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...

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 

The Original Nemesis...Just Weighting Around...

OK - here goes - the blog I don't want to write. It's a tough one.  But I named it CandiDLY SPEAKING, so I guess it's part of the deal.

Those of you that know me probably already know that in addition to my main nemesis (autism), I also have an old foe that continues to torture me today as it has for most of the past 42 1/2 years.

It's not as easy for me to write about weight as it is about autism.  I guess that's because regardless of how I have come to terms with my limitations when it comes to eating the right way and taking proper care of my body, I still feel immense guilt that I can't get this shit under control.  
I have never been the stereotypical fat person.  I have always been blessed with amazing, true girlfriends - since first grade! I had my first kiss in 1st grade...and had regular boyfriends since 5th.  I was, I would like to think, somewhat of a leader.  I ran clubs, organized stuff, was elected President of my class and my sorority in high school ...was even chosen as Most Likely To Succeed by my senior class! Hell, I married the captain of the football team people.  Pretty impressive stuff for a fat chick, just saying!

But the weight was always there - taunting me from the inside.  I wish that I could tell you that it was not an impediment, that having all of this normalcy made it no big deal to be bigger than everyone else.  But that would be a lie.

Because in my safe little bubble of Saddle Brook, life was beautiful.  Those that knew me never treated me differently.  I was just Candi.

Those that didn't know me or care about me...different story.

The bully up the street that thought it was funny to call me Fat Rat.  The kid two blocks over that asked me if my mother named me Candi because I ate a lot of candy.  The cheerleading coach that told me I was too fat to be a cheerleader and put me on a mandatory diet - I had to be weighed by the nurse every Friday, and if I didn't lose weight that week, I couldn't cheer at the game that weekend.  The next summer she told me not to try out for the squad ("I will not have a fat cheerleader") and offered me the mascot costume - Malcolm The F'ing Falcon - I shit you not.  I didn't share that one with my parents until I was in my thirties.

I was only 9 years old the first time I went to a Weight Watchers meeting.  Thus began a long and varied list of attempts to get this shit under control.  Eleanor's Way, Nutri-System, Jenny Craig, the "Oprah" Liquid Diet, 7 Days of This, 4 Days of That, Atkins, Slim-Fast...do it for the Coronation Ball, do it for graduation, do it for prom, do it for your wedding...up and down, down and up...

In 1997, I took diet pills (uppers - let's call them what they were) for 9 months straight - I was cleaning closets in the middle of the night and smoking 2 packs a day, but I lost 80 pounds that year.  Why the success? Because I wanted to get pregnant...and I did, fairly quickly - up, up, up, up, up...

Cut to 2003...I wanted another baby, but my weight had skyrocketed...so I had gastric bypass surgery.  Extreme, yes.  But please understand that when it gets that bad, everything is relative.  "Aren't you afraid of having such a risky surgery?" No, actually, I am afraid that I am going to die at a young age and leave my kid without a mother.

I lost 110 pounds - life was good for a while!  Got pregnant with Baby #2, only gained about 20 pounds...not bad...until autism came along...and the picking began.  Home for 5 years, here come the poor eating habits - no meals, just snacks...pick, pick, pick, pick...

2012...broken ankle...completely sedentary on the couch...up, up, up...starving all the time - this is a new development! That hasn't happened since before the bypass - why am I starving? Go to the doctor - tests - the connection between your pouch and your intestine has loosened and food is not staying in your stomach for more than 5 minutes.  Well, that explains that.

Here I am again.  How did this happen?  

So, tomorrow, 10 years later, I go in for a lap-band.  Yup, TWO weight loss surgeries in one lifetime.

I happen to believe that just as money can't buy you happiness (I don't really believe that, but let's just say that it's true for argument's sake...), skinny can not do the job either.  Miserable people will be miserable no matter what the hell they weigh.  I could lose 100 pounds in the next year from this procedure...but would it make me happy? No.  It will hopefully make me healthier, definitely make me more comfortable, probably give me more energy...and I have a new motivation for making it work this time around.  I have an autistic son.  A son who may never be able to live on his own...which means that I need to do whatever possible to stick around for quite some time.

Some will say (or think, but NOT say) that Weight Loss Surgery is the easy way out.  I have two answers for this.  First, I can attest to the fact that it is not.  It is a tool, and used correctly, it can do amazing things.  But if you abuse it, and don't deal with the demons that are the root cause of your weight issues, it is a useless tool.  Second, you know what?  I am great at a lot of things.  But I suck at controlling my weight.  So if you want to call it easy, I am 100% fine with that.  I got enough shit that's hard in my world - I'll take something easy, thank you very much.

So wish me luck - here's hoping you'll be seeing less of me starting tomorrow...