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!