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...

Dedicated To The Ones I Love...Permanently.

Guess what? I got a tattoo last night.

To many, this will be shocking.  I am a girl that speaks my mind, and in the past, I have spoken "against" tattoos - I mean, to each his or her own, but not for me.  Just never been a fan.  Could never lose that visual of what it will look like 30, 40, 50 years down the road.  And let's be honest, I do not possess the body beautiful...there was a time when I used to think "well, maybe if I ever achieve that rocking body - THEN I will think about it"...

So what changed?  Well, I guess if you were to ask me that question, my answer would be a resounding "EVERYTHING."  What hasn't changed? What's black is now white, what's hot is now cold, what's up is now down.  Autism has flipped our world on its ass, and kicked us in the shins just for good measure.  My Type A and OCD tendencies have been damaged beyond repair...oh, I still think that way - I just do not have the time, energy or money to live that way anymore.

I have learned to let things go.  I do not write as many lists as I used to.  I take it one day at a time. I have less food in the refrigerator and more dust on the mantel - and guess what? We still wake up every morning and get through the day.

Don't get me wrong - this isn't a whole "stop and smell the roses" lecture - this is just our reality. Our days are hard - full of challenges we never expected to have to deal with.  But it is what it is - one of my favorite quotes has always been "Life is what happens when you're busy making plans." I know now that plans go awry...we can't predict what will come next in this crazy thing called life...we just have to find a way to change ourselves to be able to handle what comes down the pike.

So what the hell does any of this have to do with a tattoo???

Well, being a reformed (sorta) Type A/OCD/Planner Girl has lead me to think that maybe I need to be more impulsive once in a while.  When faced with the opportunity to do this yesterday, my first instinct was to kibosh it immediately - and then I started thinking about all of my autism mama friends that have personal "tributes" to the cause inked on their bodies - and for some reason, the whole idea of making a PERMANENT statement like that seemed appealing...what better way to truly commit yourself to a cause that you are passionate about? I raise buckets of money...I talk about autism when people ask questions...I am in this thing for the long haul, like it or not!

While it is autism that lead me to this little personal epiphany regarding body art, this doesn't change the fact that I have 3 kids...all of them sharing space in my world. And let's not forget my husband...as of this November, we have been "together" for 28 years...I guess that deserves some sort of symbolic recognition?

So how to address "the cause" and yet still make it about all of us?

Ta-Daaaaa (as Gia would say)...here it is - the four pieces of my heart - connected to me, and to their father as the middle piece - the colors represent their birthstones - Adam (sapphire), Evan (topaz), Luke (peridot) and Gia (ruby)...artistic props to a genius tattoo artist because if you saw my original rendering...let's just say that art is not in my repertoire!

Yes, I got a tattoo last night.  I did something impulsive that was outside my normal comfort zone. I did not over-analyze it or write a list of pros and cons about it, or research its prophetic meanings on Google...I just went with my heart.