Time can be our ally. It can also be our adversary. For months now, I have been marking its passage with ever-growing dread. By the end of May, our school district will have fulfilled its mandate to educate my son. As its' obligation is being extinguished, mine is being rekindled with more urgency than I have felt in some time.
When we learned in 1993 that Jack was one of 10,000 who fit the diagnostic criteria for autism, we also heard that time was of the essence. Early intervention was the ticket to optimizing the outcome, though what the outcome would be, no one could say.
Like others on the front end of the autism tidal wave, we operated without a playbook. For years, we plied his needs with medication and supplements; speech, occupational, vision and auditory therapies; a brushing program and the family favorite: the gluten-free, casein-free diet.
By the time he entered high school, our family had survived greater challenges than Jack's autism: my husband's first heart attack, my breast cancer and our daughter's bone marrow transplant. In addition to being Jack's autism advocate, I was the family medical crisis manager.
In a blessed twist of fate, Jack was a perfectly matched bone marrow donor for his sister. And so it was that in the spring of 2005, the child whose needs had consumed me became the super hero he'd always dreamed he'd be.
By 2006, I was depleted by our serial life and death challenges. My focus on Jack had dimmed. Ordinarily, I would have been on top of the critical shift from middle school to high school. It wasn't until it was behind us that I grasped how much Jack had struggled his freshman year. Asked for his assessment of days spent mostly in the special education room but with a modicum of general education classes, he replied, "The kids in the resource room are too immature. The kids in the other classes don't have my disability." In his words, he didn't fit anywhere -- a precarious predicament for any adolescent but especially so for one who professed to have "PSE" -- poor self-esteem.
In the late summer of 2007, we heard about Hampshire Country School, a small boarding school in the mountains of New Hampshire that caters to bright boys with social challenges. In an era in which technology reigns, boys at HCS play board games and chess. They canoe on the lake and hike through the woods. They develop social skills and manners because that's what happens when you share meals and chores, and learn and recreate together.
We decided to go all in. We borrowed against a life insurance policy and flew the midwestern boy who had no sleepover experience to the place he referred to as "that old fashioned school."
Temple Grandin, world-renowned author and cattle industry professional with ASD, is Hampshire Country School's claim to fame. But HCS has a special place in my heart because during the years Jack lived and learned there both he and our family stepped back from the relentless therapy appointments, diets, pills and behavioral strategies and made important discoveries.
While living at home, Jack spent hours with his fingers on a keyboard or a remote. With electronic entertainment taboo at HCS, he discovered his creative side as a writer and artist. One parents' weekend he revealed it. During lunch we noticed paintings bearing his name were hanging on the dining room walls. Featuring vivid colors and robust brush strokes, his work was clearly inspired by anime, the Japanese art form reflected in his large Pokémon card collection. He has real talent, his art teacher said.
The greater surprise came when the boy who often spoke softly and haltingly participated in the student talent show. He stood before an audience of mostly strangers and, in a pristine voice, read a poem he had written for the occasion:
The Magic Forest
By J.M. Sullivan
The magic forest, with trees so blue and sky so green,
Where yales and unicorns frolic freely
Where phoenixes and dragons and pegasi and griffens and
Hippogriffs and rocs fly,
Where jaberwocks and gerrymanders and basilisks slither,
Yes, the magic forest, where satyrs and fauns and centaurs meet in peace;
Where hippocampi, mermaids and krakens swim,
Where enets roam and leprechauns dance;
The magic forest, where Minotaurs graze,
Where big feet and abominable snowmen roam;
The magic forest, with fields of purple and streams of orange,
With corn of silver and potatoes of gold;
The magic forest, where you can fly.
Just believe what you want to believe.
The magic forest. It exists only in my imagination.
Mid-way through his third year at HCS, Jack's best friend -- his dad -- suffered a heart attack and died. Jack completed the year and left without earning a high school diploma. He returned to Minnesota to live in a staff-supported apartment close to home and to attend the public school's two-year transition program.
As with every change, there have been fits and starts as he's adjusted to new environments, people and expectations. Although the transition program emphasizes life skills and employment, his teacher recognized a vivid imagination that inspires passionate and intriguing stories. During the past two years, she has encouraged Jack to write the fan fiction to which he is drawn. She has patiently edited his work, for grammar and punctuation rules elude him.
Right on schedule, the now healthy sister to whom Jack donated his bone marrow will soon accept her high school diploma and depart for college. But what about her big brother? I'd like to believe there is a magic forest awaiting him. But right now it exists only in my imagination. Despite exhaustive and costly efforts to socialize and educate him, Jack cannot manage the academic demands of college-level courses. He doesn't have the staying power for a full-time job, as his attention span is short and his anxiety heightened. He's interested in people -- but on his own (limited) terms.
So, where does that leave us? We've investigated programs that would prepare him for employment by working a few hours per week at a light industrial concern doing cleanup or in a day treatment program scanning documents or putting items into bags or boxes. He can continue to volunteer at the library for an hour per week shelving books. But 24 hours are a lot to fill when you have few interests and no friends to pass the time with.
Last year, I interviewed Temple Grandin when she was in Minnesota for a conference about autism and employment. When she learned she and Jack had attended the same school, we switched roles as she peppered me with questions about him. Learning of his interest in writing and love of anime, she insisted I find some way for him to use his talents. Start a blog but expand his interest beyond anime, she said. Great idea, I thought, except he only wants to write about anime and is a perfectionist who reluctantly shares his work with others.
As Temple pressed the issue, my apprehension grew. While her idea has appeal, I have plans for my own life, for, like Jack, I've discovered I love to tell stories. I am eager to immerse myself into speaking and writing, for I've weathered a lot of storms and accumulated abundant material over the past two decades. Rather than stepping back from Jack's life, as I'd dreamed, her plan requires me to become even more enmeshed.
It's impossible to predict how this story will end. Temple planted an intriguing seed. With the right incentives -- always essential -- Jack might be inspired to share his stories. Maybe a new mentor will emerge, like the teacher who has served him so well these past two years. Or... could it be the life plan is for Jack and I to march forward together into the evolving world of publishing? He could write his stories; I could share mine. Only time will tell.
Follow Caryn Sullivan on Twitter: www.twitter.com/csscribe