I just want to take the opportunity to wish everyone a very happy 2014! I have big plans for Diamond Is the Sky in the coming year that include not only making this blog bigger and better in terms of content but also using it as a platform to help a lot of people impacted by autism and other special needs. Stay tuned and thank you! I will have a new entry on Monday, January 4th.
Is there legal precedent whereby a parent is forced to hand over his cellphone to a court of law as evidence against his child in the event of her causing property destruction, injury, and even death at a school holiday show? This was the question running through my mind as I awaited Skylar and her class to the take the stage last week. It’s fair to say there are few things I dread more than my daughter’s participation in this annual event. My dread is well-earned.
It’s impossible to raise a child with autism without a deep appreciation for absurdity and, through the years, Skylar has provided plenty of absurd moments at these shows. For example, there was the time she launched her kazoo from the stage, somehow bypassing everyone seated in the very front to nail a frail grandmotherly-type in the second row. Was it horrifying to witness? Yes, but it was also difficult not to be impressed by my daughter’s throwing accuracy. Even more horrifying/impressive was the time she dropped to the floor mid-song, sat in a W-position, and proceeded to grind the stage with an intensity that may well have inspired Miley Cyrus’ infamous 2013 VMA Performance. Or was she stealing Madonna in the wedding dress from years back? My daughter is a trendsetter/copycat.
Skylar’s autism is nothing if not versatile, however, so the action hasn’t always emanated from the stage. One year she had such earthshaking fit in the hallway waiting go to on stage that seemingly three-quarters of the audience turned around from the show to take it in. Of course, that doesn’t compare to the year she threw such an earthshaking fit in the hallway waiting go to on stage that she never even made it to the stage. Big deal—a true performer doesn’t need a stage.
Skylar’s unique approach to her holiday show participation can also be powerful enough to bring out the inner-revolutionary in others. This was never more apparent than the time she began to cry and yell mid-performance, prompting my then-two-year old daughter Alyssa to jump from my lap and bolt towards the stage herself, calling out “I’ll save you, Sky-wah!” As I grappled with 25 pounds of redheaded little sister fury for all to enjoy, it struck me that it wasn’t just Skylar who was the problem: you can’t take us Dalys anywhere.
I make light of all this because the alternative would be to jump off a high bridge or, worse, not show up to support my daughter out of fear of being embarrassed. It would probably help if Skylar’s schoolmates, their parents, and the staff at her school weren’t so accepting and loving of her and my family because if they were the types of jerks you so often hear about at other schools, I’d feel a sense of vengeful pride about my daughter’s autism compromising their enjoyment instead of a massive sense of guilt. But I wanted the show to go flawlessly for their sakes because I loved them all just as much. It was hard to imagine this happening with Skylar involved, though.
As I readied my cellphone camera to record the show for our enjoyment/possible evidence, I started to consider just why the holiday shows were such an annual disaster for Skylar. The simple answer is that she’s a child with autism being forced to both stand in front of a crowd and wait, both extremely common stressors for a child prone to overstimulation and in need of movement breaks. But like most things with Skylar’s autism, the answer probably wasn’t that simple. If it were, why would she have given such excellent, incident-free performances at dance recitals and karaoke party performances in front of even larger crowds in the past? Maybe it was hearing and seeing the kids around her on the stage more than it was the crowd? Or the expectation she remained in one place throughout the performance? Or not being able to sing the song she wanted to? Whatever the culprit, it was time to stop pondering the whys, as Skylar took the stage with about 25 of her fellow fourth graders for the first of two songs.
I zeroed in on her with my camera phone, pressed record, and started laughing, as her self-chosen attire made the transition from introspection to embracing absurdity easy. You see, while almost all of the other fourth graders were dressed in red, green, Santa hats, and so on, Skylar rocked a blue dress and headband she’d decorated with every color of duct tape known to man—besides any typically associated with Christmas, that is. Naturally, a feather taped to said headband rounded out the winning ensemble. Happy Belated Thanksgiving, Happy Belated Halloween, or Happy Martian Day? Seriously, if presenting herself in such a bizarre way relieved her stress enough to keep any impending criminal activity more of the misdemeanor than felony variety, it was fine by me. Topping things off, Skylar was handed to sign to hold reading “Shalom-Peace”. Hahahahahaha! Apparently, whoever put the show together had jokes.
I was hopeful the sign wouldn’t be used for javelin or assault purposes because Skylar has thankfully outgrown such behavior. On the other hand, the odds of “Shalom-Peace” remaining in one piece with my PICA-leaning child in such a high stress environment were remote. As the first song began, Skylar didn’t sing along or do any of the basic choreography but she rocked to the music and treated the sign well outside a bit of twirling. Not bad at all. When the next song began, her 1:1 grabbed the sign away (not punitively but because it no longer fit the show content) and she mildly stimmed by rubbing her hands together and scratching her cheeks. Once again, she didn’t sing or move in synch with her classmates but overall represented herself in quite a dignified manner. Wow! Was that it? That was great!
As she left the stage, I stopped recording a bit early to applaud my heart out. Skylar had just given far and away her best holiday performance ever. And this is where the inspiring story ends. Happy holidays, everyone…wait. No, the story doesn’t end here. What happened next proved to be much worse for my delicate Autism Dad psyche than mayhem or absurdity would have been. What happened next was devastating: the school chorus took the stage.
They sounded amazing. What a collection of gifted singers. Their voices caused me to think of another gifted singer I know—Skylar. My little girl has perfect pitch, can hit any note, and has an audio library of thousands in her brain that ranges from humming Beethoven to rapping like Tupac to melodizing like Jenny Lewis. She’ll bust out these renditions at any time and only on her terms (she does not take requests) but they aren’t a product of echolalia; they’re one of her primary means of expression and they’re perfect.
My mind drifted back to when she performed Katy Perry’s “California Gurls” at her grandmother’s retirement party. Skylar had nearly two-hundred people mesmerized. That audience exploded in applause when she finished and I remember the joy on my little girl’s beautiful face as she jumped up and down, thus proving she does like to sing for others. Being in a chorus would certainly provide such opportunity. But how would that work? I’d just been celebrating the fact she didn’t murder anyone during her holiday show and now I’m thinking about her in the chorus? Really? I was embracing absurdity all right! The heartbreaking realization Skylar could never be a part of the artistry taking place up on stage hit me hard.
Skylar perfoming “California Gurls” by Katy Perry at her Nana’s Retirement party
The depression intensified as I drove Skylar home and listened to her sing “Sirens” by Pearl Jam better than Eddie Vedder does. Moments where I despair about what might have been for my daughter have lessened as the years go by. I’ve sincerely come to accept that her path is destined to be very different but not necessarily any worse than anyone else’s. Still, self-pity parties still do take place every now and then and I was at a rager, wallowing away when my cell phone rang. It noticed on the ID it was a friend and fellow school parent.
“Sean, I made a joke that somebody overheard about what if Skylar hits somebody with that sign and a parent of one of the younger kids reported me to the Principal,” she began, sounding breathless. “The Principal brought me to her office to ask me about what I’d said and I told her how much I love Skylar and how we’re friends and how you were probably thinking the same thing about the sign. You know I didn’t mean anything by it!”
My heart filled and my sadness instantly vanished. This misunderstanding was yet another example of how well and how universally my would-be-misfit daughter fits in at her school. She has a principal who cares about her enough to address a situation other principals would have just shrugged off. She has schoolmates with parents who don’t even know her who are still willing to stand up for her. And she has schoolmates with parents who know her well enough to feel comfortable in making a good-natured joke versus demanding she not take part in the performance again after years of disasters or condescending to her with unnecessary empathy. “Don’t worry,” I replied to my friend, laughing. “I was thinking she’d eat the sign.” The entire situation was absurd—absurdly encouraging. Why couldn’t Skylar be in the chorus again?
I realized the answer is she absolutely can be. Not this year but perhaps next or the year after. My daughter has the voice, desire to perform, and, most importantly, support system of an entire school of people rooting for her. Sure, there’s lots of work to be done but she’ll get there, just like we got her to the point of finally tolerating being in the holiday show. I wish I could end this blog with a rousing triumph of how she went from screaming in the hallway to chorus star but I predict that will be my entry this time a year from now. For now, happy holidays and thanks for reading!
Retro picture of Skylar and Alyssa probably around time Alyssa’s attempted stage rush occurred
The Incredibly True Story of My Daughter with Autism Conquering Costa Rica
“Started from the bottom now we’re here”
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.
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.
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 to–and 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.
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!