I spent much of the decade 2006-2016 lying awake, worrying about my kids. I was scared of a lot of things: drugs, abuse, frat parties, bad cops. But more than half of that time was devoted to one specific worry—that my older son, who had autism and a general not-of-this-worldness would suffer once my husband and I were gone. Every time I saw a big, bearded homeless man, I gave him money. Because that’s the vision that haunted my nights. I could see Andrew as a 60-year-old, alone, having wandered away and gotten truly lost once I died. I took comfort from the fact that he was only 21 years younger than I. He was male; I’m female. He loved pizza and Coca-Cola; I’m a yoga fanatic. I actually consoled myself with the idea that maybe we’d die around the same time. Of course, that’s not what happened. After we moved back to Minnesota and found jobs that allowed us time for care taking and bought a house specifically for Andrew to inherit and set up a special needs trust, he died without cause just short of his 29th birthday. I was 50. It’s the one thing I hadn’t even thought to fear. This is not—well, not exactly—some moralistic tale about how you shouldn’t spend time fretting because you can’t possibly imagine the future. I still lie awake and I have a whole new set of specters and boogeymen. But I guess I do it somewhat ruefully now, with a wry fuck-me sense that worry is nothing but a pitiful attempt to control. The flip side of that, the positive, is that you never know what your life will contain. Andrew’s death is the worst thing I know, but it’s brought me several gifts: people, mostly—really wonderful people. Also a complete lack of ambition, a renewed love of alcohol and sunsets, and the wonder of watching his brother rise up in the aftermath and become an absolutely spectacular human. I can see him, carrying the memory, being man for two.
I ran across this article yesterday and it reminded me of all those sleepless nights. I used to worry a lot about Andrew’s being shot by police, because he was random and didn’t follow directions. And there were, I think, a few times when he was hassled. But looking back, I think there were many many more times that a cop stopped to help him, or found him, or talked him out of a bad situation. And for that, I am grateful. I wish all of you well tonight.
How Do We Protect Our Children With Autism From Risky Run-Ins With Police?
Photo by: Kristin Sartore
On the afternoon of my younger son’s high school graduation, a storm gathered. My phone rang repeatedly with new instructions: the ceremony was moving indoors, seating was limited, we should arrive early. When it rang again I answered, expecting the school’s robo-voice. Instead, it was an officer from the Metropolitan airport police.
“Do you know an Andrew Bauer?” the man asked. I looked out a window at scudding dark clouds and considered saying no.
“Um, yes,” This was a familiar call. “I do know him.”
“Does he speak English?” the officer asked next.
“Yes, he speaks English.” I was already walking around, hunting for my shoes and purse. “I think you better put him on.”
There was a pause and a few low voices. Then I heard breathing.
“Andrew?” I demanded. In the distance I heard a rumble of thunder.
“Hey Mom,” he said.
The storm hit halfway to the airport. It was rush hour, the highway an expanse of water-smeared lights.
It took 40 minutes to get there and find the police station, tucked away down in baggage claim. When I walked in I saw my older son in a chair in the corner. He was facing a dark-haired officer half his size who had taken off his jacket. They were both hunched over a chess board; the cop moved his piece.
“You don’t want to do that,” Andrew said. Then he saw me and stood, unfolding in every direction to a massive six-three.
“Andrew!” I was angry and a little frantic. It was 86 minutes ’til graduation. “What the hell is going on?”
He walked over and hugged me, laying his head on my shoulder for a second. “I woke up this morning and thought I might like to go to Los Angeles,” he said. “But I don’t have any money. So I decided to sneak onto a plane.”
The officer who had called explained. By “sneak” Andrew meant stow away. He’d waited in the security line and when a TSA agent asked for his ticket, he’d bolted. “Just like the boy on Love Actually,” Andrew said gravely from my side.
He ran — straight for the gate — and was tackled by half a dozen agents. But when they tried to question him, Andrew spoke only Spanish, telling a story they couldn't piece together. An interpreter was requested but never came.
Finally, the TSA called airport police who sent an officer originally from Mexico; here, Andrew’s chess opponent gave a little wave. He’d discerned from Andrew’s near-perfect Spanish that he was trying to fly to Los Angeles with his twin brother, who had both tickets. Somehow they’d gotten separated; it was all a mistake. Andrew gave his name as Señor Azul.
“Mr. Blue,” Andrew translated and I nodded. I don’t speak Spanish but I recognized his alias of choice.
The police had handcuffed and searched my son, finding his ID with a different name. They also dispatched a team to scour the airport and find his twin (who did not, of course, exist). When they took Andrew back to the station and pressed him, he wrote down my number on a piece of paper. That’s when they called me.
I did make it to the graduation ceremony. I remember sitting in the gym as the class of 2008 batted around balloons and threw their mortarboards in the air, wondering if Andrew was still where we’d left him — at our home, making grilled cheese — or out on another spree.
This one was funny and it had ended well. The officers were good-humored and kind. But it wasn’t always that way. At 20 Andrew had been in jail, on the Mayo clinic’s psych unit, treated with everything from anti-psychotics (for mania) to electroshock therapy (for catatonia), and picked up by our local police at least three dozen times, often giving his name as Daniel Blue. Andrew was an expert at dining and dashing. He was large but wily and fast. He could easily be seen as a threat and I worried constantly that he’d get shot.
Diagnosed at five with autism—though the label never quite fit—Andrew was a conundrum. He was a whiz at math and a chess master by junior high; he struggled to speak and read English but picked up fluent Spanish at age 9. More confusing, though, he was entirely random. I don’t mean he was a kid with his own mind or a “free thinker.” I mean there was no pattern at all.
Andrew’s IQ was tested at different times and found to be 65, 110 or 130. He was mostly gentle but occasionally, and with no warning, he became wild. From the time he was two he was ousted from playgroups, reading circles and swim lessons for not following the rules. He never followed the rules. I’m not sure he knew there were rules. Because no matter how many times we reminded him — the bus leaves at 7:30; you can’t touch people without their permission; your cell phone mustn’t go in water — he would stare out the window at the bus as it left, stroke the stranger’s fur collar and wash his phone in the bathtub.
The hardest thing, though, is that Andrew was often sad. He was lonely and had a hard time making friends. He wanted a girlfriend but the women who were drawn to him tended to be older and rife with problems of their own. Once, he met a guy in an autism support group and they got together to play video games. Soon, my husband found out the man’s mother was bringing our son into her room to “help her with things.” We asked if he wanted this woman’s attention—he was 23 by this time—and he shrugged. This left us torn: Did we step in as if he were a child or allow him to experience a not-right romance, as so many of us have? Before we could figure it out, Andrew called a halt on his own and went back to a solitary life.
My nights were sleepless and feverish. Not only did I feel responsible for my son, the world told me I was. At least three times a week for a quarter-century someone said the words “If you would just…” If you would just read to him more, discipline him better, be more accepting, find the right program, get him on a gluten-casein protocol, brush him, treat his yeast, attach, detach, spend more time with him, spend less time with him, teach him right, enter his world, medicate him, stop medicating him, give up.
My relationships with my family and many friends suffered. They saw an out of control kid, then an unhappy adult, and they didn’t know what to do. So they told me to fix him, again and again and again. They blamed my divorce, my career, my parenting skills. Schools called, specialists called, the authorities called. A job coach we hired told us Andrew was the most challenging case he’d ever run across; he resigned the position and as he left he said, “You better do something about him.”
The number of people who told me they’d seen a cure on Oprah that I should pursue is in the hundreds. At least.
For all of this, when we were alone with Andrew—my husband, John, and I—it was easy to love him exactly as he was. Funny, grave, so different he seemed otherworldly. Sitting around the table with him was like having a manatee over for dinner: he didn’t speak your language but he brought dignity and weight and a strange glimmer to the event.
Everyone who loves an outlier is left marked. Our two more ‘typical’ kids faced the usual Millennial woes: skyrocketing college costs, economic uncertainty, opiates on every corner. But they had the added complication of a brother from some other plane.
Our younger son had a relationship with Andrew that was somewhere between blood and psychic bond. Max spoke for Andrew and protected him. And he suffered every hurt right along with his brother for years, eventually using drugs and alcohol to cope.
Their sister—six years younger than Andrew—missed out on that connection but spent her entire childhood whipsawed by his unpredictable behavior. Her solution was to seek order. She joined the military and married into the most stable family I know.
Three months short of his 29th birthday, Andrew had a job that he was on the brink of losing and an apartment with almost no furniture because he kept giving it away. He died one Friday morning in fall of 2016, quietly and with no warning. He hadn’t been sick. He wasn’t injured. Building staff found him on his living room floor, not breathing. A thorough autopsy was conducted; there was no discernable cause of death.
We tell each other that this is just like him, to leave us without a word of explanation. The only way we can make sense of his life is to believe he died on his own terms.
As hard as it was to parent Andrew, living without him is far worse. He’s been with me since I was 21. I doubt I’d have survived Andrew’s death without my people. They’re the ones who understood Andrew, or at least accepted him, and never talked to me about a “cure.” They’re mothers (and a few fathers) who lie awake worrying about their own adult children. They’re also artists, musicians, stoners, lesbians, teachers, empaths, chefs and one corporate attorney, which proves you never know who the kindest hearts are going to be.
Several years ago, one of those women started calling me Underground Mama, because I provided natural medicine for some of my friends and their kids with autism and Crohn’s, but also because she said there was no place I wouldn’t go with my kids. Jail, the psych ward, detox, military school.
Parenting adult kids isn’t easy, especially when they’re different, suffering or lost. So I started this forum. It’s not just for mothers with sons like Andrew (if any exist) but for people whose kids struggle with drugs, unemployment, genius, depression or simply leaving home. Underground Mama is a place where no one says “If you would just…” We understand that sometimes, no matter what you do, your children will carve their own path, flout the rules and shine on in their own inscrutable way.
Want a place with resources and good writing and humor where it’s safe to talk openly about your wonderful, terrifying, complicated parenting life? We’d love to hear your story. Join us at undergroundmama.com.