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.
(The following true story is based upon the lives and recollections of some people I know extremely well. Their names have been changed to maintain a standard of confidentiality.)
It’s never too late in life for dreams to come true if you refuse to give up on them. A remarkable man named Jacob is living proof of this.
Jacob was born to parents who did their best but weren’t equipped to raise a child with special needs. Consequently, he was taken from them at a young age and placed into foster care. Jacob didn’t feel physically or emotionally safe with his foster parents but, nevertheless, spent years in their home and came to think of them as family. The foster parents thought of him the same way and intended to adopt him— until one afternoon when Jacob’s foster mother called him at summer camp to inform him they’d changed their minds. Jacob never returned to the place he’d come to know as home, instead spending the next several years in state schools and psychiatric hospitals. Sadly, Jacob actually felt safer at the state schools and hospitals than he had in his previous living situations but longed for a family to call his own.
When Jacob turned 22, he moved into a group residence with three other individuals. Similarly to the hospitals and state schools, he loved a lot of the staff who worked with him, but didn’t feel comfortable around the other individuals, one of whom targeted him for teasing. Jacob was a sensitive man and the teasing shook him to his core. Although he could speak and write, he began to express his feelings over being teased and what he’d endured in the past by banging his head against hard surfaces and punching himself under his chin, actions certain to get a reaction. Even though nobody at the house or his new day program physically harmed Jacob, the head banging was also a preemptive strike: He reasoned nobody would hit him if he hit himself first. Soon, the scars and marks on his forehead and chin rivaled those from the belt marks on his hips and backside from the years prior to his hospitalization.
Jacob made another preemptive decision. This time, it was to start wearing a hockey helmet to protect himself from himself. Most of the people who worked directly with him felt this decision wise, as Jacob was keeping himself safe. A few others not directly responsible for his wellbeing felt differently, believing the hockey helmet and chin strap made him look weird. Some of the dissenters would state their opinion to Jacob. Being criticized for wearing a helmet was devastating to Jacob, as the feelings it evoked went well beyond the sting of being labeled weird-looking. To add to his sense of security, he also began to keep a ball of fuzz between his fingers and stack of folders under his arms at all times. These things, along with the helmet, represented armor to Jacob.
As the years passed, Jacob made great strides. He’d become a favorite of many people who
worked with him, including Shane, his new day program director. Jacob and Shane weren’t that far apart in age and shared similar musical tastes. They hit it off so well that Jacob essentially took over Shane’s office to use the computer and hangout. Shane’s wife Jess also took an instant liking to Jacob one day while visiting. Shane and Jess, who’d just bought a new house, discussed the possibilities of bringing Jacob into their home.
Shane and Jess invited Jacob over for Thanksgiving. It was the first time he’d been to anyone’s house for a holiday in years. Everyone present was instructed by Shane not to mention Jacob’s helmet or how Jacob tested it before sitting down by gently banging his head off the table and lightly punching his chin. Not surprisingly, Jacob charmed members of Shane and Jess’s family too, especially as he ate the McDonalds food he’d insisted upon over the standard turkey dinner…before proceeding to eat turkey as well.
Jacob had a good time on Thanksgiving but seeing a big family together brought back a flood of memories. He began to have more trouble keeping himself under control at his day program and residence. His struggles also manifested themselves in his armor, as fuzz balls grew larger, stacks of folders higher, and his helmet and chin strap tighter.
It was clear to Shane that everyone working with Jacob meant well but a lot of the approaches being used to help change some of his behavior weren’t the right ones. One day, Shane walked into his boss’s office and told her he was quitting his job as day program director and wanted to provide shared living for Jacob. The boss wasn’t sure it was a good idea but, to her credit, didn’t shoot it down completely. Jacob’s guardian stood in agreement with Shane that taking Jacob in was a risk worth taking.
Others at the agency were understandably concerned the move would be a disaster but felt something needed to be tried to help Jacob and took a chance. Their courage paid off quickly, as Jacob began to calm with the streamlined behavioral interventions and lessened stimulus of living with and competing for attention with other individuals. Soon, Jacob was doing things he’d never done before, such as taking vacations, working, and attending rock concerts. Holidays were spent with family instead of alone in his room while the fuzz balls shrank and the stack of folders lessened to one or two. Not even Jess giving birth to two kids could slow his growth down—aside from the hockey helmet and chin strap he still wore.
Some people continued to criticize Jacob for wearing the helmet, hurting and embarrassing him deeply. Shane’s public stance was to defend Jacob’s right to wear the helmet and chin strap, as well as point out how Jacob still tried to bang his head and punch his chin on the rare occasions the helmet and chin strap were off and actually ordered staff hold his arms to keep him safe: Wasn’t the helmet less restrictive? The critics generally had no answer to this question but Shane’s bosses and Jacob’s guardian supported Shane’s point of view completely. The helmet and chin strap remained.
Privately, Shane sang a different tune. When alone with Jacob on car rides, he’d occasionally broach the taboo subject of trying to remove the helmet, even if just for a matter of seconds, pointing out what a handsome man Jacob was and how he’d get girlfriends with no problem if people could just see his face. Plus, Jacob always said he craved being normal but how could he be when he wore a hockey helmet and chin strap? Jacob didn’t enjoy these conversations, pointing out he didn’t want to wear the helmet but needed to. As the years went on, the fuzz ball and folders disappeared completely but the helmet and chin strap remained. Shane resigned himself to the likelihood Jacob would never feel safe enough in his home or life to shed his armor. Wearing the helmet was the one obstacle Jacob could never overcome.
One Sunday night a few years ago, Jacob was to attend the holiday concert of a local radio station featuring the band Train when disaster seemed to strike: His chin strap wouldn’t buckle to the helmet. Jess and Shane tried their best to fix the problem but couldn’t. Compounding the problem was the fact the stores were all closed. Jacob was resisting his urges to injure himself in the relatively calm environment of his home but what would happen when he was around thousands of people he didn’t know and his anxiety kicked in? Shane figured he’d start punching his chin only this time there’d be nothing to protect it. Jess, who was to take Jacob, disagreed, pointing out his continued safe behavior without the chin strap. She suggested to Jacob he at least try to go without the chin strap. Much to Shane’s surprise—and horror—Jacob agreed.
Shane waited anxiously with his smart phone by his side, figuring he’d be getting the call to meet Jess at the emergency room with a bleeding or worse Jacob. Such a call never came, though. When Jacob arrived home, he was beaming because Patrick Monahan, the lead singer for Train, had sought him out in the crowd to give him a high five. Jacob reasoned it was because the singer was proud of him for going to the concert without the chin strap. Although the kindly singer had likely chosen to high five Jacob because he wore the helmet, Shane and Jess weren’t about to correct Jacob’s thought process. Suddenly, Shane had an idea: Operation Helmet Removal.
When Jacob was still flying the next morning from his encounter with Train’s singer, Shane brought up the possibility of him trying to go 10 seconds in a row with the helmet in his arms instead of on his head twice a day and then add trials as time went on. Shane also pointed out how Jacob had made it through both a concert and the night without a chin strap so why not try to keep it going? With great reluctance, Jacob agreed to both suggestions.
The plan was for Operation Helmet Removal to be a five year process. A few days into it, Shane jokingly placed a baseball hat on Jacob’s head during one of his 10 second sabbaticals from the helmet. Ten minutes later, Jacob still had the hat on instead of the helmet. By the end of the week, he was wearing the far more fashionable baseball hat instead of the helmet almost all of the time at home and, the week after that, almost all of the time at his day program too. By Christmas, Jacob was helmet-free. Four years later, he still is.
When asked, Jacob will admit he’s still surprised he was able to get rid of the helmet and chin strap. He shouldn’t be, though. He represents the very best of what a person can accomplish when they persevere against all odds. He represents the very best of people period.
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The following exchange from Ghostbusters has always stuck with me when it comes to Skylar’s typically developing little sister Alyssa’s right to a separate existence when it comes to school:
Egon Spengler (as played by the late Harold Ramis): There’s something very important I forgot to tell you.
Peter Venkman (as played by Bill Murray): What?
Spengler: Don’t cross the streams.
Spengler: It would be bad.
Venkman: I’m fuzzy on the whole good/bad thing. What do you mean, “bad”?
Spengler: Try to imagine all life as you know it stopping instantaneously and every molecule in your body exploding at the speed of light.
As previously written about in this blog, I’ve always been a proponent of Alyssa having her own life at school without having to answer questions about why her big sister says or does certain things. It’s not that I don’t think Alyssa can handle it—I’ve seen her educate others both young and old at a level so high that it would make the most decorated BCBAPhDMBAMDEsquire pass out in awe. I just don’t want her to have to. That’s why I wasn’t initially delighted when my wife Jen decided Skylar (accompanied by her ABA pro and BCBA) would attend Alyssa’s school talent show last evening. Sure, we were armed with a ridiculous amount of support but taking Skylar places even without supports has never been an issue for us—taking Skylar places without her having issues is more the problem. While we generally don’t mind Skylar struggling in public, as it’s our job as her parents to normalize her life as much as possible, it’s also our life to do the same for Alyssa and having a big sister melting down like an infant is not normal. Skylar attending this talent show was crossing the streams.
Egon Spengler: I have a radical idea. If the door swings both ways, we could reverse the particle flow through the gate.
Peter Venkman: How?
Spengler: We’ll cross the streams.
Venkman: Excuse me, Egon, you said crossing the streams was bad. You’re gonna endanger us, you’re gonna endanger our client. The nice lady who paid us in advance before she became a dog.
Spengler: Not necessarily. There’s definitely a very slim chance we’ll survive.
Not surprisingly, Skylar did just fine during the eating portion of the evening, dining on multi-cultural cuisine and several dozen desserts without incident. But when the lights went down for the show, my heart began to race. Alyssa had enough on her plate as a seven-year-old playing piano in front of a crowd for the first time. A big sister melting down on top of that didn’t seem fair.
When the first group of performers took the stage, Skylar predictably dealt with her anxiety over being in a strange place mixed with the expectation she remain seated and reasonably quiet by perseverating. Over and over again, she asked “Why did I get a break for one million minutes?” When her ABA Pro and BCBA didn’t bite, she turned to the biggest sucker she knew for affirmation: She turned to me.
Skylar wanted me to reply “because you’re cute” but I couldn’t, even as her voice began to escalate to “scene” levels. Replying to a question from my older daughter based in perseveration and the need to script/gain attention from others is about the worst thing anyone can do if they want her to stop. Thus, my response had to be no response at all. The problem with ignoring Skylar then and there was that it didn’t matter if a meltdown presented a learning opportunity for her to realize throwing a fit doesn’t equate to getting her own way. What did matter then and there was that if she melted down, all life Alyssa knew when it came to her autism-free safe haven school would stop instantaneously and every molecule in her body would explode at the speed of light.
Skylar took a break from asking me the same question to use another of her coping mechanisms—the old bathroom request. Her workers granted it and I took the opportunity to move away, as I was obviously the target. Still, I cringed in anticipation of hearing her yelling behind me or watching leave in a tizzy while Alyssa hid her head in shame but neither of those things happened. Two things that did happen were Alyssa kicking major ass on the piano playing “When the Saints Go Marching In” and “London Bridges”, and Skylar kicking major ass too—that is to say, she kicked perseveration’s ass majorly.
By the end of the show, Skylar was singing along to a young lady performing Owl City’s “Good Time” and requesting to sing “Unconditionally” by Pink in her own school talent show. She helped herself to more food and played around other kids, including her sister. She also approached adults and asked random questions, all of which were answered patiently. One exchange from our night will stick with me in the future when it comes to Skylar and Alyssa’s school:
Skylar: How old are you?
A woman: How old do you think I am?
The woman (laughing) I’m a bit older but I love you for saying that!
Skylar (in a matter of a fact tone): I love you too.
We crossed the streams and lived to tell about it.
The somewhat evil expression on Skylar’s face pre-show didn’t exactly give me confidence she’d do well as a spectator but she ended up having an excellent time watching her little sister play the piano
Long before I was the Autism Dad of Skylar, I was a fledgling novelist not yet 30 years old. I had what appeared to be success almost out of the gate, procuring a coveted literary agent just a few months after sending out query letters for the manuscript I’d finished (ha-ha!). In mid-2001, I entered into a six-month contract whereby the agent would pitch my work to publishing houses. The future looked bright, even when the agent wasn’t able to sell my book within the agreed upon time frame. She claimed it wasn’t the material but a suddenly volatile book market and that I should keep at it.
Keep at it I did. I left my job as a Day Program Director at a program for adults with special needs, in part, to provide shared living to my favorite individual there whom my wife Jen and I wanted to become a part of our hopefully growing family, and, in part, to have free time during traditional working hours while still drawing a good salary. The free time not only meant our future kids wouldn’t need to be placed in day care, it also meant I could have more time to pursue agents and tweak my finished (ha-ha!) book in the unlikely event it needed any fixing. I even began work on the next one.
I sent out dozens of query letters but instead of getting the positive responses I’d anticipated, I mostly received form letters rejecting my proposal. Still, I remained undaunted, as virtually every successful writer I knew of experienced the exact same thing. The agents who didn’t ignore my proposal asked for material such as the first 50 pages, which I was happy to oblige. Similarly to when I’d gotten my first agent, I figured the work itself was my surefire entry into this exclusive world.
I was dead wrong. I received vague-but-polite rejection letters in response, praising aspects of the writing but claiming it “wasn’t a match” for what they sold. I wasn’t terribly upset, however, as my priorities changed dramatically when Jen gave birth to Skylar, our firstborn. I had no intention of giving up on my writing dreams just yet but I did need to take a short break. Little did I know the short break would last nearly six years.
The first several months of Skylar’s life was a challenge unlike any I’d ever faced. I’d never even been around a baby, let alone served as the primary caretaker for one. I had very little idea what I was doing and, unlike writing, nothing came naturally to me. Unfortunately, things I believed to be challenges at the time paled in comparison to what was to come.
When Skylar reached nine months, we began to notice her development had not only stalled but was heading in the wrong direction. She was no longer meeting milestones and appeared extremely detached, staring incessantly at ceiling fans and not responding to much of anything verbally. She tapped things for hours on end and displayed little emotion or ambition to explore her surroundings. Jen and I were both in the human services field but only my wife had the foresight to suspect autism. I, on the other hand, suspected Skylar’s struggles were the direct result of being stuck with an inexperienced, unskilled father during the day. Even though I was trying extremely hard to be a good parent, what the hell did that matter? There are no points for effort when it comes to parenting. I had to improve, leaving me no time to sell a stupid book.
Our pediatricians—as they were trained to do—downplayed the possibility that Skylar’s delays indicated autism. In fairness to them, the intensity of my concerns didn’t exactly match those of my wife, making Jen look like the type of worried first-time parent who needed constant reassurance everything was okay. And in defense of me, Jen absolutely did fit such a profile, as autism was hardly the only malady she’d diagnosed Skylar with during our daughter’s first year of life.
Skylar around the time we started to notice her development had stalled
The pediatrician suggested bringing Skylar to an ear specialist, as she’d had several infections over the previous few months. The ear specialist looked in her ears and immediately remarked they “looked like hell”, so much so it was questionable if she could hear much of anything. It was a huge relief, as the run of infections lined up perfectly with the time she began to fall behind developmentally. That had to be it. She didn’t have autism and I was off the hook for sucking as a father. The tubes the doctor was to insert would solve everything. I was so relieved I even began to think about resuming work on selling my book to agents.
The tubes he inserted improved Skylar’s hearing but solved nothing. She continued her detachment from the world around her, making no eye contact and developing zero language skills. She played with toys incorrectly by spinning wheels or slapping them and had no sleep pattern to speak of. Meanwhile, her cousin Jenna, born just two weeks after my daughter, seemed likely to go on a spoken word tour and teach at a university before reaching the age of two. Jen continued to insist it was autism but nobody else seemed to agree, most of all me. Skylar’s problem was her awful father but I was getting better and so would she. Any other possibility was too horrible to consider.
Reality was forced upon me when Skylar was diagnosed with autism at 18 months by not a doctor but a comprehensive study at Boston University. People immediately told me how lucky she was to be born to parents who would know what to do. Right. Maybe she was lucky to be born to Jen but I sucked so much that I couldn’t even admit my kid had autism until it was way too late. I’d been a delusional coward and my poor little girl was probably doomed to a life of solitude because of it. I would never connect with Skylar.
For obvious reasons, I continued to ignore my book but that didn’t mean I didn’t spend a ton of time reading. I needed to educate myself about what my little girl was facing and how to best help, as all of my professional autism experience was with adults, not kids. My hopes were raised when I noticed that more than one of these books spoke of a miracle diet that had “cured” kids with autism. It occurred to me that the claims were farfetched but, then again, how could more than one person have the same story? It didn’t seem harmful so why not give it a shot.
The diet possibly helped regulate Skylar’s sleep pattern and she made great improvements across the board over the next 18 months, though the huge increase in the volume of her direct services resulting from the official autism diagnosis directly coincided with her surge. Maybe I couldn’t help my kid beyond defrosting a delicious Kinnikinnick donut that fell within her gluten-free-casein-free (GFCF) diet but I was going to at least oversee the miracle of her recovery. I even started to dabble in selling my book again, sending out query letters but not bothering to read or edit the material because it was, after all, finished (ha-ha!). I also trained to become an educational advocate for kids with special needs.
We eventually determined the GFCF diet, while not harmful, didn’t make a lick of difference in Skylar’s autism while making her even more of a social outcast so we dropped it. Nonetheless, her improvement, outside of occasional regressive periods, was steady. She was talking in short phrases, fairly well-behaved, and seemed happy enough as she entered the public school system. I spent the next few years working steadily as an advocate and volunteering for non-profit organizations in increasingly high profile, time-consuming roles that kept me from any actual writing beyond the occasional query letter. It was just as well, as I continued to get vague, polite rejections or ignored altogether. It didn’t bother me, though, because who the hell cared about selling a book when I had a kid with autism to save and other kids with special needs to help? It wasn’t until I received a particularly blunt rejection letter that my passion for writing was reinvigorated.
The letter basically said my voice in the book was boring (I was writing in third person perspective) and it contained a ton of clichéd material. What? Sorry but my friends and former agent who’d read my work would strongly disagree, sir. Sorry you wasted your postage to share such a garbage take. Obviously, this particular agent just didn’t get the deepness of what I was conveying and decided to make stuff up to cover for his own intellectual shortcomings. As I dug through his notes, I realized the bastard who’d written these unkind things was…right on the money. Blessed (I guess) with years spent away from digging deeply into what I’d written, I realized the book was failing because it deserved to fail and the agent who’d represented me all those years ago had made a mistake in doing so. As for my friends, well, they were my friends and, thus, far more likely willing to look past major issues, keep reading, and focus on the positive than would a person with whom I had no affiliation.
With Skylar entering first grade and my younger daughter Alyssa thankfully developing typically, I said goodbye to special education advocacy (the money I made wasn’t commensurate with the time it consumed) and set about reinventing the book in a voice that wouldn’t be boring in the least—ten of them, to be exact—in first person perspective. Maintaining coherence, of course, would be a challenge, as I was taking on a literary task more absurdly overwhelming than attempting to cure my kid’s autism by following the lead of 90’s MTV game show hosts and doctors with questionable-at-best credentials.
The initial results of the revamped book— much like Skylar’s development for the few years that followed—were mixed and exhausting, even though I didn’t work on it with any type of consistency. She struggled for the most part at school and home. Meanwhile, nobody who read the updated, more ambitious version of my novel seemed to like it (versus almost everyone liking the lesser version years before).
I took yet another long hiatus from writing to accept a job as a day program director for almost a year and expanding my roles volunteering for everything under the sun. But, as chronicled in previous entries of this blog, my decreased presence in my older daughter’s life, even just as the point person to coordinate and advise, proved disastrous, and I had to leave the new job. Hey, at least maybe I didn’t suck so much as a Dad after all.
Unfortunately, continuing to suck as a writer was something else altogether. Even when I had bursts of effort with the book, I couldn’t figure out what I was trying to accomplish with it anymore. That’s when a conference with the slogan “Write More, Suck Less” caught my eye. It was the Southern California Writer’s Conference (SCWC) http://writersconference.com/sd/
in February of 2013. It was time to put up or shut up.
For those six months leading up to SCWC, I worked tirelessly to make my new version of the book much clearer and more focused on story than technique. I finally started getting positive feedback from readers again, though I still knew them all personally. I went to the conference nervous but confident and, by the time it ended, not only had the mostly positive feedback continued from fellow writers I’d never met but I also had a clue about how the book business worked for the first time. Best of all, I met some people I’m now honored to call friends and have had the thrill of watching them find success with their projects over the past several months.
I returned home on a mission. I spent the next year addressing issues in the book I’d learned of through feedback at the conference and then sending it out to a wide variety of readers (most of whom I didn’t know this time around). The praise continued by and large, so much so that I hired a professional editor with whom I have great chemistry. He’s helped me bring the book to the point where I feel as though it’s one draft away from being a viable candidate for representation and/or publication. I returned to the SCWC last weekend with high hopes for another great experience, hopes that took a big hit when I contracted food poisoning on day two.
When I wasn’t shivering and vomiting in my room while missing out on great workshops and seeing people I’d been looking forward to seeing again for a year, I moped. The food poisoning was the perfect symbol of my star-crossed journey with this book and as a writer. It didn’t matter how much I’d improved, how hard I’d worked, or how I’d shown courage to get my stuff in front of others—3,000 miles from home no less. There are no points for effort when it comes to publishing a novel. The book and my writing aspirations were doomed too.
I went on Facebook to leave a post on the SCWC page explaining my sudden disappearance, as walking from my room to tell people in-person in when I was so nauseous was risky (one unfortunate hotel trash barrel learned this firsthand). I was hardly a celebrity at the conference but enough people knew me there to probably at least wonder where the hell I’d disappeared to. Shortly thereafter, Skylar, as she’s apt to do, stole her mother’s phone and decided to also go on Facebook. In the process, she noticed my post. A few minutes later, I received the text in her inimitable style asking if I had thrown up.
Aside from the complete weirdness of the scenario, her text was normalcy personified—a daughter asking her father who was away on a trip if he was okay after finding out he’d taken ill. My spirits were bolstered immediately. Maybe my effort in trying to write hasn’t yet mattered from a publication standpoint but my efforts as a parent do matter. I realized right there that no matter what happens to my book, my writing odyssey has been a success. Skylar and I are connected. She’s not doomed to a life of solitude at all.
I’m not sure I’m a writer but I definitely try. The MA is written in because the tag mistakenly read CA and people I didn’t know were wondering why I had a Boston accent. I also think the CA reflected an unconscious wish I lived out there on the part of the Conference organizers and, really, who could blame them?