Bob and Karen Johnson shot each other a long look. No way was their daughter ready to graduate. She hadn't even had algebra yet; she was still taking a bunch of "IEP" (Individual Educational Plan) classes, up on the second floor away from the other kids. All they ever really discussed at any length in her IEP meetings was how Katie's wheelchair got through the doorways, and how they'd found a bathroom she could use, and whether they had time for stretching exercises to ease the cerebral palsy's muscle spasms. Besides, even though she was 18 and technically a senior, she was legally entitled to be educated in the Special School District (SSD) until she turned 21.
The Johnsons' dream, and Katie's, was that she'd go to college and become a French interpreter. They'd never gone to college themselves -- Bob cheerfully referred to himself as "a dumb ol' truck driver," and Karen pulled her long blond hair back in a ponytail every day and trudged from house to house carrying U.S. Mail. For Katie, they wanted something more. And if she enrolled now, she might fail.
Katie wasn't ready academically or emotionally, they told each other. Lord knows, they were glad she'd remained oblivious to the pulsing rhythms of teenage sex, drugs and hip-hop -- their Katie loved Olivia Newton-John and John Travolta and the musical Grease, and she wanted everybody to be happy and get along. But she still had trouble asking for what she needed; she tried to please everybody; she trusted everybody. "I gave her $20 in case she wanted a sody or something at that Globetrotters game, and she didn't even know how much she'd spent," Bob reminded his wife later that night, as they were getting ready for bed. "What happens when she's all by herself, and she hands some college kid a $20 bill to get a sody for her?"
Bob and Karen had been feeding, dressing, bathing and carrying their firstborn for 18 years now, and they knew her the way they knew their own bodies. They could sense when her buttocks were going numb from sitting in her wheelchair too long, they could feel the stubbornness rising like mercury when too many obstacles crowded her path. If her younger sister, Kristina, got frustrated, she just stomped upstairs and slammed the door, and 10-year-old Bobby tore around the house like a hurricane -- but Katie didn't have those options. She consoled herself by believing in miracles -- "I really, really would like to walk" -- or imagining herself 10 years from now, happily married and working for the United Nations as a French interpreter.
The second dream was plausible: Katie excelled at French, the one subject where she'd consistently been "included" in regular classes, and she always wound up helping the other kids. But she'd need to take more than French to finish college -- the Johnsons knew that much -- and college courses moved like lightning compared with her IEP classes. Katie would have to negotiate any modifications she needed with each professor.
Through high school, SSD had paid for modifications, for her assistant and for all those IEP classes, and the Ferguson-Florissant School District had picked up the tab whenever she did get "included." If Katie graduated now, both districts' financial responsibilities would end, and her "free-and-appropriate public education through the age of 21" would grind to a halt. The Johnsons would be scrambling to piece together help from an array of adult agencies, and they'd be paying out-of-pocket for college tuition, special transportation, voice-activated software, various kinds of therapy, an assistant to go with her and take notes for her and help her to the bathroom ...
They'd always known that day would come.
But next year?
When SSD had suggested transferring Katie to a regular public school back in fifth grade, Bob and Karen lost a few nights' sleep worrying that the kids would be cruel or the work too stressful. But Katie adapted beautifully; she'd always had an amazing memory, she just needed extra time to grasp some subjects, and shorter assignments, and someone to take notes or turn pages for her. What really got in the way was all the physical stuff -- the trips across school to the only accessible bathroom, the awkwardnesses with toileting, the nervous giggle. So when she moved on to McCluer North High School and became the first nonambulatory student there, it was the physical challenges that preoccupied everybody.
Katie took choir and regular French, but she spent most of her time upstairs in the "self-contained" special-ed classroom. Her parents didn't mind all the IEP classes; they just figured the school was going slow, easing her into the regular curriculum. After all, she had until she was 21. So they left academics to the academics and poured their energy into more practical battles.
There was the sophomore year, for example, when Katie's aide scolded her for asking to go to the bathroom so often, saying, "You are hurting my back lifting you all the time." Katie knew she asked too often; sometimes, with cerebral palsy, it feels like you have to go when you don't. But then, when she did have to go, the aide refused -- and Katie couldn't control her muscles. She came home sobbing and messy, too scared to complain about the aide. Finally her parents figured out what was wrong and complained for her.
Meanwhile, the school nurse had seen a patch of eczema on Katie and pronounced it ringworm. "She sent home a computer printout all highlighted and pictures of kids' skulls seeping with pus," recalls Karen, still furious. "We had to get a doctor's note to convince her it was eczema." By then, the damage was done: Katie's aide had started putting on rubber gloves before she touched her. "In front of the other kids," gulps Katie. "Even just to help me put on my coat."
She came home crying almost every day that year. Junior year, she was assigned a different aide, and life improved radically. When she did have a bad day -- like the day a friend said it'd be cool to be in a wheelchair, and she said, "Not for life" -- she came home and listened to Celine Dion for inspiration, picking out "songs with the word 'love.' The word 'love' really makes me feel good."
Katie hated it when kids fought at school, and she hated it when people stared at her in church like they were scared. But what she hated most of all was when people thought she was a boy. "Some guy told his wife, 'You're in that boy's way,'" she complained to her mom. "And I had earrings on and everything!"
In point of fact, she didn't look like a boy at all. Her creamy pale skin was tinted pink at the cheekbones, and she had big blue eyes and wavy hair -- but the wheelchair's straps cut across her chest, interrupting strangers' perceptions. The cerebral palsy made her muscles jerk as if they were pulled by tangled puppet strings. She needed huge bursts of concentration to marshal any movement, she nearly always had to be helped, and she felt guilty every time.
What she said out loud about all this was how lucky she was, to be able to speak and hear and think, and to have friends and family and teachers be so wonderfully supportive. But late at night, before she fell asleep, she'd let herself think about her miracle. One night she even dreamed it happened, felt her feet touch the ground and woke up sobbing for joy. Then she carefully reminded herself that, even if it didn't ever happen, her life was already perfect. Besides, there was always her second dream, "to be able to teach the French language and interpret it in a way that people understand." Looking up at the ceiling of her room, she sighed like she was looking at wide blue sky. "I just have a passion for it."
By January of this year, the staff at McCluer and SSD had spelled out their position: Katie could graduate with her class, she should graduate with her class, and she would graduate with her class. Missouri required 22 credits to graduate; if they moved fast, she'd have them by May. All those IEP classes weren't mere preparation for the real courses, they were the real courses, approved by Katie's IEP team to meet Katie's IEP goals. As such, they carried full credit, and Katie had earned that credit, and now it was time for her to graduate. She was 18 -- it wouldn't be right to keep her in high school with younger kids. Her emotional maturity wasn't at issue. As for academics, plenty of kids graduated without reaching the 12th-grade skill levels.
Katie agreed avidly. She didn't care if she wasn't quite ready; she didn't even care she had to take "developmental" classes, as long as they were on a college campus. "I just want to be able to have the feeling every other senior has," she told her parents. "I don't want to spend next year at McCluer."
She started seeing her school counselor, Judy Sweeney, several times a week, pouring out her struggle with her parents and asking what to do. At home, she spent more time alone in her room, and through the closed door her family could hear the Titanic theme song, "My Heart Will Go On." Sometimes the door stayed open just wide enough for Patches, the dachshund, to slip through. The family's five dogs ranged from miniature pinscher to Rottweiler, and each had laid claim to one human in particular. Katie's was Patches, a wriggling tube of unconditional affection. "You're a spaz," she would laugh, hugging the dog close.
Whenever her parents came in to talk about school, though, Katie's voice tightened. "Well, you know, Mom and Dad, it's going to be hard that I'm graduating and growing up," she'd say, sounding like she'd rehearsed it. At the end of the exchange she'd remind them, "Ultimately, it's my decision," experimenting with different inflections until she sounded so crisply assured that her parents didn't recognize the voice.
They decided the school was pulling their daughter away from them.
"You know, Katie doesn't have a best friend she really confides in," Karen whispered to Bob. "There's that one girl who calls all the time, but she's way below Katie mentally. These people at the school have showered Katie with attention, and she's soaking it up." Karen picked up Katie's calendar, stabbing her finger at all the "Mrs. Sweeney" appointments. "How do they have time for all this," she asked dryly, "when they don't have time to get her out of her chair to stretch?"
Bob and Karen decided they'd at least ask the school to have Katie tested, to see whether all those IEP classes had really brought her to the level of a high-school senior. On Jan. 13, they walked into McCluer's conference room expecting to meet with one of Katie's teachers and Mira Rosenthal, the school psychologist who did the testing.
A dozen representatives of McCluer and SSD sat waiting. They proceeded to explain that Katie would have all her credits by May and she'd be graduating. Then they reminded the Johnsons that, unless they'd gone to court to obtain legal guardianship, Katie should be present and making these decisions herself. After all, she was 18.
When Bob asked his original question, about having Katie tested, they wanted to know what his concerns were. "Well, she can't structure a paragraph very well, and she hasn't had algebra, and she needs all that at college," he said. Rosenthal reportedly explained that, from working with kids with cerebral palsy, they'd found they often weren't capable of learning algebra or grammatical syntax. "Well, how would you know," countered Bob, "if you never even tried?"
Then a therapist asked whether they'd ever thought about getting Katie into a START program, vocational training for people with physical disabilities. "But Katie wants to go to college," protested Bob. "What kid with a 3.9 grade point average wouldn't go to college?" Slowly, deliberately, he looked around the table. "Who here thinks Katie is ready to go to college this August?"
Not a single hand went up.
The meeting ended in an angry stalemate, both sides withdrawing to regroup and meet again in February. Before they left, Bob begged the teachers not to say anything more about college to Katie -- or take her on any more "field trips" to St. Louis Community College at Florissant Valley -- until they got the test scores back and reached some kind of resolution.
Two days later, Katie came home with a piece of paper her special-ed teacher had typed up for her. At the top, it read, "I believe that Katherine Johnson should graduate from McCluer North High and afterwards, attend Florissant Valley Community College." Below were numbered blanks, enough for 20 signatures, and the first four were filled by signatures of Katie's teachers.
The Johnsons were still fuming about the petition when Katie came home a few days later and asked casually, "Dad, are you getting a lawyer to sue these people at school?"
He looked at the daughter he'd once known inside and out. "Well, Katie, do you want to know this, or did someone at school ask you to find out?"
Her gaze tilted upward, and she didn't answer.
Then, about a week before the next meeting, Julie Burgess (a Paraquad specialist Sweeney had called in to advocate for Katie) visited the Johnsons. Toward the end of the conversation, she asked lightly, "Have you ever thought of respite care, to give you and Katie a break from each other?" Surprised, Bob just said no. The next evening the phone rang: It was Ann Lehr of the St. Louis Regional Center, who worked with people with developmental disabilities. She'd attended Katie's meeting, and she'd been talking with McCluer. "You know," she said, "if you ever want to seek some counseling, or Katie needs to go to respite care ..."
Bob hung up slowly, with a puzzled frown. Then he heard Katie calling and went in to decode the intricate mechanics of her new wheelchair, comments forgotten.
Katie, meanwhile, convinced beyond all evidence that her parents didn't love her anymore, had asked the school to call her cousin Anne-Marie Flacke, a sweet, nervous 21-year-old who was about to finish the dream -- college -- herself. Flacke adored Katie, so that Tuesday (eight days before the Johnsons' big meeting) she went to McCluer and found herself talking to the principal, the school psychologist, the counselor and a drill parade of teachers. Katie has all the credits she needed to graduate, they said, and her parents are refusing to let her go.
Flacke was still recovering from the barrage when the discussion escalated and people started talking about Katie's parents abusing her, saying they'd turned her out of the house, and they'd used her new disability checks to buy her little sister a car. Katie was in tears, and soon Flacke, utterly confused, was crying, too.
The minute she reached home, she called her mother, a veteran teacher in the Catholic school system. Nancy Bircher was accustomed to educational flaps and crises, but the intensity of this one alarmed her. She agreed to call Katie's counselor at 8 the next morning.
At 8, Sweeney was unavailable, so Bircher left word that she'd call again at 11. When she did, Sweeney had Katie in her office and put her on speaker phone. "I'm 18, Aunt Nancy," blurted Katie, "and 18-year-olds graduate, and my parents won't let me."
"Why would they be against it, honey?" asked Bircher.
"For 'educational reasons,'" retorted Katie. "That's all they ever tell me."
Bircher urged the counselor to bring Katie's parents in and let everybody tell their side of the story. Sweeney said the school was going to meet with Katie's parents the following Wednesday and tell them Katie was graduating, that it was a done deal. They'd be angry, of course, and the school was afraid for Katie's safety afterward. Could she stay with Bircher?
"Oh, honey, I can't do that," Bircher exclaimed, addressing Katie directly, and meanwhile wondering how she was going to extract enough information from her brother to figure out what in God's name was going on without breaking her promise to Sweeney to keep their conversation confidential.
That night, she called Bob, who'd been trying to reach her, too. He said he knew Anne-Marie had gotten quite a show at the school and wanted them to know the real story. Bircher said a quiet prayer of thanks; she hadn't needed to ask a single question. Bob described the January meeting, saying the school thought they just didn't want to pay for Katie's college, and they thought the school was trying to save money by rushing Katie through. He said the battle was destroying their relationship with Katie; just the other night, she'd yelled that she could find herself someplace to live and do it all on her own. "Fine, then go," he'd said, and watched from the porch as she drove her wheelchair down the sidewalk. Two houses down, he said, she turned her chair around, and he walked up and asked, "Have you got yourself together? Are you ready to come home?"
That was turning-Katie-out-of-the-house, Bircher realized, colored by the frustration of a young woman who desperately wanted to live on her own someday but wasn't sure how she'd manage. For Katie, the people at school represented an independent adult future, and on the opposite side of the chasm stood her parents, tugging her backward into childhood.
Protective, yes, and maybe tugging a little too hard -- but siphoning her disability checks? The money had only begun arriving the previous fall, $340 a month to the Johnsons to pay for her living expenses and $172 a month to Katie directly. But Bircher knew how much her brother already spent on Katie, even buying a special pontoon boat to accommodate her wheelchair so they could go out on the river together. Her mind raced while Bob talked, explaining that Katie was only at sixth-grade level in English, and her credits weren't even in real subjects. "Educational reasons," just as Katie had said. Compressing her lips, Bircher told her brother not to worry. The next morning, she called Sweeney again.
"Hold on a minute, I'll go get Katie," the counselor said.
"No," replied Bircher. "I want to talk to you." She began relaying the information her brother had given her. Then she pointed out that Katie, beneath all the layers of frustration and special circumstance, was a teenager. "Her mind and body are going through all these changes," Bircher pointed out, "and that's the time when everybody finds something wrong with their parents."
According to Bircher, Sweeney listened and said, "I never thought of it that way."
That afternoon, Katie came home and told her parents that the school was looking at a new plan, something about holding her credits in escrow.
The professionals -- suited representatives of SSD, the Ferguson-Florissant school district and various social-service agencies -- were already seated when Karen and Bob, clad in jeans and T-shirts, walked into McCluer's conference room on April 5.
"Ah. How are you, Mr. and Mrs. Johnson?" asked one of the coordinators.
"Ain't won the lottery yet," Bob quipped, glancing over at his daughter to see whether she'd laugh. She sat poised, waiting to speak her piece, and his eyes softened. "Are you going home with us, girl?"
"I may ride home on the bus, since I got in earlier than expected," she replied, her deliberateness adding dignity to the simple question. "I'll let you know." The meeting began with Katie. "What I was really hoping to do," she said formally, "was Option No. 2, to graduate and go across the stage and do my program at Flo Valley." Then she smiled hopefully at the adults and reversed out of the room, heading back to class.
Back at the February meeting, school officials had suggested a compromise plan, and they'd spent the intervening weeks hard at work, talking to agencies, juggling possible schedules and funding arrangements, visiting the transition office at Flo Valley. Option No. 2 would allow Katie to walk across the stage but not receive her diploma until she passed the GED and fulfilled her IEP goals. She'd be tutored for the GED through the START program (which trains adults with disabilities) two or three days a week, and the rest of the time she could take French and developmental English at Florissant Valley, enough to keep her a full-time student so Bob's health insurance would cover her. She'd remain under SSD's auspices until she received her diploma, so they'd pay for transportation, an assistant and the developmental-English class. The Johnsons would pay standard college tuition for the French class.
"That's fine," Bob inserted eagerly. "That's just fine."
They handed out copies of a possible college schedule. Then they talked about Katie's academic level. The test the Johnsons requested had assessed her composite age as 13.3 years old and placed her at a 6.2 grade level in math. In the comment section, Rosenthal had written, "The biggest surprise was Katie's abilities in Quantitative Reasoning. Without a doubt, she knows math concepts and understood how to balance equations logically." A few sentences later: "Math is weak partly because Katie ... has not yet been exposed to algebra."
"She said kids with CP couldn't do algebra," Bob reminded Don Bohannon, area coordinator of special education. Bohannon said Rosenthal had been sick with flu that day and had regretted the comment. "We also gave Katie the pretest for the General Educational Development (high-school equivalency) exam," he continued. "She did surprisingly well. The results were a lot better than I expected. In fact, it looks like she could pass right now."
When he added something about Katie's obvious intelligence, Karen couldn't hold her tongue any longer. "We knew that all along," she snapped. "That's why we were so irritated when we were told she couldn't make sentences or paragraphs, or do algebra."
After an awkward pause, the discussion returned to Katie's schedule, the assistive technology she'd need, the type of lifts available for the restrooms at START and the college. "Why wasn't all this done in January?" asked Bob. "If we hadn't spoke up, she'd have graduated and be sitting at home in front of a TV" (the fate of a friend who graduated from SSD and ended up withdrawing from college).
They looked at that January meeting as a first step, school officials said. Certainly, communication could have been better. But the district had learned a great deal from Katie's case. Katie was a pioneer who'd smoothed the way for other kids, making it possible for them to "walk across the stage," too.
"We were called thieves and abusers," Bob cut in. "The people who said those things have never even apologized."
Nobody much answered, except to say it was time to "put all that behind us." The meeting ended quietly, with a great deal of self-congratulation at how smoothly this round had gone. Afterward, Bohannon, who'd only assumed his position the previous year, told the Johnsons he, too, had been surprised when he read Katie's file and saw how little she'd been included in the general curriculum. In fact, he said, when he first saw her history, he wondered whether her parents had been in on those IEP meetings.
After the meeting, the Johnsons rooted through their file drawer. They'd kept every one of Katie's IEPs. The first, written the spring before she started at McCluer North, reported that the "regular education teacher says Katie does well in class" but warned of physical difficulties -- such as "drooling and the adverse impact on social acceptance" -- and academic concerns over "grade level reading comprehension." Katie tended to choose easy books, the teacher said: "She has a formula for book reports and appears to not want to make a mistake." Under "Graduation Status," the box for "high school diploma expected" was not checked; instead, Katie was "following a course of study toward graduation as prescribed by the IEP."
Because of the federal Family Educational Rights Privacy Act, no one on Katie's IEP team was able to comment about anything directly involving Katie, so it's impossible to know now what they were thinking each year, when they considered (as they are bound by law to consider) further inclusion, and decided against it. IEP teams -- usually composed of a general-education teacher, a special-education teacher, therapists, district representatives, administrators and the child's parents -- have great power. Federal law insists that children with disabilities be educated in the least restrictive way possible, but it's the IEP team that decides what's the least restrictive way, how much each student should be challenged, how fast he or she should advance. Parents can veto these decisions; they can even sue. But as Missouri Attorney General Jay Nixon argued last month in just such a lawsuit, "Because of physical and financial constraints, it is impossible to achieve the utopian ideal of maximizing each child's capabilities."
Katie got straight A's her freshman year, except for keyboarding. The IEP for sophomore year complimented her sensitivity, extroversion and compassion and urged continued focus on math, reading and writing, but, again, most of the emphasis fell on physical challenges: the need for a notetaker, for help getting her books out of her book bag, for curb-to-curb pickup and emergency-evacuation plans. She earned straight A's the entire year, again taking mainly special-ed classes. The junior-year IEP read, "Academically, Katie continues to succeed and excel in regular/special education curriculum. Her GPA is 3.88." She stayed on the honor roll all four years.
McCluer "probably set their expectations for Katie far too low because she has CP and her parents didn't know how to advocate for her," offers Dr. Janice Brunstrom, assistant professor of neurology and cell biology at Washington University School of Medicine. "I fight this battle all the time. Kids with CP get shunted into special ed and assumed to be cognitively impaired." Brunstrom, who directs the new Cerebral Palsy Center at St. Louis Children's Hospital, has CP herself, and she knows how persistently people associate intelligence with motor skills. "If someone sees me walking down the street, they automatically make the assumption that I am cognitively not all there because they are looking at the abnormal movement," she explains. "But most kids with CP are perfectly capable of being in a normal classroom, as long as the physical barriers are broken down."
I just feel that McCluer is a great place," stresses Katie, talking in the privacy of her bedroom a few weeks after the compromise. "I do like my teachers -- I want to make that absolutely clear. They are teaching me the way they are supposed to." She talks happily about friends both inside and outside the special-ed classes, acknowledging each one's support as carefully as an Academy Award winner. What she won't talk about is the recent upset, the notion that her parents were abusing her and stealing her money. "That was a time when I was real emotional," she says. "I don't want to comment on that. Everything's a lot better now." She waits a beat. "Would you like to hear more about my friends?"
After she's talked about everyone she'll ask to sign the stuffed dachshund her mom found for her -- with its own graduation cap and plastic pen -- Katie finally admits that "it's been really tough this year, being caught in the middle. I really, really was upset. I just don't -- these people I have known for four years. And I love my family point-blank, I want to make that really clear. But, hey, Mom and Dad, Katie's an adult now." She sings it out, then resumes a reasonable-adult tone: "I'm not going to rush into anything. I've got to take it slow because it's really hard.
"My parents thought I was rebelling," she adds a minute later, "because I was becoming more independent and saying, 'Hey, this is what I want.' This is one of the first times that I have ever done this. Now that I'm 18, I'm kind of the advocate. I need to give permission for things; I've never had to do that before. So there's some really interesting things that I'm getting into, and that makes me happy. Even though I don't like sitting through long meetings."
Asked if there was ever anything she just wanted to yell out in the middle of one of those long meetings, she giggles hard. "Enough!" she calls -- then amends it. "I don't really mean 'enough.' The reason I said that is everybody was getting tired -- the school and my parents -- and I just wanted them to end it. But even if I did say 'enough,' they needed to iron it out, so I needed to be there to listen."
"Dad?" she calls suddenly. "I got something to tell you real quick." He comes in and waits expectantly. "The school is going to give me a ring. And if you want to pay for it, go ahead. Because I don't know how much they are."
Karen's come up behind Bob. "Well, they're not giving it to you, then," she notes, and murmurs to her husband, "Do they think she's the poor child?"
"They are going to size it for me," Katie says firmly. "They get lots of free stuff because they buy so many invitations."
"We was going to buy you a ring anyway," Bob reminds her, and Karen says, "You know, you can pick your own out, the color of the stone and everything."
"I like the one they got, it's pretty."
Bob and Karen trade looks. Then they shift gears, realizing Katie has slid into an uncomfortable position in her new wheelchair. "Watch this," Karen tells Bob, trying to find a new system. "If I lift, and you just kind of push her hips back -- there. Now buckle her in, quick before she pops back. The bottom one."
"All right all right all right," he mutters, weary-husband-style, as he buckles. Katie's laughing; they've flipped the strap wrong. A minute more and she's settled, but Bob and Karen linger, making small talk. Finally Karen murmurs something about checking on dinner, and they leave.
"I just really want the feel of, 'This is my last day at McCluer North,'" Katie resumes instantly. "And I will have that, with this new plan." She starts describing the "senior activities," the roller-rink party and the picnic and the Wall -- "They're gonna climb a wall and the Army's gonna come, but I'm not gonna do that because I can't. But I want to go to the roller-skating, just to watch people socialize. You have to do a survey at the end of the year -- 'best-dressed' and stuff like that." Next she talks about commencement: "The audience isn't going to be able to tell anything because I'm still getting a folder with something. I wonder what they are going to put in it."
She looks over at the top drawer of her bureau, where she's keeping her blue-and-white tassel. Then, without warning, a shadow crosses her face. "To tell you the truth, after all this, I just wish it was like my fantasy," she confides. "I saw it as graduating and then going on to college -- you know, how some people graduate and go on to college? And it's just not that simple."