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.

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!

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!

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 ; )