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The Train to Belonging   8 comments


(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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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:! 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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