by Ron Fournier
—
There is some comfort in the discovery that I am not alone. I found scores of other parents struggling along the path to acceptance, where love and fear and self-regard blind us to the subtle difference between guiding and pushing our children. “The easy part of parenting is the dreams we have for our kids; we all have them,” Lori told me one night near the end of the guilt trips. “The hard part, the goal of all this, is learning to accept and love the kids you have.”
Stacey and Adam Bromberg now recognize that Gavin is a good kid, a happy kid with “a good group of friends” and a bright future. “I want to say that he’ll succeed in computers after going to college or landing a job even before he goes to college. He loves computers,” Stacey said. “I definitely see success in his future, no matter what.”
Mitch Dworkin is married and happy, still making progress on his issues with Asperger’s and hoarding, which is a symptom of his obsessive-compulsive disorder. He calls his father “my best friend.” Reverence is the best word to describe how Alan Dworkin describes his son. “The kid gets kicked in the head and gets back up. Kicked and kicked and kicked, and he just won’t give up. It may be the most courageous thing I’ve ever witnessed, that boy.”
John S., the father I met over beers in Lansing, Michigan, is working less and spending more time with his boy. “Luckily, we found a public school with staff willing and able to help him, and counseling, and he is working his way through the first grade,” John said. “I am incredibly proud of him and growing more so I come to fully understand the hurdles he faces.”
Megan Chung didn’t get into Harvard. It was her only rejection. “I just got back from visiting Princeton a couple of days ago and I could not be more enthused to call the place home,” she emailed me just as this book was being completed. “Personally, I think it’s a better fit for me than Harvard.”
But this isn’t just about Megan, is it?
“My mother was excited for all of my college acceptances (including Columbia, Brown, Cornell, and Duke), so much so that I think Harvard’s rejection was just a shrug and an ‘oh well’ to her.”
Not all stories come with a happy ending. Remember my basketball pal Scott Gilbride? Rather than shirk from Mary Lacey’s depression, Scott and his wife, Anne, fought it like a cancer. So did Mary Lacey. She tried therapy, intense exercise, modified diets, and even the medication that Scott despised. The Gilbrides threw everything at their daughter’s depression.
It was not enough. One day recently, Mary Lacey killed herself. “I’m sorry I can’t take the pain any longer,” she wrote to her family. “No longer will I watch my suffering affect my family. You all won’t have to deal with the ups and downs anymore. I love you.” After thanking her father, mother, both sisters, and several friends for their love and support, Mary Lacey divided up her possessions, giving them away to family and friends: a racing bike, a David Yurman ring, Michael Kors eyeglasses, a Marc Jacobs bag, weightlifting shoes, her grandmother’s ring, and her laptop, the one she used to write her last note. “Please remember that this was my decision and no one’s fault,” Mary Lacey wrote. “I have the best family I could have ever wanted and I don’t want to keep hurting you with my depression.”
This is any parent’s worst nightmare. A child’s suicide is not something a mother or father wants to ever accept. And yet I think Scott and Anne found some peace in understanding that what happened to Mary Lacey was out of their control. Maybe even out of Mary Lacey’s control.
Her funeral filled the seats and side aisles at St. Mary’s Catholic Church in Alexandria, Virginia. Eulogists recalled Mary Lacey’s loud laugh, her fierce competitiveness, and her selfless knack for making everybody feel better in her presence. Nobody shrank from the cause of death: depression. The Catholic priest who spoke at her funeral, Father James Greenfield, asked family and friends to not judge Mary Lacey or her parents. Given the Catholic Church’s firm teachings against suicide, Greenfield’s homily was an extraordinary act of forgiveness, grace, and acceptance. “Hers was a medical problem,” he said, “not a moral one.”
—
For Lori and me, that road to acceptance of Tyler’s issues began in Dr. Quinn’s office, with the autism diagnosis. A label we once feared actually opened doors to a vast variety of services. It also helped the people around Tyler to better understand him. Finally, and most important, the diagnosis helped Tyler better understand himself.
He likes to say, “When you’ve met a person with Asperger’s, you’ve met one person with Asperger’s.” His point: While autism is an important part of his identity, it will not define him.
Tyler embraces the theory of neurodiversity, defined by author Steve Silberman as “the notion that conditions like autism, dyslexia, and attention-deficit/hyperactivity disorder (ADHD) should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture, rather than mere checklists of deficits and dysfunctions.”
Ask Tyler about being an Aspie, and he’ll give you a list of successful men and women who succeeded not despite of autism, but because of it. “The notion that the cure for the most disabling aspects of autism will never be found in a pill but in supportive communities is one that parents have been coming to on their own for generations,” Silberman writes in NeuroTribes: The Legacy of Autism and the Future of Neurodiversity.
Lori and I didn’t run away from the diagnosis. We ran toward it, building a support system for Tyler. We started with his education, which had stalled at Williamsburg Middle School, a large and impersonal public school catering to affluent families in the Washington suburb of Arlington, Virginia. While teachers focused on the highest achievers, Tyler’s grades suffered, and he was increasingly ostracized and bullied. His attention-deficit issues had qualified Tyler for special services since the second grade, but Williamsburg officials were stingy with their accommodations.
Not only did Dr. Quinn tell us to fight for Tyler, she taught us how. Go to the next special-needs meeting with a list of specific accommodations that Tyler requires, she said. Things like a laptop, more in-class assistance, and social skills training. “If they raise any objections or fail to accommodate Tyler in every way,” she said, “ask them this: ‘So you’re telling me that you can’t educate my son?’ ” That is the trigger, she said—the magic sentence—that tells school administrators you are prepared to yank your kids (and their federal money) out of the district.
Game on. Two weeks later, Lori and I attended the annual review of Tyler’s special-needs program linked to his ADD diagnosis. We brought with us Quinn’s 30-page report that had just labeled Tyler an Aspie. The special-education team quickly accepted her findings, but they hemmed and hawed over our request for new accommodations, until I took a deep breath and said, “So you’re telling me that you can’t educate my son?” The county’s special-education director looked at the assistant principal and raised an eyebrow. “No, we’re not saying that,” she said. “But we are here to tell you there is a new program opening at H-B Woodlawn next year that caters specifically to boys like Tyler: kids with high-intellect Asperger’s.”
H-B Woodlawn is a county-run magnet school with a waiting list so long that children must win a lottery to enroll. Serving grades 6–12, the school has an enrollment of just 600—half the size of Williamsburg. Located just two miles east of our home, H-B gives students more freedom and responsibility than the typical school, with an open campus, liberal dress code, college-style schedules, and a tradition of the students calling teachers by their first names.
The kids are encouraged to embrace their inner quirkiness. Different is cool at H-B. School principal Frank Haltiwanger fostered a culture of tolerance that extends from the most popular kids to the nerdiest. At one graduation ceremony, the principal called out the names of two students, a boy and a girl, who were leaving H-B for other schools. With his arms casually draped over the departing kids’ shoulders, the principal s
aid, “Now, we all hope these two are welcomed into their new schools, right? We want their new classmates to invite them into their cliques, and to their parties, and to stand up for them if anybody acts against them, right?”
Every head nodded. The two kids were well liked. “Okay then, next year we will have 10 new students coming to H-B from other schools,” Frank continued. “I expect you to invite them into your cliques, and to your parties, and to stand up for them if anybody acts against them. That’s the H-B way.”
Sitting in the back of the room, Lori whispered to me that Frank was the perfect principal for kids like Tyler. I told her that Frank had instilled a culture of community and competence throughout the staff and student body. “He may be the best leader in Washington.”
A few months after enrolling in H-B for seventh grade, Tyler decided to enter a talent show. He wanted to do a stand-up comedy act, an idea that scared the hell out of me. What if kids laughed at him rather than with him? The weekend before the show, Tyler and I cribbed jokes from the Internet and practiced his routine. It was rough. Tyler talked too fast and had chosen jokes that made him laugh. He was more concerned about his own amusement than that of his audience—exactly what you’d expect from an Aspie. Come showtime, his first two jokes bombed, but the kids applauded politely. That gave Tyler confidence. He slowed his cadence and looked audience members in the eye. They laughed, cheered, chanted Tyler’s name, and later voted him the second-place winner.
Wiping away a tear, I turned to the nearest teacher and said, “You’re not just teaching these kids how to read and write. You’re teaching them to be good citizens, aren’t you?” The teacher shrugged, smiled, and said, “That’s what you pay us for.” For a cynical reporter who makes his living documenting the failure of national institutions, this was one hell of a moment. That’s what you pay us for.
For the handful of students who happened to be Aspies, H-B offered social skills classes staffed by Asperger’s specialists. They worked out of a small classroom decorated with large, overstuffed couches and chairs—part of an effort to create a zone of safety and comfort, where the students could unwind from a day of socializing that for most kids is refreshing and fun but for Aspies is utterly exhausting.
In time, Tyler made friends outside the Asperger’s program. He was part of a small group of quirky boys who were equally obsessed with video games and who ate lunch together in the school hallways. We tried for months to get the boys over to our house or out somewhere together after school. Finally, they agreed to go to a movie. I drove them to the theater and reported back to Lori that, despite our fears, they really liked Tyler and were actual friends. One of my happiest moments as a dad occurred that night, when Tyler burst into the house to tell his mom, “Me and my friends are home!”
Recently, we got a note from Tyler’s first Asperger’s aide telling us about a holiday party in which 30 kids and teachers gathered in the hallway to do the electric slide. “My heart was so happy to see Tyler dancing with the group,” she wrote. “He had a big smile on his face! I couldn’t stop watching him.”
Don’t tell me schools are just for learning. After a few months, Tyler declared H-B Woodlawn to be “a life-changing experience.”
—
Outside H-B, Lori built and managed a team of professionals, including a psychiatrist to manage his drugs and an Asperger’s therapist to work with the school team. In addition, he attended a weekly therapy group with a mix of troubled teens. Some had issues with drugs or the judicial system. Others were constantly fighting with their parents. Tyler slowly learned how to listen to his peers, show empathy, and express his innermost feelings. Most people could benefit from a simple sharpening of these social skills. For an Aspie like Tyler, the challenge is akin to learning a foreign language.
Not too long ago, a girl in the group announced that she was no longer attending the program. Tyler told his mom that he would miss her. To parents of a typical child, that would be no big deal. For us, it was a double breakthrough: Tyler had grown close enough to a person to miss her, and he was able to tell us about his feelings.
The next week, Tyler arrived for the group session and sat by himself in the waiting room. Lori knew to sit far apart from her teenager. She told me later, “A couple other kids in his group came in and were talking to each other. Then one of them called over to Ty and said, ‘What do you think, Tyler? Come on over here.’ Ty got up, walked over, and joined their conversation. I thought I was going to cry. I could not look at them.”
A week after that, a middle-aged woman was loudly mocking eating disorders and Asperger’s in the therapist’s waiting room. One of the girls in Tyler’s group walked over to the lady and politely asked her to stop. “I have an eating disorder,” the girl said. Tyler followed his companion over. “And I have Asperger’s,” he said.
Later, I told him how proud I was that he would stand up for himself and his friend. “That was the right and good thing to do,” I said.
Tyler shrugged. “I had her back.”
Then there was Holly’s wedding reception. Actually, it was the after-party at Tom’s bar, where Tyler broke out of his shell as soon as the dance floor opened. Lori and I hadn’t realized that one of the things Tyler does in our basement is watch and memorize music videos, nor did we know that the kid can really dance. I don’t have the words to describe the joy I felt watching my son confidently perform—often solo, as family and friends cheered, but also, and more important, while pulling friends and family into his orbit.
There were so many other big small moments. Like the day he ran up the stairs from the basement to declare, “I’ve got to take a shower!” It was his first unprompted act of hygiene. Or the first time he did his homework without Lori’s help, a tenth-grader telling his mom, “I got this.” Like many Aspies, he is essentially a handful of years behind typical teenagers in social and personal development. On his own initiative, Tyler now brushes his teeth, makes his bed, takes his medicine, and goes to sleep. You might wonder why these things are worth celebrating. The reason is because there was a time, not too long ago, when we didn’t know whether Tyler could be independent. Now there’s little doubt that he will be.
Even as I finish this final chapter, we’re seeing progress. Tyler told his therapist recently that he was feeling “a little jumpy.” It turned out he hadn’t taken his medicine, and the fact that he noticed a change in his chemical makeup is a big deal. The same day, Tyler told his mom that he didn’t want to go to the Winter Classic hockey game with me and his sisters, but he knew that Holly and Gabrielle wanted it to be a family affair. “Can you believe that he’s putting himself in the girls’ shoes?” Lori happily asked me. Yes, I can.
Three years after his visit with Bush, Tyler still does something remarkable every Saturday afternoon: He walks onstage at a comedy club near our home and performs improv with a group of adults. It’s one thing to crack a joke; it’s another to make one up on the spot—to follow the other players’ subtle verbal and nonverbal clues and to collectively create a skit. It’s a social function so complex that most neurotypical people would freeze or flail. Not my boy.
The biggest issue is still friendship. That movie with the boys occurred two years ago, and Tyler hasn’t had an outing with them since then. They still hang out together at school, but something is blocking Tyler from making connections beyond H-B. He has his companions at group therapy and colleagues in improv—sincere, strong relationships within the limits of those activities. But he does not have friends in the traditional sense, which worries Lori and me. Will Tyler start making friends? Will he be lonely? Will he define friendship differently than his parents do? He’d tell you, “I’m working on that.”
—
Lori is working on her own happiness after years of sacrificing it for mine—and for our kids. She graduated a year ahead of me from the University of Detroit (now University of Detroit Mercy) and we married less than a year after my graduation. Rather than leverage her de
gree for a public relations job in Michigan, Lori climbed into a rental van the morning after our wedding and moved to Arkansas, where I had found a newspaper job and she had no prospects.
I took our only car to work every day, which meant Lori had to walk a mile to the nearest mall to apply for jobs. She found work as a bookstore clerk, and gave birth to Holly and Gabrielle while climbing the ranks to store manager. When we moved to Little Rock to further my career, Lori took over the state’s biggest bookstore, a freestanding Waldenbooks frequented by then Governor Bill Clinton.
Before Tyler was born, when the girls were little and we still lived in Arkansas, I had a pretty good work-life balance. That changed in 1993, when Clinton was elected president and the Associated Press transferred me to Washington, a huge and exciting career boost. I promised Lori that my job would always come second to her and the kids.
In Washington, Lori stayed with Waldenbooks and was given command of two stores, one in northern Virginia and another in tony Georgetown. She was on track to be a district manager—and Lord knows what else. Her job wasn’t any easier or less important than mine, and yet the burden of feeding, clothing, transporting, and in all ways raising the kids largely fell to Lori. I might drop the girls off at the sitter or school, but I rarely was available to pick them up. I missed dinner with Lori and the kids more often than I made it. I took every other trip with Clinton—and the president traveled a lot. The job came first, family second.
One day, on sleet-glazed city streets, Lori left work at the mall to pick up Holly from kindergarten, where she attended an after-school program that closed at 6:00 p.m. Heavy traffic delayed Lori’s arrival until 6:10. “You’re late,” the program coordinator snapped at Lori. “If you can’t be here by six o’clock, we are going to expel your child from extended day.”
