Monthly Archives: June 2011

If You Know Me – You Know Why I Fight

If you know me, you should know that I already fought for – and won – the autism treatments MY child needs.

If you know me, you should know that from day one of this journey it has been about the OTHER military families who are STILL FIGHTING.

If you know me, you should know that I am fighting for the Caring for Military Families with Autism Act – because it is simply the right thing to do.

If you know me, you know my soldier has committed his life to serving our country – and you have supported us as a family along the way because you learned a soldier does not serve alone.

If you know me, you know that AUTISM IS HARD – and getting what your child with autism needs is overwhelming and exhausting.

If you know me, you will speak up for my fellow military families without hesitation – the families that serve to protect all of us – and you will contact your Members of Congress and say ‘IT IS TIME’.

IF YOU KNOW ME – YOU KNOW WITHOUT A DOUBT – I WILL MAKE IT MY MISSION TO HARASS YOUR LAZY ASS UNTIL YOU TAKE A FEW MOMENTS ONCE IN A WHILE TO SERVE YOUR COUNTRY, TOO – AND YOU WILL LEND YOUR VOICE TO THE FIGHT.

If you know me, you know I will lift each and every one of you up and praise this effort and toast you for being someone I can call ‘Friend’.

I am begging you on behalf of these families – DO SOMETHING. NOW.

 

Love,

Mrs. Sergeant Major (my friends call me Rach)

[To read the language of H.R. 2288 – Caring for Military Families with Autism Act – you can go HERE.  You will also find links to following the status of this critical legislation, as well as links to contact YOUR Members of Congress and call for their action on behalf of our military children with autism.  Thank you.]

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Rock Star

 

What really defines a Rock Star?

I’m talking REAL. FANS. WAVING. LIGHTERS. ROCK. STARS.

You know who I am referring to here – the likes of Mick Jagger, Steven Tyler, Jon Bon Jovi and Bono – guys that have been consistently rocking it out for millions of fans for decades and never disappoint.  They are a rare breed of superstar that have escaped the need for radical reinvention of themselves – only an updated haircut seems to have been required for this bunch of Rock ‘n’ Rollers.  They just keep putting themselves out there and making magic.  Every time.

I have some experience in the entertainment industry.  I have seen a lot of what goes on backstage and I have to tell you these new reality shows looking to find the next big star are using the wrong criteria.  Sure, they may showcase some extremely talented folks but the chances of finding that singularly incredible Rock Star are slim to none.  Why?  Because the true definition of a Rock Star not only includes talent, but growth from within that moves that person to share their song with the world – not in vain, but with fervor to make a difference in this world.

I need to let you all in on a secret I have been keeping for years now – I just cannot contain it any longer.

I gave birth to a Rock Star nearly eight years ago.

It was pretty clear from the start that there was something really special about this child.  He had some innate ability to insert himself into people’s hearts.  He smiled early – no, it wasn’t gas, I assure you – he just connected in a way few babies do.  There was pure joy aglow in his eyes.  As a toddler, his giggles would travel through every person in the room with a contagiousness I simply had never seen before.  The Boy was an easy-peasy baby.  He slept through the night at seven-weeks-old and would refuel with 15-ounce bottles of formula using speed and precision that rivals NASCAR pit crews.  At the age of three, The Boy was still napping twice a day and growing so fast I could hardly keep him clothed.  I barely saw this child for the first four years as he slept nearly 18 of the 24 hours in a day.

And he was always HAPPY.

In 2006, his baby sister arrived.  The Boy was barely three when RM came home.  RM’s first year is a book in itself, so someday I will reopen the old wounds and share – but today is about The Boy.  From the very beginning of RM – the hospital, surgeries, tubes, endless doctors, piles of medications and the huge markerboard that filled our hallway listing the what/how/when of caring for RM – through it all my Boy was a Rock Star in the making. 

The Boy hasn’t been many places.  Early on, RM’s health kept us away from public playscapes, parks and restaurants.  We stayed home all the time.  We made the best of it.  For much of the time SGM was deployed and I was simply trying to keep us ALIVE – a trip to Chuck E. Cheese was NOT happening.  If we had a box of mac’n’cheese left in the cupboard we were doing good.  I didn’t have respite care for myself or for The Boy so while I spent 24/7 caring for RM and her feeding tube and changing her out of puke every time I turned around – there just wasn’t much left but love. 

Love.

That’s it.  Snuggles at night when I pulled him into bed with me, just the two of us in the quiet.  A mother wrapping her love tightly around her baby boy.  A kiss and an ‘I love you, SnuggleBear’ every time I passed by him, sometimes a dozen an hour.  That’s all I had left to give.

It was enough for my Rock Star.

He was STILL A HAPPY KID.  His beaming smile captivated people’s attention.  He grew fiercely protective of his baby sister AND his Mama.  He helped with any little thing he could.  He never complained that we didn’t go places and he never asked for more than he knew I could give at any time.  He cherished what I had to offer and in kind, he offered all he had to RM.  He would read to her and let her play near him while touching all of his stuff.  He didn’t seem to mind that she would chew all of the tires off of his prized matchbox cars.  Instead, he would cheer her on with every new accomplishment.  He would spend hours teaching her – patiently.  The Boy single-handedly taught his baby sister how to count to Ten.  He would sing to her – Dear God – he would sing so sweetly to her.

This Boy of mine – this amazing creation sent to me was SAVING ME.  His song was lifting me up and his love was speaking to me.  My Rock Star was showing me the way.

Now about to turn eight, he continues to be the most loving big brother to RM who is turning five.  He has overcome many of his own sensory processing issues.  But something even more spectacular is happening.  The Boy is becoming increasingly more sure of himself and his place in this world – at the ripe old age of eight.  He is expressing thoughts outside of his role in this house and having FUN finding his own interests.  He is stepping out of his shell and engaging in a life that more resembles what it should be – giggles, being a goofball, running with ‘the guys’ and having his first crush on a cutie down the street from us. 

So where’s that next new, magical Rock Star?

Right here.

He’s putting himself out there and making magic.  And he’s updated his hair to prove it.

The Boy, June 2011

[I Love Rock ‘n’ Roll by Joan Jett]


My Daddy is a Soldier

This Father’s Day, I honor the soldiers – Daddies who are worlds away from their babies today – longing for little arms wrapped around their neck, squeezy hugs and butterfly kisses.  SGM has never been home on Father’s Day to be celebrated by his kids – but no Daddy has ever been loved so fiercely. 

The following letter was written by SGM on the battlefield in Afghanistan, July, 2010, after the district special ed director reduced the hours of paraprofessional support for RM at her YMCA summer camp – without prior notification, or grounds to do so. [It was originally shared here.]

Thank you, SGM. Your children are so blessed by your love, strength and courage to fight for them on ANY front.

 

Dear [Special Education Director],

My Name is [SGM]. I am the father of [RM] and a taxpayer in the Town of [StimCity].  I am currently deployed to Afghanistan as the Operations Sergeant Major for [an Infantry unit].  You may recognize the unit as [part of the battalion] is stationed in [StimCity] on Main Street and is one of my companies.  Currently, there are 499 soldiers deployed here from Connecticut of which I am responsible for their care and well-being in an extremely hostile environment.

The key to my success in the past 24 years, 3 wars, 7 countries and an untold amount of soldiers is COMMUNICATION.  General Patton once said, “keeping the foot soldier informed is incalculable.”  This holds true in the civilian world and business world of which you, [Special Ed Director], and your co-workers are currently employed.

I find it hard to believe that anyone can actually get up in the morning and look themselves in the mirror and say, “I can’t wait to make someone angry today.”  So, I am thinking that all of what I am being told is a huge breakdown in communication. If this is the case, we are failing not only our children, but ourselves.  These children are our future – no matter how disabled.  These children will grow up and become the Department of Education, Police Officers, Firefighters, and Accountants of our retirement accounts.  I am thinking again, that we should do our best to help them in any way possible.

“Department of Education”… This makes me think that “educated” people work there.  And being such an important department with what I can only imagine is a very large salary budget (above the 600K maybe?) I would assume that [StimCity] would hire qualified personnel.  So, I am going to go out on a limb here and assume that all the people included in this email are educated and are qualified.

So this leads me to my question… Why am I having to write this letter from AFGHANISTAN to find out why a Town Worker that I assist in paying the salary for can’t seem to pull it together and communicate with families in a nice, civilized way?  Why are grown adults having to resort to email and lawyers to discuss the programs that children in a town as large and prosperous as [StimCity] are entitled to?

COMMUNICATION.

Somewhere along the line, we have a communication failure.  In my line of work this is quickly identified as ‘the dead pile up on the battlefield’.  In this instance, the ‘dead’ would be the children and parents that have come to a dead-end with a department established to HELP find them solutions to their issues.  We are failing.

Many people, who have little inside knowledge of how the military works except for what they see on television, do not understand the real way we communicate in the Army.  I very seldom bark orders, yell, nor do I ever belittle, degrade, chastise or berate soldiers in daily duties or on the battlefield.  I give CLEAR orders and GUIDANCE in a voice that establishes trust and understanding.  I lead by example, and in return earn my soldiers’ undying trust, devotion and RESPECT.  They will follow me anywhere as long as I COMMUNICATE to them what we are doing and why.

We call this ‘Task and Purpose’.

With that, we accomplish amazing things.

So, [Special Education Director and Staff], what is YOUR TASK AND PURPOSE?

If you cannot answer this question without looking at your job description then you are wrong.  If you did look at your job description, you will not find the words ‘compassion’, ‘understanding’, ‘helpful’ and ‘committed to what is right’ – Reason: they are expected of everyone regardless of what we do for a living.

To help in this process I will be more than happy to sit and communicate with each and every one of you.  I will be home shortly for 2 weeks, and in a few months I will return for a longer stay.  I will be available morning, noon and night to discuss my daughter and her education, the Department of Education and even some of my experiences in better communication.

I welcome an open dialogue that will promote a FRIENDLY PROBLEM-SOLVING environment between parents and [StimCity Personnel].  Because if we fail this cause – at some point – enough people like [us parents] will get together, pool resources and communicate together to form a plan that removes roadblocks to success.

I look forward to working with all of you to come to an agreeable solution to what is really a very simple problem to fix.

Respectfully,

SGM


Stanley Cup Finals – Hockey is Still Good

[Brass Bonanza by Jack Say]

[Editor’s note: This post was originally published March 14, 2011. I thought it fitting tonight for Game 7 of the Stanley Cup Finals. Enjoy!]

 

 

Some of my fellow Mama Warriors are in need of positive vibes today…

I think RM can stack the pads on this one and make a save in the face of autism…

…because hockey is not only good, in some locales it is spelled H-O-P-E.

~~~~

New Englanders have a long tradition of rooting for underdogs… and standing behind our teams for decades with nothing to show for it but hope and fervor that SOMEDAY a Pennant win will lead to a World Series sweep, or a Playoff rumble result in the beloved Whalers hoisting a Stanley Cup in victory.

Oh, dear New Englanders… Ye of so much FAITH and HOPE…

As we speak, the most diehard of Red Sox fans are gearing up for a spring-training preemptive slaughter of the Yankees tonight in Fort Meyers, Florida. Because the Red Sox have a tradition of starting out in early spring with fury… and often, over the years, losing their steam toward the end of the summer… and simply disappearing among the pack come autumn… you might have given up on the Sox a long time ago…

Let me tell you… you cannot go to a mall -or let’s say, a bar – in New England without spotting a Red Sox Fan. The same could be said (perhaps only slightly smaller of scale) about a Whalers Fan… and that team doesn’t even live here anymore.

For those of you not familiar, Hartford was once home to the NHL Whalers Hockey Team. I won’t go into detail, but many a death-threat were muttered angrily when the team was bought in the late ‘90s and essentially stripped of its hometown fans, colors, and Brass Bonanza… and quietly shipped off to North Carolina. We were left with an AHL team… formerly the Wolfpack, now the CT Whale.

April is Autism Awareness Month, the Month of the Military Child, and the Month of Renewed Hope for all Red Sox fans…

So what about hockey? Diehard Whalers fans that still linger among the New England populace enjoyed a resurgence of Whalermania this season with the Hartford Wolfpack’s makeover in homage to “The Whale”. It has been a renewal of HOPE for hockey fans in Connecticut… maybe this April we should include a “Connecticut Hockey Fans for HOPE” campaign to keep the interest alive…

We went to a CT Whale game on Saturday. ALL of us.

We sort of committed to a night of hockey dedicated to RM. Meaning… even if we didn’t make it through the doors, it was ok (see my Church post). Mom, Dad, and big brother had already had our hockey games this season that we enjoyed. This was RM’s chance.

Maybe she would make it through the noisy parking garage with florescent lighting and odoriffic assaults like urine and stale beer. Perhaps she would survive waiting in the Will Call line to get our tickets. Either way, we had a tiny amount of HOPE, and that was enough to set out on such an adventure in honor of RM.

Not only did RM walk into the arena filled with noise, lights, and crowds of people – without a fuss and without headphones – SHE. LOVED. IT.

This kid went NUTS. GOOD nuts. I mean, REALLY… never before had my husband and I seen anything like it. RM was enthralled with the “skating”…

Oh, crap – what is the damned sign for ‘ice skating’? or ‘hockey’?

Screw it… we’ll improvise with ‘roller-skating’…

My baby girl signed ‘skating’ with enthusiasm parallel to having ice cream for breakfast. This was BIG. HUGE. WOW.

Ok… this can’t last (SGM and I looked at each other)… it just can’t be… She is clapping wildly to the music, bouncing so joyously in her seat that she is CATCHING AIR, People…

I look at the Sergeant Major again, beaming, and I say, “I am completely HIGH right now. Like… on CRACK, I’m so high. Can this really be???”

“Yep! Hockey is GOOD!” he says… beaming just as brightly. RM quickly repeats, “OCK-ee GOO-ud!” She is shaking, she is having such a great time.

Suddenly, the horn blasted the end of the 3rd period.

CT Whale – 4, Sharks – 2… it was over.

Our children – ‘CHILDREN’ as in PLURAL – had enjoyed an event with BOTH Mom and Dad… and popcorn, and soda, and laughter, and fist-pumping. LOTS of fist-pumping.

MORE! I want MORE of THIS!

But April is coming… Whale and Whalers fans will soon hang up their throwback jerseys… and life will resume…

…except in THIS house where HOPE has made a late-season comeback, thrown a stick-check on autism and said, “Not today. Not this time.”

The Stanley Cup’s got nothing on what WE won this past weekend. We won HOPE back for our family’s future.

It was a Gordie Howe Hat Trick. SGM and I scored for our entire family – and kicked a little Autism Ass while we were at it.

Hockey IS good.

So is HOPE.

Boston Red Sox… here we come!

 


What is YOUR Autism?

THIS POST

HAS BECOME A PERMANENT PAGE!

PLEASE LEAVE

‘YOUR AUTISM’ COMMENTS

 ON THE NEW PAGE.

THANK YOU!


Autism Is…

 

Autism Is…

a 47-pound, almost-5-year-old in diapers who thinks the toilet is a playground.

wild nights with no means to quiet, calm or comfort your child. 

locks on everything – everywhere – praying that your child isn’t the next one to disappear in the middle of the night, never to be seen again.

not knowing what your child thinks or feels.

not knowing when or where your child is in pain. 

saying, “I love you, Baby” a thousand times and never hearing it back.

feeling desperate for a hug from your child, knowing that they will push you away every time.

expensive.

isolating – few people understand what this life is like, even fewer stick around to try.

lines of Pixar Cars in front of the cable box – again – in the exact same order – blocking the remote signal and reminding me – again – that autism sucks.

repetitive – it is the same song, the same movie, the same word OVER AND OVER AND OVER AGAIN.

a never-ending fight to get the education your child deserves.

24/7 fight or flight exhaustion – there is always something else waiting to attack – diet, sickness, behavior, education, social anxiety, sensory overload, fear.

devastating to siblings.

never letting your child out of your sight, no matter how old they get.

living in a bubble of constant worry.

still washing, wiping, brushing, bathing, diapering and dressing your kid who is able to ride a tricycle and read 200 words but cannot do these simple self-help tasks.

picking plates and silverware out of the garbage.

cleaning up puke that was never going to make it into the bowl on her lap – because the bowl was in her way.

never having fresh-cut flowers or scented candles on the table.

always putting every pen, pencil, marker, pair of scissors and tape dispenser in a locked drawer because you never know who or what will be drawn on, cut into a million little pieces or taped together permanently.

never finishing a cup of coffee while it is still hot.

sign language, picture schedules and social stories just to go to the store.

always carrying a spare set of clothes, shoes and extra hand-sanitizer because poop happens – and happens again – in the most bizarre places and is somehow irresistible to explore with little hands.

feeling the glare of strangers.

being an advocate, special education expert, dietician, physical therapist, occupational therapist, speech therapist and consultant without a paycheck.

being asked the stupidest questions on earth – “Are you sure it’s autism?”

hearing the absolute worst attempts at lightening the mood – “It’s the age, she’ll outgrow it.”

many inside jokes between you and your spouse that are not all that funny.  “5 – 4 – 3 – 2 – 1…” – the seconds we count out loud when our daughter actually comes to sit on our lap and how long she will stay before she becomes physically uncomfortable being so close.

getting hit and kicked repeatedly by your child because they just cannot tell you what/why they are so mad.

never going on a ‘real’ vacation – one that isn’t prepped with exit-strategies and backup plans and is ultimately destroyed with tantrums and sensory-overload.

a revolving door of babysitters – once in a while you actually get to have one.

date night on the couch with a Top Gear rerun and Ben & Jerry’s and maybe sitting next to your spouse, too.

listening to your fellow Warrior Mamas kicking some serious autism ass – and holding them up when they feel beaten down.

praying – praying ever so sincerely that things will get better – praying every moment that scary things like seizures and self-injurious behaviors will not win – praying for progress, however small.

selling your soul and your story to legislators when all you really want is a nap.

telling your story and putting yourself out there as vulnerable and needing help – when really you just want to fix it and make others understand why.

loving your child so fiercely it hurts – it hurts so very much – and you would do anything and everything in your power to make their life just a little easier.

hard.


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