This story is about my son, a contrary warrior in this world where the tribes that will accept him are hard to find, but they do exist. It's a story about how crucially important it is for parents to accept their children the way they are, to enter into their world and try to make their time in that world productive and happy.
Thank you for writing this amazing book, Mr. Solomon. Nothing I've read—and I've read more than you can possibly imagine about autism, bipolar disorder, PPSD, learning disabilities, mental illness in children, an endless parade of weary, delusional, deadening, soul-sucking words—has helped me understand my own identity and the developing identity of my son, who I'll call W.
I divorced W.'s father, an alcoholic, when W. was 2 and raised him mostly alone. I worked full time as a college instructor and relied on a steady lifeline of friends and family to help me through what turned out to be W.'s very difficult childhood.
He was an extraordinary baby, restless, never on any schedule, too busy even to eat, so fiercely intelligent that I worried he might be a genius. When he began to talk, it was in whole sentences, and his hunger to know everything was relentless. He was always affectionate, curious, weirdly obsessive. He felt things very deeply, like an old soul. I used to think that he understood everything and was simply too disturbed by all of it to live normally.
He was different, uninterested in other children, only comfortable with adults, fascinated by how things worked, amassing through the early years of his childhood an enormous collection of rotary fans, old record players and VCR's, abandoned computers, bungee cords, PVC pipe, bicycle wheels, elaborate networks of water hoses.
At two, he began to say things about "that other baby" who he saw outside, sitting in the weeds. He was very clingy, anxiety prone, hated change or separation from his mother. He often told me "Mama, I love you too much." It was true, like an embarrassing fact that we both worked on so that he might overcome it. I made him practice remaining 20 feet away from me, then 30 feet, but he wasn't very good at it until he got older. He loved to watch ceiling fans, was fascinated by vents, begged me to make the washing machine go into the spin cycle so he could stare at it mesmerized. He didn't play with other toddlers and had little use for them.
At four, he had what can only be described as a psychotic break in a preschool that he hated. His kindergarten teacher, a 30 year veteran of 5 and 6 year olds, told me, "I've never seen a child like W. I don't know what's wrong with him." At school he was driven like a motor, wound up like a spring, completely unable to focus on anything unless he decided to do so. I have no idea how he ever learned anything that was going on in the class. But he did learn it, or he already knew it anyway, and that worked pretty well until about 3rd grade.
There were lots of tests: 3 IQ tests over 10 years that ranged from below average to high intelligence, the vocabulary of an 18 year old at the age of 7 but unable to tie his shoes until he was in high school, never learned cursive, still barely able to print, but completely fluent on a computer keyboard. He took to computers early and knew everything about them, starting with the inside parts.
His pediatrician's referral slip said, "Asperger’s? BP?" One therapist said ADHD, another said he was fine; at school, he was diagnosed with a visual processing learning disability. Finally a psychiatrist diagnosed him with the trendy bipolar disorder at age 7. Everyone agreed that he was not autistic.
I was so tired, so scared by then. W. regularly saw things that were not there, purple laser beams shooting from my fingers or outlining a doorway, UFO's, two dimensional shapes that floated in space and draped over household items like Salvador Dalí clocks. I think he was born seeing things and just didn't realize that it was unusual until he was 7 or 8 years old. He thought everyone else saw these things too, and was surprised to learn otherwise. The psychiatrist told me that these "visual hallucinations" had to be prevented, that each episode could actually damage the brain.
So in desperation, I gave W. a long parade of serious, heavy-duty drugs for the next 5 years—risperdal, zyprexa, abilify, anti-seizure meds, lithium—all just so he'd be able to go to school and function even halfway normally. He required monthly blood tests that my insurance company never failed to refuse to pay or to dispute. I spent $10,000 a year to pay for the child psychiatrist whose services were not covered by my health plan. Autistic kid? No problem—all the services you'd ever want in the world. Bipolar? No dice.
Some of these drugs worked for a while, most did not. Lithium had the best and most long lasting positive effect, so I took that as the best evidence that my son WAS bipolar, a very serious and lifelong disability. I accepted it, strapped on emotional armor so I would be able to get through the worst that was surely to come.
I was warned that it would only get worse in adolescence—that he might have to be hospitalized if he became too strong and too violent for me to control. I spent years fighting local schools to get him into a placement where he could learn. I begged principals, teachers, special ed. staff, attended endless IEP's and evaluations. He did learn to read and write, barely scraped by in some grades, attended in both mainstream and special ed. classrooms. W.’s love and obsession for computers was his salvation in the educational realms—without it, he would never have made it. He also loved science and had amazing auditory memory, so I read all of his school books out loud to him. He couldn't read them himself because it was so tedious and slow, but he did know how to read, and he did it with no problem when the print was on a computer screen.
Finally, when W. was in 8th grade, he essentially stopped attending school, just shut down and stopped caring about anything, and so he did not graduate. The meds had made him overweight and lethargic. Almost in a kind of despair and defeat, I let him stop taking any meds and said to God and myself, "He will be as he will be, and now we must find out what that is." It was acceptance on my part that no external force was going to change him.
I decided to live in HIS world, not the one where he didn't quite fit and would never belong. I stopped trying to make him function in my world and just did whatever made him feel happy and loved. I told W. that if he hurt me or hit me, he would go to jail and they'd take him to a psych ward, so he would need to exert whatever control he could. He agreed, and he never hurt me after that.
That summer he lost all the weight and became thin again, but he was also undergoing adolescence and physically changing. I enrolled him in a charter high school where he could learn under the Bill Gates model of project-based learning. They didn't care that he had not actually graduated from the 8th grade, and they assigned him a mentor, a young man who had just graduated and who was also bipolar. This would allow W.'s obsession with computers to become an asset, and I let him choose this school, telling him that he would hate regular high school and he might not hate this one.
This school, the physical changes of adolescence, and the random mystery of the universe saved W.'s life. By this time, he exhibited NO symptoms of being bipolar at all. We stopped going to the psychiatrist. He never took any meds again. It's not that W. was "normal;" he was not. He still faced many struggles, but once in the charter high school, once the mental health issues seemingly disappeared for no logical reason, it suddenly became very obvious that W. had Asperger's syndrome. It was as if a blanket had been covering it up, confusing everyone for all these years, and now it had been lifted and what was underneath was a boy with autistic tendencies.
He was clearly "on the spectrum." His special ed. teachers in high school told me he was classic; they couldn't believe he had ever been diagnosed bipolar. At school, for the first time in his life, W. made two good friends. Both coincidentally also had Asperger's.
Now W. is 18. He graduated from high school and got the same diploma as every other kid in the state. As a result of an internship started while he was in school, he got a job at a data recovery business where he created his own niche job fixing computers. He makes $20.00 an hour. He's learning to drive. He's interested in meeting girls. He spends most of his waking hours in front of a computer, often doesn't know what day it is, and lapses into periods where his waking and sleeping are opposite of the rest of the world. He still maintains close contact with his two friends.
He doesn't seem to remember very much about his childhood, but he does remember the purple laser beams and acknowledges that yes, it was strange. He doesn't believe he has Asperger's, and indeed he has never had an official diagnosis nor will he consent to an examination for that purpose. It doesn't matter. I feel as if I have escaped an enormous fireball that was on a direct path to hit us both, and yet at the last minute, it veered.
W. is still young, only 18, and I don't know what is in store for his still developing brain. He's more like a normal child than he's ever been, and I can only hope that he remains happy and engaged in his own life. He's still a contrary warrior, and I know he always will be. That will make his life hard, there's no way around it. I don't know to what extent he will "grow up" and move out and live independently.
I don't make predictions anymore and I try not to waste my time worrying about that which I cannot change. He will be as he will be. We who love him accept him into the tribe.