By Sam Levin
By Jessica Lussenhop
By RFT Staff
By Keegan Hamilton
By Gavin Cleaver
By Sam Levin
By Sam Levin
By Sam Levin
Last October, Katie Johnson spent a whole evening poring over her senior packet, reading about McCluer North's class rings, class pictures, senior sweats, engraved invitations and red commencement robes. She was desperate to graduate because graduation meant "leaving McCluer North and moving on to bigger and better things." Becky Bowles would be swimming for Southwest Missouri State. Carrie Brown was going to major in occupational therapy at Truman State. DeWayne Wells, who'd taken her to the junior prom, was entering the military. All anybody ever talked about anymore was getting out, getting on with their real lives. So Katie rushed through dinner and then did something she hardly ever did: She ignored her homework and read the packet all night instead. "The tassel's gonna be blue and white," she called out to her parents. "And the ceremony --"
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.
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