The Incredibly True Story of My Daughter with Autism Conquering Costa Rica   3 comments

The Incredibly True Story of My Daughter with Autism Conquering Costa Rica

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                        “Started from the bottom now we’re here”

-Drake

My daughter Skylar often communicates through song lyrics.  It’s one of the more unique traits of her autism.  That’s why I should have suspected early last March that her constant playing of “Started From the Bottom” by Drake (clean version) had much deeper meaning for her than simply liking the song: her fifteen month descent had spiraled to the bottom and she knew it.  The problem with her realization was that we were scheduled to go on a dream vacation to Costa Rica at the end of the month.

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Costa Rica’s lush scenery was a stark, welcome contrast to dismal late-fall New England

Her free fall was never more apparent than one frigid day after school when she absurdly jumped into my arms in fear of a menacing Chihuahua another parent had brought along.  Like many of Skylar’s other recent extreme overreactions, her new found terror of dogs wasn’t so much about the dogs (we have two whom she adores) but life itself: everything had become an ordeal for her.  As I struggled to carry my screaming, flailing third grader on the quarter mile walk to my car on an icy sidewalk, I figured it couldn’t get much worse for her and us.  I was wrong.  The true bottom came the next day when Skylar viciously assaulted her little sister Alyssa—the one person to whom she’d always been gentle.  Who was this violent, screaming mess of a little girl and what had she done with my unquestionably-odd-but happy-go-lucky Skylar with the infectious laugh, zest for life, and ability to do and enjoy anything and everything the average neurotypical child could?  This new Skylar was ripping my family apart. 

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Alyssa both forgives and comforts Skylar after her big sister’s 3/13 attack

I was desperate. I’d actually quit my day job months prior in a last-ditch attempt to get Skylar back on track, as I’d always been a stabilizing presence for her.  It didn’t work.  As a matter of a fact, nothing we tried worked.  Things were so bad my wife Jen and I discussed the feasibility of living separately and essentially taking shifts staying with Skylar, both to shield Alyssa and provide a natural break for each of us.  A trip to Costa Rica was the very last thing on our minds.

Monkey sighting in Costa Rica are plentiful…even right outside our window

There was no imaginable way we could go.  Skylar couldn’t handle the adversity presented by seeing a Chihuahua: exactly how was an epic trip to Central America going to work?   Eating the money we’d spent seemed a far more viable option, especially since we were going with good friends of ours.  They deserved better than to have their vacation ruined by Skylar and our inability to help her, especially when they’d worked so diligently to get their own son with autism to the point of being able to enjoy such a trip. But they wouldn’t hear of it.  If we weren’t going, neither were they.

Yet another breathtaking sunset

The generous man (himself an autism parent) who’d donated the Costa Rican house to the silent auction we’d won wouldn’t hear of it, either. He suggested we postpone the trip until December, even though he undoubtedly lost money by doing so.  While December was nine months away, Jen and my confidence in getting the old Skylar back was so low it may as well have been nine seconds.  We were still inclined to bow out but the compassion and faith of our fellow autism parents sparked us to give it a shot.  We figured we owed it to them. 

 

The view from outside the house we stayed in

We had lots of work to do if Skylar was to be ready for Costa Rica.  We made changes to her programming and went back to basics with some behavioral interventions, ignoring the more sophisticated aspects of her plan that clearly weren’t working.  We saw some improvement over the next several months but still nothing resembling our old, jovial daughter.  The assaults largely went away but the meltdowns remained, as did the sense she was living in a world she hated too much of the time.  Then again, at least we’d risen above the bottom—or had we?  Two weeks prior to leaving, Skylar had another meltdown outside of school due to the diabolical presence of a beagle minding his own business.  The trip was doomed: the bottom to which Skylar referred was obviously going to be Costa Rica.  Worst of all, our friends were going to pay the price for their kindness by being dragged down with us.  But there was no turning back.

 

One of Costa Rica’s many beautiful beaches

The flight from New York to Ft. Lauderdale to Costa Rica figured to be awful for Skylar and it was. She spent the first leg screaming about her ears popping, though she did pleasantly surprise us by waiting patiently while the plane disembarked. When she again pleasantly surprised us by remaining peaceful on the second leg, we began to feel optimistic the Real Skylar was returning…until she melted down after noticing the one-hour time difference on her Mom’s phone. The meltdown intensified while she waited for people to disembark the airplane and continued for the next several hours, including during the three-hour van ride to the house. Seriously, a time differential could be that upsetting? No. It was just symbolic of the fact that, once again, life itself was just too much for Skylar. When she yet again melted down at bedtime after irrationally convincing herself we weren’t on vacation but had, in fact, moved, I started looking at flights back home for the two of us. I also began to work towards accepting the fact this new version of Skylar was the real one.

 

Freaky-looking plant at Manuel Antonio National Park

The old Skylar would have loved the first three days of ourtrip, as our itinerary included the beach, Manuel Antonio National Park, and a trek to a private waterfall. The new Skylar, on the other hand, did not. She remained in a near-panic at all times, stopping her tears and yelling only to obsess about the exact minute everything would end and demanding time updates. Similar to the months following her March low-point, she wasn’t completely unmanageable but she wasn’t having much fun, either. It was both heartbreaking and frustrating. Even Alyssa—who generally feels her big sister can do no wrong—lost her cool and yelled at Skylar to stop. But she couldn’t. Life was just too much to bear.

 

Skylar with her friend Colyn and Alyssa

Compounding Skylar’s struggles was the fact Costa Rica has dogs—and lots of them. They roam the streets, beaches, and even restaurants. These dogs, while friendly, also displayed the uncanny gift of showing up just as Skylar calmed down, sending her into a tizzy again. As day four began, I continued to look at early flights back for me and her but, as the day progressed, I also took note of something: she was hardly obsessing about time. She also wasn’t complaining and crying as much. She even started to hang out a bit with her sister and the other two kids on the trip, Colyn and Alexa, instead of isolating herself. It wasn’t the old Skylar but it was it was a step in the right direction. That evening, we went out with the other parents, leaving the kids with the dutiful housekeeper Jorge and a babysitter named Rosa, both of whom spoke very limited English. Jen and I were well aware of how dumb this was but we were fried and needed the break. We fully expected the worst…only to come home to find Skylar chilling in Rosa’s arms. Forget progress; quantum leaps were suddenly occurring.

      Colyn, Alexa, Skylar, and Alyssa having a blast in the pool

The next few days featured more quantum leaps. Skylar was laughing, smiling, joking, and playing much of the time, just like she used toand just like any other kid.  All that held her back were the ever-present, damn dogs that constantly appeared out of nowhere to frighten her. One afternoon, she was eating lunch poolside at a hotel when a small, adorable mutt innocently approached. Predictably, she began to yell and jumped into my arms when it hit me: time for tough love. Finally, she was ready.

 

 The experience of being so close to and even under this waterfall was one we’ll never forget

Rather than hugging and shielding Skylar until the dog went away, I eased her back into her chair and held her there, repeating “It’s okay, Skylar. Dogs won’t hurt you,” over and over as she yelled.  When I got tired of doing this, her Mom took over.  We didn’t convince her she was safe but she did manage to stay in her seat with some assistance whenever the dog again approached throughout the rest of the afternoon.

 

Skylar makes a new friend at a playground in downtown Quepos

The dog factor lessened from thereon. Skylar was still obviously uncomfortable in their presence and let out the occasional half-hearted yelp when one came around but her reactions were comparatively tame to the decompensating little girl who needed to be carried down the street.  What didn’t lessen was the continued, vivid joy Skylar displayed in Costa Rica.  She swam, explored, and played for hours, stopping only to write about her experiences and cuddle with one of the kids or Rosa.  She was having the time of her life and by the final day, it was clear the trip had been a smash success: the Real Skylar was back.  But would she remain with a long flight looming?   A snowstorm in the northeast causing multiple delays and cancellations made this highly unlikely.

 

 Skylar drinking a Costa Rican beer…of the root variety

We got onto the plane prepared for the worst but she remained calm on the first leg, even when her ears popped and while enduring the dreaded wait to get off.  Of course, the first leg was the predictable part of the trip, as it was from Costa Rica to Ft. Lauderdale and no snow was involved. The flight to stormy New York figured to be different.  There was no way Skylar would be able to handle the major turbulence we’d encounter…or so I thought until she laughed through every second of it, even as those around her (myself included) audibly worried.  I would have been ecstatic but for one thing: the wait to get off the plane once it landed was bound to be lengthy.

 

The kids with their new friends Jorge and Rosa

It was.  We sat and sat, as the planes had to take turns using one area to let people off due to spots covered by ice and snow.  Skylar understandably grew antsy but was keeping her cool. There was no way her self-control would last, though. It was inevitable: the storm was going to undo almost all of the gains and regains Skylar had made and fireworks were imminent.  Even people not facing the challenges she does were growing impatient and weary.  I braced myself for my daughter’s explosive reaction—and those of the already-annoyed people to her.  Then the gift of a baby crying was bestowed upon us.  Seriously. The crying proved to be music to Skylar’s ears.  She chuckled her wonderful-but-twisted heart out.  That wait was only peaceful, it was…fun.

 

  Sisters forever

The fun continued and the chuckling evolved into full-blown, raucous laughter when Skylar, my little anarchist, noted another airplane parked in a similar situation. “I’m going to steal that plane and land it in the church parking lot next Tuesday,” she kept announcing over and over, hiccupping from laughing so hard.  By the time we disembarked, I realized the Real Skylar really was back and, better still, even if she went away again, she was capable of returning.  I also realized she’d known this the previous March when she kept playing that song. But she wasn’t trying to tell me she was at the bottom so much as she had no intention of remaining there. The picture below taken on our final day in Costa Rica proves as much.

 

Started from the bottom, now we’re here!

Posted December 20, 2013 by seandal in Autism

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3 responses to “The Incredibly True Story of My Daughter with Autism Conquering Costa Rica

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  1. Sean, great storytelling. Heartfelt and touching, yet you kept me reading with the same pace I have when I read Lee Child. Sounds and looks likes you guys had an amazing trip. Proof positive that perseverence and hopefully, positive visualization from you and Jen continue to make a difference in the lives of your whole family and everyone you are in contact with. I look forward to reading “the next chapter”.
    Ryan

    • Thank you so much, Ryan! I very much appreciate the kind words. It was one of the most rewarding but frightening experiences of my life. I probably should have thanked Imperial (the beer of Costa Rica) somewhere in the blog) but helping me get through it.

  2. Pingback: Putting the Pieces Back Together | Diamond Is the Sky

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