In the spring of 2002, the crocuses pushed up and the daffodils blossomed and froze, and I worried about work—not my own, which I love, but what kind of work my developmentally disabled 18-year-old daughter, Rachel, might be able to do when she is no longer in the shelter of school.
On one April morning—an average morning, in fact—after quarreling with her because she would not put her dishes in the dishwasher and threatening to take away her Uno cards if she did not brush her teeth, I asked her if she knew what work meant. After a few false starts—trying to make a case for computer solitaire as work, for instance—she pretty much nailed it. Work, she said, was “when you have to do stuff they ask you to do.”
Did she like to work? I asked.
“ ’Cause the way they talk to me is really mean. They talk harsh on me, Ma. Put it this way: When they talk to me, they tell me to be quiet and all that junk.”
Outside, a horn honked. I trailed behind Rachel as she reached for the banister and slowly edged her way down the porch steps, then onto the van that takes her to the Children’s Institute, where, on a typical day, she will sort and deliver mail, make a bed, and wipe down a table.
After the van pulled away from the sidewalk, I stood for a moment, limp from a combination of exhaustion and relief, since my daughter, with her long list of “special needs” is an exceedingly difficult person, especially in the morning and evening when I ask her to do the routines that most of us do without much thought. Most of us—us meaning the population that designates itself “normal”—don’t need to be prompted to use the toilet, don’t at 18 insist on wearing a sweat suit on a day when the temperature might reach 80. We don’t finish breakfast with a ring of food around our mouths—or if we do, are grateful when someone says, “Honey, you’ve got food on your face.” Most of us don’t mind touching our own faces to wipe it off. While often I am reminded that Rachel is one of us, deserving of the rights and privileges accorded to her by our constitution, on this morning—during this whole season, while I have been thinking about how to make her into a working girl—I have been reminded instead of all the impediments in her way.
I always imagined that Rachel would work. Even after it became obvious that she would never read books or write a single sentence, after I realized that she would never walk on the street alone or live without supervision, I had a vision of her having some sort of job, somewhere. When I saw a janitor or a person busing tables, I would close my eyes and try to picture Rachel doing that job, sure that despite her cognitive deficits, her poor vision and poor fine-motor skills, she could be trained for some job, somewhere. I speculated on the challenges of making a worker out of someone like my daughter, who is unable to understand concepts like altruism and loyalty, who doesn’t seem to take pleasure from a job well done and would never fear being fired. Still I went to sleep at night believing that some job would be found and that the structure and routine it provided would be good for her. Unlike many of “us,” her capacity for happiness was great, it seemed. All we had to do was help her find a job and a safe place to live, and we would be on our way.
My vague dream was nourished by several factors: First, that Rachel would be in school until she was nearly 22. Second, that she had been given an after-school job at Café J, a snack bar staffed by people with special needs at the Jewish Community Center near our home. Though a trained therapeutic staff-support person (TSS) was always at her side, making sure her behavior was appropriate and keeping her on task, still it was work. Third, I believed in some equally vague way that the law would protect her. In the back of my mind was the knowledge that if Rachel had been born less than a generation ago, I would have been advised—pressured, perhaps—to put her into an institution. Even if I had ample funds, I would have been hard pressed to find a nearby school she could attend. In those days a conversation with the words work and Rachel in the same sentence would not have been even vaguely feasible. The Developmental Disabilities Assistance and Bill of Rights Act of 1975 and the Education for All Handicapped Children Act of 1975 (now called Individuals with Disabilities Education Act, or IDEA) passed only eight years before Rachel’s birth. These laws guaranteed her access to free education, the chance to find decent, affordable housing in her own community, the opportunity to work and play—in short, the constitutional right to choose how and where she wanted to live.
I was lulled by these laws and by the fact that thus far I had not had to fight for Rachel’s right to be educated. In New Jersey, where we had lived until she was 8, she’d had excellent services, starting with an early-intervention program she attended as an infant. And when I moved to Pittsburgh, ready to fight if necessary to have her placed in an approved private school of my choosing, the school district looked at her medical and educational documents from New Jersey and cooperated fully with my desires. In 1992 she began attending the Children’s Institute, and since then the school has been fulfilling the law by providing her education.
When Rachel turned 14, she began the “transition process” as stipulated by a 1997 revision of IDEA, the time when we—parents, educators and Rachel herself—were supposed to begin to prepare her for life beyond school. Each summer since then, I’d filled out long questionnaires with dozens of questions about her likes and dislikes. I listed the agencies that had worked with her, the stores and restaurants she liked. I wrote down her favorite foods and games, her after-school activities and some activities I wanted to see her try. Could she be trusted with money? I was asked. Did she understand the passage of time? Could she accept responsibility for her actions, make appointments, talk on the phone? I answered these questions carefully, with her best interests in mind. I prided myself on being realistic, believed that I had no illusions about my expectations for my daughter. I could see the big picture, I would have said.
Then in September 2001, I opened a manila envelope from Rachel’s school, looked at her curriculum for that academic year, and saw washing machine, dryer, setting the table. I didn’t think, This is great, or even, This is the law. I thought, full of utter despair, They’ve given up. Of course I knew that she’d been working at school—she and her class had tried out some lawn-maintenance jobs and had torn paper for the kennels at the Animal Rescue League—but her educational program in past years had included looking at pre-primers, sounding out words, learning to develop a sight vocabulary, answering verbal-comprehension questions about a story, counting by rote to 35, identifying seasonal changes, the needs of a plant, the characteristics of lions, tigers, elephants. Though she continued to function well below grade level, the tone in the documents had always been full of strategies that would be employed and accommodations made for her, full of hope for what she might yet become.
The language in the document that set out her plan for the 2001—2002 academic year was blunt: “Due to neurological disabilities and extensive need for modification in all areas, Rachel is unable at this time to participate in the general regular education curriculum.” She would be in the Life Skills Program instead. Her goals would be to learn the location of classrooms, sort mail by number up to 20 with 60-percent accuracy, count five items without cues, collate four color-coded items with verbal cues. The tasks seemed so meager—so pathetically small. First I bristled. Then I thought, She really is retarded, though for 18 years I had known this, believed 1 had accepted it fully. But there was something final about it—is and always will be “unable to participate.” Looking at this document, I was forced to see that progress for this school year was being measured by my 18-year-old daughter’s ability to deliver mail independently to a two-room route in a building she had known for nine years.
In October at the meeting to discuss her IEP—Individual Educational Plan — I said I wanted her teachers to continue working with her on some basic academic skills, since I believed it was important for Rachel to know the difference between Women’s Room and Men’s Room, between Entrance and Exit, Cheerios and Frosted Flakes. And indeed, with just the spirit of cooperation I’d always felt at these meetings, some additional goals were drafted: that Rachel would “identify words related to shopping, community signs, menus and recipes,” that she would make change up to $l. I thanked her teachers and the representative from the school district for working with Rachel and left the building alone.
I was still reeling, utterly stunned. What about the progress she’d been making at the café? Her TSS had been telling me that lately she had been more cooperative about working, that she was using the cash register and closing up the café without being reminded of the sequence of tasks she had to do. Yes, I understood that the JCC café was a protected environment and that she had someone at her side prompting and cueing and redirecting. Still, two rooms without distraction—was that the most her teachers at the Children’s Institute thought she could achieve?
The only way I would learn whether I was deluded or her teachers underestimated her abilities was to observe her in class. But several months would pass before I stepped into her school. And that, I think, had to do with the fourth reason I had held onto my some-job-some-where dream and let myself imagine that those 1975 laws would be carried out flawlessly, that along with some job for Rachel, there would be someplace for her to live, some guaranteed safety net. I was tired. Rachel is a difficult person. She gets funding for mental health services because of her “long history of behavior problems, particularly when she is with her mother.” Whatever doesn’t require my urgent attention goes into an okay-for-the-present category. Her teachers and staff were there, and so had been her future out of school.
I’ve tried hard to understand my inscrutable daughter. I listen to her, interact with her, worry about her. I’ve accommodated to her deficits and championed her strengths and thought of myself as her advocate and her interpreter, the one who understood her best. That spring, after visiting Rachel’s school, I realized that I had failed to integrate all I knew about Rachel. My view of my daughter was limited. So was my understanding of “work.”
Here’s what I learned.
1. Rachel must learn how to make toast.
She was around 5 when we started working with her to put on her own shoes. An occupational therapist strung elastic laces in her shoes so that tying and untying would be unnecessary. Then we reinforced—and reinforced—the procedure, starting with “off,” which was easier. First you sit in a chair. Next you bring one leg up and over the other. Cross that leg. Reach for the heel of the shoe. Pull. It was the first time I considered how complicated, and how frustrating, it might be to take off one’s shoe.
I thought about teaching Rachel to put on her shoes when I observed her morning cooking class. The group had been doing a unit on breakfast, and on this particular morning, their teacher, Bob Russell, produced a bag of bread and announced that the topic for the day was toast. Learning to make toast, like putting on one’s shoes, is a multi-step operation. First you had to wipe down the counter “because you might drop the toast, and germs are gross!” Then you had to figure out what you wanted to put on the toast. And then, after the students slowly offered suggestions for what they might put on their bread—butter, peanut butter, margarine, jam—they had to figure out where they might find these things.
For instance, “Where is butter kept?” Bob asked. What about the jelly?
So you have this purple jelly. What flavor is the purple? What flavor is the red?
Sometimes you have to push hard on the toaster handle to get the bread to go down. Sometimes you don’t.
How do you get the containers open? Sometimes you lift the lid. Sometimes you unscrew the jar.
What do you use to get the stuff out—a spoon or a knife? Can you manage a butter knife, or will you need a broad, flexible spreader?
Safety. Germs. Hand-washing. Choice. Spreading what you’ve chosen to put on the toast as evenly as possible. Trying to cut the toast in half.
That night at dinner, I sat across the table from my daughter and heard myself say, “Don’t shove giant chunks into your mouth….Chew your food—with your mouth closed please….Use a napkin….Wipe your face and hands.”
I thought about work not merely as a specific job or career but as “exertion” and “effort,” which also are definitions. I thought of how hard Rachel worked, how for her getting dressed is work. So is clearing the breakfast table, brushing her teeth, negotiating the front steps on a sunny day. Even eating was full of lessons: You could choke. You’ll gross people out. Cleanliness counts. Little is self-evident to my daughter, since she is not attuned to matters of safety or health or other people’s judgment of her. And these small, necessary things—cutting her food into smaller pieces, opening the napkin, wiping her fingers—are labor for her.
At the same time, she can be astoundingly lazy, capable of standing for a half-hour in the shower and never once reaching for the soap. She tries to manipulate everyone she meets. The instant a new person is within earshot, my princess of Pittsburgh will get that person to lift, tote, fetch, serve and attend to her every need.
Rachel must learn to make her own toast. Even if she is blessed with the most accommodating friend or aide, she must learn to choose what she wants to eat and where she wants to go. She must be responsible for basic hygiene and cleanliness. The more independent she becomes, the better chance she has for being out in the world, something my gregarious daughter craves. The domestic skills she learns will carry her beyond the kitchen into the world where things have levers, lids and screw tops, are stored in cabinets behind wooden doors, where there are slots, stairs, escalators that go up and down, revolving doors. Learning to make toast is helping her live with dignity.
Toast is more than toast.
And Life Skills doesn’t mean this is the end. These skills will help her be part of a community and part of the working world.
2. Supported employment is not a sure thing.
To most people there’s a single face of individuals with mental retardation out there in the workplace: the supermarket bagger. It’s the most visible job, the one we see most often. A bagger, like my pal Jimmy, an older man, balding, missing a few teeth, who bags groceries efficiently and carefully at the local supermarket, heavy stuff on the bottom, the eggs in a separate bag. (When Jimmy sees me, he stops, opens his arms wide, grunts with utter glee, and then pronto is back to work.) According to the 1990 census, about 87 percent of the seven million people in the United States with mental retardation are, like Jimmy, mildly affected, a little slower than average in learning new information and skills. In the workplace they have proven to be diligent and loyal; they don’t job-hop or pose any additional health or safety issues.
At Rachel’s school this kind of “competitive employment” is only one of three categories for students in the transition program and a possibility only for those who can become independent, learn time-management skills and how to use public transportation—all this before mastering the job itself. Other students are learning skills that will enable them to seek “supported employment,” in a sheltered environment. In the third group are those with the most extreme health problems and disabilities, who will go to respite care or an adult training facility.
In April 2002 I visited a work-production class where students were learning specific skills.
When I visited Bob Russell’s class, I learned that making toast was more than figuring out how brown you liked your bread. After I visited Dawn Tomlin’s class, I understood that succeeding in work production meant not merely mastering specific job skills, like sorting, counting or tallying, but also improving “time-on-task” skills, such as endurance, work rate and speed. Good workers must be able to interact properly with each other. They have to learn to ask for supplies when they run short and seek help if there is something they don’t understand.
Dawn’s room was wonderfully familiar, on its walls a map of the world, a poster of baseball legend Roberto Clemente, a banner that read, Understand the similarities. Celebrate the differences.
The day of my visit, seven students sat around a long table. For several class periods, they’d been helping refurbish science kits for area schools for the Asset Project. The plastic pieces—thousands of them—for these kits had been separated into storage bins and stacked on the shelves of a cart. That afternoon the first job was sorting two tires into a Ziploc bag.
Two students were in wheelchairs. One had partial use of one hand. The other boy, Robin, writhed continually. On the tray of his wheelchair was a state-of-the-art language board that had been programmed to say at his command the kinds of things any student might need to say, for instance, “I need more supplies.” He needed only to touch an icon on the board for it to speak. It was quite forgiving. The board “understood” Robin even when his aim was imperfect.
Five other workers were at the table — two dreamy-looking kids, and three others, including Rachel, on this day wearing her purple shirt and two strands of purple Mardi Gras beads. A teacher, two aides and a student teacher were also helping out.
“Everyone will start with a yellow bin,” Dawn said in a loud, clear voice. “Everyone will have—what do you have? A tire. You have to put two tires into one bag. This is the first step. Okay. Does everybody have a large tire? Everybody should have a large tire. Now, what do you need?
“A bag!” someone eventually offered.
“Set two tires aside. You’re going to have to put two—listen, Jake. Two tires into one bag. Okay? This is the first step.”
And so they began, each with his or her spectrum of behavioral, cognitive and physical limitations. Each with issues. In this class, as in cooking, Rachel’s were less apparent. My being at her school had put her into a bashful mode.
The boys in the wheelchairs first worked the tires into a plastic container. This made it easier for them to slide the tires into the Ziploc bag. If the sheer effort was obvious, so, too, was the absence of frustration, at least on this day.
The teachers prompted and coached without stop.
“Two in a bag.”
“Good job, Jake.”
“Robin, you are phenomenal!”
The language board said in its sci-fi voice, “I need a bag, please.”
One boy had a hard time opening the Ziploc bag.
One girl was so slow it was as if she were floating underwater. Beside her a girl filled the bag without prompting or delay, then held up the bag, eyed it, placed it on the table, and very precisely, a fraction of an inch at a time, pressed down on the zip line until the bag was sealed. The whole process took a couple of minutes.
“One in each container!”
“You need to ask if you need more supplies.”
“Dawn! Dawn!” This was my kid’s familiar, maddening, attention-getting chime.
Dawn was busy with Jake, asking, “How many are in a bag? How many, Jake?”
“And how many are in that bag?”
Jake looked up, fastened his huge eyes on her.
“I’m running out of bags!” Rachel said. Then catching my eye, she gestured come here with her fingers.
I ignored her, and she went back to her task.
And then—here’s the thing—everyone was at work. Except for the teachers’ enthusiastic prompts, the room was quiet. There was no sign of discord or unhappiness, no sense that this was drudgery. These students were more focused than the kids in an average public-school class. They were working! They were engaged. And they kept at it for 20 minutes, until the first sorting job was done. The next step would be for them to put smaller tires in the same bags.
But first, break time. A chance to stretch or move about, get a drink of water, chat with their friends. One of the aides put on latex gloves, filled a huge syringe with milky-colored liquid, and squirted it into Robin’s mouth. He gurgled and gagged: it was a messy, difficult process.
When Rachel found me, I asked what she was doing. “They have them putting in tires for other people,” she said. “They have a lot of stuff for students to sort.” Then she whipped out a bottle of purple nail polish from her pocket.
Her classmate, a dark-haired girl, dreamy and angelic-looking, approached, getting right up in my face to sign. I was embarrassed that I did not understand her, reminded that I was a foreigner in this country where my daughter spent most of her time.
At last she formed a word. “Mommy?” she asked.
“Yes, I’m Rachel’s Mom.”
“Boots?” she asked.
I lifted up my pant cuff and showed her. “Yes,” I said. “I’m wearing boots.”
A boy came over to show me the mean-looking dog on the front of his T-shirt. “Kmart!” he said. I’d already heard him tell the teacher where his mom got the shirt.
When break was over, the students were back in their seats for a second, shorter session. Dawn reminded them with the same short, crisply delivered sentences that they would be putting two little tires into a bag that already had two bigger tires. And then they were back to work.
When I told Dawn that I was impressed, she agreed that the kids had been working well. “We can’t keep them supplied. Their rate and speed has really improved.”
I was impressed.
I was also stunned—by all the effort it took to put two tires into a plastic bag, by the sight of my daughter with her peers, by the range of ability and disability in that room, the sheer diversity of this population we so blithely lumped together as having “special needs.” But mostly what stayed with me was the diligent way the kids worked.
On the way to see Michael Stoehr, who heads the career-education program, I thought how I felt when work goes well, when I have been so absorbed by my tasks, so “in the flow” that time vanishes. I thought about my sense of well-being at the end of a day like that, and how much I wanted that for Rachel, not because work per se would be good for her soul, not because I was pretending her life would resemble mine, but because when she was focused—playing Free Cell or solitaire on the computer, for instance—she was at peace. When we play Uno, one of the few games that fully engages her, she is fun to be with, her constant talking silenced at last.
So I was full of dreamy good cheer when I knocked on Michael Stoehr’s door.
We talked about Dawn’s class and some of the other work experiences Rachel has had at school—counting, sorting, housekeeping tasks. “One of her biggest difficulties is concentrating—just staying on task,” he said. “She’s distracted by what’s going on around her.” Though she was being considered for supported employment, it wasn’t a sure thing.
In the world outside school—even in the world of supported employment—she would be expected to be “somewhat independent,” he said. The job-coaching she would need was “pretty intense, pretty long range. And at this point, the supports just aren’t out there.”
Supported employment wasn’t a sure thing.
Sometimes reality hits like an ax.
3. She talks so much it’s hard for either of us to know what she wants.
What did Rachel want? Maybe it was ridiculous the way we were pushing her to do so many things that were so difficult for her, I thought when I left Stoehr’s office. Maybe she just didn’t want to work. But if she didn’t have a job, what would she do all day long when she was no longer in school?
In this era of self-determination and person-centered planning, I was supposed to be asking these kinds of questions. All the literature I got explaining the transition process urged me to view my child as a “total person,” and make sure her desires were “at the heart of decision making.” The materials prepared by the Allegheny County Department of Human Services, Office of Mental Retardation/Developmental Disabilities reminded me that self-determination is “a fundamental human right.” People with mental retardation, should have “the freedom to choose the services and supports they want, the authority to control limited resources and the responsibility for the decisions they make.”
How can I respect Rachel’s fundamental human right to choose what she will do after she is out of school without abandoning her to a world she cannot fully understand?
Well, there’s conjecture: what I think she wants, based on my observations. And there are the dozens of questions about her likes and dislikes that I attempt to answer for her as honestly as I can when I fill out paperwork. And, I can’t deny, there’s my own will at work, since left to her own, Rachel would rather sit in front of a trough of potato chips and eat until she falls asleep than go to Special Olympics basketball. But I say, “She likes basketball” because when I spy on her from the doorway, I can see she’s enjoying herself. I know I’m cheating, that I want her to play basketball and swim because it’s good for her. Still, because I really do want to respect her desires, I sometimes set up my little micro-cassette tape recorder and interview her. I mentioned this to a friend once, and she was somewhat taken aback. “Why don’t you just talk to her?” she asked.
I interview Rachel so I can hear her. In everyday life she is so demanding, her nonstop talk so full of what I think of as sheer nothingness—endless questions about each move I make, about future plans, mostly to do with food, which I’ve answered dozens of times. Yes, I’ll make dinner as soon as you hang up your jacket and use the bathroom. Yes, hang up your jacket. Yes. Bathroom first. Yes. Be sure to flush. Yes. I said use the bathroom. Yes. Did you wash your hands? Yes. Wash your hands first. Yes. With soap. Yes. You didn’t flush. Her conversation is full of things that are real, overheard things that happened to someone else, things that are wrenchingly true.
If Rachel’s incessant talking is both her prime means of communication and her strength—she can be funny and charming, full of personality—it is also her most profound, most unmanageable behavioral issue. She is, as one document states, “attention seeking, with a tendency to interrupt and begin talking about a non-related topic….She is difficult to redirect.”
Sometimes it is so noisy when I’m with her that I must expend a great amount of energy willing myself not to shriek at her to just shut up.
Sometimes I’m an earthmover, and she is the mountain. I am up there in my little cab, yelling, “Get a move on!” and ramming her.
When I interview her, I wait until she’s out of the house before I replay the tape. Sometimes what I hear is how extraordinarily hard it is for her to process more than one or two simple, concrete questions before a tweeting bird or footsteps in another room set her off on a tangent. Sometimes I can sort out someone else’s interests from her own. And sometimes in the silence of my room, apart from her, what I hear with great clarity is her heart’s desire. Then I am close to all that makes her human. Listening to the tapes, I think about her in bed, lost beneath a huge gorilla and teddy bear and a dozen smaller stuffed animals. I think about her own, very clearly defined sense of “cool”—the hooded sweatshirt and sweatpants her sister chose for her birthday, which she sneaks out of the closet and tries to wear every day, even in summer. I think about the books she cannot read but insists upon getting at the library every Saturday and carrying everywhere, about her purple Mardi Gras beads. I think about her telling a friend that she wants to drink beer when she turns 21.
I recall the day we were preparing for her first-ever sleepover guest and that, when I asked what she wanted to do with Jennie, she said, “Thnuggle.” I think about the childish lisp that, given all the crucial therapies, all the urgent tasks she must master, we’ve never tried to correct, and this most human desire to be close to others, a desire that her incessant talking and her resistance to hygiene threatens to prevent.
I listen to the tapes and hear myself asking and asking what she wants, and I hear her say:
“I want to go on the bus.”
“I want to be able to go out with a friend once in a while and do stuff.”
“I want to see if I can get a cell phone, Ma.”
“I want to look for an apartment.”
I ask if she wants to have a job.
“Yes,” she says. “Somewhere in this area.”
What would she like to do?
“Look for something me and Jennie can do together.”
I cue Rachel, try to get her to name some favorite jobs.
“Making dinner,” she says. “Computer.” “I like to look at the newspaper once in a while.”
I back up to try to get her back on track. “What’s my job?” I ask.
“Teaching,” she says. “Writing.”
“What about the JCC?” I ask. “What’s your job there?”
“Working at the café.”
What does she do there?
“Sell stuff to drink and eat. They have all different ice creams and all that stuff.”
“What happens if a person comes and wants something?”
“They don’t have any more sandwiches.”
“So what happens if—”
“Listen! Listen. Just listen! They don’t have any more sandwiches because they sold them all last time, and that’s why we’re doing this, because we don’t have any more. We only have what’s on the board.”
Again I back up and try to redirect her. What does she do when the customers are gone?
“We clean up. The whole purpose is to clean up after we’re selling candy and selling drinks and locking up machines. And we’re doing that because we always have power-walking, but not today. With whatever her name is. She didn’t show up, so Jennie left, and then I left.”
I remind her that the confusion with power-walking was something that happened a few days ago. Maybe she can tell me about cleaning up.
“There’s a big problem with the machines, usually.”
“The yellow-and-gray machines. The Popsicle machines, Ma. The ice-cream machines. They got locked up wrong yesterday by someone, and what happened was, after the fact that they had them locked up wrong was like a weird compliment, accomplishment, with like after this was going on it was fine, and then after that was—what are you writing down?”
Later I ask if she likes her job at the JCC.
“People talk to me too much, and I just can’t stand it. It’s hard for me to concentrate. It’s better for me to do the dry cleaning, Mom. Better than the café.”
Part of that statement is profoundly true. My daughter, with her relentless talking, is so terribly distractible that she cannot concentrate anywhere there is noise or conversation. But the dry cleaning, which she could nicely define (“It’s where you take your clothes to the Laundromat, and you have to pay for it”) is something she knows only because her friend had some with him one day. Dry cleaning is like drinking beer at 21 and going to college—things that others have or discuss, rather than a wish from her own heart.
A few days after my visit to Rachel’s work-production class, I asked her what jobs she was doing in school.
“I’m not doing the cups anymore,” she said.
“What do you do in the mornings?”
“Only the paper towels.”
And what did she do with the paper towels?
“Put them in the holder. In the paper-towel bin.”
“And what else do you do?”
“Plates. We fill plates. Although here’s the big part, Ma—are you ready for it?—we’re selling chips and stuff like that now.”
And so we had moved in time and place, from school, perhaps on that day, to her job at Café J on a nameless day in a month that fell as randomly as a snowflake.
4. There is no safety net.
Though Barbara Milch’s official title is division director of children, family and youth, I think of her as the person who has helped make the JCC of Greater Pittsburgh into a near-perfect world, where people with special needs are a visible part of the community. She spearheaded the current programs that make it possible for kids with special needs to be included in after-school programs and summer camps. Nor have teens and adults been forgotten: Most of what Rachel does outside of school—her chance to go to a play, see a ball game, be with friends—originates here at the JCC because of Barbara’s efforts.
The café was initially a joint project Barbara initiated with Jewish Residential Services to employ people with chronic mental illness as a primary diagnosis. When funding from a startup grant ran out, she was able to put anyone in the job. Thus Rachel and her cohort (and their therapeutic staff-support people) were given shifts.
In my some-job-somewhere phase, I took great pleasure in seeing Rachel in her red apron, wearing her staff badge. The JCC is a busy community center with nearly 15,000 members. Lots of people I know who use the athletic facilities or have kids in child care stop at the café and are served by Rachel. It made me feel good to think of my daughter out in the world this way, not merely some mysterious, hidden-away, half-grown child I was rumored to have.
Now that I am looking beyond the gloss made up of relief, gratitude and fatigue, I am forced to ask: What will happen when Rachel has no TSS?
This is not doomsday thinking. I’ve already contested the proposed termination of funding for this costly behavior-management therapy, and though I was successful, still I know that these services are designed to be “faded,” even though her issues may never be completely resolved. Rachel cannot work in the café without this assistance—not for the foreseeable future, at least.
She’s learned a lot since she began at the café. She knows the prices of everything and that the customers should check the board to see what is being offered that day. She has memorized the sequence of tasks necessary to close down the café.
Skills are not enough. Before this spring I imagined Rachel’s future based merely on her strengths (she’s gregarious) and deficits (poor vision, poor fine-motor skills). But I had failed to regard the rest of her. It was as if her behavior and attention issues were things that made it hard for me to live with her but would not impact her ability to work. I had somehow failed to integrate what I had known all along: The greatest obstacle to her working is her distractibility.
At Café J she has “difficulty balancing appropriate socialization with her peers with the need to focus and concentrate on the demands of working in the café,” I read. “She continues to ask for assistance with skills she has mastered and can successfully manipulate various JC staff to engage in ‘over-helping.’ Often she does not want to follow through with requests to complete her responsibilities for the café.”
And didn’t she herself manage to tell me exactly why she was struggling? People talk to me too much, and I just can’t stand it. It’s hard for me to concentrate.
Barbara has tried to reassure me. “She will always have a home at the JCC.”
But at this time, in the spring of 2002, I am forced to wonder—a home doing what?
Though I cannot underestimate the importance of community, neither can I bear to imagine Rachel wandering the corridors of the JCC, trying to engage unwitting strangers in meaningless talk—unwitting strangers because, if she stays long enough, only strangers will not know to avoid her.
Wandering, following people, trying to engage them—this is what Rachel’s day will look like if she cannot be trained for supported employment. It is what she’s like at home, that most unstructured place, where everyone else is off doing something—reading, paying bills, talking on the phone, walking up and down the stairs. When we are home for too long together, Rachel’s calls for attention, her birdlike Ma? Mommy? Ma? are so insistent I choose the most distant part of the house just to escape her.
Michael Stoehr warned me that the supports Rachel gets at school are entitlements mandated by law, that after school these supports are often unavailable. At present they aren’t there for millions of individuals in the United States with mild mental retardation. Only 7—23 percent of these people are employed full time, in part because of the inadequacy of vocational training. Rachel, with her greater needs, is at far greater jeopardy At school and at the JCC, she has staff at her side nearly all the time. In the outside world, it’s different.
“Some agencies will say they’re going to follow her, but the reality is they’ll provide support for about a month or two,” Stoehr says. “After that they’re looking for results and turnaround, ready to pull out….It’s a very unfair system. There are not a lot of easy answers or nice solutions.”
I know this is true, just as I understand that distractibility is Rachel’s most serious handicap. And yet I have seen her quiet down. I have watched her sit at the computer for long stretches of time. And it makes me wonder. In this era adaptations are made so people can learn and travel and work. There are language boards and gigs and orthotics, bicycles that can be pedaled by hand, computers that speak, lifts to bring wheelchairs onto buses. Must I believe that an adaptation can never be made for Rachel? Must I say that she will never be able to work? If I do that, I am left imagining my daughter wandering aimlessly, trying to engage people, unwittingly pushing them away—a lonely, marginalized person.
5. Take a nap and then wake up.
So you’re tired. So what, I need to remind myself. Take a nap, and while you’re sleeping, dream some sweet dreams. And then wake up.
You know what she needs. Now search for it. If you can’t find it, you’ll have to make it happen.
It’s exhausting, but what can I say?
She has her work, and I have mine.