Tag Archives: autism vacation

Tramps and Bums

In what space are you the most real?

Is it among friends?

Among strangers?

When you stare into the mirror?

I found myself – my one true self – out in the Atlantic Ocean.  Not when I looked at my reflection in the water but when I looked into the faces of five amazing, strong and very real women.

We ranged in ages from 36 and up.  All of us mothers, some grandmothers.  Years of life experiences that unfolded at the dinner table each night.  Like velvet petals on a summer rose – each one delicate in its beauty but anchored hardily at the sepal.  Withstanding torrid drought spells and torrential rains, hard times come and gone and come again.

But there were good times and fast stories, too.  “Tramps and Bums!”  Oh, how these women told stories.  We were strangers as we first took our seats at the table, casual introductions as we laid our napkins in our laps as ladies do.  Four days passed.  We excused ourselves and parted ways as lifelong friends.  Only soiled linens abandoned at the table were the wiser. “He took it out!”  I hadn’t laughed so hard or felt so connected to my own being in so many years.

I was witness to dolphins racing freely through the wake of the ship.  I ate alligator.  Have you met me?  I quiver when my SGM stocks our freezer with venison.  I lay in a hammock for hours swinging in the wind, wrapped in a soft robe and feeling the sun keep watch over me.  I ached for my babies but I soaked in quiet tears of relief.  I longed for my husband’s arms to hold me, his lips to welcome mine but I knew it was better this way.  A space to be real.  To remember what real was.

And then I was home.

reentry [ree-en-tree]

noun, plural –tries

  1. an act of reentering.
  2. the return from outer space into the earth’s atmosphere of an earth-orbiting satellite, spacecraft, rocket, or the like.
  3. Law.  the retaking of possession under a right reserved in a prior conveyance.
  4. Also called reentry card.  In Bridge.  a card that will win a trick enabling one to regain the lead previously lost, especially the lead from a particular hand.

I am ready for reentry this time.  Ready to reclaim the real me.

More than a mother.  More than a wife.  More than an advocate.

The real me.

The girl who sang her heart out every chance she had.  In the shower.  In the car.  In front of a thousand people. 

The carefree young woman who drove her Jeep fourteen hours straight from Connecticut to Florida to sleep on the beach because she could.  Three times in one year.

The businesswoman, the protector and the born-again college student.

It was an epiphany for me.  Never again shall so much of the everyday separate me from all of the ingredients that have been folded in over the years to make me the recipe I am.  100% Real Me.

Many thanks to the amazing women I shared my brief reprieve with.  We as mothers and wives who have sacrificed for our families must remain vigilant to never lose our way back to the raw, real individuals we were before –

“Tramps and Bums!”

Cheers,

Rachel

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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.


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!


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