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.

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!