Archive for the ‘friendship’ Tag

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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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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