Monthly Archives: April 2011

The Hangover

The last guests have gone.  Empty bottles litter the house and the yard is a wonderland of crisp white toilet paper dancing in the wind.  My head is pounding and my stomach has left the building – more than once.  The cat is missing and I have no idea how many days have passed since I was last conscious.

I have never had such a hangover.

I’m just so glad it’s over.

I grab the bottle of ibuprofen, pop a few like candy and chase them with a scalding hot cup of coffee sugared beyond recognition.  I schlep to the loo, reluctantly turn to the mirror to look myself in the eye and make yet another empty promise to myself and my body that I will never abuse myself like this again.

It wasn’t the worst event ever – just insanely over the top.  Too much going on at once, kids running wild and the grown ups could barely hear each other over the noise of general confusion.

There were a few fist fights that broke out during the course of the party, but nothing serious and as far as I can recall – no one had to be hospitalized.  Thank God.

I don’t think the cops ever showed up, but then again I wouldn’t likely remember if they did unless I was using my one phone call from jail to have more ibuprofen delivered to my cell.  Do they do that?

Anyways, it looks like today will be a gorgeous day outside so I had better pull myself back together and lose this hangover.  The first full spring day that our little family can spend together enjoying the outdoors and some sunshine.

Don’t worry if you missed this party – you’re invited to the one next year.  It’s called Autism Awareness Month and it’s one hell of a time.

 


Hocus Pocus

  

You know, I don’t have time to listen to people’s emotional white noise. Ever.  Drama?  Forget it.  Don’t clog my day with that crap and for the heavenly sake of that guy named Pete – do yourself an even bigger favor and focus on what truly matters.  I’m so sorry your suit didn’t come back from the cleaners and there were locusts.  That really sucks for you.  Hold your breath while you wait for my Hallmark card in the mail – that will put an end to your misery.

We are at the end of Autism Awareness Month and I am exhausted by the needling, infighting and general lack of cohesion when it comes to autism and the Who, What, Where, When and How it all should be addressed.  Quite frankly, since it all sounds like a Hatfield and McCoy episode of Scooby Doo, I never bothered meddling into what the actual arguments are.  I just know some folks dislike Autism Speaks and I know there are celebrity autism experts that spend all of their energy nay-saying any treatments they don’t agree with whether or not they work for any of our kids.

There are those that consider it wrong to want to ‘fix it’ if God forbid you want to fix autism itself – or find a ‘cure’.  In a life that leaves little room for strategic war-gaming of such things as my choice of idioms, pronouns and prefixes in everyday conversation – it seems the emphasis is better placed on actual solutions rather than semantics.  But that’s just my lowly, humble opinion.

My daughter is a Rock Star.  BOTH of my children are Rock Stars.  They are each unique, loving and amazing rugrats.  Each has challenges, though vastly different from one another.  My 7-year-old son is brilliant and handsome and has the biggest heart.  He also is an elderly man in disguise and still hasn’t caught on to the hype of riding a bicycle.  The Boy needs the tags cut out of all of his clothing, the shower is too loud for his ears and he cries – A LOT.  He very well may need to start counseling soon as his emotions are truly overwhelming at times.

Having 4q Deletion and autism as her own challenges, RM struggles with verbal communication, transitions from one activity to another, rather dislikes the word “No” (unless she is using it) and carefully doles out her affection and emotions in strong, short bursts – occasionally with her hands.

But is it wrong to want so desperately to wave a Magic Wand and make my children’s challenges disappear?

It’s not your job to answer that for me.

Is it wrong to want to ‘fix’ autism?

It’s not your place to decide that for my child.

In this sometimes convoluted country of ours, parents are put on trial for neglecting to seek appropriate medical care for their ill children because their spiritual beliefs forbid scientific intervention.  Yet millions of parents fighting tooth and nail to get help for their children with developmental disorders are being judged by a different jury for wanting to ‘fix’ their child.

Give me that Magic Wand and I’ll tell you what I would do with it.

With one grand, sweeping stroke I would whisk away my children’s pain in an instant – leaving nothing behind but a wispy trail of sparkled fairy dust.  I would not wish the 4q deletion and autism away, or change the path of the journey itself.  I know that challenges are inherent to learning and growing, and are therefore irreplaceable life experiences.  Our struggles shape who we are and make us unique and instantly recognizable by our Maker.  Physical and emotional pain are a natural part of life as well.  But can anyone honestly say they would not take away their child’s stifling pain if that Magic Wand existed?  You bet I would.  And while I was at it, I’d make all the clothing in this world tagless and soft as a baby’s butt.

Listen.  It’s not about the language we use to describe our struggles, or the differences between what works for you or me.  It’s not about whether I say ‘lives with autism’ or ‘is autistic’ because I forgot for one moment to carefully craft my words into politically correct jargon.  Instead, it’s about the commonality of wanting the best for our kids and adults living with special needs as defined by simple sensibility.

Rather than nitpicking sound bites or the actual effectiveness of blue porch lights, let’s get off our asses and change the world.

We can start by providing the very best opportunity for people with developmental disorders to achieve meaningful communication whether by voice, sign or machine. We can teach others what autism is from our own experiences without prejudice or judgment as to which end of the pool your autism treads water.  We can offer that Warrior Mama on the ledge a bit of help rather than staring at the train wreck of her teenager melting down in the grocery store.  We can offer her a night out and a few drinks without autism around – a personal favorite.

We can hold our government and legislators accountable literally and monetarily to protect and provide the right to an appropriate and productive education as children and young adults.  THEN we can continue that support for our adults with autism by accepting nothing less than the absolute right to live in a safe and comforting home whether an individual lives independently, with family or with compassionate professionals.  We can go one step beyond that and further support these individuals by helping them create a dignified, spirited sense of self by providing meaningful employment whenever possible.

Lastly, it’s not about the organization you work with or the title after your name.  You are either invested in making the world a better place for people living with autism or you are not.  This includes those of you not personally affected by autism – wait a minute – no such person exists.  So invest yourself.  Now.

We all have a list of things that we would and would not change if given that Magic Wand.  But my cape never came back from the cleaners and the tsunami of autism is coming whether I want it to or not.

So how about we step out of Fantasy Land and instead of waving bogus wands around we just ‘FIX IT’?

[Editor’s note: Jess over at Diary of a Mom wrote a post that further discusses why different points of view are important, and I encourage you to read her fabulous account of her visit to The White House on behalf of all of us living with autism in our lives – which really means ALL OF US.]


Come May Flowers

 

April is nearing it’s end. The showers of awareness will hopefully bring new blossoms of hope and change. Because April is Autism Awareness Month and the Month of the Military Child, I am reposting the full text of my article that was originally published April 5 on the My Army Reserve Warrior Citizens Blog.

It was my first official April as a fully licensed Autism Awareness pitch woman.  I started with gusto and am now feeling deflated with a case of laryngitis from shouting from the rooftops that my kid and others with autism are IMPORTANT and SPECIAL and deserve to be heard whether they can speak for themselves or not.

I am looking forward to May as a time to renew and regroup – again.  To take just a moment and breathe.  To watch the flowers bloom – and know that I planted a fruitful seed or two that will make life just a little easier for my baby girl and others like her.

I hear the crackling of the line as I picture a string seven-thousand-miles long, reaching far across the world.  On the other end, a tattered paper cup held to my best friend’s ear. 

“Honey, our baby has autism.”

After great pause, my soldier replies — “Tell me what this means.  Please tell me she isn’t going to disappear down the deep, dark hole of autism.” 

We knew what autism was — we just didn’t see it coming.  That phone call to my husband in Afghanistan would mark the beginning of a world war to get our daughter the help she needed. 

“RM” (her alias) was born with 4q Deletion Syndrome resulting in multiple disabilities.  Her first three years were filled with surgeries, durable medical equipment, prayers of desperation and cheers for every ounce of weight she gained and every inch she grew. 

I can tell you — autism is so much more terrifying than open-heart surgery or feeding tubes.  Autism affects EVERYTHING and there is no surgeon or medical device that makes it go away.  

Autism is a complex neurodevelopmental disability.  As a spectrum disorder, challenges vary greatly from one person to another.  It primarily affects communication and social abilities.  Severe sensitivity to noise, lighting, changes in routine are prominent.  A child with autism may have tremendous difficulty with fine motor skills — holding a pencil, toileting and other self-help skills such as buttoning a shirt are extremely challenging.  Feeding difficulties, digestive disorders and a limited variety of food preference also affect the medical health of a child with autism.  My baby girl LOVES her cheese. 

While my husband served his second tour in Afghanistan, I was wildly researching what to do next.  We are an Active Guard Reserve family living within a civilian community in Connecticut.  Our school district has a deplorable reputation; so I quickly hired the best special education attorney in the state at a cost of thousands of dollars.  A luxury most families do not haveSee HERE to learn how my husband got involved. 

I read special education laws.  I studied everything I could about treatments and therapies.  I started looking into TRICARE and what was available through insurance.  I had applied to our state’s Department of Developmental Services when RM was born and found we were still on the wait-list for assistance.  Medicaid gave me the run-around for nearly a year.  I was appalled.  And enraged.  

I wanted to know more.  According to a Department of Defense (DoD) report, one in eighty-eight active duty dependent military children lives with autism.  The epidemic is undeniable.  Of those diagnosed, less than 10% are receiving the appropriate therapies they need to secure a hopeful future.  Frequent changes of duty station, cycling deployments and disruption in family life are all overwhelming obstacles to accessing appropriate therapies.  And every time a military family moves, they drop back down to the bottom of the food chain for services. 

I started a dialogue with my legislators.  The numbers did the talking for me.  Jaws dropped and silence filled the room — 1 in 88.  Our military children who send their mommies and daddies off to war are being left behind — without the treatments PROVEN to help them.  

It is fourteen months later; we finally have access to TRICARE’s ECHO autism services and our school district has conceded to placing our daughter in an appropriate out-of-district program.  Victory. 

Along the way I learned many valuable lessons and met the most incredible people doing great things for our children.  I have renewed faith in our legislators to do the right thing and make TRICARE cover autism benefits as part of standard care for active duty AND retired dependents.  I feel empowered by the knowledge I have gained in this process and I look forward to passing it along to those beginning this journey themselves.   

April is the Month of the Military Child and Autism Awareness Month — we will continue to take every opportunity to share our story with anyone willing to listen.  We will fight back the exhaustion, frustration and tears; so that in the absence of our soldiers, our families will find the courage to keep moving forward.  We will continue to strive for a soft place to land for our kids out in the world — where they may find acceptance, compassion and a future filled with peace.

 


Are We There Yet?

“Wipe Out” by The Beach Boys and The Fat Boys

As I sit in my living room on ‘vacation’ and stim on Doritos and mid-priced Cabernet at exactly 4:54pm, Day Eight, I realize that it just doesn’t get any better than this.  I mean who else has it this good on vacation?  No lines, heat exhaustion or overpriced bottles of water.  I don’t need reservations, bathing suits, passports or matching neon orange tees that say ‘Resident of Stim City.  If you find me wandering alone, please take me to the Security Booth and have them page Mama at the bar’.

 

For some wild reason, it is so much easier to live without a ‘real’ vacation when you have the great excuse of a spouse deployed and a child with special needs.  Though I know some incredible Mamas that actually take their children (including those with autism) on vacation solo, I don’t have balls that big.  This year, I no longer have the MIA spouse excuse come summertime.  For now, we have chosen to be still and continue the quest for ‘settling in’ from a deployment and new beginnings at a new school.  But in August, we will attempt some camping trips and a trip to StoryLand in New Hampshire, and I can assure you – we will have the most detailed exit strategies known to man.  That’s how you roll when you vacation with autism.

Are we there yet?

Nope – here I sit because we’re just not there yet.  I’d like to spin a fantabulous tale about the antics of spring vacation – our trip to the science center, crafts that would make Martha Stewart weep, the million odd little projects I completed around the house, our hiking adventure or the afternoon at the water park that was so much fun my head nearly popped off.

Of course, I’d be lying my ass off.  Because instead on Day Three RM popped hot with a double ear infection and on Day Four I was puking my guts out.  By Day Five, SGM had taken the day off to assist and I fled the scene faster than a Bugatti Veyron (my new fantasymobile).  I had ‘errands’ – quite legitimate ones that grew into anything I could think of to avoid coming back to my vacation with autism.  I returned some things to the store, bought some shoes on sale (always a momentary high), got a call from my sister in distress and sat with her in a parking lot gossiping for an hour and eventually made my way home.  It was the closest I had come to anything resembling a vacation.

Maybe next year we will anticipate spring vacation with a renewed sense of vigor, pack our bags and head somewhere dreamy – somewhere that we actually could make use of sunscreen and little drink umbrellas rather than xanax and shoe therapy.

Cheers!


Throw Mama from the Train

Last weekend I had the most wonderful opportunity for a Mamas’ Night Out in the real big city – New York. 

My date was with another Warrior Mama.  We had never actually met before, but we were sisters and knew each other as much.  She is a military wife, too, and mother to three gorgeous babes – one with autism.  We have a world of things in common.  Little else in life can compare to that kind of kinship.  Deployments and autism are not lifestyles that can be compared to anything else.  Unless you live it – you just don’t know.  So I was thrilled at the chance to spend some time away from the day-to-day with a fellow Warrior Mama who gets it and gets how nice it is to be neither a military wife nor an autism mama for an afternoon – and who also knows how to have a good time and a lot of wine. 

But this post isn’t about my FABULOUS date with a fellow Warrior Mama – though I will get to that at a later time.

This is about the train ride TO the big city.  It’s about our human connection and how our individual journeys through life on this rock are not so individual after all.

Strap yourselves in for this one.

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I was shockingly on time for my appointment with ME for once.  I had gotten up early and enjoyed an unhurried cup of coffee.  I actually enjoyed picking out my outfit and getting dressed with a casual attitude of damn – I’m still cute after all.  I was feeling good.

I kissed my SGM and kiddos goodbye and got in my truck, found my favorite song on the iPod and let ‘er rip.  It was an hour drive to the train, then it would be another two hours on the train.

It was pretty close, but I made it to the station in time to board my train to freedom.  I sat in a group of five face-to-face seats with a mom, her teen daughter, daughter’s bestie and next to me was a young woman from London here on a 3-month internship with an ivy-league university hospital.  Interesting, I thought.  Our train pulled out of the station right on time.  About 500 yards down the track we were stopped and told our engine was not working properly, we would be brought back to the platform to board the next train to Grand Central.  Not the end of the world, I thought, it only put me about 30 minutes behind schedule but I would still make it in time to meet my Mama friend for lunch.

Well.  It’s not like you get up and hold hands with your seatmates on the way to the new train so that you all can continue the conversation.  That would be awkward.  Instead, I boarded the new train and peered around for a seat next to someone that looked relatively showered and ‘normal’.  The seatmate I chose was most definitely showered, and would prove to be nothing short of supernatural.

I’m a fanatical believer in what’s meant to be.  There are such things as simple coincidences, but this train ride would jolt me to the core. 

The woman looked to be about my age.  She had an LL Bean tote packed to the brim and was sipping a coffee.  She had a calm, peaceful look on her face.  She looked oddly familiar, but I have come to realize that those I have never met before who look familiar often do because my soul was expecting them. 

We made the usual small talk.  I felt instantly at ease with her, as if we were old friends.  We exchanged itineraries of our trips to the big city.  Turns out, we were both on a Mama’s Night Out.  Hers would be an overnight trip, and mine just a day trip.  We both sighed as we delighted in the break from our busy lives as mommies.

The conversation turned to how lovely it was to take this break.  I shared that this was my first big solo adventure in a couple of years – that my husband had recently returned home from a deployment and my daughter diagnosed with autism.

Wait for it

“My cousin works for Autism Speaks,” she says.

“Really? – What’s her name?  Maybe I have met her.”

Yes, my friends – I knew this woman’s cousin from various Autism Speaks events.

There’s more.

“So, how did you know your daughter had autism?”  I turned sharply to see her face as the words jumped from her lips and landed on my heart with a sickening thud.  Our delightful conversation had just imploded.  We both would be changed forever with the approaching exchange.

“Well, we likely knew nearly a year before the diagnosis.  I have a nephew with autism.  But I don’t think we were ready to add another diagnosis to the list quite yet.”  I went on to explain RM’s 4q Deletion Syndrome – the feeding tube, open-heart surgery, the nearly constant sleepless nights wondering if she would still be with us in the morning. 

I spoke in general terms, not wanting to overwhelm with med-speak.  She countered with a tale that would leave me feeling like my roller coaster of the previous five years was a day at the spa. 

She was the mother of five.  10-year-old twins, an 8-year-old, 6-year-old and a nearly-three-year-old.  After the twins survived birth at 28 weeks, she would later bring both of her daughters through battles with cancer.  Cancer

I listened intently as she described that this was her year – a year with healthy children and some time to regroup and just be a wife and mom, not a 24/hour nurse.  Wow – I could relate to this.

I told her I felt the same after the first three years caring for RM.  That though there were obvious signs that she had autism – signs I was well-versed in – I just couldn’t take another hit like that yet.  Getting back to her initial question of how I knew, I described the hand-flapping and the toe-walking, and her lack of speech.

A flood of tears poured from this mother’s eyes.  She started to shake.  “My son is turning three and he toe-walks.  He doesn’t have any real speech yet.”

It was a punch to the gut I knew so intimately.  I grabbed this woman and hugged her so tightly as I told her, “your son is still your son, and it will be ok.”

She took a moment to compose herself and wipe away her tears.  I waited patiently. 

After a few silent minutes went by, we chatted some more.  Now we were family.  It’s difficult to explain if you haven’t been there – but there is a connection that is made when one parent to a child with autism finds themselves bumping into another.  This bond – it instantly gives you a safe place to fall, a burst of strength when you need it and comfort in knowing you do not travel this journey alone.

This amazing mother and I talked about the importance of taking time to renew, regroup and respond.  I tried my damndest to provide her with the endorsement of getting that evaluation for her son when she was ready.  That it would be hard, but that she wasn’t alone and it was ok for her to breathe first.

It was a moment that was meant to be.

Our ride was near its end.  The separation was awkward.  I told her she could find me anytime through her cousin if she ever wanted to get together.

She left the platform in one direction, and I in another.

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We are all connected – for better and for worse.  Whatever higher power or force of nature you believe in – know that it is not for naught.

Our journeys are interwoven among a superhighway of life experiences that we share with one another.  We are here for the purpose of being – not having.

I have many things to be grateful for.

I am blessed with open eyes and the opportunity to share in this life with others who ride the same train.  None of us travel alone.  Ever.


Bright Lights, Big City

Right now, my baby girl is at school.  A new school.  A better school.  And I’m so happy for her.

But we all know bittersweet moments – we’ve all been there.  Rarely are there achievements and good times in StimCity without a little twang of ‘ugh’ to go along with them.  It’s the nature of the beast.

RM’s new school is in the city about 15 miles away.  I know that doesn’t sound like much, but it is a huge departure from the 1 mile away from home her preschool was.  So as exciting as this morning was, and as thrilled as I was to know I am sending her on to bigger and better things – my heart ached as she pulled away in the new van, with new driver and monitor – off to the big city.

But there will be bright lights in that big city.  MY Bright Light, for one.  Her boyfriend, Rock Star, is another Bright Light.  And I even know of a couple of the other Bright Lights that go to school there, too.  Then there are the teachers and staff at the school – MORE Bright Lights.  It is a true community in this school.  Like ‘CHEERS’ — where everybody knows your name and it feels like home. 

So yes, she’s off to the Big City – but there couldn’t possibly be a nicer, more friendly small-town feeling when you walk through the doors there. 

That’s where my baby will shine her Bright Light.


When the End is the Beginning

Today is a big day.

A bittersweet day.

RM is about to get on the bus with ‘Miss Joanne’ for the last time.  It will be the last time she goes to her preschool here in town — the last chance to hang out with her ‘typical peers’ there. 

“Buh-bye, Risdofer!” — “Ris” *clap* “dooo” *clap* “ER!” *clap* (Christopher)

Oh yeah, it’s ‘bye-bye’ to the incessant stimmy clapping of every syllable out of her mouth — thanks, Preschool Staff — way to go giving her THAT lovely perseverating gem.

This End is really a bright, new Beginning.

RM starts her new school on Monday — a school built just for her and her peers who need the kind of education that is tailored to their needs.  There will be ABA therapy, potty-training, and more speech therapy than you can imagine.  THEY WILL USE SIGN LANGUAGE WITH RM — BECAUSE THAT IS WHAT SHE USES — not whatever form of communication that is the cheapest and easiest for the district yet is lost on her. 

She will be in a school with a teacher-student ratio of 3:2.  That’s right folks — there are MORE teachers than students at this school.

How much does it cost you ask?

Well, it costs about $150,000 per year.  Yes — that is astronomical.  However, if the money wasn’t spent today, it would cost upwards of $3 million to care for her as she grows up without the help she needs now.  So that seems pretty reasonable to me. 

1 in 110 kids in the US — 1 in 88 military kids in the US.  The ‘tsunami’ of children growing up with autism is coming and it will wipe us out in the long run if we do not intervene NOW.

Ok — back to the bitersweet ‘goodbyes’ today.  I am grateful to RM’s teachers and how they have cared for her in the last two years.  I am sad that we couldn’t be closer because of the bully Sped Director.  I think RM’s teacher runs a tremendous preschool class — it just wasn’t working for RM.

So I will be picking up RM from her last day at preschool this morning, armed with handmade cards and presents for all who took such great care of her — I know they love my baby girl.  Who wouldn’t?


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