“If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away.” – Henry David Thoreau

Boy.

Good ‘ol Henry sure knew what he was talking about, didn’t he?

If that quote doesn’t perfectly sum up our journey with our special needs son Andrew, then I don’t know what does.

This kid not only walks to a different beat

he IS the drummer, creating his own rhythm each and every day, unaffected that the world may not be listening to the same tune.

Those eyes slay me.

That can be pretty scary for a parent, knowing that your child cannot keep pace with his companions, that he doesn’t always hear the same music.

But then

your eye catches a glimpse of a greeting card in the middle of Trader Joe’s

and you are quickly reminded

that for the most part,

you prefer the sound of your son’s song anyway.

Seriously. Favorite greeting card EVER. Photo courtesy HannaMariah. Card courtesy Trader Joe's.

Have you been reading my Special Needs Column with OC Moms for The Orange County Register? Why the heck not? It runs every Sunday online. My latest piece, Autism advice: When saying nothing is better than saying anything at all, has generated a lot of support within the autism community, so don’t be left behind, go check it out! You can also become a Fan of OC Moms on Facebook; we are a diverse group of writers covering a wide range of topics relating to parenting and hot topics! As always, thank you dear readers for your support!

I got sober on an unexpected evening in June.

I inhaled my last Marlboro light

in the early hours of a September morning

I’ve pledged to be more kind

more present

less selfish

once in March, twice in August, a half -dozen times between Halloween and Thanksgiving

Today I woke up without a hangover

for the sixth New Year’s in a row

(How RAD is that? I used to have one every other day for YEARS; Didn’t KNOW it could be any other way!)

and I believe, more than ever

that real change, the kind that alters our lives in ways we never imagined, the kind that leaves us fully present in a life that finally

feels worth living

comes when we are ready

It comes when we open our hearts

when we quiet our minds

when we admit mistakes but do not dwell on them

when we retire self-destructive thoughts

that lead to self-destructive behaviors

Real change happens

when we commit ourselves to living in a way

that brings peace and inspiration and joy not just to our lives

but to those we meet along the way as well

I get it

I know you want to

lose weight

quit smoking

stop biting your nails

run a marathon

organize your garage

write thank you cards

go to church more

spend less money

help the homeless

and

learn another language

(among other things, right?)

And I can understand the almost cleansing feeling of leaving behind a year that may have left you feeling a little

unfulfilled and unaccomplished

I’ve tried it that way too, trust me

I’ve put entire Years on pedestals

promising grand things

only to fall far from Grace when things didn’t go according to my Plan

So might I suggest that

if you start feeling overwhelmed or like giving up

that you give the Year a break

and you try it my way

Look at each Day, Every 24 Hours

as an opportunity to do something  amazing (like get sober. quit smoking. train for a marathon.)

or ordinary (like organize your garage. spend less money. write a thank you card)

It’s an incredible feeling to know that every time the sun comes up

your potential for progress and change rises right along with it

I’ve seen miraculous things happen in small doses

watched as minutes turned into hours turned into days turned into weeks turned into months turned into

SIX YEARS of ringing in the New Year sober

something that wouldn’t have been possible

if I didn’t live those years

One Day at a Time.

So instead of an entire Year

I urge you to not bite off more than you can chew (especially if like me, you’re trying to lose some weight) and instead focus on

365 DAYS filled with 24 HOURS of opportunity

for change.

Photo courtesy inquisitr.com

He

comes to me

his hands bloodied

covered in raw wounds

but

there are

no tears

He doesn’t know what to do

so

he holds his hands out to me

red

swollen

limp

and i feel a shudder

invade my heart

I kiss them

lingering

wondering

hating

and i

taste the blood

on my lips

on my tongue

taste the anger and the pity

the hopelessness and fear

taste the bitter pill I am forced to swallow again

I don’t want to be inspirational tonight

I don’t want to be brave

I don’t want to compare and contrast and count my blessings

I don’t want to utter those stupid words I always turn to in times like these:

“It’s all we know.”

I imagine for a second

wish for a second

that I had sent out a Christmas card

that showed his bloodied hands

his pull-up peeking out from his size 7 jeans

his anti-seizure meds and supplements

and

his vacant eyes

as he looks towards someplace I am not invited

I imagine for a second

wish for a second

that I had written

F#$% Autism

F#$% THIS

F#$% IT

Instead of

Merry Christmas

Happy New Year

God Bless

I imagine for a second

wish for a second

that he would feel pain, real pain

the kind of pain

that would prevent him from picking and scratching and gouging his hands raw

because maybe if he felt that kind of pain

I would have to feel it a little bit less

I guide him towards the bathroom

wash the blood from his hands

watch it drip into the sink

watch it swirl down the drain

count the new scars

search for a sign of understanding

as I beg him to STOP

Please baby, STOP

and I imagine for a second

wish for a second

that Autism was watching right now

so I could give it the finger

A few months ago, while cleaning out a closet, my sister Aggie stumbled upon a piece of the past, a small shard of our lives as siblings. Folded and tucked inside a small Sanrio Keroppi tin she used to use as a piggy bank, was a note my little sister had written to me in her elementary-school scrawl:

She handed me the note the same afternoon she found it.

“Can you believe this?” she asked, as we both laughed.

“I remember looking for cash and finding this instead. Man, you really got me!”

We giggled as the memory swirled in our collective thoughts.

“I think you still owe me some money, no?” she said, suddenly serious.

“Oh, yeah, hundreds I’m sure! Ha ha ha ha!!”

It took me a few seconds to realize I was the only one laughing.

Her face broke into a wide grin and she slapped my arm.

“Don’t worry about it. We’re good,” she said with a wink.

But we weren’t always.

She could tell I had been drinking just by a split second glance at my eyes.

Even if was just one beer (though, it was never just one beer…….).

Growing up, we fought like typical sisters, but it wasn’t the arguments about missing money or reading our diaries that nearly did us in.

No.

It wasn’t the time I threw a vacuum cleaner towards her, close enough to get her to shut up, far enough away to know I’d miss her, or that her unicorn posters had no business sharing the same wall space as my shrine to Depeche Mode that nearly did us in.

No.

It wasn’t the broken jewelery, the lost headbands, the borrowed and ruined clothes.

No.

We made memories as kids

some good, some bad, but none of them terrible

until

somewhere along the way I tripped up and like I did with everyone else around me,

I chose booze over her and she became another casualty of my selfishness.

She stopped coming to me for advice

and I stopped caring enough to wonder why

She stopped trusting me with secrets that used to make us giggle

and I couldn’t stop long enough to see that she was slipping between the cracks

She couldn’t stop staring into my eyes, searching for signs of sobriety

and I stopped glancing in her direction, so she couldn’t see there weren’t any

We withered beneath the strain and the pain and the broken promises

and after a while

I forgot the sound of her laugh

and she forgot what it was like to have a sisiter

Hold on.

I’m crying too hard to continue.

Okay.

And then, by the Grace of God, after years of turmoil and self-torture

after all of the hangovers

and heartbreak

after all of the mornings I woke up and started each sentence with  “I swear,” and “I promise,” and “I’ll never do it again,”

I clung to a light that so few are able to see

and I haven’t let go since

Then one day

she asked me what I thought of her new shoes

and I whispered that I loved them

The next time, she needed help with a resume

and I sat alongside her as I proofread the story of her professional life

Soon she was making her way towards me

on a regular basis

and I will never forget the feeling of sitting cross legged on her bed

and

giggling for the first time in years

as I looked directly into her eyes

and saw forgiveness, and hope, and love staring right back at me

She moved to NYC two weeks ago

and the day she left

I sat on the bench outside

and sobbed like a baby as she got into the car

I cried for the years I wasted

I cried for the second chance I was given to do it right

I cried for the miles that would now be between us

and then

I thought about how for so many years

we silently passed each other in the halls

ghosts of our former selves

her heart broken

my heart too selfish to give a damn

I thought about all of the times I heard her footsteps approaching

and how

I would hide like a coward behind my locked door

until I was sure she was gone

and through the tears and bubbles of snot

(I know it’s gross, but I’m trying to paint a vivid and honest picture for you here)

I smiled as her car pulled out of the driveway

my arm extended in a proud wave (i’m so proud of you honey)

knowing that

no matter where she plants her beautiful roots (my sister. she is soooo beautiful)

we’ll never be that far apart

again.

“Oh my God. What is that smell?”

“Eww! Where is it coming from?”

“I’m gonna barf!”

“Um, yeah, um, gross………um, yuck…….that’s so, um….ewww.”

I tried my best to join in on the running commentary regarding the foul smell filling up my 3rd grade classroom

a. Because it really did smell.

b. Because the smell was coming from me (well, my backpack actually) and I wanted to throw my disgusted classmates off of my scent (literally). Which was proving to be impossible, as the oxygen-to-funk-ratio approached dangerous levels with each stinky second.

It was all my mom’s fault.

*Sigh*

I had been begging her to stop packing Polish sausage sandwiches in my lunch since the first grade, when I realized I was the only one eating something that didn’t come shrink-wrapped and doused in alarming amounts of high fructose corn syrup and chemical by products.

It just wasn’t fair.

“Mama, why can’t I have a Twinkie for lunch? Or a Capri-sun juice box? Or cheese and crackers?”

“Noh!!” (For some reason, “no” in a slavic accent sounds way more serious) “Dis eez noh gud forrrr yuw!”

Good God. All I wanted was to feel the smooth edges of that little red plastic cheese spreader against my fingers as I covered some crackers in creamy, fake, processed Kraft goodness.

But that little red cheese spreader, much like my futile attempts to fit in with my cooler classmates, was always just beyond my grasp, and in it’s place was a giant, stinky, Polish sausage sandwich. On rye.

Socially, it was pretty much uphill for me for the next decade.

Which was a real bummer because I had gained some serious weight secretly eating the half-eaten Ding Dongs and  Doritos that I managed to salvage before they were cruelly discarded by my ungrateful friends who didn’t know just how good they had it. Not only did their lunches taste good, they didn’t make people recoil in horror and flee in the opposite direction.

It was a childhood marred by the strong stench of two cultures clashing; a mother hell bent on raising her child to know and respect her roots, and a stubborn daughter who just wanted her food to come from a cardboard box, like normal people.

I vowed to never put my own children through the emotional turmoil of having to unwrap a smelly Polish sausage sandwich in front of their classmates and friends and promised to pave their road to social success with more culturally acceptable choices, such as peanut butter and jelly on Wonder Bread.

Boy was I full of crap.

What I didn’t count on as a kid was that I would grow up to not only embrace my Polish roots but that I would turn to them in times of celebration and mourning, that I would someday come to miss the familiar odor of garlic that permeated through my bagged lunches and made my classmates gag, that those sandwiches and all they represented would help to define me as a woman, a wife, and a mom.

Which means my kids are screwed.

But I hope that someday, when they are grown and sitting around our Polish-American dinner table, they’ll bite into a hearty Polish sausage sandwich, surrounded by the sounds and smells of my Motherland, and with a melancholy look in their eyes, they’ll do the same thing I eventually did to my Mama

and thank me.

Photo courtesy H. LORREN AU JR. for The Orange County Register

Andrew is kicking some serious communication ass thanks to his iPad (which, if you recall, he received from a guardian angel by the name of Gary James back in August of this year).

I’ve written a pretty fantabulous article about the whole darn thing for my column with OC Moms for The Orange County Register that I think you ought to check out. There’s a link to a slideshow to the right of the piece as well, showcasing Andrew, his iPad, his awesome therapist Kristen, and some apps that we are currently using.

Don’t miss the amazing video showing Andrew using the iPad and how it’s changed his life (it’s short and sweet and includes an interview with me).

I think you’ll agree that we need to help folks like Gary James get iPads into the hands of EVERY special needs child, teen  and adult across the universe.  Gary also just announced that his non-profit, Very Special People, will be live as of January 1st, 2012; stay tuned to see how you can help fund raising efforts in the next coming weeks and months!

In the meantime, check out the article, share it, love it and comment on it!

Can’t wait to hear what you think!

It’s a nightmare that has played out over and over in my head:

My helpless special needs son being abused at the hands of an evil force preying on the weaknesses of an innocent child just because he’s an easy target.

I mean, who would Andrew tell?

How would we, as his parents ever really know?

It took me a very long time to send him off to school without suffering an anxiety attack each morning; even now, as I watch the school bus disappear around the corner each day, a part of me struggles to remain calm and not take off running after him like a crazy person, possibly thwarting disaster by keeping him locked up and in my field of vision forever.

I know how it sounds.

But can you blame me?

Over the years, we’ve had a few brushes with school staff that have been less than desirable; there was the preschool teacher that just didn’t give a damn and let Andrew play with the backpacks in the classroom closet just to keep him out of her hair, the 2nd grade aides that left him passed out on the cold ground outside mid-February after his Cystic Fibrosis diagnosis, and the bus driver who thought it was perfectly acceptable to take my son on a two hour joy ride due to an impacted schedule without informing us.

And while I’ve never had any reason to suspect any physical, sexual, or verbal abuse, I’ll never forget the feelings of disgust and hurt that came over me the day my son came home on the school bus during his first grade year, his feet and shoes soaked from urine; it was obvious by his wrinkled skin that he had been sitting in his own piss for hours, and the anger that came over me was red, hot, and dangerous.

It was a brutal reminder that trusting anyone outside of our immediate family to provide Andrew with the support he needed and the respect he deserved was risky at best.

And it made me wonder what else was going on when I wasn’t around. I didn’t become paranoid per say; I just vowed to always be aware, proactive, and be willing to go to the ends of the earth to defend my little boy.

Which is exactly what Brian, father of 14-year-old Cheyanne -  who has special needs – did after he says his daughter began to hurt herself to avoid going to school. According to Brian, Cheyanne started to complain about school in the fifth grade and within the next three years her previous love of school was all but gone. After hearing from Cheyanne that she was being bullied by the teachers, Brian made numerous appeals to the school only to be told that his daughter was “lying” and “making up stories.”

Cheyanne’s dad Brian, who is officially a hero of mine, took matters into his own hands and outfitted his daughter with a hidden recording device. What happened next is shocking; it broke his heart, and is sure to break yours too.

Visit msnbc.com for breaking news, world news, and news about the economy

7 Hours you guys.
That’s just 7 hours over four school days worth of evidence that Brian’s device recorded.
Cheyanne was stuck in a classroom with these two heinous women for three years.
Imagine what this child has had to endure at the hands of the very people entrusted with her care.

Kinda makes you wanna vomit a little bit, doesn’t it?

Now I want to be very clear that what I’m about to say next does NOT pertain to the tens of thousands of amazing special needs educators, therapists, classroom aides, and support personnel actively supporting our special needs communities throughout this country. Because for every vile human being like teacher’s aide Kelly Chaffins (who did NOT deserve the dignity of resigning and should have been FIRED and paraded around campus while wearing an “I’m a Giant Asshole” sash) or special education teacher Christie Wilt (who should never be allowed to step foot within a 5 mile radius of a classroom again and be made to run on a treadmill until she sweats the STUPID right out of her), there are hardworking, kind, loving, devoted, dedicated men and women who spend each day working tirelessly on behalf of our amazing children and they deserve our continued support and admiration (Like my son’s classroom aide Joan, whom we call his “school mom.” Seriously, that woman would walk through fire for him and I will forever be indebted to her for giving me months of inner peace knowing she is caring for my child while he is at school).

But.

For the rest of you. For those of you who think you can get away with bullying, torturing, molesting, abusing, and hurting our children just because they cannot speak up or speak out, for those of you who take pleasure in preying on our kids and turning them into your personal physical and emotional punching bags, for those of you who think for one second that a special needs child is somehow less than, or deserving of your misguided and cowardly wrath……

Make no mistake.
You. Are. So. Dumb.

We are out there. Parents like Brian who refuse to accept that there is NOTHING that anyone can do, that our children will forever be victims at the hands of someone stronger, smarter, someone who elbows their way through life and doesn’t think the rules apply to them, someone stupid enough to believe that they will continue to get away with it.

We fill find you
because
We are out there
and we are listening

so make sure the next time you decide to belittle a child
that you clear your throat
lean in a little bit
and speak directly into the microphone.

I’m supposed to come over for a cup of tea
and some low carb shepherd’s pie (apparently there is such a thing)
but I’m worried about later
about how I’ll feel

the afternoons have been tricky lately

“Can I come now?” I ask her over the phone, already in the car and heading in her direction.

“Yep, I’m home and I’m painting!” Her voice is cheerful, energetic; alive.

Minutes later I arrive with coffee in hand, three hours earlier than we had originally planned
but she doesn’t need a lengthy explanation
and I don’t really want to give her one

She’s just glad I came
and
as soon as I walk through the front door
so am I

“So, what do you think?” she asks, as she watches me survey the streaked dining room walls.

“I love it,” I tell her.
And I do.
It has potential.

I ask her for a paint brush
knowing she won’t try to stop me
and I grin at the ease of our relationship

after so many years
it’s not strange that I would end up here before breakfast to help her paint her house

She asks me if I want the roller brush
but
I want to focus on the details.
I feel like I need to focus on the details.
It’s something I’m not very good at
usually
but today I harness all of my stress
my anxiety
my self-defeat

and I detail the shit out of her kitchen

I can’t remember the last time
I stopped fretting long enough
to just focus on the details

but right here
right now
it’s just me and this paint brush
and what seems like a million stubborn nooks and crannies
and I don’t have to think

in fact
i stop thinking altogether
and
I just
DO
until it’s
DONE

It’s a pretty color
soft on the eyes
though I probably wouldn’t have given it a second glance in the store

But here
in her warm house
this warm color
works

“Stop calling it Orange,” I tell her when she marvels at how good “Orange” looks in her entryway. “It’s fancier than Orange. It’s like a Burnt Sienna. It deserves a good name.”

“It’s actually called Butterscotch,” she says.

“Gross. That makes me think of a Butterfinger and your walls look nothing like a Butterfinger. We need to think of something better.”

She’s quiet for a minute.

“How about Terra Cotta?”

I say it silently to myself

Terra Cotta

love the rolling of the rrrrrrrrrr’s
love the staccato of the ttttttttt’s
love the way putting this new color on top of the old one makes me feel

like there’s potential
for progress

“I like it. Terra Cotta. Terra Cotta it is.”

I dip my paint brush into the can
wipe the excess along the rim
and watch
as my hand guides the brush along the narrow space between her sink
my stroke steady and confident
my only concern that I do a good job

I listen as she catches me up on her part of the world
while i gratefully
momentarily
tune out of mine
and together we transform this space
in between fits of giggles and comfortable silence

and I am filled with peace
and potential
and progress

filled to the brim
with my usefulness
and the warmth of this color

picture myself
diving into
a pool filled with the stuff

promise myself more of it in my life

because suddenly i feel alive

suddenly realize

that a color

like

Terra Cotta
is meant
for
the living

His name is Colin

and he’ll melt your heart

(trust me, I’ve experienced it firsthand)

Believe it or not, he's even cuter in person.

He sits two seats away from Andrew

in a classroom filled with few conversations

and even fewer friendships

yet somehow

they managed to find each other

CHOOSE each other,

and form a bond

(Hold on. I need to grab a tissue. Maybe you should grab one too)

Andrew and Colin greeting each other at the park. They were thrilled. Can you tell?

We met at a local park today

for a very long

overdue

playdate

complete with a picnic

No playdate is complete without some yummy snacks!

and a round of

hide and go seek

Andrew "hiding" from Colin

It was hard not to cry every five seconds as I witnessed Colin and Andrew on the playground.

Sure,

there was a ton of redirection

and stimming

and sometimes they were on opposite ends of the playground, absorbed in their own little worlds until we intervened and helped them stay focused.

But there was also a ton of laughter
and squeals
and lots
and lots
of hugs

And Ian.

Oh man.

That kid is something else.

I love seeing him interact with other special needs kids

because he is so accepting

so loving

so helpful

And he was genuinely happy for Andrew and helped the boys play together

Ian had a blast getting to know Andrew's new friend.

Of course

the kids weren’t the only ones having a great time.

One of the best parts of the playdate

was that

I made a new friend too.

Meet Monique, Colin's mom. She is awesome. She's my new friend. She has three boys with autism. Which makes her nothing short of AH-mazing.

We’ve already set a date for next week.

Hot chocolate.

Whipped cream.

Big smiles.

Here’s to friendship

and remembering that

EVERYONE deserves to have a friend and to be a friend.

Friendship comes

in all shapes, sizes, and abilities.

But the end result is always the same:

A warm and fuzzy feeling

that starts in your heart

and leaves you giddy with joy.

So cheers Andrew and Colin; may your friendship continue to grow and blossom

and may this just be the beginning

of something

beautiful.

O.M.G.

Where have I been?

Why have I not experienced this before?

Where can I get one for my house????

Which one is your favorite?

Mikey totally bonded with the rubber chicken. Can you tell?

Also, I tried to take off with the boa, but was busted by the gal who ran the photo booth. Drats!

I’m thinking Christmas card.

No.

Christmas POSTER.