Tag Archives: signs of autism

A Toe-Walking She Will Go

I’m already nearly in tears.  I make mental note to never get to the school early again.  The waiting is killing me.  It’s 2:28pm and the last ten minutes have been pure torture.  Another mom is sitting nearby with her typical daughter.  They are waiting, too.  The mom seems just as anxious.  I have never met her, but I feel the need to cut the tension with some small talk. 

“I still cry every time I pick her up from school.” 

“I know what you mean,” she replies.  “It seems funny.  It’s not like she’s away from me that long but I am always so anxious to see her again.” 

“Me too.”  I turn to look down the hallway for the millionth time.  Nope.  Not yet.  “It’s just such a blessing to know she is so happy here.” 

A truly adorable little blond-haired girl is making her way to the lobby, escorted by one of the dozens of truly adorable young ladies that teach here.  Mom and sister perk up immediately and the little girl having seen her mama starts squawking sweetly and flapping with excitement.  Mom eases down to her knees and opens her arms widely – her baby nestles in deep and Mom is clearly melting to have her baby back.  Mom asks little one about her day at school but the little one is unable to answer with words so instead her body language does the talking for her.  She is truly happy to see her mother. 

I am now bursting at the seams with anticipation of getting my hands on my RM. 

Buses have shown up and other students are making their way with their escorts to the front door.  One by one.  …Autism is one word, but there is no one autism…  Each of the children ranging in age from 3 to 13 have their own signature style of exiting the building.  Some are squawkers, some are flappers, some are just quiet and have the most peaceful looks on their faces.  Regardless of the way they work it down the autism runway – they are all clearly members of The Club. 

Now you might think I am an idiot, or just plainly a jackass – but I don’t view my daughter as a Club Member.  Maybe it is because of all she has already been through medically just to be here.  Or maybe it is just that I think she is the freaking most fabulous creature ever.  Yes.  I meant to word it that way.  Freaking.  Most.  Fabulous. Creature. Ever.  I really do not know why it is so hard for me to look at my little girl as autistic. 

But here she comes.  In all her glory she is making her way down that runway singing her heart out with lyrics no one is the wiser to and bouncing so joyously on those toes with every step.  She is happy.  HAPPY.  I don’t know how I managed to pop out two of the most cheerful, positive rugrats on the planet – but apparently I did.  And I do believe that nothing could change that about them.  Not even autism. 

I slip off my chair as she sees me and I throw my arms out wide.  She runs to me screeching with excitement and smiling so hard I wonder how she can see where she is going with those chubby cheeks pushing up at her now squinty eyes.  She throws herself into me hard and I squeeze her so tight perhaps I cause her to lose a breath.  But no matter – we are both so excited to be reunited once again. 

I stand up and she takes my hand as we walk to the car.  She is bouncing on clouds every step of the way.   As it should be.   Who am I to judge my daughter by her disabilities rather than her happiness?   

It may have a name – autism – but it doesn’t have anything on my bouncy, flappy, beautiful girl.  She is my daily gift to remind me that we are all unique by design.  Pure and simple.  We are all graceful in our own way.  Whether we sashay, roll, stumble or toe-walk our way down that runway.

A toe-walking she will go.  A toe-walking she will go.

She is mine.  Fashionably bouncy and ALL. MINE.

 

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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.


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