Archive for the ‘friendship’ Category

Dance Progression   Leave a comment

“The tiny plant from the tiny seed grows on and on.  It doesn’t stop. It grows taller and taller. And now a flower grows on it.  People come from far and near to look at this flower. It is the tallest flower they have ever seen”–Eric Carle, The Tiny Seed

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In the fall of 2010, 8 kids with autism took part in a specialized class created by an autism parent and Jennifer LaFlamme, owner of Dance Progressions in Worcester, Massachusetts.  Of these 8 kids, one, Shawn Hebert, stood out at the beginning but it wasn’t just because he was the only boy.  “Shawn is a cautionary observer,” his great-aunt and guardian Nancy Merrill notes.  “He’s not one to be pushed too quickly into action.”

Indeed, while the other kids danced, laughed, played, and generally seemed to have a great time, Shawn struggled mightily, crying and hiding in the corner.  It was obvious the presence of so many strange people within a confined space bothered him greatly but he hung in there.   Equally important, Nancy, who has been through it all and then some with her great-nephew, did too. “I knew we were on to something.  Shawn bonded very quickly with Miss Jen,” she remembers.

Shawn and Miss Jen warming up

Shawn and Miss Jen warming up

Slowly but surely, Shawn’s willingness to participate increased as the class proceeded.  He was performing some of the moves and greatly enjoying the games designed to encourage self-expression, such as pretending to be an animal.  His magnetism began to shine too.   “Shawn has a smile that would brighten anyone’s day,” Tracie Brown, an instructor at Dance Progressions and one of Shawn’s original teachers states.

The initial autism-driven class proved a success, with two of the students achieving the Holy Grail, so to speak, of taking part in the studio’s annual recital on stage along with typically developing peers in front of hundreds of people.  Shawn wasn’t one of these two students but he stuck with Dance Progressions, returning for subsequent sessions until Miss Jen took a maternity leave.

The specialized class fizzled out but not his bond with Miss Jen, who had a knack for working with him.  She offered to lend her vast expertise in a 1:1 setting at a very modest cost to teach Shawn.  When she returned from having her baby, so did he, continuing to increase his physical skills, attention to task, and communication skills.  The physical movements combined with following verbal and visual directions served as a brain gym for Shawn. His vast improvement was most apparent to the person who’d know best: his great-aunt. “I was in awe,” Nancy recalls.

Shawn getting the routine down

Shawn getting the routine down

Things were going great in their sessions until Miss Jen again became pregnant, the visual of which threw Shawn off.  He’d poke at her belly before retreating and no longer had the same enthusiasm for dance.  It was a setback but Shawn, Miss Jen, and Nancy all persevered.  He stopped taking lessons when Miss Jen took her second maternity leave but he was far from finished.

When Miss Jen returned last fall, Shawn did too–with a new person in the mix: Dance Progressions Competition Team Member Mariah Bryant. “Mariah was introduced slowly,” Nancy explains.  “He got a kick out of having two ladies by his side and took to Mariah in short order.” Soon, two ladies became one, and Shawn had a dance partner.  “The eventual separation from two partners to one was a well planned transition by Miss Jen,” Nancy notes.

Shawn and his dance partner/BFFL Mariah

Shawn and his dance partner and  friend Mariah

The feeling is mutual. “Shawn is my BFFL,” states Mariah, a high school student studying Early Childhood Education.  Miss Jen agrees. “Mariah and Shawn are a great mix.”  The BFFLs warm up together, practice steps, and then perform a routine to a song appropriately titled Give A Little Love.  Shawn, who is almost entirely non-verbal, makes his affinity for his dance partner quite clear with frequent smiles and hugs. “Shawn loves dancing with Mariah,” says Nancy.

Dancing his heart out

Dancing his heart out

Shawn’s weekly dance lesson with Miss Jen and Mariah has started to carry over to other settings. “At home, Shawn started moving about practicing steps such as the chasse side-to-side, skipping, and recently, the toe-heel-tap,” Nancy marvels. “I didn’t know what or who he was imitating until I saw him practice the same steps with Miss Jen. It’s the funniest thing to see him break into dance steps without music. I think he’s imagining the music as she does it.”

Miss Jen has had Shawn's back since day one

Miss Jen has had Shawn’s back since day one

It’s a good thing Shawn is practicing his dance skills because, on Friday, June 13th and Saturday, June 14th, he will take part in the Dance Progressions 2014 Recital with partner Mariah by his side.  Nancy is thrilled.  “I have been on cloud nine since Miss Jen recommended Shawn participate in the recital,” she gushes. “I cannot wait to see him on stage. I am so proud and happy for him!” It’s safe to Nancy is not alone in this sentiment.

Shawn and his Great (in more ways than one) Aunt Nancy celebrate another successful dance class

Shawn and his Great (in more ways than one) Aunt Nancy celebrate another successful dance class

To learn more about Dance Progressions, please visit their website at http://danceprogressionsma.com/.  Tickets for their always spectacular recital–with a performance by Shawn and Mariah–will soon be available to the public. Please visit my page on Facebook at www.facebook.com/diamondisthesky.com and like to keep up with the latest happenings of this blog and my non-profit under the same name.

Posted March 20, 2014 by seandal in Autism, dance, friendship, special needs, Uncategorized

The Train to Belonging   8 comments

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(The following true story is based upon the lives and recollections of some people I know extremely well. Their names have been changed to maintain a standard of confidentiality.)

It’s never too late in life for dreams to come true if you refuse to give up on them.  A remarkable man named Jacob is living proof of this.

Jacob was born to parents who did their best but weren’t equipped to raise a child with special needs.  Consequently, he was taken from them at a young age and placed into foster care.  Jacob didn’t feel physically or emotionally safe with his foster parents but, nevertheless, spent years in their home and came to think of them as family.  The foster parents thought of him the same way and intended to adopt him— until one afternoon when Jacob’s foster mother called him at summer camp to inform him they’d changed their minds.  Jacob never returned to the place he’d come to know as home, instead spending the next several years in state schools and psychiatric hospitals.  Sadly, Jacob actually felt safer at the state schools and hospitals than he had in his previous living situations but longed for a family to call his own.

When Jacob turned 22, he moved into a group residence with three other individuals.  Similarly to the hospitals and state schools, he loved a lot of the staff who worked with him, but didn’t feel comfortable around the other individuals, one of whom targeted him for teasing.  Jacob was a sensitive man and the teasing shook him to his core.  Although he could speak and write, he began to express his feelings over being teased and what he’d endured in the past by banging his head against hard surfaces and punching himself under his chin, actions certain to get a reaction.  Even though nobody at the house or his new day program physically harmed Jacob, the head banging was also a preemptive strike: He reasoned nobody would hit him if he hit himself first. Soon, the scars and marks on his forehead and chin rivaled those from the belt marks on his hips and backside from the years prior to his hospitalization.

Jacob made another preemptive decision. This time, it was to start wearing a hockey helmet to protect himself from himself.  Most of the people who worked directly with him felt this decision wise, as Jacob was keeping himself safe.  A few others not directly responsible for his wellbeing felt differently, believing the hockey helmet and chin strap made him look weird.  Some of the dissenters would state their opinion to Jacob.  Being criticized for wearing a helmet was devastating to Jacob, as the feelings it evoked went well beyond the sting of being labeled weird-looking.  To add to his sense of security, he also began to keep a ball of fuzz between his fingers and stack of folders under his arms at all times. These things, along with the helmet, represented armor to Jacob.

As the years passed, Jacob made great strides.  He’d become a favorite of many people who

worked with him, including Shane, his new day program director. Jacob and Shane weren’t that far apart in age and shared similar musical tastes.  They hit it off so well that Jacob essentially took over Shane’s office to use the computer and hangout.  Shane’s wife Jess also took an instant liking to Jacob one day while visiting.  Shane and Jess, who’d just bought a new house, discussed the possibilities of bringing Jacob into their home.

Shane and Jess invited Jacob over for Thanksgiving. It was the first time he’d been to anyone’s house for a holiday in years.  Everyone present was instructed by Shane not to mention Jacob’s helmet or how Jacob tested it before sitting down by gently banging his head off the table and lightly punching his chin.  Not surprisingly, Jacob charmed members of Shane and Jess’s family too, especially as he ate the McDonalds food he’d insisted upon over the standard turkey dinner…before proceeding to eat turkey as well.

Jacob had a good time on Thanksgiving but seeing a big family together brought back a flood of memories.  He began to have more trouble keeping himself under control at his day program and residence.  His struggles also manifested themselves in his armor, as fuzz balls grew larger, stacks of folders higher, and his helmet and chin strap tighter.

It was clear to Shane that everyone working with Jacob meant well but a lot of the approaches being used to help change some of his behavior weren’t the right ones.  One day, Shane walked into his boss’s office and told her he was quitting his job as day program director and wanted to provide shared living for Jacob.  The boss wasn’t sure it was a good idea but, to her credit, didn’t shoot it down completely.  Jacob’s guardian stood in agreement with Shane that taking Jacob in was a risk worth taking.

Others at the agency were understandably concerned the move would be a disaster but felt something needed to be tried to help Jacob and took a chance.  Their courage paid off quickly, as Jacob began to calm with the streamlined behavioral interventions and lessened stimulus of living with and competing for attention with other individuals.   Soon, Jacob was doing things he’d never done before, such as taking vacations, working, and attending rock concerts.  Holidays were spent with family instead of alone in his room while the fuzz balls shrank and the stack of folders lessened to one or two.  Not even Jess giving birth to two kids could slow his growth down—aside from the hockey helmet and chin strap he still wore.

Some people continued to criticize Jacob for wearing the helmet, hurting and embarrassing him deeply.  Shane’s public stance was to defend Jacob’s right to wear the helmet and chin strap, as well as point out how Jacob still tried to bang his head and punch his chin on the rare occasions the helmet and chin strap were off and actually ordered staff hold his arms to keep him safe: Wasn’t the helmet less restrictive?  The critics generally had no answer to this question but Shane’s bosses and Jacob’s guardian supported Shane’s point of view completely. The helmet and chin strap remained.

Privately, Shane sang a different tune.   When alone with Jacob on car rides, he’d occasionally broach the taboo subject of trying to remove the helmet, even if just for a matter of seconds, pointing out what a handsome man Jacob was and how he’d get girlfriends with no problem if people could just see his face.  Plus, Jacob always said he craved being normal but how could he be when he wore a hockey helmet and chin strap? Jacob didn’t enjoy these conversations, pointing out he didn’t want to wear the helmet but needed to.  As the years went on, the fuzz ball and folders disappeared completely but the helmet and chin strap remained.  Shane resigned himself to the likelihood Jacob would never feel safe enough in his home or life to shed his armor.  Wearing the helmet was the one obstacle Jacob could never overcome.

One Sunday night a few years ago, Jacob was to attend the holiday concert of a local radio station featuring the band Train when disaster seemed to strike: His chin strap wouldn’t buckle to the helmet.  Jess and Shane tried their best to fix the problem but couldn’t.  Compounding the problem was the fact the stores were all closed.  Jacob was resisting his urges to injure himself in the relatively calm environment of his home but what would happen when he was around thousands of people he didn’t know and his anxiety kicked in?  Shane figured he’d start punching his chin only this time there’d be nothing to protect it.  Jess, who was to take Jacob, disagreed, pointing out his continued safe behavior without the chin strap.  She suggested to Jacob he at least try to go without the chin strap.  Much to Shane’s surprise—and horror—Jacob agreed.

Shane waited anxiously with his smart phone by his side, figuring he’d be getting the call to meet Jess at the emergency room with a bleeding or worse Jacob.  Such a call never came, though.  When Jacob arrived home, he was beaming because Patrick Monahan, the lead singer for Train, had sought him out in the crowd to give him a high five. Jacob reasoned it was because the singer was proud of him for going to the concert without the chin strap.  Although the kindly singer had likely chosen to high five Jacob because he wore the helmet, Shane and Jess weren’t about to correct Jacob’s thought process. Suddenly, Shane had an idea: Operation Helmet Removal.

When Jacob was still flying the next morning from his encounter with Train’s singer, Shane brought up the possibility of him trying to go 10 seconds in a row with the helmet in his arms instead of on his head twice a day and then add trials as time went on.  Shane also pointed out how Jacob had made it through both a concert and the night without a chin strap so why not try to keep it going?  With great reluctance, Jacob agreed to both suggestions.

The plan was for Operation Helmet Removal to be a five year process. A few days into it, Shane jokingly placed a baseball hat on Jacob’s head during one of his 10 second sabbaticals from the helmet.  Ten minutes later, Jacob still had the hat on instead of the helmet.  By the end of the week, he was wearing the far more fashionable baseball hat instead of the helmet almost all of the time at home and, the week after that, almost all of the time at his day program too.  By Christmas, Jacob was helmet-free.  Four years later, he still is.

When asked, Jacob will admit he’s still surprised he was able to get rid of the helmet and chin strap.  He shouldn’t be, though.  He represents the very best of what a person can accomplish when they persevere against all odds. He represents the very best of people period.

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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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