Archive for January 2014

Grounded   2 comments

Skylar Chart

One of the following things is not like the others…or so it seems.

  • A good report card
  • Making a sports team
  • Praise for high character from a teacher or Principal
  • A significant amount of friends
  • A flat chart

The first four things listed are all common sources of pride and causes for celebration for parents when it comes to their child and school. The final thing, while appearing atypical to most, was definitely a source of pride and cause for celebration for me when it was sent home yesterday.  We often associate soaring as a positive when it comes to matters of education but when it comes to that chart, Skylar, and me, it turns out that grounded is the key to success.

As evidenced by the soaring dots of 2012-2013, grounded has not always been the case for Skylar at school and my soaring denial was to blame.  It all goes back to her IEP meeting at the end of her second year of kindergarten (Yes, she required not one but two years of notoriously rigorous kindergarten.  Such a thing would be a red flag to most but, as you might have guessed, this isn’t a blog entry where I’m going to come off terribly wise.)  The meeting was led by a TEAM Chair who, like most (not all!) TEAM Chairs I’ve encountered, didn’t exactly give off the vibe she had my child’s best interests at heart.  When I raised the possibility of Skylar being placed full-time into a full inclusion classroom for first grade, she emphatically shot me down.  I rolled my eyes on the inside, as I felt her point of view had more to do with the school district not wanting to potentially hire a 1:1 down the road to keep Skylar in the least restrictive setting possible than an informed opinion but, informed or not, her opinion was consistent with past TEAM Chairs and the district as a whole.  Plus, what could I really do if the rest of the TEAM agreed? That’s when something interesting occurred: the rest of the TEAM didn’t agree and stated, on the record, Skylar could handle full inclusion in first grade.  Wow!   My pride soared, even as I failed to grasp the in first grade portion of their statement and substituted it with forever.

The TEAM Chair continued to protest.  She comically kept getting up to leave the room and make phone calls only to come back with different compromise offers all designed to keep my daughter out of full inclusion.  I replied emphatically each time that I would only sign an IEP placing Skylar in a full inclusion setting, where access to typically developing peer role models and the true curriculum awaited.  The rest of the TEAM backed me completely and it turned out spectacular…in first grade.

First grade was a dream year for my daughter.  Her teacher, para, and classmates were all amazing and she thrived both behaviorally and academically, even without the 1:1.  I sat at her IEP at the end of that school year giving the TEAM Chair the middle finger on the inside and barely listening to warnings from the educators and therapists I so liked and trusted about how the abstract nature of the material in second grade may be too much for Skylar and it could manifest itself in negative behaviors so why not pull back at least a little with the full inclusion to start second grade and consider additional staffing if necessary?  I watched the TEAM Chair stare daggers at the teachers and therapists but I wasn’t processing the actual reason why because I was stuck on the whole pull back on full inclusion portion of the conversation.  What?  No way!  Seriously, the kid had two errors on spelling tests all year in first grade but second grade was suddenly going to be some big problem?  Jeesh.  Two spelling errors in a single school year. Was that a record of some type? It had to be.  She was college-bound! Sure, she had little to no idea what any of those words she spelled correctly actually meant but still—two wrong all year! I was so busy soaring that I failed to read between the lines that maybe it was time for me to push for the 1:1.

Grade two didn’t start out as dreamy unless you categorize nightmares as dreams. I began getting notes in Skylar’s communication log about her aggressing towards the para but I didn’t panic.  Sure, Skylar had never been violent before but it was a new para and she was obviously just testing.  I figured her negative behaviors would stop soaring.  I was wrong, as they worsened to such an extent the classroom teacher bravely and heroically put her neck on the line at an emergency TEAM meeting and stated flat-out Skylar could possibly handle full inclusion in second grade but only with a 1:1 staff person. The school district, to its credit, didn’t (at least openly) dispute this and a 1:1 was hired for my daughter. Surely, this would prove the fix.  Wrong again.

At Skylar IEP, the TEAM suggested partial pullout with the 1:1 accompanying her at all times would be best for her headed into third grade but I rejected the notion. How was she going to get into college unless she was pushed the same as other kids in her grade?  If the difficulty of the work or expectation she remain on-task was stressing her out, I was sorry to hear it but there were behavioral interventions yet to be tried that could help with that, especially with a new school BCBA we liked on board.  Third grade would be better.

It wasn’t. Academic progress was largely non-existent but Skylar’s aggressions soared to the point of being felonious assaults towards her poor 1:1.  I felt bad, of course, but I reasoned dealing with such things was the 1:1’s job and if she wasn’t suited for it, they could transfer her to another child and find one who was.  I remained idiotically closed off to the notion Skylar couldn’t handle full inclusion until I began getting reports kids were crying because she was scaring them. Suddenly, a ton of bricks landed on the wall that had been blocking my sense of reason.

My daughter had always been loved, accepted, and included by kids and parents alike at her school but her newfound (in retrospect, only “newfound” to me) volatility was putting that at-risk. Plus, I loved those kids and the last thing I wanted was for Skylar to make school a terrible experience for them.  I finally conceded full inclusion may not be the place for my daughter after all and requested to move her to a sub-separate classroom setting for half of the day. But it was too late. The overcrowded school no longer had the physical space necessary for such a classroom, necessitating a move to a different school within the district to meet her needs. Had I been more open-minded prior the third grade and actually put aside my disdain for bureaucrats and foolish pride that  my daughter with autism could do the impossible and instead listened to what people who I respected we saying about my daughter, maybe such a classroom would still exist. I had blown it for my little girl.

I hated the idea of Skylar going to a different school. She was already socially inept and introducing her one-of-a-kind act to a bunch of kids who hadn’t known and accepted her since kindergarten (years one and two, no less) potentially doomed her to ridicule and loneliness instead of tolerance and acceptance. What had I done?  I was incredibly guilty over my screw up and what do I do when I’m incredibly guilty over a screw up?  I read.  Yup, it was really time to soar!

I headed straight to Amazon’s website. Was it to order some type of psychology book for myself to get to the bottom of why I’m such a moron? No, it was to purchase a book about homeschooling a child with autism.  Actually, since it was an idea that was 2x the awesome, I bought two books about homeschooling a child with autism. Sure, I didn’t have the patience with Skylar to teach her to zipper her coat but what possibly could go wrong?  Fortunately, my reclusive sense of reason again made an appearance and I never found out.  As awful as it would be for Skylar, a new school in the district was the only realistic solution and, when that inevitably failed, I’d fight for an out of district placement (even though I’ve never wanted her outplaced).  Yes, once again, I was viewing my little girl as more prop than a person.

I was one signature away from my master plan beginning when my logic finally became grounded enough to allow me to think effectively outside the box.  I loved the new BCBA and she had great ideas she’d put into place for the smaller kids with autism entering the school while most of the older kids with autism with behavioral needs had been sent elsewhere. But why couldn’t the remaining ones like Skylar stay?  Space?  That seemed an easy fix.  I knew a new Principal would be hired the following year. I had no problem with the old Principal, mind you, but maybe the new one could have direct experience at a program for kids with autism and know how to fight to get resources? If Skylar could just get through third grade, there was the potential to keep her where she belonged and meet her educational needs.

It was time to put my advocacy skills to use for something productive for the first time in a few years.  With the help of two other groups of parents, my wife Jen and I pushed hard with the district to provide the BCBA what she needed both for the present and future.  I then assured Skylar’s phenomenally  patient  classroom teacher that I couldn’t have cared less what my daughter did or didn’t do academically the rest of the school year and would sign anything I needed to sign to take the pressure off of everyone. Finally, I made a point of apologizing in advance to the parents of the kids in her class for my daughter’s behavior but their responses were almost universal: we love Skylar and we want her to stay.

Stay she did. She and everyone else survived the rest of third grade.  The school hired a principal with a background educating kids with autism, a special education teacher with the same profile, and found space to create a sub-separate classroom for her and other older students with autism who needed it.  Skylar is still included with her typically developing peers during fun things like recess, lunch, and special classes like music but is able to retreat to a quieter, less pressurized setting for academics. My modest aspiration for her entering fourth grade was to simply decrease her negative behaviors but, as that’s occurred, her schoolwork has steadily improved.  I am overjoyed.

I realize Skylar’s story when it comes to school is far from finished and there will be bumps and dips—both good and bad— along the way but I will never again rise or fall with them.  I am grounded.

 

Diamond Is the Sky now has a Facebook page at https://www.facebook.com/#!/diamondisthesky

Posted January 30, 2014 by seandal in Autism, parenting, special needs

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The Person I Admire Most In the World   4 comments

Alyssa and Skylar sleeping

For many parents of people with special needs, our number one fear in life is what will happen to our child when we die.  I’ve even heard some special needs parents say there are times they almost hope to outlive their child.  It seems incredibly backwards and wrong but I absolutely understand this mentality.  What will become of our vulnerable kids when they’re no longer young and we’re no longer around to protect them?  To many of us, it’s a mystery just as foreboding as death itself.  The natural coping mechanism is to take solace in the existence of our typically developing children like my daughter Alyssa.

Solace is fine but actual expectations are not.  Just because somebody like me or my wife Jen is the parent of a child with special needs doesn’t mean the world owes us anything. Our typically developing kids don’t, either. I had this epiphany roughly ten seconds into Alyssa’s life. After thanking God she was healthy, I then thanked God she was a girl. Why?  A girl, I generalized, was more likely to care for a sibling with autism like my older daughter Skylar than a boy would be. As I listened to my tiny newborn daughter cry, it suddenly struck me just how vile my previous thought was. Alyssa was a human being in her own right, not a pre-destined savior for somebody else. I made a promise to myself from thereon I would never put any pressure on her to be anything but the best person she could be.  And I’ve sincerely done my very best to keep this promise but have often felt as though I’ve failed her. Oddly enough, her general awesomeness towards her big sister and autism matters in general have been the source of my angst.

I think Alyssa's outgoing, truthfully often loud nature makes her benevolence towards her sister and other kids with autism more effective because so many eyes are generally on her.

I think Alyssa’s outgoing, truthfully often loud nature makes her benevolence towards her sister and other kids with autism more effective because so many eyes are generally on her.

Two stories, in particular, stand out.  It’s because Alyssa not only displayed great compassion for people with autism but led the way for others to do so, as well.  The first was in pre-school a few years back. Alyssa, not yet four, was in a class with about a dozen other kids, including one who clearly had some issues setting him apart from everyone else.  My younger daughter, who developed radar for such things from the time she could put two words together, immediately recognized the source of these issues and expressed her concern to me. “Poor lil’ ossism boy, Daddy.  He doesn’t wanna play with anyone and nobody wants to play with him but I pat his head and say ‘it’s okay, lil’ ossism boy.’  I tell my friends they should play with him, too.”

I was blown away for a number of reasons, not all positive, but decided to assist her in her quest to befriend this child and set an example for others to do so. It wasn’t too difficult because I had the real world example of Skylar to draw from. “I don’t think it’s that he doesn’t want to play with anyone,” I replied. “I think he’s not yet comfortable playing with people he doesn’t know. Maybe you could just give him a moment of your time every day and play near him?  Maybe he’ll come to you when he’s ready if you do this enough? Maybe your friends will see this and try to do the same thing? It would probably work better than you telling them they should do it.  Also, try not to call him ‘lil ossism boy’.  He probably feels different enough already.”

“Okay, Daddy,” my younger daughter shot back.  About a week later, I arrived at her school a bit early for pickup and saw that not just Alyssa but several other kids from the class were playing near the kid she had been concerned about.   It wasn’t a stretch to assume my little girl had something to do with this welcome development. My overwhelming pride, however, was mixed with sadness.  Alyssa should just be a pre-school student, dammit, not a play therapist.  Why did I advise her like I had?  Had I put pressure on her?  I may have broken my promise to myself.

Skylar and Alyssa just hanging out

Skylar and Alyssa just hanging out

My second story is from last spring. About nine months ago, Alyssa (who attends a different public school from her big sister to better insure having her own existence) was playing with some classmates at a playground when Skylar and I arrived to pick her up.  My younger daughter, who loves to work a crowd for laughs, decided it would be funny to whisper bathroom terms into Skylar’s ear along with the command she repeat the words for her friends.  Skylar did as requested, causing everyone present to laugh hysterically.  I wasn’t happy but decided not to embarrass Alyssa on the spot.  After all, she was generally a great sister and, as a kid, had the right to screw up every now and then.  I did talk to her later, though.

“Alyssa, you know it wasn’t right to script Skylar to say those things, don’t you? She trusts you more than anyone in the world and you took advantage of that.”

Alyssa’s lip began to quiver. “I was just joking, Dad. We were just laughing at the jokes.  Skylar was laughing, too.”

“You were all laughing at her—not with her—and you made her the joke, Alyssa.  Please don’t do it again.”

Alyssa began to cry and I felt awful. I didn’t feel that I was wrong in what I’d said, mind you, but that was small comfort in the moment.  She didn’t deserve to be lectured so heavily, especially since I would have done the same thing when I was six years old. Had I again broken my promise to myself?

Early this fall, Skylar and I returned to the playground.  Once again, there was a crowd of kids. “Alyssa, tell her to say ‘poop’,” one of them bellowed, causing the other kids to laugh.

Alyssa wasn’t among them, though. “That’s making fun of her,” she snapped, getting in the offending party’s face.  “Don’t do it again!”  A few seconds later, nobody else was laughing, either.  Yet again, I was both incredibly proud and mortified.  It was wonderful for Alyssa to stick up for her sister but what had I done in making her feel she had to do so?

It's best not to mess with Skylar when her little sister is around

It’s best not to mess with Skylar when her little sister is around

A few weeks later, over thirty little girls came to our house for Alyssa’s birthday party, including the one who’d requested Skylar say “poop.”  They played like maniacs, stopping only to work on craft projects like the bags many of them were designing to take home. Skylar, as she’s apt to do, misplaced her bag and began to throw a fit.   The kids present who knew Skylar weren’t too fazed and knew to ignore her. The ones who didn’t know her, however, were understandably thrown off to see such rage over something so minor and wide-eyed whispering ensued. This was the exact reason I try to keep some separation between Skylar and Alyssa’s lives.  Why should Alyssa have to feel embarrassed?

My wallowing was interrupted by the child who requested Skylar say ‘poop’ emerging with the missing bag. “Here you go, Skylar,” she said. “I looked all around and found it.  It’s okay.” I rubbed my eyes in disbelief.  Not only had this particular young lady learned from her mistake to empathize with Skylar, my Alyssa had been the teacher!

Alyssa has shown a knack in her brief life to not only lead Skylar but others, as well, when it comes to matters of autism

Alyssa has shown a knack in her brief life to not only lead Skylar but others, as well, when it comes to matters of autism

When I praised my younger daughter the next day for being such a great role model, she had a response that warmed my heart/troubled me deeply. “Of course, Dad. Skylar’s my best friend and always will be.”

“Don’t say that,” I moaned.  “I mean, that’s great for her, Alyssa, but she can’t give back like you deserve. Be a good sister but you don’t have to be her best friend.”

She glared at me. “Are you saying she can’t be my best friend? That’s not up to you, Dad.”

It was time for another epiphany.  Sure, I had no right to tell her she had to feel responsible for Skylar in any way or devote part of her life to her big sister but I also had no right to tell her she couldn’t. Maybe being Skylar’s best friend/savior was just who Alyssa was and, more importantly, wanted to be.  I realized I’d better back down real fast. “You’re right, Alyssa.  You can be whoever you want.”

Note: I’m now on Facebook. Please visit and like my page at www.facebook.com/diamondisthesky

Alyssa launched "Little Lissy Loom" for a period last fall to make and sell loom bracelets then give the money to charities important to her. It has sometimes bothered me why a kid so little would feel compelled to be so giving rather than just a little kid but I've come to accept that's who Alyssa is.

Alyssa launched “Little Lissy Loom” for a period last fall to make and sell loom bracelets then give the money to charities important to her. It has sometimes bothered me why a kid so little would feel compelled to be so giving rather than just a little kid but I’ve come to accept that’s who Alyssa is.

Diamond Is the Sky now has a Facebook page   2 comments

Skylar Driving

I’m excited to say this blog now has a page on Facebook: https://www.facebook.com/diamondisthesky! Please like and visit, as I will share smaller stories about Skylar on the Diamond Is the Sky Facebook page, as well as keep everyone notified of upcoming posts and other news.

Posted January 21, 2014 by seandal in Autism, Facebook, special needs

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Deinstitutionalization and Dr. Martin Luther King, Jr.   3 comments

Human progress is neither automatic nor inevitable… Every step toward the goal of justice requires sacrifice, suffering, and struggle; the tireless exertions and passionate concern of dedicated individuals.

–Dr. Martin Luther King, Jr.

The work of Dr. Martin Luther King, Jr. in bringing about massive social change extends well beyond his accomplishments in securing civil rights for African-Americans.  Not too long ago, it was the norm for people like my daughter Skylar to be sent to what were known as state schools.  These places weren’t actually “schools” but extremely overcrowded, taxpayer-funded warehouses that stockpiled people with special needs while providing little to no therapeutic or educational activity but plenty of squalor, violence, and sexual assaults for them to endure. Staff-to-student ratios were sometimes as high as 1:40 and as many as thirty kids would be crammed into one room.  Human waste filled the hallways and only the strongest and/or most fortunate ate with regularity.  Civil rights?  Human beings in state schools weren’t even treated as human. It wasn’t until Dr. King’s struggles during the Nineteen Sixties provoked national dialogue about equality for all citizens and changed the hearts and minds of millions that the road was paved for another, lesser known movement which took place in the Nineteen Seventies: the deinstitutionalization of people with special needs.

Dr. Martin Luther King, Jr. positively impacted the lives of millions of people, including those with special needs.

Dr. Martin Luther King, Jr. positively impacted the lives of millions of people, including those of people with special needs and their families.

There are books and websites that can educate anyone interested in what took place inside state schools. For this blog, I will share the stories of three amazing people I know who survived them.  The first is of a feisty, engaging man named Doug.  Doug had Down syndrome. He’d been born prematurely in the Nineteen Thirties and was so underweight that doctors simply threw their hands in the air and sent him home with his mother to die.  But it didn’t happen.  Against all odds, Doug’s mother nursed him to health with an eye dropper.  To her, Doug was a miracle but, to me, his survival was more about a great mother’s will than divine intervention.

When Doug reached school age, doctors and education administrators alike strongly suggested his mother send him to a state school to live so he could be “properly cared for.”  It’s easy for us now to question why parent would even consider doing such a thing but, back then, practically every parent of a kid with special needs chose that route. Plus, she figured, who was she to ignore the advice of experts?  Again, very few people in her position did.  She loved her son with all her heart and only wanted what was best for him so she agreed to send him away. Of course, like the majority of those other parents, she had no idea of the horrors awaiting her child.

Doug’s smallish stature and innocent nature made him a prime candidate to be victim to any variety of assaults by predatory staff persons and/or other students with special needs who’d become products of their hideous environment.  But it didn’t happen.  Against all odds, Doug was eventually discharged relatively unscathed during the deinstitutionalization movement.  For the second time in his life, though, his survival wasn’t due to a miracle but the will of an incredible person who loved him.  In this case, the person was Charlie, a then-young man about ten years older than Doug who’d been institutionalized around the same time.

Charlie was sent to the state school after stealing a car, an act chalked up by the experts to his need to be institutionalized.  While this was tragic for Charlie, who likely had an IQ well above the threshold for mental retardation, it proved to be a lifesaver for Doug.  Charlie protected Doug from being brutalized like he was his brother.  Unfortunately, I can’t say that Charlie was as fortunate as his little buddy in regard to being shielded from abuse inside the state school.  His haunting silence beyond an occasional polite “yes” or “no” towards anyone who wasn’t Doug and faraway stare told a story that probably indicated otherwise.

Life inside of state schools for people with special needs was not pretty.

Life inside of state schools for people with special needs was not pretty.

Doug and Charlie both passed away over fifteen years ago.  Doug led what felt like a fairly happy existence after being discharged, moving into a supportive group home with people who cared deeply about him and visiting his mother on weekends even as she neared the age of ninety.   I don’t know how Charlie’s life went because he was so guarded.  I do believe, on balance, his existence was an extraordinary one because he saved Doug.

                 Allowing and/or committing rapes, beatings, starvation, and the spread of diseases weren’t the only atrocities perpetrated by those entrusted to care for the lives of people with special needs in the decades leading up to deinstitutionalization. Bob (previously written about here http://www.autismresourcecentral.org/What-We-Offer/Online-Community/blog/my-friend-bob) endured a different type of inhumane treatment after being sent to a state school at the age of seven for being “a slow learner.”

“They asked me to join the Science Club but we never did any experiments, we just ate oatmeal,” he recalls.  This was because Bob and his fellow students were the experiment.  “They put radon in the oatmeal and fed it to us to see what would happen.”  Fortunately, Bob didn’t suffer many health effects but his best friend Walter, who was also victimized, wasn’t as lucky. “The poor guy was always sick until the day he died,” Bob remembers.

Walter passed away before the deinstitutionalization movement took place but Bob, after years of terrible residential placements, has finally found peace late in life with a provider he admiringly calls “The Boss.”  His days are filled performing volunteer activities mostly agreeable to him with friends at his day hab while juggling a number of female admirers throughout Central Massachusetts.  He even has a cellphone that he won’t put my name into because I am, after all, male.

Bob survived years in a state school to not only thrive late in life but to also provide a lesson to people everywhere of how to be cool.

Bob survived years in a state school to not only thrive late in life but to also provide a lesson to people everywhere of how to be cool.

I would never suggest Bob, Doug, Charlie, or anyone else was lucky Dr. King came along when he did because nobody forced to spend a significant part of their life in what amounted to Hell can be considered lucky in any way, shape, or form. But Dr. King’s sacrifices, vision, and leadership sparked the movement which ultimately freed people with special needs who were confined to state schools a lot sooner than it would have otherwise and, for that, I thank him. And I also thank Doug, Charlie, Bob, and everyone else forced to endure what they did for persevering.  Your bravery allowed people like my daughter the chance to lead a normal, productive life filled with love and free from abuse years later.  Like Dr. King you, too, are true American heroes.

Skylar 2012 Book 21

Posted January 20, 2014 by seandal in Autism, MLK, special needs

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The Autism Redemption: A Quick Follow Up   Leave a comment

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A couple of weeks back, I wrote of both my and Skylar’s very positive experience at a Unitarian Church http://diamondisthesky.com/2014/01/06/the-autism-redemption/. If you read the blog, first off, thank you, and second, you may recall her fascination with the ceremonial lighting of the chalice which took place in front of the entire church.  I’m pleased and proud to report that this morning, she lit the chalice for her classroom. Will this lead to her doing so one day for everyone in the church to see? Stay tuned…

Also, my next blog will drop earlier than usual tomorrow because it relates to Dr. Martin Luther King and I’d like for it to be available for reading throughout the day honoring him…and because I’ll be at the Bruins game during the usual 5:15pm publishing time and my 4gs on my phone don’t work so well at the TD Garden for some reason. But mostly for the former reason.

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Posted January 19, 2014 by seandal in Autism, Religion

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Dear Everyone In Every Seat On the Airplane   20 comments

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Earlier this week, a blog entitled “Dear Daddy In Seat 16C” (http://www.huffingtonpost.com/shanell-mouland/dear-daddy-in-seat-16c_b_4585865.html) went viral. If you haven’t read it, a businessman is kind, patient, and even helpful towards a 3-year-old with autism and her mother during a flight.  It’s a nice read and I couldn’t help but to recall having a similar experience after a flight I took with a person with special needs a little over a year ago.  This person wasn’t, however, an adorable little girl but rather a person I deem to be our society’s ultimate underdog:  a middle-aged adult with special needs.

My family has had the privilege of providing what’s known as shared living to a one-of-a-kind, amazing man named James for the past eleven years .  The back story of how this came to be is that James was my favorite individual at a day program I ran, my wife Jen and I knew how unhappy he was in his group home, and we decided to offer him the chance to live with us.  James took us up on the offer and the rest is history—a history that has done nothing but enrich our lives and those of our daughters Skylar and Alyssa, as James is truly a part of our family.

One of James’ longtime aspirations had been to visit the Rock & Roll Hall of Fame in Cleveland, Ohio, a ten-hour drive from our home in Worcester, Massachusetts that’s far too long for his tastes. This left us the option of flying, something James had always been too frightened to attempt. Such fear, of course, hardly makes him unique, as many people harbor the same terror, but that didn’t keep Jen and I from bringing it up to him periodically. He didn’t enjoy the subject and told us as much in no uncertain terms: He will never get married because he can’t get divorced if he’s not married and he’s never flying because he can’t crash if he doesn’t fly!  His logic was unimpeachable so we didn’t attack it head-on so much as adopt a subliminal approach to try to change his mind by occasionally presenting him with Rock n’ Roll Hall of Fame brochures and asking him to take look at their website every now and then.  Despite our oh-so-subtle efforts, he remained unmoved…until going on the computer and expressing intrigue over the Inner Harbor in Baltimore being all lit up at night and the dining possibilities it offered.  When I pointed out how Baltimore was a shorter, cheaper trek–one we could more easily drive back from if the flight  proved too much for him–James finally agreed to get on an airplane after years of prodding on our part.  If the Baltimore flight experience was a success, we would then fly to Cleveland in the  near future.

In preparation for the flight, we role played for months some of the aspects of flying that don’t involve flying at all but figured to be stressors for him, such as removing his baseball hat to go through airport security and balancing on a moving walkway while carrying a bag.  At the same time, we skipped out on any flight simulation or airplane desensitization programs because such larger things would only serve to build James’ anxiety rather than reduce it.  No, our best bet was to just get on that plane and hope for success that resulted in a future flight to Cleveland and the Rock & Roll Hall of Fame.

James was nervous when the day finally arrived but no more than I was.  What had I gotten us into?  James was a largely peaceful, considerate man who’d come an extraordinarily long way over the years but, like anyone else, when in a panic would behave accordingly.  I dreaded having to explain any screaming, yelling, seat kicking, or loud proclamations of how we’re going to crash to airport security as well as put up with all the dirty looks and demands to shut up from the other passengers we were destined to receive.  As the airplane started to move, I realized there was no turning back.  We were all in this together–me, James, and about 200 strangers.

James gripped my arm tight as the plane took off.  I reassured him he was fine but he wasn’t buying it and his voice began to escalate.  It wasn’t a major scene yet but it was growing and took a turn for the unique when he essentially climbed into my lap and hugged me with all his might, complaining about his ears popping. I fed him Mentos (James had long refused to chew gum) and there we were, just two dudes hugging it out and sharing candy at 20,000 feet. People looked over but I didn’t care, as I expected as much. What I didn’t expect were the nods of support they were giving us before quickly looking away.   Well, at least we’d been blessed with the right people to undertake this journey with.  James got to the edge of yelling a few times but never reached it, managing to calm himself back down to fit in fairly well.  By the time we landed, I was covered in sweat but relieved.  “You did it!” I told him over and over.  “The hard part is over.”  The look of trepidation on his face, however, informed me that it wasn’t.

 “I don’t know, Sean,” he replied.  “I didn’t like how it felt.”  He repeated these sentiments several times during our walk through the airport terminal and cab ride to the hotel.  “My ears kept popping. I thought my head was going to explode.”  What could I say in response?  To him, I’m sure it did feel that way, as an airplane ride can be an overwhelming experience for anybody, let alone a person with sensory issues.  “I’m not sure I want to fly back.  You said I didn’t have to.”

He was right but there were pros and cons to weigh. We considered driving but renting a car at one airport and leaving it at another was a pricey endeavor we determined we’d just as soon avoid.  We also discussed his aversion to long car rides and, while Baltimore to Worcester wasn’t as epic a drive as Cleveland to Worcester would have been, six hours in a car wasn’t something James would have enjoyed, either.  “I think I’ll give it one more try,” he finally relented. We decided to drop the subject for the rest of the day and just try to have fun.

When the morning arrived, James again wasn’t sure he wanted to fly.  I suggested repeatedly he chew gum to combat the ear popping and he finally agreed that if the popping lessened, he could fly and agreed to try the gum.  As the plane took off, I said a quick prayer we didn’t crash and he’d keep it together as well as he did on the first flight.  I also prayed the people around us would be as half as understanding.

My prayers were answered.  The actual flight home was a repeat of the first one in every way. Despite his occasional proclamations about not wanting to crash for all around us to hear, James’ main issue was the ear popping and general weird feeling of not being on the ground.  People again glanced over as he more or less sat in my lap but just like the first flight, everyone appeared sympathetic and respectful.   “Great job!” I told him, covered in sweat when we landed.  “You did it again!”

“No, I’m never doing that again, Sean,” he replied as we stood up to disembark.  “Never!  Don’t show me pictures of the Rock n’ Roll Hall of Fame, either.  I don’t like rock music anymore anyways.”

He may not have liked rock music anymore but that didn’t keep seemingly everyone we’d shared the flight with from treating him like a rock star over the next twenty minutes.  “Way to go”, “nice job”, and “you’re so brave” filled the air as people approached to pat him on the back.  This treatment occurred both on the plane and in the terminal.  He looked down and smiled in response each time, deservedly pleased with himself for having the courage to both try something he’d been so fearful of and to endure something so uncomfortable.  No, we wouldn’t be flying to the Rock n’ Roll Hall of Fame but the trip had still been a smashing success in my estimation and his, too. But he never would have been able to do it without the kindness of several hundred strangers. Thanks to all of them!

Posted January 15, 2014 by seandal in Autism

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Putting the Pieces Back Together   6 comments

Diamond Is the Sky logo

A glum Skylar cuddled with her confidant Rubie the Dog and played the you are a piece of me portion of Zedd’s song “Clarity” over and over on her iPad one night late last summer.  Meanwhile, her little sister Alyssa just bawled.  Their sorrow was justified because Miss Kelly, Skylar’s beloved ABA therapist, had just walked out our door for perhaps the final time.  She was off to pursue the prestigious Board Certified Behavior Analyst (BCBA) program at Simmons College in Boston and we, as a family, couldn’t have been more proud of her.  But we were also reeling, as Miss Kelly truly was a piece of Skylar and, by extension, us, too.

Miss Kelly promised to visit but if there’s one lesson I’ve learned both as a human services professional of fifteen-plus years and father of a child with autism for ten, it’s that goodbye for now usually just means goodbye.  Unfortunately, Skylar has learned this lesson, too.  My little girl was broken and there was nothing I could sincerely say to make her feel as though her pieces could be put back together.

Skylar seeks comfort from Rubie the Dog after Miss Kelly--alternatively her ABA therapist, big sister, best friend, and savior--leaves our home after her final shift

Skylar seeks comfort from Rubie the Dog after Miss Kelly–equal parts ABA therapist, big sister, best friend, and savior for almost two years–leaves our home after her final shift

Turnover is an unfortunate reality in human services amongst the people who actually matter.  For them, the pay is usually awful, the hours weird, benefits weak or non-existent, upward mobility limited, and appreciation from (too) many of their clients’ parents and employers lacking.  Complaints and blame thrust upon the people who actually matter, however, is generally plentiful, even when it’s not their fault. It takes a special person to be able to sift through all of this garbage and find fulfillment in their clients’ small, subtle gains (necessary for the big, noticeable gains their employer will invariably take credit for and profit from).  So what type of extraordinary person can not only rise above these drab, daunting circumstances but also excel?  A person like Miss Kelly.

I’ve been blessed with many wonderful therapists for my daughter over the past nine years but they mostly dealt with adorably harmless Skylar—the one who snuggled, laughed, and generally complied her way deep into everyone’s heart.  Adorably harmless Skylar, however, was not the version of my daughter that Miss Kelly was handed nearly two years ago.  No, for Miss Kelly, punches, kicks, pinches, attempted Brazilian Jiu-Jitsu submission holds, being screamed at, and epic tantrums over next to nothing were all-too-often an everyday reality of the job when working with my daughter.  Whenever I witnessed Miss Kelly neutrally absorb a beating from Skylar, a big part of me wanted to intervene and throttle my daughter:  How dare you treat somebody who cares about you so much so horribly, Skylar!  But my professional experiences had taught me long ago to stay out of Miss Kelly’s way and let her do her job. And do her job she did.

Skylar and Miss Kelly prior to my daughter's martial arts session. Even though the class was great for Skylar and preached non-violence, my daughter had a stretch of not following this important edict and Miss Kelly, a person whom she trusts as much as any in the world, was often the victim of her outbursts.

Skylar and Miss Kelly prior to my daughter’s martial arts session. The Peace/Love nature of her shirt represents unintended irony at that volatile stage of Skylar’s life. The martial arts class was an attempt to channel her considerable rage into something else and Kelly, despite sometimes getting the brunt of Skylar’s skills in this area, was still more than willing to help. This was in keeping with her willingness to do anything for my daughter.

Miss Kelly hung in there when so many others would have run away.  She saw her diligence pay off when my daughter finally turned the corner last spring (the culmination of which was detailed here http://diamondisthesky.com/2013/12/20/the-incredibly-true-story-of-my-daughter-with-autism-conquering-costa-rica/).  Such an accomplish not only produced an unwavering loyalty towards Miss Kelly from both Skylar and my family but also a likely co-dependency.  It’s hard to blame us, though.  We handed Miss Kelly our daughter’s very life and not only didn’t she drop it, she made it better against all odds.  How were we going to survive with her leaving?

Compounding our heartbreak was the fact Miss Julie, Skylar’s longtime BCBA, had left only a few months before.  While my daughter’s relationship with an overseer like Miss Julie obviously didn’t have the day-to-day intensity that it did with somebody always in the trenches like Miss Kelly, her loss had hurt us all, too—a lot.  Miss Julie had also inherited Skylar at her lowest point and been instrumental in helping her climb out of it, earning our eternal trust and devotion, as well.  My daughter loved Miss Julie as much as any BCBA who’d ever overseen her case as evidenced by her constant proclamations of “I want to be Miss Julie when I grow up” and often asked me where she’d gone. The truth was, she’d gone to do something better but how do you tell something like that to your own child?  My poor little girl was about to have a lot more questions with Miss Kelly leaving.

Both Miss Julie and Miss Kelly had promised to visit Skylar and I believed they had every good faith intention of doing so…just like past BCBA’s and ABA therapists had, as well, only to never come back.  I harbored no ill will towards any of these professionals, however, as I, too, had left similar positions with every intention of visiting the people who’d meant the world to me…only to find new people to whom this devotion also applied and no time to go back.  Again, in human services, goodbye for now usually just means goodbye.

Skylar and Miss Julie at last March's Team Skylar Fundraiser at Center Bar and Grille in Worcester. I consider this night to have started Skylar's climb back to a generally happy kid and, even though over 100 people were present, the most joy she got was from having Miss Julie and Miss Kelly there to celebrate with her.

Skylar and Miss Julie at last March’s Team Skylar Fundraiser at Center Bar and Grille in Worcester. I consider this night to have started Skylar’s climb back to being a generally happy kid and, even though over 100 people were present, the most joy she got was from having Miss Julie and Miss Kelly there to celebrate with her, which says a lot of about how highly she regards them.

I also held a certain degree of guilt over them leaving, even though I, from a rational standpoint, highly doubted their departures had anything to do with our service provider-parent collaboration.  Having endured overly critical/psychotic parents myself through years, I knew I wasn’t a difficult person for a professional to have around but that didn’t mean I was always easy, either.  When Skylar hit rock bottom last February, I abruptly insisted upon changes to her programming by switching her therapy hours from directly after school to the evening. My intent had been to provide my daughter a break in her day but I also knew this change risked Miss Kelly and/or Miss Julie being reassigned—as did they.  I believed they understood my ultimate goal was to help Skylar and keep them but, at the same time, how could they not have taken my risking their reassignment personally on some level?  I know I would have if I were them.  Had I been guilty of adding to the garbage they had to sift through to find fulfillment in their largely thankless job?  I, from an emotional standpoint, feared I had.

That’s why I was so relieved when Miss Kelly contacted me and my wife Jen on Facebook a few weeks before Christmas to set up a get-together with Skylar.  Relief, however, was mixed with caution, as I’d heard such things from others who’d worked with Skylar before (and said such things myself to people I’d worked with and their families) only for nothing to come to fruition.  Thus, I chose not to tell Skylar until Miss Kelly contacted me again to firm everything up a few days before Christmas.  I was ecstatic but my daughter’s initial and only reaction was typical Skylar:  “I want to go to the Ninety-Nine.”

A trip to the Ninety-Nine it was.  Miss Kelly and Miss Julie were due to arrive at 1pm but Skylar started looking out an upstairs window at our house at 11am.  The traffic was crazy because of last-minute holiday shopping and, when Kelly arrived at 1:10, Skylar ran downstairs, skipped “hello”, and went right to, “You were supposed to be here ten minutes ago and where’s Miss Julie?”  Miss Kelly, who knows Skylar as well as anyone, just laughed and hugged her, as did Miss Julie after she, too, was chastised a few minutes later.

I didn’t accompany the three friends to the Ninety-Nine but their experience also sounded like typical Skylar: “Sky told us she’s pregnant, drives a purple Saab, and is an airline attendant,” Miss Julie reported.  “Thanks for letting us steal your kid.”

Miss Kelly also enjoyed the reunion. “Skylar officially made my day as usual,” she said. “We laughed, we cried, we ate a lot of food. Thank so much, Sean and Jen, for letting Julie and I borrow her for a few hours.  She always knows how to melt my heart.”  But her heart wasn’t the only one that had been melted.

When Skylar got home from her outing with Miss Kelly and Miss Julie, she ran to Rubie the Dog and sat next to her bouncing with joy.  She had just learned that not only were Miss Kelly and Miss Julie still pieces of her– and her a piece of them–but also, for once, goodbye for now really meant goodbye for now.  She had been put back together.

Skylar walking Rubie--Pieces of Each Other blog

Posted January 13, 2014 by seandal in Autism

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