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The Legend of Famous Seamus
By Skylar Daly
Famous Seamus was a potato who loved to swim in the pool at the YMCA. He also loved to use floaties and splash the lifeguards. One day, the lifeguard told Famous Seamus he couldn’t swim at the Y anymore because he splashed her. Famous Seamus was sad.
Famous Seamus needed a new way to exercise. He started to walk. He didn’t like it at first because it was too slippery. Then he got to march in the St. Patrick’s Day Parade because he was Irish. He didn’t like walking in the parade, either, until he heard the songs “Don’t Wake Me Up” and “This Girl Is On Fire” playing. This made Famous Seamus happy. He now loved to walk.
Famous Seamus wanted to walk on Team Skylar. He practiced by walking on Sundays, Tuesdays, and Thursdays to the college. Famous Seamus started walking faster and faster until he was ready to walk at the Autism Resource Center of Central Massachusetts walk.
He was calm on the day of the walk. His friend Skylar asked him if he wanted to walk and he said, “yes, no, maybe.” But then the directional came on a car that was parked and he changed his answer to “yes.”
Famous Seamus had fun at the walk. He was there for five hours. He can’t wait to be on Team Skylar again next year. He is proud to be the only potato to ever walk. This makes him a legend.
At the risk of stating the obvious, there’s no worse tragedy a family can endure than the loss of a child. Correspondingly, there’s no greater act of humanity than for the parent of a child who passed away to somehow move beyond her unimaginable heartbreak and give fully of herself to help others facing the nightmare of serious childhood illnesses. On October 25th, I had the privilege of witnessing such greatness firsthand.
Sammy inside his favorite thing in the world–a trash truck
It was an unseasonably warm as Sammy Goldman, age 4, stood in his yard bouncing, his joyous energy obscuring the fact he’d recently finished yet another round of chemotherapy for Neuro Fibramatosis, a condition that had threatened both his life and eyesight. By his side as they’d been throughout the entire hellish ordeal, were his parents, Sam and Shellie, as well as his big sister Chloe. They were all awaiting the arrival of Sammy’s favorite thing in the world—a trash truck—something my non-profit organization, Diamond Is the Sky, as well as another, Kisses 4 Kayla, had arranged to have venture to his house.
Noel let Sammy do everything on his truck except drive
I had first learned of Sammy and his condition during a Bikram Yoga fundraiser in his honor this past summer. His father was teaching the class and spoke of how the Dana Farber Foundation had arranged for a trash truck to visit his young son to boost his spirits. Sammy, thank goodness, was doing much better and appeared to be out of immediate danger but he’d still endured something no kid should ever have to and deserved another trash truck visit, something that would easy enough for Diamond to arrange for him, especially since we’d recently become aware of a trash disposal company called Up-Town Trucking and, more specifically, its benevolent owner, Noel Levesque.
Between supporting cancer, autism, and who knows how many other great causes, Noel Levesque is an MVP of his community
Noel had won a contest Diamond put on for Standout Community Member for the story of how his gift of a pink trash barrel for a girl with autism prevented the girl from wandering further onto her busy road in pursuit of the pink barrel across the street. Technically, Noel’s reward was 2 Red Sox box seats courtesy of Diamond but, in reality, he hardly needed something tangible to feel rewarded, as further evidenced when he passed the tickets along to the dying mother of a young man with Asperger’s so she could fulfill her dying wish of taking her son to a Red Sox game. Suffice it to say, Noel being involved with this project felt like a safe bet.
Noel helping Sammy into the truck
We needed more, though, as while Diamond’s mission is purposefully broad, it’s also generally on the lighter side of providing fun resources for people with special needs to better integrate them into their communities, not cheering up a kid getting chemo. Thus, we needed expertise to make the day truly memorable for Sammy. This is where Kisses 4 Kayla, specifically their President and co-founder, Kerry Millette, came in.
Sammy and his Mom
I thought the entire project would be right up Kerry’s alley and I was right, as she considered things I hadn’t, such as gifts for both Sammy and his big sister instead of having it all about the boy. It was the exact type of thing Kisses 4 Kayla existed for and I was grateful to have Kerry onboard. Still, I had no idea of just how grateful I would soon be until the afternoon of the truck visit on October 25th.
Kerry handing Sammy some of his presents
When the truck turned the corner, Sammy let out screams of joy and ran toward it, his family right behind him. When his father stated the boy loved trash trucks, I had no idea as to just how true that was until seeing and hearing it firsthand, as I’m not sure anyone has ever been happier about anything than Sammy was to see that truck. Not surprisingly, Noel was the perfect host and Sammy spent the next 90 minutes riding in the truck, beeping the horn, and otherwise experiencing everything about it short of driving. He and his sister also opened their gifts and played with my daughters as the grownups all talked.
Sammy and his sister playing with their new toys
Eventually, discussion turned to our respective organizations. My description of Diamond was brief, as we were obviously just honored observers to the greatness of others. This became increasingly evident as Kerry spoke of Kisses 4 Kayla and, more to the point, the unimaginable horror she, her husband Craig, son Ty, and daughter Ava, also Kayla’s twin sister, had endured.
Kayla and her twin sister Ava before Kayla became sick
She explained how Kayla, her once-bubbly little girl, had gotten a fever and grown lethargic on her last day of pre-school in June of 2011. Chillingly, the problem turned out to be Hemophagocytic Lymphohistiocytosis (HLH), a potentially deadly disorder that bore similarities to cancer. At the age of 4—same as Sammy—she began chemotherapy, something that continued for 6 months. Slowly but surely, the chemo seemed to work and the vibrant little girl returned, playing soccer and enjoying her friends. For the first time in ages, she got to be a kid again, a joyous time still reflected in her mother’s tone even a few years later.
In January of 2012, Kayla returned to the hospital for more chemo and a bone marrow transplant from her selfless twin sister. Complications ensued but Kayla, ever the fighter, returned in April for even more treatment and another transplant from Ava, also a fighter. The transplant worked but the pounding from the toxins on her immune system was too much for the 5-year-old to bear. On June 12, 2012, Heaven became a better place when it gained Kayla. And in fall of that same year, Kerry and her family set out to have the same effect on this world by forming Kisses 4 Kayla, a non-profit organization serving people and families dealing with serious childhood illnesses.
Baby was Kayla’s favorite stuffed animal and by her side all times. Here, Baby epitomizes Kayla’s spirit by crossing the finish line at the Kisses 4 Kayla 2013 5K with Kayla’s sister Ava and friends
It was difficult to maintain my composure as I listened to Kerry. I can’t say for certain what I’d do if I lost one of my daughters but it feels unlikely I’d survive, let alone persevere while also helping others. It struck me Kerry was operating on an entirely different level of humanity than myself or pretty much anyone else I’d ever met. When the visit finally wrapped up–the spirits of Sammy and his family boosted thanks to her and Noel–I wasn’t only honored to be a tiny part of the day but a different person altogether. Kerry’s courage and altruism had changed me forever.
Ava and Ty delivering gifts for Kisses 4 Kayla
To learn more about Kisses 4 Kayla, please visit http://www.kaylamillettememorialfoundation.com/ as well as their Facebook page https://www.facebook.com/pages/Kisses-4-Kayla/299001120197605?fref=ts.
What constitutes a miracle differs from person to person, as all of our experiences are just one infinite spectrum. One of the miracles I’ve experienced in my life will probably sound lame to most: my older daughter asking me to play with her. But, as the father of a child named Skylar with autism who, at the time, faced seemingly insurmountable social and communication deficits, it was a dream come true. The game Skylar wanted to play was baseball and, not coincidentally, her request took place shortly after she first became a part of the Miracle League of Massachusetts (http://miracleleagueofma.com/) in 2010.
Nobody plays the game as right as Daisy of The Miracle League
On the surface, the Miracle League is an organization providing kids with special needs the opportunity to play baseball. But as anyone who has ever played, spectated, or volunteered at a Miracle League game can attest, the experience goes well beyond a game. Kids with a wide variety of physical and emotional challenges are paired with like-aged “buddies” recruited from neighboring schools. Judging by the expressions of the buddies, they seem to get as much out of helping the players as the players get from having a typically developing peer coaching them. The games take place on The Joseph A. Lalli Miracle Field, an all-accessible, state of the art facility constructed to accommodate all physical challenges so nobody is left out. Players are given the opportunity to express themselves on the microphone, be it through song (Skylar used to sing “Take Me Out to the Ballgame” during the second inning stretch, for example), saying “play ball”, or to just give an impromptu take on the proceedings. The action is so well organized by league secretary Lauren Richardt that parents and caregivers are able to sit back and enjoy the action instead of engaging in the Chase, Hover, and Apologize modus operandi so many of us grew accustomed to when bringing our unique kids to games and activities put on by other organizations.
Joey, a/k/a Mr. Baseball, doing his Big Papi tribute
The main thing the Miracle League provides is an extended family. Everyone involved is volunteering— meaning everyone purely wants to be there. Such spirit is embodied by league president and co-founder Rich Shertenlieb, who has spent years driving a great distance to provide 6 hours of the most energetic, empowering play-by-play of the action anyone could ever deliver, making every player (and, by extension, parent or caregiver) feel like not only a star athlete but also a rock star (which, of course, the players are). The fact Rich himself is a star (as one half of the top rated Toucher and Rich radio show on 98.5 The Sports Hub) and, yet, spends a dozen Saturdays a year making everyone’s experience over the course of countless games so positive sets a tone that has clearly resonated. A couple of years ago, Rich’s wife (and league Vice President and co-Founder Mary Shertenlieb) was diagnosed with acute myeloid leukemia. The intense treatment Mary required made it so attending the games was no longer possible for the Shertenliebs but the sterling example he, as Voice of the Miracle League, set can be found in a number of fill-in announcers who have done a remarkable job following in his footsteps. Rich and Mary may not physically be at the games these days but their presence remains, as evidenced by the dozens of pink We Support Mary t-shirts that can be seen any given week during the seasons adorned by men and women and adults and kids alike.
The extended family mentality even extends to other non-profit organizations. Three years ago, months prior to The Miracle Field being constructed, I wanted to do my part so I offered my services as a race director and fundraiser to Miracle League treasurer Andy Richardt. My hope was to put the Miracle League over the top in their quest to finish the field and, coming from an autism fundraising background (where the approach is generally well-intended but falls between extremely earnest and evangelical), I had some ambitious ideas that Andy, much to my initial surprise, wasn’t in total agreement with. His reason was simple: he didn’t want to reach too often into the pockets of the very people the league was designed to serve. The more I considered his point of view, the more I realized just how right Andy was—so much so I’ve adopted a similar attitude about fundraising for the non-profit I co-founded with my wife Jennifer earlier this year called Diamond Is the Sky (www.diamondisthesky.org).
Rich holding the bullhorn so Justin can sing the National Anthem in the pre-Miracle Field days. Anyone who attended the Diamond 5K this past Sunday discovered what anyone who has attended a Miracle League game has known for years: nobody can sing like Justin!
Andy’s support of Diamond Is the Sky goes well beyond the philosophical. When the town fee for a one-hour soccer clinic on The Miracle Field put on by Diamond and another newer non-profit, Sidekick Soccer Academy (http://www.sidekicksocceracademy.com/), struck me as steep for the level we were at, Andy jumped in and paid it without even being asked. Andy, in fact, is the one who put me in contact with Sidekick to begin with—another like-minded entity we intend to continue to collaborate with. Andy has put me in contact with other people and organizations too. He has truly shined as one of the very top supporters and sounding boards during the often scary first year of existence for Diamond.
Josh calls his shot
The support of Andy and the extended Miracle League Family toward Diamond was also felt this past Sunday, when we held our 1st Annual Halloweenfest and 5K in Worcester, only the second fundraiser in our brief existence. Despite chilly temperatures and intense wind, Andy and Ed O’Neill—himself one of the Miracle League’s most dedicated, valuable, and tireless contributors—drove 45 minutes to grace us with their presence. The sights of Andy pushing his son Henry and Ed pushing his daughter Emma in modified jogging strollers were amongst my favorite of the event. And the fact Andy and Ed—people who have already given so much for others despite facing challenges in their own parenting lives well beyond what 99.9% of us can comprehend—gave up their morning to be there for me is something I’ll never forget. I’m truly proud and honored to call them my friends.
Andy and Henry in the Diamond 5K
Ed and Emma in the Diamond 5K
This Saturday night, the Miracle League of Massachusetts will be holding their Annual Casino Night Fundraiser at The Chelmsford Elks (http://events.r20.constantcontact.com/register/event?llr=ji4icbhab&oeidk=a07e9uee5ua0a44cd6f) and though my gesture doesn’t compare, I will be there for them. Not only is Casino Night always a great time, all proceeds from the event go to the cause—in this case creating miracles for people with and without special needs like they did for an autism parent back in 2010. Please consider attending or at least supporting this amazing organization.
Why yes, that word in the upper left corner does say what you think it does. Why would a father share such a thing? Duh, because I’m proud! Read on and find out why.
A common misconception about people with autism is they lack empathy for others. It’s a myth that’s largely been debunked over the past several years but such progress was in no part thanks to my daughter Skylar, who spent the first 10 years and 4 months of her life bringing this stereotype to an entirely different level. Skylar, you see, not only didn’t empathize with the misfortune of others–she reveled in them.
Crying, yelling, or misbehavior by another child, for whatever reason, has always caused my older daughter to laugh hysterically. I never believed this awful trait to be anything but a non-malicious aspect of her autism but, nonetheless, try explaining that to the injured child she’s laughing at in the heat of the moment…or their irate, panicking parent…or her heartbroken little sister Alyssa.
I’ve long believed the only thing an autism parent can do in such situations is to (often uselessly—but it’s for show) admonish their child while apologizing profusely to all who will listen. Generally, such apologizes were accepted and life went on…until Skylar did it again. People who knew her accepted her twisted laughter at the worst possible times as part of her one-of-a-kind package and even grew to find it darkly humorous. I appreciated their appreciation of Skylar but such moments tore me apart because they served as proof my little girl was never going to connect with the human race: How could she with no sense of empathy? The one saving grace was that the twisted laughing was infrequent because Skylar ran with a crowd whereby she was usually the one having difficulty (not nearly as comical to her). It all changed this school year.
As previously chronicled in this space, we made the decision to tap out on full inclusion for fourth grade and placed Skylar in a sub-separate room with other kids on the autism spectrum for the vast majority of her day. Since it wasn’t exactly a leap to assume the kids in said classroom were likely to frequently display the crying, yelling, and misbehavior Skylar so enjoyed, I feared we were taking a problematic-but-infrequent behavior and making it a staple of her existence. For the first few months of the school year, my fears were warranted. Skylar came home beaming with stories of how this kid or that kid in class did this wrong or cried about that. I knew a day of laughter at the expense of others had just transpired. Her connectivity was growing weaker and her sense of empathy for others not at all. I felt more hopeless than ever about her ability to fully join this world.
This sweet face is now consistent with a little girl who is sweet to others in need
A few months ago, I suddenly noticed that Skylar was no longer as bemused by her classmates’ struggles. When I asked her about school, she would say very little, and, when I’d ask about this kid or that kid, she’d become silent instead of giggling uncontrollably. What was going on!? When I asked her teacher about this drastic tone change, I found out Skylar had some concerns about a classmate possibly ending up in jail someday because of their bad behavior and was trying to help them. She also now grew demonstrably upset in class when they or anyone else was upset or struggling. Wait…what!? Skylar cared about the kids in her class?
Skylar also began to react to Alyssa’s occasional outbursts in a radically different fashion. Moments of legitimate hurt on Alyssa’s part were met with Skylar singing the song “Safe and Sound” to soothe her and crying or protesting in unison, which was great to see. Of course, drama queen moments on Alyssa’s part were met the same way, which wasn’t so great but at least gave my younger daughter some perspective as to how silly she looked in such moments. EmoSkylar, as we dubbed her, had arrived.
Skylar has always fancied herself a clinician so when I learned she’d made a behavior chart for the classmate she’d taken under her wing in an effort to cut down on their use of “unexpectible words”, I wasn’t surprised. What did surprise me was when I found one of the charts she’d made at home one day posing the question, “Who’s Fuc#@R”, words her classmate had presumably uttered. EmoSkylar was working blue and I was concerned. Sure, her heart was in the right place but it was difficult to regard a 10-year-old writing F-bombs in her spare time as a positive. Exactly what direction was this newfound sense of empathy for others taking her?
That evening, our family went out to dinner. Alyssa had asked for a few ridiculous things while we awaited our food and pouted when they were denied (causing EmoSkylar to come to her defense, naturally). When my wife Jen and I both played on our phones a few minutes later, Alyssa decided to dig through her Mom’s purse…causing Skylar’s eyes to grow wide. In one quick motion, the big sister who is usually more of a little sister did a very big sisterly thing: She reached over and removed a lighter from Alyssa’s hands before any trouble or injury could occur. By the time I caught on to what had happened, the potentially flammable situation had been vanquished—by Skylar! Forget just empathy–Skylar was now responsible!
EmoSkylar continues to flourish as the school year draws to a close. She’s not only dispelling any myths of people with autism not having empathy, she may also be contributing to a new one whereby people on the spectrum are regarded as too wrapped up in the feelings of others to sometimes function.
Admittedly, EmoSkylar can be annoying at times but such melodrama beats the hell out of her laughing at kids who are crying. Who’s F%$#@R? I don’t give a S#%, to be honest, because, in the year 2014, my Skylar is putting out fires—figuratively and almost literally—and helping others instead of laughing at them. Not only can she connect—she can be a vital link.
Skylar is a little girl with multiple identities, “Snow” being the most recent. But “Snow” has taken well to suggestions to keep swears off her behavior charts, as evidenced by this simple recess plan she has for the kids in her class.
Diamond Is the Sky is a non-profit organization providing affordable social opportunities and resources to people with special needs and their families, educators, and communities in the state of Massachusetts. To learn more, please visit http://www.facebook.com/diamondisthesky and, coming soon, http://www.diamondisthesky.org
There’s a phenomenon that began in the autism community several years back whereby parents of kids with autism began to refer to themselves as “Warriors.” Indeed, “Warrior Moms” and “Warrior Dads” became both a very common term on social media and cottage industry for the sale of various products. For me, personally, I never believed having a daughter with autism made me a “Warrior Dad” so much as a “Dad” but, hey, that’s just me and if somebody feels better about themselves because he or she fancy his or herself a “Warrior”, rock on, Warrior. But with Mother’s Day upon us, I would like to write about two Moms who I believe to actually be Warriors.
The first Warrior I know very well because she gave birth to me. My Mom had a childhood filled with horrors kid should have to endure, the type that often create adult monsters according to statistics. My Mom didn’t become a statistic, though. She instead built a life on saving kids from monsters—be it as a foster mother, adoptive parent, or social worker for both DSS (now DCF) and then MCB. Her selflessness and pathological need to take care of everyone else unfortunately created a situation whereby she never really took care of herself and poor habits ensued. This is why, in 2003 when my daughter Skylar was born and she quit her two-pack-a-day menthol cigarette habit, I was ecstatic.
The ecstasy didn’t last.
As so often happens when a person gives up one addiction, others take hold. For my Mom, this meant surrounding herself with stuff, particularly food. Lots and lots of food. I hoped it was a temporary replacement behavior for the smoking but it wasn’t and, unless an apocalypse hit, she was stockpiling her life away. I was temporarily encouraged when she hired somebody to help her remedy the situation a couple of years ago but when that person left, so did her desire to dig her way out.
About three months ago, I left my Mom’s house and broke down during the car ride home. People have long criticized me both directly and indirectly for not “fixing” her issues and I’ve largely taken it in stride, as she’s a human being with free-will who has outlived many people who died in perfect health, not a project to fix. Odd compulsion or not, my Mom seemed generally content to me so who was I to violate her home or give intervention-like ultimatums that would break not only her heart but my own and those of my kids when the terms weren’t met? It wasn’t that I never offered help or said what I thought needed to be said but, at the end of the day, it wasn’t my life to live, it was hers and I was okay with that even if others weren’t. That visit changed my perception. For the first time, the weight of my lack of forcefulness hit me hard. My Mom was in desperate pain and life for her struck me as too much to bear for the first time. She rejected my attempts to provide more help and even informed she’d stopped using the young woman who’d been cleaning and organizing her house. She also said without saying she’d never be leaving her house again and had the dead car in her driveway to prove it. It seemed obvious she’d given up and I was felt as though I was to blame.
I try to call my Mom almost every day but I had to stop. Talking to her was just too depressing, as every time I did so, I now wondered if this would be the last time I’d ever speak to her during the entire conversation. Of course, such a thought eventually stirred a more productive one—why would I let an opportunity go by when it could be the last one— and, thus, I sucked it up and began her calling again. One subject that often came up was the fact my wife Jen and I are in the process of starting a non-profit organization called Diamond Is the Sky. As we discussed Diamond more and more, I could hear my Mom’s enthusiasm growing. Her input was invaluable and, when I’d get discouraged or overwhelmed, she’d point out that the skills needed to run such an organization were ones I’d been developing my entire life. When I’d vent about petty annoyances, she’d hear me out before getting me back on a positive track. Due in a big part to her, one of my dreams is becoming more and more of a reality. It’s plainly obvious that, even at the age of 42, I still need my Mom.
I think she realizes this. I’m proud to say my mother has made an amazing comeback over the past two months. She has welcomed the young woman who’d been helping her out back into her home and her house now teeters on clean. She also started and has remained on a diet to improve her mobility and health. She even plans to come to our Launch Party in a month, meaning I guess she’ll be leaving the house again after all. No matter what becomes of Diamond Is the Sky, if this adventure in any way played a part in my Mom, yet again, getting off the canvas to kickass in life, it’s a success in my estimation.
I haven’t known Liz as long as my Mom. Actually, I’ve only known her and her husband Matt for about six months. Matt joined the Board of Directors for Diamond Is the Sky in January and has been an amazingly productive, passionate contributor with great ideas. I knew Matt would do well but what I didn’t realize was that while all of his spectacular voluntary efforts on Diamond’s behalf (on top of his full-time job, raising twin daughters (one with autism) in kindergarten, and moving to a new house) were also taking place with his wife being sick.
My first recollection of Liz was hearing about how she’d run a long distance race for the first time in her life after having endured 15 knee surgeries. I marveled at her toughness in handling such adversity but her running exploits don’t even scratch the surface of her grit. Liz was also having major health issues and, a few months ago, was diagnosed with stage 3 ovarian cancer. Even though I didn’t know her well, it hit me hard, as I, too, have young daughters (one with autism) and about the only things I fear in this world are something happening to them or something happening to me whereby I can’t be there for them.
I’ve gotten to know Matt and Liz better these past few months and now consider them to be good friends. I’m absolutely blown away by the way they’ve maintained normalcy for their little girls and the positive way in which they’ve carried themselves. Like my Mom, Liz clearly puts others first and her amazing kids are evidence of this.
Today, Liz began chemotherapy. I’m fortunate enough to say I’ve never had cancer and I can’t imagine what she is about to endure emotionally and physically. This morning, while walking Skylar to school (a task I’ve spent the better part of the past 5 months ridiculously bitching and moaning about because the temp wasn’t to my liking), I passed Matt and Liz. My heart immediately froze, as I knew her next stop was chemo and, yet, there she was, bringing her beautiful daughters to school just like it was any other day—for their sakes. When I got into my car, I broke down again but it was out of awe, not despair. I have no doubt Liz is about to kick the living shit out of cancer because people that strong ALWAYS win in the end. I learned this firsthand from my being around my Mom.
Our website www.diamondisthesky.org is currently under construction but should be operating in the near future. For the time being, to learn more about our organization, please visit www.facebook.com/diamondisthesky. Of far greater importance currently, if you are interested in doing something relatively inexpensive and simple to help Liz, Matt, and their girls, please email me at email@example.com and I’ll give you the link and code to a website where you can sign up to provide a meal (homemade or takeout) for the family during their time of need.
“The tiny plant from the tiny seed grows on and on. It doesn’t stop. It grows taller and taller. And now a flower grows on it. People come from far and near to look at this flower. It is the tallest flower they have ever seen”–Eric Carle, The Tiny Seed
In the fall of 2010, 8 kids with autism took part in a specialized class created by an autism parent and Jennifer LaFlamme, owner of Dance Progressions in Worcester, Massachusetts. Of these 8 kids, one, Shawn Hebert, stood out at the beginning but it wasn’t just because he was the only boy. “Shawn is a cautionary observer,” his great-aunt and guardian Nancy Merrill notes. “He’s not one to be pushed too quickly into action.”
Indeed, while the other kids danced, laughed, played, and generally seemed to have a great time, Shawn struggled mightily, crying and hiding in the corner. It was obvious the presence of so many strange people within a confined space bothered him greatly but he hung in there. Equally important, Nancy, who has been through it all and then some with her great-nephew, did too. “I knew we were on to something. Shawn bonded very quickly with Miss Jen,” she remembers.
Shawn and Miss Jen warming up
Slowly but surely, Shawn’s willingness to participate increased as the class proceeded. He was performing some of the moves and greatly enjoying the games designed to encourage self-expression, such as pretending to be an animal. His magnetism began to shine too. “Shawn has a smile that would brighten anyone’s day,” Tracie Brown, an instructor at Dance Progressions and one of Shawn’s original teachers states.
The initial autism-driven class proved a success, with two of the students achieving the Holy Grail, so to speak, of taking part in the studio’s annual recital on stage along with typically developing peers in front of hundreds of people. Shawn wasn’t one of these two students but he stuck with Dance Progressions, returning for subsequent sessions until Miss Jen took a maternity leave.
The specialized class fizzled out but not his bond with Miss Jen, who had a knack for working with him. She offered to lend her vast expertise in a 1:1 setting at a very modest cost to teach Shawn. When she returned from having her baby, so did he, continuing to increase his physical skills, attention to task, and communication skills. The physical movements combined with following verbal and visual directions served as a brain gym for Shawn. His vast improvement was most apparent to the person who’d know best: his great-aunt. “I was in awe,” Nancy recalls.
Shawn getting the routine down
Things were going great in their sessions until Miss Jen again became pregnant, the visual of which threw Shawn off. He’d poke at her belly before retreating and no longer had the same enthusiasm for dance. It was a setback but Shawn, Miss Jen, and Nancy all persevered. He stopped taking lessons when Miss Jen took her second maternity leave but he was far from finished.
When Miss Jen returned last fall, Shawn did too–with a new person in the mix: Dance Progressions Competition Team Member Mariah Bryant. “Mariah was introduced slowly,” Nancy explains. “He got a kick out of having two ladies by his side and took to Mariah in short order.” Soon, two ladies became one, and Shawn had a dance partner. “The eventual separation from two partners to one was a well planned transition by Miss Jen,” Nancy notes.
Shawn and his dance partner and friend Mariah
The feeling is mutual. “Shawn is my BFFL,” states Mariah, a high school student studying Early Childhood Education. Miss Jen agrees. “Mariah and Shawn are a great mix.” The BFFLs warm up together, practice steps, and then perform a routine to a song appropriately titled Give A Little Love. Shawn, who is almost entirely non-verbal, makes his affinity for his dance partner quite clear with frequent smiles and hugs. “Shawn loves dancing with Mariah,” says Nancy.
Dancing his heart out
Shawn’s weekly dance lesson with Miss Jen and Mariah has started to carry over to other settings. “At home, Shawn started moving about practicing steps such as the chasse side-to-side, skipping, and recently, the toe-heel-tap,” Nancy marvels. “I didn’t know what or who he was imitating until I saw him practice the same steps with Miss Jen. It’s the funniest thing to see him break into dance steps without music. I think he’s imagining the music as she does it.”
Miss Jen has had Shawn’s back since day one
It’s a good thing Shawn is practicing his dance skills because, on Friday, June 13th and Saturday, June 14th, he will take part in the Dance Progressions 2014 Recital with partner Mariah by his side. Nancy is thrilled. “I have been on cloud nine since Miss Jen recommended Shawn participate in the recital,” she gushes. “I cannot wait to see him on stage. I am so proud and happy for him!” It’s safe to Nancy is not alone in this sentiment.
Shawn and his Great (in more ways than one) Aunt Nancy celebrate another successful dance class
To learn more about Dance Progressions, please visit their website at http://danceprogressionsma.com/. Tickets for their always spectacular recital–with a performance by Shawn and Mariah–will soon be available to the public. Please visit my page on Facebook at www.facebook.com/diamondisthesky.com and like to keep up with the latest happenings of this blog and my non-profit under the same name.
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