Archive for February 2014

Crossing the Streams   6 comments

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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.

Venkman: Why?

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?

            Skylar: Twenty-one.

           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

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

Destination Unexpected   11 comments

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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

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 reflects an unconscious wish I lived out there on the part of the Conference organizers and, really, who could blame them?

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?

Skylar and Seamus Steal a School Bus! (not really)   3 comments

Seamus chooses the one person he knows who will happily accompany him on a quest to steal a school bus to visit a local bakery: Skylar

My daughter Skylar is the type of magnetic kid who most adults are not only happy to receive attention from but grateful.   There have been many occasions where I’ve arrived at her school or a place where she’s receiving professional services to find BCBAs, teachers, clinicians, therapists, and other highly educated people alike doting on her with “big tickles” and fully engaging in whatever topic she’s fixated on at the time.  The same doting holds true for grown up members of the general public, who have often surrendered a cell phone or driver’s license to my daughter following just a single request or nuzzle from her. I keep waiting for this superstar treatment to end now that she’s no longer a little kid but it remains just as prevalent at age ten as it did when she was a toddler. Like many kids with autism, however, Skylar’s willingness to engage doesn’t extend to peers.  It’s in no way the fault of the kids but, rather, her brand of autism which pushes them away and leaves her, in the strict sense of the word, friendless. For her, kids speak too fast and are too unpredictable to allow her to let her guard down enough to be around them.  There are two exceptions to this in the world.  One, as previously chronicled, is her younger sister Alyssa.  The other is a boy named Seamus she’s known since the age of four.  In a world that in many ways neither child is comfortable being a part of, I believe them to be soul mates.

Skylar playing a game of Monopoly by herself. My daughter has a deep desire to play with other kids but no confidence to do so. Seamus has always been the one child besides her sister Alyssa she's felt at ease around.

Skylar setting up a game of Monopoly to play by herself. My daughter has a deep desire to play with other kids but no confidence to do so. Seamus has always been the one child besides her sister Alyssa she’s felt at ease around.

Skylar and Seamus were in the same pre-school class and hit if off immediately.  Their wonderful teacher, Miss Lisa, would tell me about how the two would often go off to a quiet corner of the room and play next to one another, neither quite capable of playing with another child at the time but finding fulfillment through the rare person they believed they could trust. I observed them to not have the exact same personality (Seamus is a lot more social with other kids than Skylar but strikes me as more guarded around adults) but, nevertheless, about as similar of one as two people within a spectrum can in terms of temperament, a love of danger, brilliance frequently disguised as nonsense, and a certain It Factor that made it impossible for anyone with a pulse not to become instantly smitten with them. Skylar, as she tends to do, revealed her feelings through song when she ran around singing “Share a Mame-us, share a Mame-us” throughout the Winter of 2008, substituting her then-pronunciation of “Seamus” for “Story” in the Sesame Street song “Share a Story”.  When the school year ended, I was saddened by the thought of them no longer being together but through fate, they both ended up at the same school for kindergarten in the district at the last-minute.  For this school, not only would serve Seamus and Skylar be brand new but kids with autism as well.

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Skylar and Seamus have a quiet, calming effect on one another that has run extremely deep since they met at the age of 4.

The school did the best it could but didn’t have the resources five years ago that it does today for kids like Skylar and Seamus, who need specialized help at times. It was a learning curve for many but the soul mates found comfort and solace in the other’s mere presence. As had been the pattern in pre-school, they rarely played or conversed with one another but together, a potentially overwhelming situation for each was somehow manageable.

Their bond continued into third grade when both hit the wall behaviorally and academically.  Skylar and Seaumus realized this and formulated their very own behavioral intervention to soothe one another during tough times by meeting at the back of the classroom to read together until everything was okay again.  Despite their deep bond, a change of scenery for both was desperately needed.    Never was this more evident  than one day when their class was short-staffed and understandably forced to simply maintain two kids who no longer fit into a mainstream educational situation.  Both chose to spend their time drawing while other kids worked on curriculum items. For Skylar, this meant an intricate, color-coded floor plan for a health club, complete with a urinal right out in the open and next to where a rack of dumbbells were to be located.  As for Seamus, his drawing detailed the mother of all elementary school heists: driving a school bus to Gerardo’s, a local bakery, with a smiling Skylar riding along (the picture is at the very top of this blog entry).

The longtime partners in crime never got to pull off their caper, as he moved to another school halfway through the school year.  The loss was significant for Skylar, as my little girl who seemed to crave solitude was, all of a sudden, truly alone in her mind for the first time ever at school.  Her lip would quiver at the mere mention of Seamus and the only way to cheer her up was to joke about them stealing a school bus and going to Gerardo’s.  Several weeks went by until a St. Patrick’s Day assignment, of all things, brought her some closure.

The front of our Team Skylar t-shirt from a run/walk to benefit a local autism resource center last year was inspired by a certain soul mate of hers.

The front of our Team Skylar t-shirt from a run/walk to benefit a local autism resource center last year was inspired by a certain soul mate of hers.

The kids in Skylar’s class were given the task of writing about an Irish legend.  Seeing a potato in our refrigerator sparked something within her. Combining her imagination, heart, and the projection of some Only Skylar autobiographical details, my daughter penned the following:

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 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.

The creation of Famous Seamus provided Skylar a sense of closure when her soul mate went to another school and perhaps introduced the concept of Potato Therapy to the world, as well.

The creation of Famous Seamus provided Skylar a sense of closure when he left to attend another school and perhaps introduced the concept of Potato Therapy to the world, as well.

Skylar and her Mom decorated the potato to create arguably the most fetching root vegetable to ever walk this or any other planet. Speaking of other planets, the two friends who often seem to have a great inner-life going on driven by a galaxy far, far away, have stayed in contact. They see one another practically every Sunday at church and have gotten together not to play but, nevertheless, feel contented in one another’s presence a few times. Plans exist for them to go out to dinner at Texas Roadhouse but such a pedestrian undertaking still pales in comparison to Seamus’ Gerardo’s scheme. This became clear last summer when I had the audacity to ask Skylar if she wanted to stop for a cookie at Gerardo’s. “No,” she snapped angrily. “I want to go to Gerardo’s with Seamus on a school bus on May twenty-third two-thousand-sixteen, not you!” Part of me wonders if Seamus would throw out the same seemingly random date if asked about their proposed adventure. They do, after all, speak the same unique language of soul mates.

 

Skylar and Seamus in Rocking Chair

Posted February 3, 2014 by seandal in Autism, friendship, special needs

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