How It Was

If I’d thrown her through the window that night, no one would have known I’d done it. After all, how many windows had she broken already? How many walls had been cratered by the smash of her head? (We even had a standard, bleak joke about it—that we could measure Hannah’s growth by the height of the holes in the plaster.) I could have gone into her room right then, and under cover of dark I could have dragged her to her feet and flung her hard against the one broad pane we hadn’t yet replaced with plexiglas. There’d be no obstructions on the way down, and only hard sidewalk below.

But what if the window didn’t break? Or if it didn’t break enough, if it left her halfway in the room, and only bleeding? The thing was, of course, that Hannah never seemed to bleed, or to damage herself at all, in her plunges through glass. She was amazing that way. She seemed unscathable in the direst of circumstances, and by now we’d gotten so used to her invulnerability that, if I’d thought about it, I’d probably have believed that she could walk through fire without getting burned, get hit by a car without breaking a bone, drink poison and feel only happy effects.

Not that I ever thought of burning her, breaking her bones, feeding her poison. Understand, if you possibly can, that I’d have been the one dashing into the fire to save her, yanking her out of the line of traffic, forcing the ipecac down. It was hardly ever that I seriously considered throwing her out a window.

And even now I was giving up the idea, because I realized that the window probably wouldn’t break completely, so she wouldn’t fall all the way through. I’d have to shove her out the rest of the way, and I knew that was far beyond anything I could ever do. Which meant that Hannah, impervious or not, would surely end up wounded, bleeding, hurt—and not dead—and I couldn’t have borne that. The last thing in the world I wanted was to make her feel even worse than she did already.

***

My firstborn daughter was diagnosed with autism at the age of three. At first the experts we took her to considered hers a “mild” case, and I clung—by talon, by tooth—to that word, “mild,” for several years past the point when everyone else, even the experts themselves, could see that the experts had been wrong. In her seventeen years of life, Hannah never learned to speak her own name, much less to communicate her thoughts, needs, and feelings in any way those of us who loved her could readily understand. And for a long time this seemed a terrible, terrible tragedy to me—this growing realization that she would probably never be able to learn much about the world at large, or follow the plot of a simple story, or play a real game, or make a friend, or fall in love, or live on her own. But it’s amazing what you can come to accept, if you have to, and eventually I reached the point where absolutely none of that mattered to me anymore, and the only thing I really wanted was for Hannah to be “happy,” in whatever form that might take for her, and for however long it could last.

Her “rages,” as I came to call them, began around the time she turned six, and accelerated as she reached puberty (which often comes early to autistic children: Hannah had her first menstrual period at the age of nine). For an hour at a time, sometimes even for half a day, she could, indeed, be very happy—rocking in her dilapidated La-Z-Boy, swinging as if to touch the sky, laughing and swaying as she stood surveying the world from atop the highest banister or playground slide or jungle gym she could find. But in a single, breathtaking instant, all that could change, and Hannah would suddenly let out a shriek and start pounding her head as hard as she could, over and over, against the hardest nearby surface. Sometimes these bouts of pain and fury would last for just a few minutes, but sometimes, and increasingly, they went on for hours.

For the first several years of her rages, she was still small enough to hold down. If you were quick enough you could get to her before she could hurt herself much, and you got to be pretty adept at slipping over her head the special, cushioned helmet the doctor had prescribed. You learned to hug her tightly from behind, to hold her arms close against her chest, and to lean your head backwards and away so that she wouldn’t be able to ram the back of her own head against it.

But somewhere around the time she was twelve or thirteen, she got too big for all that, and it took a team to stop her from hurting herself or other people. The teachers in her special ed classroom would often have to “call a code” over the school loudspeaker, which meant that the burly male gym teacher down the hall would drop everything and rush over to help. At home, of course, we didn’t have such an option, and if I was alone with Hannah when the raging began, and I’d tried everything on my list of strategies to calm her down—music, videotapes, food, play-doh, stress balls, fuzzy pipe cleaners, weighted blankets, holding her, singing to her, providing her with silence and space—I’d often have to give up. My other daughter, Becky, five years younger than her sister, would already have hidden herself in the basement. I myself would try to stay in the same room with Hannah for as long as I could, but over time this became harder and harder to do. Her rages had begun to take the form of attacks on the people around her, and she was dangerously strong. I’d been pinched, clawed and bitten many times, had had my fingers pushed backward to the threshold of breaking, had been nearly knocked out by the crash of her head against mine.

The state-sponsored social services agency for Butte, Montana, is called Family Outreach. Our case worker, Elizabeth, had been coming to the house two or three times a month ever since Hannah’s diagnosis, but though she’d been helpful all along the way—providing us with respite care, at-home trainers, books, therapeutic toys, funding for me to attend autism conferences, a Medicaid waiver to help cover Hannah’s medical bills—she was beyond her depth, as we all were, in trying to deal with Hannah’s violent outbursts. Meanwhile, my own mental health was disintegrating, as was my marriage, and in our family’s last-ditch effort to ease the burden we bought a second home, a cheap little place just a few blocks down the road from where we lived. We called it our “respite house,” and for a while my husband lived there full time. Then for a while, as I continued on the path to falling apart, he and I took turns staying there every night, and sometimes Becky and I would stay there together.
In the summer of 2002, Hannah turned fourteen. Around that same time, Family Outreach decided—I’m not sure just why—to reassign Elizabeth and to provide us with a new case worker. Her name was Maggie, and she seemed young and inexperienced—flustered by the paperwork, all the notes she was supposed to take, the charts to fill out, the various forms we both had to sign every time we met. But somehow she saw immediately what other people in Hannah’s life—doctors, teachers, therapists, case workers, and even (especially?) I myself—had never quite realized: namely, that ours was a family in complete crisis, and that unless a fundamental change took place very soon, we wouldn’t survive.

The first option Maggie came up with was straightforward: we could surrender our parental rights to Hannah, in which case the state would take her from us and set her up in some sort of foster care. My husband and I actually talked this over for a day or two—this business of simply handing Hannah over to the authorities—although I think both of us knew all along that we could never actually do it. So then Maggie came up with her second plan—the plan that saved our lives. We would move Hannah to the respite house, make the place safe and comfortable for her there, and take turns staying there with her each night. Meanwhile, Maggie arranged for an army of caretakers—some of them had been already working for us, but many were new—to work in shifts to take care of Hannah after school and on weekends.

Hannah made the transition amazingly well, and in fact within a week of moving to the other house, she seemed clearly to prefer it to living at home. At first the caretakers came to the house one at a time, but over the next couple of years, as Hannah grew more and more dangerous, it was decided that they needed to work in pairs. Sometimes, especially toward the end, there were three or even four caretakers at the house at once: one woman’s job was just to come in each night at 5:00, cook the evening meal, and give Hannah her nightly shower. Another woman—a specialist in an autistic therapy similar to Applied Behavior Analysis—drove from Helena to Butte every weekend to teach that training method to Hannah’s everyday caretakers. A video-recorder was installed in the kitchen of the second house, so that Hannah’s therapeutic progress could be monitored and the training methods adjusted.

Meanwhile, around the time she turned sixteen, Family Outreach started applying, on our behalf, for a residential group home placement for Hannah. Ironically, though, the very thing that made such placement so urgent—Hannah’s rages—was also the reason she was continually turned down. (After a while, every time a group-home position opened up, we faced an impossible dilemma: if we emphasized how hard Hannah was to handle, she was rejected as inappropriate, but if we played down her violent behavior, then the state saw no urgency in our situation, no reason why a sixteen-year-old girl shouldn’t wait a couple more years before placement.) Still, we kept hoping and applying, because we’d been told that the unprecedentedly high amount of state funding we were receiving to maintain what was essentially Hannah’s one-person group-home set-up might suddenly be withdrawn once she turned eighteen.

If Hannah had lived, she’d be twenty-three years old by now, and I don’t know—I can’t even guess—where and how and with whom she’d be living. But life goes whichever way it wants to, so instead Hannah died, a week beyond her seventeenth birthday, of an epileptic seizure in her sleep. Some people—good people, friends and family, many of whom have shown a notable capacity for making sense on other occasions—have declared her death a “blessing.” I marvel not only at the certainty of such people, but at the sweet relief they seem to find in being so certain. Meanwhile, some six years after Hannah’s death, I myself still don’t know what to think, and I don’t suppose I ever will.