It’s 8:10 on a gorgeous May morning in a classroom somewhere in the East Bay. I can’t tell you the name of the teacher, I can’t identify the school, or even the district. People who work in special education are that afraid.
The teacher, whom I’ll call Ms. Heart because she’s got plenty of it, combines good looks with smarts and fiery resolve. Her near-psychic empathy probably landed her in this classroom, but it’s her resolve that’s kept her here. Ms. Heart is not a quitter, and she doesn’t let anyone around her quit either.
Right now she’s dashing across the linoleum floor in running shoes, bermuda shorts, and crisp blue blouse, straightening chairs, putting together toys, connecting headphones to boom boxes. “I have three assistants,” she explains as she pelts around the room. “Each gets two fifteen-minute breaks and a thirty-minute lunch. Nobody can go at the same time, ’cause that’s not good for the kids. Besides the assistants, each kid is on a different schedule, and those schedules change depending on the day of the week.”
“You’re the general,” I conclude.
She nods. “That’s right. I tell ’em all what to do.”
Within moments, the three assistants arrive, followed mere seconds later by the kids. There are seven children, kindergarten through second grade, and each falls somewhere on what special ed insiders like to call “the spectrum,” short for “Autistic Spectrum Disorder.” The number of kids included in that category is growing exponentially — the state’s department of developmental services registered 500 new cases in California in the last quarter of 2000, and 700 new cases in the first quarter of 2001. A syndrome that eight years ago used to affect one in every ten thousand kids has mushroomed to a rate of less than one in a thousand — and no one knows why.
By 8:20, Ms. Heart is full into telling everyone what to do, but it’s done so deftly and with such precision that no one bristles, they just hop to. Besides, it’s clear that the classroom would dissolve into chaos without a firm hand. One of the kids is screaming and wailing and punching an assistant who glances with increasing desperation to Ms. Heart for help, two other kids are wandering aimlessly, poking at anything in sight, and one child is spinning on a stool. Ms. Heart chivies everyone into small purple chairs, where the kids squirm and fidget but finally sit in a line. The single girl seems lost in the group of boys, but soon she makes her presence felt by rocketing from her chair, only to be snatched by an assistant who gently but firmly brings her back to the seat. Meanwhile the wailing boy keeps wailing. Four long minutes have passed.
“It’s check-in time,” says Ms. Heart. Checking in involves each kid saying hello to the others in a song and then finding his or her hand-printed name on one board and moving it to its proper place on another. Given how hard it was to get them seated, I can’t believe she’s letting them up again, but I soon see, in example after example, that this willingness to skate close to the edge is exactly why Ms. Heart is such a great teacher. She isn’t satisfied with quiet kids or kids all in a row; she wants the kids learning, not behaving. Learning means taking risks, and Ms. Heart demands courage and persistence from her assistants and the kids.
Although it’s nearly impossible to keep anyone’s attention for more than a few seconds, Ms. Heart manages to get the whole group to start singing “Old MacDonald.” She scampers down the line during the song, making eye contact with each child, acting out the animals, and even getting the wailing boy to stop as he considers how a chicken clucks. “Excuse me,” Ms. Heart says several times to first one child and then another who attempts to leave his seat in the middle of mooing or baaing. “We’re at work here.” It’s 8:37.
In another few minutes, each child has moved to a separate station. Two do discrete trial training, each with his own assistant. Two work up front, performing tasks according to a method called TEACCH. One listens to music through earphones, one learns the sounds of letters, and one plays with cars and trucks on a mat. The TEACCH kids have ten to fifteen trays stacked to the left of their desks. Each tray contains a different task: a jigsaw puzzle, boards on which letters or numbers must be matched to a printed likeness, blocks that must be put into holes of the right shape. Once the child finishes the puzzle, he puts the tray into a basket to his right, then picks up another from the stack on the left. Despite its appearance, says Ms. Heart, the method doesn’t teach puzzle-solving or even staying on-task, though those are secondary gains. What it really teaches is finishing.
The concept that something is finished, that something can stop, is almost impossible to grasp for autistic kids, who tend to drift rudderless until they can find a repetitive motion, phrase, or thought to which they can attach. When that repetitive motion presents itself, it’s comforting, something to anchor to. The primary job of Ms. Heart and her assistants is to tear out that anchor and to keep the child focused on what’s happening not in his head, but in the classroom, on the task at hand. Otherwise, the child — more slang — is “self-stimming,” that is, engaging in self-stimulation. And that means he’s lost.
There are many rewards to staying on-task. There are crackers or pretzel pieces for speaking correctly, and there is lavish praise. “Good job,” says each assistant over and over. “Good listen.” One woman touches the child’s face when he drifts. He pulls himself back to his discrete trial skills. He is having trouble matching colors. He keeps putting plastic purple frogs in with the blue ones. But he doesn’t really look at the fields of colored toys; he’s distracted by — something. “This is only his second time doing this,” the specialist says apologetically. “Good job!” she tells him as he matches yellow and then red. She tries again with the purple. “You always want to put it with blue,” she cautions. “Look at your fields.”
Tearing out the anchor of repetitive motion over and over involves a relentless tug-of-war. Almost every minute, every adult in that room is forcing a child to do the one thing he doesn’t want to do — interact with someone or something outside himself. The task is not important — matching the colors or the shapes. What’s vital is getting the child to focus long enough to accomplish the task.
Ms. Heart manages to watch everything. She sees when one child has a little scratch and instructs the assistant to put a bandage on the tiny wound. It’s the only way to stop the kid from incessantly picking at it. She notices when it’s becoming too noisy and takes away a fire engine with a tiny siren. Most autistic kids are very sensitive to over-stimulation, which includes noise. She coaxes each child to interact with her; she doesn’t ignore misbehavior but confronts it instantly and corrects it. Meanwhile she keeps an eye on her assistants, suggesting Play-Doh might be in order here or a cracker there. The assistants need the help; two of them are clearly out of their depth, and they keep casting worried or beseeching glances at Ms. Heart.
At 9:25, a wave of expectation rushes through the room. Recess. The kids are out the door at 9:30. Ms. Heart relaxes for an instant, then she pushes the chairs back in line and picks up a toy or two. “Two of my assistants aren’t trained,” she says. She looks exhausted. “When they’re trained, it’s a lot easier.” Then she too is off to the playground.
Twenty years ago, school districts that could offer this kind of intensive instruction were rare. Yet even then serving all children was mandatory. Federal legislation requiring that a public education be accessible to every child — including those who are disabled — was passed into law in 1975. Since then, states have taken varying paths toward interpreting and implementing the act, but virtually everyone I talked with agrees that the stakes have risen considerably in the past few years. This is due to several converging factors: parents are now savvier and are demanding more intensive and costly services, districts on the losing end of expensive parent-initiated lawsuits are desperate to stay out of court, and the explosion of autism diagnoses has left many districts reeling. “There are districts in California that are about to collapse under the weight of this,” one principal told me.
Most acronyms try to brand an idea; an IEP, or Individualized Education Plan, defines a vision. It also delineates a minefield that school districts, especially those that are small and underfunded, must try to negotiate. In order to give children with disabilities the free and appropriate education that is guaranteed them by law, parents and school districts must agree upon a strategy of learning specifically designed for each child.
The IEP is more than a plan of action; it’s a binding legal document defining the district’s relationship with a disabled student. It includes an assessment of the child’s present level of development, both academic and nonacademic. Annual goals are defined, as well as short-term objectives. A description of the services — such as speech therapy, occupational therapy, transportation, socialization — necessary to implement these goals is included, as well as a description of the extent to which the child will participate in regular school programs (called mainstreaming). The start-date and length of all the services are given, and intervals are stated for filing written evaluations by teachers, therapists, and specialists. If the child is over sixteen, transitional courses must be defined and implemented (districts are required to provide educational services for children up to age 22).
Districts fall under the umbrella of a Special Education Local Plan Area, or SELPA, which oversees and aids districts’ special ed programs. Large districts have their own SELPA — Oakland does — while smaller districts can band together: Berkeley, Albany, Emeryville, Piedmont, and Alameda form one SELPA. State money earmarked for special ed goes directly to the SELPA and is then disbursed to individual districts. This allows districts to share the special education burden. One district might hire a specialist to teach kids with a specific disability — blind children, for instance — while another district might concentrate on deaf kids or the medically fragile. The SELPA places children appropriately and monitors teacher training and student progress. But the increase in autism diagnoses has strained this system to the breaking point.
Says one mother, “Autism is hard to explain. But pretty soon, everyone’s going to know what it is.” In addition to social impairment, kids on the spectrum generally demonstrate deficits of speech, comprehension, and fine motor skills. Some kids can read and talk, while others express themselves in grunts and roars. Some go on to graduate school and insular existences focused on their specialty; those who can’t control their aggression wind up in institutions. Between these extremes are adults and children who seem anxious, obsessive, and odd.
A speech therapist characterizes the difference this way: “When we’re talking, you respond to something I say, and I listen to you, and I respond to you. We take these things for granted. We can train [autistic] kids to respond to scripts, and so they’re relying on scripts to be social. But if the script changes, they’re lost. Older children think the kids are weird, and younger children are afraid of them. I haven’t seen that change in any meaningful way despite years of therapy — it’s still a very basic and deep disability.”
Louise Glueck is quiet and unassuming, the sort of person your eyes skip across without seeing. At 49, she seems the definition of ordinary. But underestimating Louise Glueck has cost the Livermore School District thousands and thousands of dollars.
Glueck’s son Matthew was born when she was 38. “At two, he wasn’t making the developmental milestones,” Glueck explains. We are sitting in the San Ramon Starbucks, which resembles a drafty living room with its overstuffed chairs and little tables, except that this living room features tinkly music and the constant roar of two giant espresso machines. Once a month on a Wednesday night, Glueck and another parent host a group here for parents of autistic kids. “I was told I was overprotective, but I wasn’t. The school system told us we were overreacting. He was only 26 months old when he was diagnosed, and the doctor told us to move on it right away.”
Glueck got Matthew into Alameda County’s Infant Program. “[The district] kept saying they had an appropriate program for him, that they could offer him what he needed. But I did a lot of research and talked to a lot of doctors, and I found that he needed specialized teaching, and he needed it right away. He was very frustrated that he couldn’t communicate, so he was tantrumming constantly. We ended up putting him into the Stars School in Danville.” Stars, run by Dr. James Partington, is a full-service teaching environment that has now moved to Walnut Creek. “We paid privately until we could get funding from the school,” she says.
To get that funding, Glueck sued the school district. “We said the school couldn’t provide appropriate treatment. All the specialists said he needed highly interactive one-on-one teaching and behavior intervention. He was not getting that in the school system.” She pauses. “They just didn’t think we would prevail.”
Matthew spent a year at the Stars school, a $30,000 tab the Livermore School District ended up paying, along with the Gluecks’ attorney fees and other court costs. After that year, the district convinced Glueck to bring Matthew back to the public schools. Glueck theorizes that district officials thought they could convince her to drop the one-on-one teaching, so that by taking Matthew back, the district would spend less than it would paying for him to attend a private school. Again, the district underestimated Glueck.
Matthew is now eleven, and he has always had his own tutor. “Well, they don’t call them tutors, but he’s always had a one-on-one aide just for him,” Glueck explains. “The first year the district agreed to hire Dr. Partington’s aides for Matthew. The last two years, we handpicked the aide.” Matthew is taught one-on-one 32 hours a week, both at home and at school, and the district picks up the tab for every hour, in addition to reimbursing Glueck for a behavior-based physical education program that doctors are convinced Matthew needs.
“But this is wildly expensive,” I say. “How can the district do this for every kid?”
“It is expensive,” she agrees. “But the IEP is a legal document — a child gets a program that suits his needs. And nothing would have been done if it hadn’t been for us, the parents, right there threatening to sue. Schools will quote school policy and make it seem like the law. But it’s not. Federal law supersedes state law. The schools may make policies, but it means nothing if your kid is in special education. There are hundreds of kids in special ed. And the state has plenty of money to give parents. In fact, maybe that’s why the parents in the last year haven’t had such a hard time. The state is funding things. Basically, the child gets what the child needs, not what the school district has to offer.”
This is wishful thinking — there are no special funds districts can tap, no secret state coffers that subsidize therapists and individualized PE programs — but Glueck’s focus is not on how districts can afford to treat autistic kids; she just wants them treated. The way Glueck sees it, autistic kids are in a crisis that must be addressed immediately, and the only means of addressing it is to continually modify the child’s behavior. If, for many kids, this means constant one-on-one attention by a trained teacher, so be it.
In Glueck’s view, the gap between normal and autistic kids at age two is narrow, but the gap begins to widen dramatically as language skills deteriorate and repetitive behaviors become embedded. “Some children can be mainstreamed later if they get the appropriate intervention early on, before kindergarten,” she explains. That means identifying the problem as quickly as possible, generally through a series of expensive diagnostic tests and specialist visits (“Parents can get the school district to pay for the assessment,” Glueck notes), and then enrolling the child into a preschool program, for which the district also pays.
“You need to have the label because the school district will tell you he doesn’t need treatment,” Glueck says. “They’ll say he doesn’t even need special ed. They’ll tell you that to qualify for special ed, he needs to be two years behind in everything. But it’s like insurance companies — they’re set up to deny you the first time. If you take the first ‘no’ and leave, that’s fine with them.”
Glueck and another parent, Renée Medeiros, started the parents’ support group in the midst of their own battles with the school district. “Our main goal is to give the parents a lot of information,” Glueck says. “If you don’t know the ropes, you won’t be able to advocate for your child. And you need to be Sherlock Holmes because the district isn’t going to tell you about a program or a particular therapy if it costs a lot of money.” Glueck is like a combination ambulance driver and jailhouse lawyer: “Your child is in an absolute emergency, and you need to get in there quickly. Remember, it’s your child’s civil rights.”
She readily admits that some parents don’t like her message, and those people don’t return to the group. “You have to convince parents that the school district doesn’t have their child’s best interests at heart. They say the district people are nice. Well, nice is fine; the district is nice until you start asking for things.”
Other parents come to the group inconsolable, but Glueck has firm rules about not indulging behavior that doesn’t benefit the child. “We have a mom who’s cried the last two meetings. I told her that was it; she can’t cry next time.” Can’t because the parent needs to get off the pity-pot and into fighter-mode. “Parents are supposed to be driving this train,” Glueck says, “not the school district.”
When I relay some of Louise Glueck’s experiences to Marie Souza, the director of special services for Albany School District, Souza shakes her head. “All this tells me is that her district has not done a good job communicating with her. The parents and the district must be allies. When they become adversaries, it’s just very sad.”
What’s sadder is that Souza can’t be cloned. She was described to me as a treasure by numerous people, both inside and outside Albany, and once I met her, I understood how amazing she really is. An Oakland High graduate, Souza, at 60, combines pragmatism with a compassion as wide as the ocean. Her philosophy was developed in the school of hard knocks, and she’s capable of communicating it, no-holds-barred, to anyone who will listen. Souza takes nothing for granted, and she’s not interested in covering anyone’s behind, including her own. For Souza, the kids are the ultimate test of how her program works, not how much money is saved or spent, and not how many parents are mollified or lawsuits avoided. Souza truly believes that parents and the district must be partners in the child’s education, and sometimes that means accepting realities that are hard to face.
“Parents must be informed,” Souza says. “Otherwise those parents are not being conscious. They need to deal with their grieving while the child is getting older. If they’re always striving to make the kid normal, if, for instance, they think that one-on-one therapy is going to make their child normal, their grieving is not being dealt with. There are very few of us who look at our children as real people and deal with them as they are. We’re always trying to change them, to make them be different. And that really bugs me.”
Souza always knew she wanted to be a teacher. She went to Merritt College and then on to San Francisco State for her credential. Her student teaching was spent in Oakland schools, but when she became pregnant not long after graduation, she ended up staying home for twelve years, engaged in the full-time occupation of raising three boys. When she was ready to come back in 1974, she couldn’t find a teaching job. “My father was in education, and he knew a lot of people,” Souza relates. “I got a call from the director of special education who offered me a job teaching the profoundly disabled. These kids were all ages, three to twenty-one. I figured I could do it.
“The first six weeks, I would stand at the door as the kids were either wheeled in or walked in, and I felt sick to my stomach. I couldn’t figure out what it was. Finally I realized I didn’t know what to do with them. I didn’t know how to teach them. I had no training in how to help. So I began doing research.”
Souza knew that Wayne Saylor, a well-known educator from the Midwest, was spending a year at SF State developing a program to train teachers for the profoundly handicapped. Souza convinced him to do some of that development in her Oakland classroom. “When we had problems, he trained us on the spot. We got trained, and we also got our special ed credentials. In the course of it, I fell in love with what I was doing, and I understood in a deep way what special ed was all about.”
After eight years of teaching, Souza was asked if she would become a program specialist so she, like Saylor, could bring her expertise to other teachers. She moved on to take over the Albany program eight years later, in 1988.
Souza has seen it all — from the teacher’s perspective to the administrator’s. And she’s watched the laws be put into practice. “I started before any federal law was developed. The accessibility-rehabilitation act was signed into law in 1975, and it took the states four or five years to implement it. We began IEPs in 1980; at that point I went back to school and got a master’s along with administrative training. I was in school again all through the ’80s. What the law guarantees is equal accessibility to education, and that’s been the case from the start.”
Souza says that what has changed in recent years is the need for districts to cross every T and dot every I. “Paperwork has increased because parents and attorneys have become aware of the law. This has caused a lot of suits — which then means districts will be more intense about documenting our implementation of the IEPs. When I was at Oakland, there were always suits.” So far, Albany has dodged that bullet — “Suits have been attempted, but we’ve managed to mediate.” (Souza won’t say this, but it’s clear that the main reason Albany has remained suit-free is Souza herself.)
The other part that’s changed is the number of kids in special ed programs. “In Albany, we have ten or fifteen students that are labeled autistic, but it’s really a lot more than that. I can tell you that the number of kids who have autistic-like behavior has increased by three hundred percent over the last eight years. Our special ed population was just over two hundred in 1988 and now it’s 340.” With a school population of only 2,985 kids, more than eleven percent of Albany’s students take advantage of some aspect of the district’s special ed programs, the majority of them students with learning disabilities.
Souza explains that autistic-like behavior encompasses several disorders in addition to classic autism: Asperger’s syndrome, nonverbal learning disorders, delayed development, and neurological impairment. All have similar behaviors. Language — both receptive and affective — is impaired, as are fine motor skills and social skills. “We have to label a child for him or her to fall into special ed,” Souza says. “Sometimes we label the child to fit the parents’ needs. Some parents refuse the autistic label–the label is hard for that parent. Our district doesn’t care about the label; we want to meet the needs of the child. Every youngster is a different human being, and we don’t script IEPs for labels, nor do we have set goals, because the goals for every child are different. This is very time-consuming and expensive, but it’s meeting the needs of those kids.”
Souza outlines how funds are divided: “The state allocates monies based on your count. There is special funding for those with what are termed low-incidence disabilities — the deaf, the blind, the deaf-blind, and the orthopedically handicapped. But there is no special funding for other disabilities, and there is no ‘slush fund’ that districts can draw upon. When we allocate dollars for kids, we do it in partnership with the parents. In order for us to be effective, we need to have parents be our partners.”
Souza agrees with Glueck that aggressive therapy for autistic kids is needed, or the gap between them and normal children will widen. “That’s true with any behavior. Someone who has smoked for a year would have a harder time giving it up than someone who has smoked for a month. Any behavior that a child has that is aberrant needs to be intervened with.” Where Souza parts company with Glueck, however, is in the nature of the intervention. “I am so opposed to providing a child with the same one-on-one specialist,” Souza says. “That is so damaging to the child. It doesn’t matter who it is — that is so damaging, particularly for autistic kids. These kids hate change. The best thing for them is not to become fixated on one person and one method. They should be in groups and one-on-one with a broad range of people. If a child already has that bond with someone, we ask that person to come to school with the child and then do a slow fade.”
The key to working with autistic kids, Souza emphasizes, is in staff training. Yet because of mandated meetings with parents and the need to document each aspect of behavior, to set goals and assess how the goals are met, the staff has little “extra” time for training that would benefit teachers and kids. “We are always walking lines,” Souza says. “The costs of these services are outrageous. For a child to get outside therapists and programs would run $40,000 to $50,000 a year. It’s probably $20,000 for an individualized program that can be offered through the school. School boards put pressure on the districts, pressure on my role to keep costs down. We go into the district’s general fund so much. The state is not keeping up with these costs. Some people in my seat believe they have to guard the bank. To implement this book –” and here she holds up a fist-thick purple volume called California Special Education Programs: A Composite of Laws — “takes a lot of money. But think about this — a lawsuit will cost upwards of $80,000.”
“We are always walking lines,” she repeats. “And it’s true that some teachers are leaving the field. They’re leaving because of the parents, never because of the kids or even the paperwork. What they can’t take after a long day at work is sitting in meeting after meeting battling the parents.
“The teachers chose special education because they love it and they want to help. And then they encounter a nexus of forces: laws, lack of money, and the great needs of kids and parents.”
Parents. The word strikes fear into the heart of most administrators. One principal was so nervous I might name her district that her voice trembled. “Everyone is terrified here, even though we’re doing the very best we can,” she said. “We have to be so careful. When a case goes to court, in every instance so far, the judgment has come down on the side of the parents.” She explained that a district can’t use lack of funds as an excuse to deny a course of therapy the parents think would benefit their child — the district is required by law to provide that therapy. “We are trying to implement a program that will address the needs of the child,” emphasized the principal. “That might be a different program from one that addresses the needs of the parent. You have to understand that parents of children with disabilities are in an ongoing grieving process. A lot of parents work out their grief though working the system, through bargaining and anger.
“I’m very proud of what we’ve accomplished here,” she said. “But without funding, this program is breaking the school district. It’s broken other school districts. There aren’t any limits to what can be requested, and oftentimes it isn’t to the benefit of the kids.”
A speech therapist at another district was even more outspoken. “Most of our attention goes to managing the parents, not treating the kids. The parents read up on all the cutting-edge therapies, and they demand that the district provide them. But we’re a limited resource. Statewide there are huge shortages of speech therapists, and I can see why. The parents are killing us. I have to document everything. If we don’t meet one timeline, if we don’t file an evaluation in, say, exactly fifteen days, the parents can take us to court. And I know I shouldn’t say this, but it’s true–the parents who know the most and scream the most get the best treatment for their kids. Because above all we have to stay out of litigation.”
Since the therapists don’t have time to complete their paperwork on school hours, many spend evenings and weekends writing evaluations and reports. Parents can call meetings at any time to discuss how the IEP is working for their child. Therapists, supervisors, and special education teachers are legally required to attend these meetings, often tense sessions set up at a moment’s notice. “Many of the parents are in denial and enraged,” says the therapist. “They’re horribly rude to the people in the school district because they have no other place to be powerful about what’s happened to their child. And that adds to the litigation risk. Maybe I don’t handle a situation as well as I could have, or maybe the parent is looking for someone to blame. Suddenly they decide their child is overlooked or not responding. I come home and I think, ‘Why am I doing this? I feel like hell.'”
Speech therapist Chris Seidel was willing to have her name used in this story — perhaps because she works in Minnesota. “When I first started with autistic kids, I was at a private treatment center. The incidence of autism was supposed to be like one in ten thousand. Now it’s one in five hundred. They think there’s some genetic component.” In fact, many explanations have surfaced for the increase — early childhood vaccinations, crowded conditions, or as Albany program specialist Suzanne Nelson says, “I think the increase is a better diagnosis — the spectrum is wider than we’ve allowed for in the past.”
Seidel says the parents are just as demanding in Minnesota. “Sure, we have to go to meetings. I just think of it as a mark of the parents’ anxiety. The parents are so vulnerable. We have parents of kids in the third grade who are in denial of the fact that their kid will never be normal. The child makes gains, and they get their hopes up. Part of it is that the kids look so great. In some ways, it’s easier for parents of a kid who is blind or has cerebral palsy. They’re reminded every day that their child is disabled.
“I have a very difficult caseload this year, and it’s really pooped me out. Each kid that has autism is worth three other kids, and two of those kids are worth ten. I have a caseload of 27 kids. It’s really a challenge.
“But I have never seen a group of kids try as hard as the autistic kids. It’s so hard for them to just sit and do something that doesn’t make sense to them. When you can’t make sense of anything, life has to be terribly scary.”
Renee Medeiros has been through plenty, and she’s willing to share. Along with Louise Glueck, Medeiros runs the parent support group that meets at the San Ramon Starbucks on the first Wednesday of each month.
And support means tough love, for parents as well as kids — I can see what Glueck means when she says crying is reserved for the first session only. These parents are here to learn, and Medeiros and Glueck launch into their take-no-prisoners stance toward school districts, counselors, teachers, and the parents themselves. When a parent reports her child has been assigned to one teacher’s room, Medeiros and Glueck are momentarily speechless. “Nope,” Glueck says, recovering first. “I can’t let you do that. She patronizes the children. Your child won’t make any progress.” The parent is told to seek the advice of a behavioral consultant — obviously anyone considering such a disastrous placement needs help pronto.
Medeiros turns to the few of us at our end of several pushed-together tables. “That teacher’s class has an opening,” she explains, “so they put the kid in there whether it will do him any good or not. From the district’s point of view, they’re doing what they can. And they’re doing what they can for the money. But from a mother’s point of view, I don’t care about their money or their opening. I care about my child.”
Like Glueck, Medeiros is a formidable fighter. Her child is also eleven, and the two faced much the same uphill battle in educating the district about autistic kids. Some districts, Medeiros reports, still have not gotten the message; for instance, she cites San Leandro as a problem district. “You have to ask for each specific thing,” Medeiros tells one parent, “and if they think you don’t know what to ask for, or know what your rights are, they just don’t do anything more. That means it’s up to you to learn what to ask for.”
Why the group has its meetings at Starbucks is a mystery — the music keeps blaring, and the tables are shoved together in a long line, so it’s impossible to hear what most of the twelve or fourteen people are saying. But the setup does allow for that strange sort of intimate conversation one can have in a crowd.
I sit next to Medeiros, across from a young mother who is attending her first meeting. When Medeiros learns that the young mother’s son, who will soon be five, barely has begun to speak, she leaps into a combination of need-to-know and slap-in-the-face that soon has the mother reeling. “Autistic kids don’t know how to generalize,” Medeiros explains, “and that makes it very hard to communicate. They see a picture of an apple and learn the word. But if that apple is red, they won’t recognize a picture of a green apple. And they won’t know a real apple if they’ve just learned the picture.”
“My son just keeps saying the same thing over and over,” says the mother. “He keeps saying ‘It’s a ball,’ again and again. About food, his sister, his brother…”
“That’s good,” Medeiros says, just as I’m imagining how horrifying it would be. “That’s the beginning of language. He’s trying to communicate, and he doesn’t know how to say anything else. You need to try to build on what he’s saying.”
She gives a few examples. The mother should show him pictures of balls, real balls, different colored balls, food that’s ball-shaped, playing ball, how many balls. Just keep expanding, she counsels.
“But what if there isn’t a ball?” the mother asks, desperation in her voice. “I tell him, ‘There’s no ball around here. What are you talking about?'”
Medeiros shakes her head. “Draw a ball. Hand him a ball. Roll the ball. Teach verbs, nouns, adjectives. Take every opportunity to teach communication.”
Forget reality, just make a connection. It’s the same lesson with Alzheimer’s patients — who cares what’s real when there’s an opportunity to share? “It helps to get away from the idea that you’re stuck with this kid,” Medeiros explains more gently. “When you’re teaching as a choice, the realization comes to you sooner that these kids are not misunderstanding on purpose. They aren’t trying to be difficult or resist you. They’re frightened. You can’t be angry at them when they can’t help it.”
“He tries to drive people out of the house,” the mother confesses, relieved to talk to someone who’s been there. “He bites and screams and…” She hears what she’s saying and takes a deep breath.
Like an old pencil, Medeiros continues to be gentle but blunt. She explains that you need to teach every behavior: don’t come out of the bathroom until you pull your underwear up; no touching other people, ever.
Why? I ask.
Because autistic kids don’t get grays, Medeiros says. “They don’t understand that it’s different to hug or to hit. When they get frustrated, and they do often, they hit or bite. It’s easiest to make it a rule — no touching, period. You need to get safety issues in mind first. Then later you can try to add grays. Like holding hands is acceptable in school, in a group. It’s all right to hold hands with the teacher.”
The son throws toys at his sister, hits the mother in the head. Medeiros nods, listening intently. The father is furious, wants the boy to behave. “My husband spanks him, but it doesn’t work.”
“You can’t spank an autistic kid,” Medeiros says, alarmed. “If you spank him, he’ll hit you. You hurt me, I hurt you.” Guilt and punishment are gray concepts that simply magnify an autistic child’s confusion and frustration. “A child who throws toys is lashing out because he’s in pain. You have to teach appropriate behavior, and you have to be brutally consistent even if you’re dead-tired. If you say no, you have to follow through and not let him do the behavior. Consistency is what they do understand. And it will get better if you do your job. You have to think of it as a job, and how you handle that job is going to make or break your family.”
Not to mention make or break the child. Medeiros describes how she had bruises up and down her arms for years. “You’ve only got so long to teach them control,” she says. “If you don’t teach it by the time they’re older, the child may have to go into an institution.” This is not what the mother wants to hear, but she nods grimly because she knows it’s something she needs to hear. “It’s also part of why you must teach him to talk,” Medeiros continues. “If he can say he’s angry, he doesn’t have to throw the toy at Grandma or push his sister.” She pauses, then says, “By the time mine was eight or nine, he started to get it.”
Eight or nine. Perhaps the worst part is not knowing — in spite of all the effort, the step-by-step teaching during days of bone-tired exhaustion, as you endure screaming temper tantrums and, often, the resentment of siblings and spouse — if a day of greater understanding will ever arrive. That not knowing is part of what drives parents to sue school districts, because the truth is that no one can predict who will benefit, and who will not, from any — or even every — program that’s set before a child. The one-on-one intensive training you’re frantically trying to get your district to finance might not help your kid at all. You can’t know for sure — and despite literally scores of diagnostic tests, no one can tell you.
School district officials are well aware of this costly and tragic game of chance. Do you throw the dice on this boy, who tests out high-level, or do you satisfy this girl’s parents because they’ve already engaged a lawyer? (Answer for most districts: the latter.) The girl won’t make eye contact, and she cringes when you touch her — not good signs — but remember that kid from a couple years ago … he seemed hopeless, and now he’s moved into general ed classes. You really can’t tell.
What most people agree on is that without early intervention, the prognosis is poor. “Ages two to seven are the hardest,” says Medeiros. “You can’t know whether they can get into general ed or it’s special ed forever. The absolute toughest years are three and four. You need to get some kind of communication down. You need to keep at them, you have to force them. By eight, you can begin to tell whether they’re going to be social. If they want to pace or be alone at that point, they have a right to their own personalities. There is such a thing as a happy autistic kid who is a loner. But you won’t know until you try.”
“Congress says we have to do this,” says the speech therapist. “They gave funding for curbs and bathrooms, but they don’t fund special ed.”
With Bush in the White House, federal help probably won’t gallop in on a stallion anytime soon. So we’re left with a lose-lose situation, in which the devastating needs of some kids subtract from the needs of others (when special ed “borrows” from the general fund, that’s less money for band instruments and computers and books and maintenance). Meanwhile, the swelling number of autistic kids, combined with the litigation threat and consequent inability of districts to manage their budgets or protect their employees from unreasonable demands on time and emotions, has caused teachers, therapists, and administrators to bail out, making a bad story worse.
What can be done? Some districts and states are trying to define what constitutes appropriate therapy — and “appropriate” doesn’t necessarily translate to one-on-one behavior modification. When the prognosis is so unpredictable, however, it’s hard to prove that a child wouldn’t be helped by a particular therapy — and the bias, of course, has been toward trying everything that might allow the child to function at the best level he or she can. Says the speech therapist, “We’re not giving them a Cadillac, but we’re giving them as much of a Cadillac as we can afford.”
That bias is right-headed — and it needs to be applied to every child in the district. Districts should not be required to lighten up on Peter’s services in order to pay Paul — or more likely, Paul’s lawyer or private consultant. Says Suzanne Nelson, “Sometimes when outside contractors hear it’s a school district, they raise their rates. We have deep pockets — with a hole in them.”
The last week of classes, Nelson brought a flier from a law firm into work. The single-sheet newsletter is directed at parents — and not only parents of disabled kids, but those whose kids have been suspended, expelled, harassed, or who need extra assistance. The newsletter says in part, “When a parent is taking on the monster we call the educational system, they are well served to have an attorney assist them. Merely having an attorney on your side can get the District’s attention to say the least.”
Point taken. But it’s going to take everyone’s attention to figure out where we go from here.
Some identifying details in this story have been changed to protect individuals⊃ privacy.