Our school district’s special education director told me before the annual IEP meeting for John Manor that his parents had been a nightmare to deal with for years. He said Mr. Manor was an attorney who headed a firm that represented parents of special needs students in lawsuits against districts they felt weren’t supporting their children adequately; they’d already gone to due process twice with our district over what they deemed lack of services for their own son. The director rarely attended IEP meetings at the district’s sites, but always made a point of presiding over theirs. Although I’d be there as the administrator of record, he advised me to stay as quiet as possible, especially since I’d just started in my new position as assistant principal at the high school.
The meeting took place one afternoon in mid-September after dismissal, and I said hello to John on my way through the school’s main office to it. As usual, he didn’t reply, but just gazed at whatever he looked at off in space and flapped his left wrist in his regular rhythmic pattern. He was in his daily outfit of khaki pants belted high on his waist with a golf shirt tucked in and dark socks and sneakers with Velcro straps, and sat on the edge of a chair outside the conference room. I’d tried to engage him several times on campus and in his self-contained classroom those first few weeks of school to no avail. His teacher told me that although he was nearly eighteen, towered over almost everyone on campus, and only had a disability designation of autism, his developmental level was that of a four-year-old.
We all sat around a big rectangular table in the conference room. Mr. Manor wasn’t there, but Mrs. Manor had brought an advocate from his firm. Both the advocate and our director turned on tape recorders as the meeting began. The director quickly led us through generalities—progress on goals, special factors, assessment results. As he did, the stony grimace on Mrs. Manor’s face never changed. Nor did the weariness, which was something I recognized well, although hers was almost fifteen years further along.
When we came to the portion of the agenda regarding new services, Mrs. Manor spoke for the first time. Her voice was hard and clipped. She demanded the district pay for outside vision therapy, music therapy, and a 1:1 aide in the classroom hired from a company specializing in behavioral data collection. The discussion heated up quickly then, with the director and advocate doing most of the talking in increasingly loud voices.
At one point, when I interjected and asked if one of our own instructional assistants couldn’t be trained in data collection, Mrs. Manor turned to me with her eyes narrowing and hissed, “You know nothing about my son’s needs!”
“Actually,” I said quietly.
But the director and advocate immediately began talking over me again. As I sat back, I could feel my color rising. Mrs. Manor had begun scribbling furiously on a legal pad. When she finished, she shoved it in front of the advocate and folded her arms across her chest.
###
I went home after school, took a short run, showered, dressed, and headed up to the convalescent wing at the children’s hospital. My son, Ben, had been there since I’d moved us down from Bakersfield to San Diego after the school year ended in June. It was the only facility for severely disabled/medically fragile children in the southern portion of the state. He’d just turned five and had tracheotomy and G-tube surgeries on the acute side when we first arrived to help control his secretions and prevent further aspirations; by that time, he’d had at least thirty pneumonias, most requiring lengthy hospitalizations. My wife had moved at the same time, too, but not with us; she’d returned to Ohio where she was from. She said she was done being a martyr and just couldn’t do it anymore. I guess I’d been oblivious because it was a complete surprise to me. I hadn’t seen it coming at all.
I’d been the head of curriculum at my district in Bakersfield, but took the first administrative job I could find near the hospital in San Diego, and felt fortunate to get it. I’d felt lucky, too, to find the little house to rent that already had a wheelchair ramp just up the street from my school. Ben was recovering slowly from the surgeries, and was gradually having his formula feeding titrated down from twenty hours daily to several bolus feeds. The neurologists had also seemed to find a better cocktail of meds to control his seizures; he was averaging only two or three short ones a day. This combination of factors meant that I could bring Ben home later that month. I’d arranged home nursing for while I was at work, as well as five overnights a week, which would help with sleep. I couldn’t wait for his discharge.
When I came into his room that afternoon, he was in his usual position asleep and lying on his back in bed. I wiped the drool off his chin with the bandana tucked into his collar, stopped his feed, unhooked his G-tube and sat monitor probe, and lifted him into his wheelchair. I pushed him down the hall past the charge nurse’s station. When I pointed outside, the charge nurse just smiled and nodded. I hit the switch on the wall to automatically open the double front doors, then pushed Ben down the ramp and up the walk to the Healing Garden that sat between the convalescent wing and the acute hospital.
The garden was empty. It was a warm afternoon, so I started by dangling Ben’s fingertips in the fountain, but that didn’t wake him up. Neither did the tinkle of the wind chimes up in the tree branches or the freckled shadows on his face when I tilted him back under them. I scooped him up out of the wheelchair and held him on my lap on a bench. Like always, he nuzzled his face into my chest, but didn’t awaken. Although no one else was around, I used a soft voice to sing the same three songs I did to him every afternoon, the ones I used to sing to him at bedtime. Then I sat rocking him a little back and forth and thought about my wife, the divorce papers I’d received from her in the mail earlier that week, and the future.
A little while later, I reversed our walk and got Ben back in bed, changed his diaper, and got his feeds and sat monitor started again. He still hadn’t awoken when I kissed his cheek, smoothed the hair on the flat part of his head, and headed home.
###
I saw Mrs. Manor and John go by on the sidewalk in front of my house almost every evening. Mrs. Manor had a small dog on a leash and walked about ten steps ahead of her son. The expression on her face was always identical to what it had been in the conference room. Whenever she would stop, John would do the same until she moved off again, and then he’d maintain the same distance between them. He walked in his halting fashion with his left wrist flapping.
My house was on a corner, and Mrs. Manor would pause at the crosswalk there, glance behind her at John, then turn right and head up the sidewalk towards the library. He’d follow. I was usually eating dinner at the dining room table when they came by, and I’d watch them through my front window make their gapped way up the street until they disappeared into the gloaming.
###
Ben’s discharge went smoothly and on schedule. I’d equipped his room at home beforehand with a hospital bed, oxygenator, feeding pole, sat monitor, suction machine, nebulizer, vibrating vest, and other necessary medical equipment like the mister with its tubing leading to the opening in his trach to keep his secretions moist. I’d also strung a mobile of butterflies from the ceiling over his pillow, had a boombox for music, and a small television for the animated shows he sometimes seemed to respond to. A small bureau held his clothes, diapers, and the like; his meds, syringes, gauze pads, rubber gloves, tissues, and free water were organized on top.
His overnight nurse was nice, and his day nurse was particularly competent. She came to the house at seven each morning when I had to leave for work, and then did his morning vest and suctioning treatment with him and bathed him before dressing him and pushing up the street to his elementary school, which wasn’t far from my own. She brought meds, his portable feeding pump, and other necessary supplies with her and performed all his care needs there in the classroom during the school day.
For Ben’s own IEP at his new school, I felt a little strange to be sitting at their conference room table as a parent rather than an administrator. I sympathized with his teacher as she struggled to articulate appropriate learning goals for him and readily agreed to phrases like “meaningfully interact with his environment” and “demonstrate some cause and effect using switch toys” even though I knew they weren’t measurable and never would be. I was just happy that he was in a place where he’d be loved, well cared for, and around other kids his age. A place where he could hear their voices and laughter; since he was unable to communicate, it was unclear to ophthalmologists how much he could see.
###
I didn’t cross paths with Mrs. Manor again until shortly before Thanksgiving when there was a message from her waiting for me on my office phone at school. On it, her short, sharp voice said she wanted to observe in her son’s classroom. She said that he was having recent outbursts at home, and she was concerned that the behavioral goals in his IEP weren’t being implemented correctly. She said she was available Friday at nine and trusted that would be convenient.
I called the director, explained her request, and asked for his direction. I heard him blow out a long breath. “Well,” he said, “it’s nothing new. She’s been doing it forever. She knows the district’s policy allows two thirty-minute observations a year and that she has to arrange those through a site administrator. But, have your school psychologist accompany her . . . don’t let her go alone.”
I said, “All right.”
“Oh, and don’t let the psych or teacher mention anything about speech/language services. The SLP is on maternity leave and we haven’t been able to find a replacement for two months, so we’re way out of compliance there. Fortunately, her son is basically non-verbal, so I’m sure he hasn’t given her any indication of that.”
I cringed a little. If he felt uneasy disclosing that to me because of my own son, he gave no indication of it. “That’s it, then?” I asked.
“Pretty much, unless she contacts you afterwards to complain. But, she’ll probably go straight to me to do that.”
After he hung up, I found our school psychologist, and he cleared his calendar for Friday at nine. Then, I called Mrs. Manor and got her voice mail; I left a message confirming the details of the observation.
My office was just off the front counter in the school’s foyer, and I could see and hear the psychologist greet Mrs. Manor pleasantly when she came that Friday morning. I watched her ignore him while she signed the visitor log. When he remarked on the rain that was expected, she dropped the pen on the clipboard, glared at him, and said, “Let’s go. I don’t have time for small talk.” She almost spat it out.
###
Things were pretty manageable at home with Ben. Without nursing on the weekends, I had to get up to care for him a half a dozen times each Friday and Saturday night, so that was a bit of a challenge, but I was usually able to catch a nap the next day. I juggled his care needs on the weekend days and after I got home from work, and we had our routines together. I’d snuggle him while I watched television in the evening and still sang him his three songs before bed. I took him to the library, to movies, things like that. I even got one of those jogging strollers so that I could take him on my runs. He had only two brief hospitalizations during the winter for respiratory infections that they didn’t even term pneumonias. My new job was okay, too; there was less work to bring home than my old position, which helped with my responsibilities with Ben. There wasn’t time for much of a social life, but after what I’d been through, I didn’t have much inclination for one.
I got the paperwork finalizing the divorce in the early spring. It hadn’t been contentious; she didn’t want anything from me and asked that I have full legal and physical custody of Ben. I put the paperwork in a file with other related documents along with the photo I’d kept there of the three of us shortly before she left; in it, Ben was in his wheelchair and we were both smiling behind him with our arms around each other and a hand on his shoulder. Beyond the divorce paperwork, I had no further contact with her except for the birthday and Christmas cards she sent to him that included a fifty-dollar bill and a message asking that I buy him something special.
Shortly after I filed away the divorce paperwork, I got permission from my landlord to dig up a section on the side of my little front yard for a garden. I worked the soil, put in a brick border, and planted it with a variety of flowers. Almost every day afterwards, I spent a little while in it weeding, watering, or changing out dead flowers with new seasonal ones. Ben sat in his wheelchair under the maple tree next to me as I worked. My ex-wife and I had kept a garden like it in Bakersfield. Aside from that, I’m not sure why I bothered with all the work and upkeep. I did look at it often, though, and admired it.
###
I didn’t attend John’s IEP that next fall because he’d technically completed his senior year at our high school and was entering the transition program for eighteen to twenty-two-year-old’s, which was housed in a special classroom at the district office. The director coordinated that meeting again, and told me about it afterwards. He said that neither an advocate nor Mr. Manor attended, and that he wasn’t even sure the two of them were together anymore. He told me he’d agreed to Mrs. Manor’s request for a teacher to come to their home ten hours a week instead of having John attend the transition class. He said that in the long run, the cost would be a wash, and they wouldn’t have to put up with her observations anymore.
I continued to see Mrs. Manor and John go by on their walks most evenings until December when they seemed to stop abruptly. I rarely thought about them again until an afternoon in May when they went by in a different fashion. It was about five o’clock, and I was using my laptop on the couch in the living room when I saw John pushing his mother in a wheelchair up the sidewalk in front of our house. No dog. She sat very still and erect in the chair with a floppy cap on her head and her hands clasped on top of a stack of books on her lap. From where I sat, I could see that the stony expression on her face hadn’t changed. At the corner, John paused, then turned and pushed her across the street in the direction they used to take. He walked slowly and deliberately. I found myself leaning forward to keep them in my sight as long as possible.
A half-hour or so later, I saw them approaching from the other direction. Mrs. Manor’s posture and expression were almost statue-like, and she still clutched books in her lap. They passed my window in their steady manner and disappeared down the sidewalk towards where they’d first emerged. It became a new routine that repeated itself every few afternoons.
###
About a month later, we were experiencing a heat wave, so once I’d changed clothes after work I pushed Ben up to the library to get us into some air conditioning. I sat in an easy chair near the fiction shelves with Ben reclined in his wheelchair next to me and started reading my way through a stack of magazines. After we’d been there an hour or so, I saw John pushing his mother our way through the center of the library. Her blank stare was aimed right at us, but I was dressed in shorts and a T-shirt with a ball cap, so didn’t present an image she might remember, and she gave no sign of recognizing me. John turned her before he got to us, but continued into the aisle of shelves immediately to our right and stopped just a few feet away. From the corner of my eye, I watched Mrs. Manor lean forward, choose several thick books from a shelf, set them on her lap, and straighten herself again. Then I watched John push her back the way they’d come until they turned up the corridor towards the check-out desk.
I waited a few minutes before getting up and moving into the aisle where they’d been. The gap on the shelf where Mrs. Manor had chosen her books was clearly visible. I looked at the titles. They were all romance novels by a popular woman author. There were so many volumes by her that they took up almost three shelves.
The heat wave persisted, and later that week Ben and I were in the same spot in the library when John and his mother came into the main section again and started towards us. They turned and repeated the same motions in the shelves of romance novels nearby. After they left, I checked my watch and saw that it was time to give Ben one of his meds, which I’d left at home.
I replaced the magazines and pushed Ben towards the exit. John and his mother were in line at the check-out counter. As we passed them, a book Mrs. Manor was holding fell from her lap onto the floor. It had a picture of a man and woman in passionate embrace on its cover. I stopped with Ben next to her, picked it up, and handed it to her. Our eyes met. At first, hers remained coldly impassive, and then recognition crept into them. She said, “Thank you.”
“Hello,” I said. I looked at John. He stared over my shoulder and began flapping his left wrist. I asked, “How have you both been?”
She made a slight shrug. Ben coughed, and I used his bandana to wipe the secretions that had escaped his trach off the gauze under it. She watched me and said, “So, this is your son?”
I nodded. I watched her study him. She looked even more worn than before. I guessed she was nearly sixty, perhaps twenty-five years older than I. She clutched the pile of books tightly with both hands. I didn’t know what her circumstances were at home, but I knew they had to be far from ideal, not unlike my own. Like me, I supposed she chased away thoughts about what would happen to her son after she died. A space leading to the check-out counter opened in front of them and John inched her forward.
“Take care,” I said and pushed Ben ahead, too, up the corridor, out the side door, and down the long ramp.
###
The two of them next passed the front of my house again later that week. I waited about twenty minutes, then got my kitchen shears and pushed Ben out under the maple tree next to the garden. I took time choosing the freshest flowers to cut and included several roses that had just begun to bloom. Afterwards, I twisted a rubber band around the stems, set the shears on the ground, and stood in the shade with Ben to wait.
John and his mother reappeared not too long afterwards and made their slow way in our direction. She seemed to be watching us as they came over the crosswalk and turned onto the sidewalk in front of our house. I walked across the grass a little ahead of them and stood in the center of the sidewalk. John stopped the wheelchair when he came to me, and his wrist began to flap.
I looked at Mrs. Manor and said, “These are for you. I just picked them.”
She lifted a hand off her pile of books and took the bouquet from me. Her flat expression didn’t change, but she looked from it to me and said, “I can’t remember the last time anyone gave me flowers.” She turned them in her hand, then continued, “Maybe never.”
I gave her a small smile she didn’t see and moved out of their way. I stood watching the back of them go off down the street. It had cooled a little, but was still hot. It would probably stay that way throughout the summer and into the early fall. Another long stretch of time to try to make the most of. Ben made one of his squawks from under the tree, one of his happy ones.
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