change in just 4 years...I have experienced and witnessed things that I never would have imagined...and I managed to pop out a third kid along the way! So here, in 2013, I present this updated version - a tribute to the Moms I know and love...


Mothers...there's nothing else like them...good days, bad days, roller-coaster ups and downs, happy milestones, disappointing setbacks, emotional outbursts, heartbreaking love...no other "job" is more challenging, fascinating, draining, rewarding or important...and no other job has as many "co-workers" to share your joy, feel your pain and keep you sane.

To all of my "co-workers" out there...this one's for you...

TO MY PARTNERS IN PREGNANCY...
We shared our pregnancies and all that comes with them...belly laughs, food issues, swollen cankles, baby names, showers, hopes, fears and dreams...lucky for me that EACH time that I was pregnant it was at the same time as a great bunch of fellow mommies-to-be...would not have been the same without you...Happy Mother's Day!

TO MY "LONG-TIME" FRIENDS...
I have been friends with some of you for over 30 years...who knew back in grade school, high school, college that we would still be together, sharing so many milestones...first loves, bad break-ups, graduations, engagements, weddings, divorces, infertility challenges, pregnancy, miscarriages, good times, bad times...but the most important milestone that we have shared and continue to share is the journey of motherhood...now that my oldest is 14, I love telling him stories about you all and reliving memories that I will always cherish...I thank you all for the impact that you have had and continue to have in my life...and may we all still know and love each other when we become Grandmas some day...Happy Mother's Day!

TO MY "NEWER" FRIENDS...
A wise woman once told me that your best friends will wind up being the ones that you meet through the relationships of your children (it was my mom...).  As with many things, she was correct.  I found a bunch of amazing women to be friends with when my oldest was in 1st grade and first joined flag football.  It feels like a lifetime already...and that's because I literally could not imagine my life without you all in it. Whether I met you behind the school, on the football field, around town or through other friends, I am so glad to know you all and have the honor of calling you my friends...you have been there for me through some of the roughest challenges I have faced...supporting me with just a look, or a joke...or whatever I needed.  Happy Mother's Day!

TO MY FELLOW EIGHTH-GRADE MOMS...
I have said it before and I'll say it again...no matter how good of a "parenting" job we do with our kids, the wrong influence from certain friends can change the path of your child's future in an instant. So I want to thank all of the moms of Evan's classmates and schoolmates at LMS and now SBMS...what a great bunch of kids...a testament to their parents. And as our kids get older, they may grow further apart or closer together...but I will always be grateful that this group was with him in his formative years. So thanks for raising great kids...Happy Mother's Day!

TO THE MOMS THAT FACE UNIQUE CHALLENGES...OTHER THAN AUTISM
I am the mother of a special needs child. It is hard to type that, and even harder to live it every day. But let's face it - kids don't need to be "diagnosed" with something to present their own unique challenges to their mothers. So whether your child is ADD, ADHD, OCD, has social challenges, behavioral issues, learning disabilities or just does not know when to stop pushing your buttons...motherhood can be a bumpy road...but having friends in the passenger seat that understand what you are going through makes the ride a little easier...Happy Mother's Day!

TO MY WARRIOR MOM FRIENDS...
When Luke was first diagnosed way back in 2007, I did not let myself be open to meeting the other autism mommies out there.  As is usually the case with me, I was stubborn, and I decided that I knew best and that I could make it on my own.  Well, WRONG!  None of us can go this road alone.  And as much as I would not wish autism on my worst enemy, the friendships that I have found in you have been the one bright spot on this often-dark road.  You GET it.  You REALLY GET it.  And I would be absolutely lost without you all...Autism may have brought us together, but it's our shared passion and commitment to doing right by our babies that has cemented that initial bond and made you some of the best friends a girl could ask for...Happy Mother's Day!

TO MY SISTER...MY FRIEND...
We were not pals when we were kids.  We were different - we are still different.  But the one thing that has created a bond between us more than anything else is motherhood.  My children are blessed beyond belief to have their Aunt Tace...and as much as we used to watch Evan and Lauren together, we now watch Lauren and Gia do the same things, but in reverse roles...and it's amazing and pure and special and I am so glad that they have both of you in their lives...Happy Mother's Day!

TO THE MOTHER OF THEM ALL...
What's left to say about my mom?  I never felt like I got a lot of "things" from you - my looks, my sarcasm, my pessimism - all Dad...but just when I thought that I had that all figured out...along came autism into my life...and I figured out that what you gave me is strength.  Strength and determination and conviction and passion to fight this nemesis in my life and do what needs to be done.  That's all you.  I get on your case for being overly optimistic, but whether I realize it or not, it's in me too - it may be buried under the surface, but if I didn't have it in there somewhere, I would be a crumpled mess.  You are selfless - you spend your free time doing amazing things for your husband, children, mother, grandchildren, co-workers, friends and neighbors...that is just who you are - you are a woman with a generous heart and soul, and we all take you for granted way too much...so I will state here publicly I feel blessed every day to have you for a mother...Happy Mother's Day!

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.

Ahead Of The Game?

When my teenage son was 8 years old, he once walked into the bathroom with his iPod on his head blaring so loud that I could clearly hear the music myself. The unmistakable notes of Green Day were causing a very perplexed look on his face.

“Mom, do you think that by the time I am old enough to drink beer that Green Day will still be doing concerts?” he asked, seriously enough that I knew that he was truly concerned about this and not just trying to aggravate me (which he is getting amazingly proficient at as he gets older).

“I don’t know, Evan - I guess they might still be around - why do you want to drink beer at a concert?”

“Duh, Mom…grown-ups always drink at concerts and parties!” he walked away, shaking his head in disbelief that I could ask such a ridiculous question.

I try to remember if I had that level of thought process when I was his age. All I can remember about being eight is a rainbow-colored blur of friendship pins and macramé  potholders that I made at summer camp. Did I think about drinking beer? Did I listen to music like Green Day? My earliest memories of my boom box were holding it up to the television on Tuesday nights to tape the opening theme song to Joanie Loves Chachi…static city, but I listened to it over and over again…

I have come to the conclusion that my son has probably always been a good 5-7 years ahead of where I was at his age with regard to wanting to do “grown-up” stuff. How did this happen? Should I blame the media? Society? Am I to blame? Is it a bad thing?

Cut to 5 years later – my daughter started using her index finger to “swipe” the photos on my iPhone at 10 months old.  Yes, that says 10 months old.  My father turned on his digital picture frame to show her a slideshow a few weeks ago and she immediately held up her finger to “swipe” to the next picture…she also swipes pictures that are on the refrigerator…I am positive that this will lead to some sort of major issue as she gets older – just haven’t figured out what it is yet!  Will all of our kids develop carpel tunnel syndrome at 7 years old from too much swiping, typing and tapping??

My main concern with technology and how our kids are growing up in the age of it is that they will not learn how to communicate like regular humans.  They can type 100 (abbreviated, grammar-deficient) words a minute with their fat little thumbs, but will they know how to look someone in the eye and make a personal connection? How will this affect their ability to speak in public?  Their career paths?  Their personal relationships?  Will I go down to my basement in a few years and find my son sitting on one couch and his girlfriend on the other couch, as they frantically type back and forth to each other??? 

On the flip side, this “relationship by text” and “communicate through Facebook status” world we live in has also lead to some bravado that would not be the norm if people actually had to say these things face-to-face.  It’s much easier to type tough than it is to talk it!  Don’t even get me started on the forums and chat rooms where people hide their big mouths behind a fake name…phony and shameful to not put your name on your own words…eliminates your credibility completely.

Of course, the greatest irony in our home is that I am desperately HOPING that my son Luke will be able to communicate with these same technologies…being that he is non-verbal, swiping and tapping screens are the only chances we have right now that he will ever learn to tell us what he is thinking…so I guess we have to take the good in these advances with the bad.

How do we keep our kids from getting lost on the “dark” side of technology?  And for the love of God…how do I keep myself from having to call one of my children to work my television some day?

These are the questions that keep me up at night…well, that and also the fact that I sleep with an iPhone and a Kindle poking me in the sides…

Vacation? All You Never Wanted *

Warning: If you don't have children, you may not relate to this piece. If you are planning to have children, you may want to file it away in your "parent" brain for future reference...

The family vacation. That one week each year where we can leave the cares of the world behind. It's what we wait for, work for, dream about...

Now I am not talking about Disney or a Caribbean island, or a place so different from home that you can actually fool the kids into thinking that you are not their personal slave for the week. Oh no - I am talking the reasonably-priced, old-school family vacation here - the beach bungalow, the RV, the cabin, maybe even a hotel, but nothing too luxurious...the kind of place that comes with a (shudder) kitchen and everything!

Sounds great when you are planning..."Honey, we can save money by eating breakfast and lunch in the room and just going out to dinner!" How did he ever talk me into that one?

Breakfast + Lunch = DISHES (which are not part of ANY vacation in my mind)

Think about it - it's not really a vacation; it's more like a re-location.

You pack up your whole life (and 352 toys) and drive it a few hundred miles away, only to unpack it in a different space. Meals and dishes aside, there are also beds to be made, wet towels to be picked up off the floor - damn, even the kids still need to be bathed when they are on vacation!

Don't bother packing that new book you bought in a delusional state at the drug store before you left - fat chance you'll be opening up that baby!

Somewhere around day 3 you realize that you have essentially paid someone a great deal of money for the privilege of doing your daily chores in a different location - most likely smaller and with less televisions and/or channels.

And there's a good chance that you and the spouse will spend your hours shooting daggers at each other while you silently argue over who is going to chase the 2-year old around the pool for the afternoon - GOOD TIMES!

At the end of the week, all the same stuff (plus several annoying stuffed items and soon-to-be-garbage souvenirs) go back into the car for the long trip home. Time for laundry! Woo Hoo!

My advice to those of you that have not attempted this before - skip vacation for a few years and save your money for Disney - blow it all on the Mouse!

* title borrowed (with a twist) from the Go-Go's - without permission!

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...

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...