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August 01, 2003  |   Comments (0)   |   Post a comment

Riding with Jordan: A Day in the Life of a Fragile Student

Shuttling a medically fragile student to and from school is a daily challenge for all involved — the student, parents, bus drivers and transportation directors. Difficult and costly as it can be, for Jordan Forster, the school bus is what gets her to where she can exercise her one strong "muscle" — her brain.

by Thomas McMahon, Assistant Editor


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7:40 a.m.: The pickup
On a quiet, residential street in Torrance, Calif., on a cool June morning, a Laidlaw school bus rolls up in front of a modest house with a U.S. flag flying in front and a minivan in the driveway. The bus door pops opens, and the driver disembarks. At the back of the bus, she readies the wheelchair lift, lowering it to meet the end of the driveway.

Jordan Forster emerges from the house, pushed in a wheelchair by her nurse, Kellie Fuller. Jordan’s mother, Patti, walks alongside. Jordan, 5, looks stylish in her purple outfit, complete with matching poncho. Accordingly, the frame of her wheelchair is also purple.

Photographer Kelly Bracken and I greet the group as well as the bus driver, Sharon. Jordan inspects us for a moment but quickly begins smiling for the camera.

Sharon secures Jordan on the lift and hits the switch to raise it. Inside the bus, she tightens straps and fastens the wheelchair in place. The entire loading process takes about five minutes. Sharon seems to have it down, though she says she has only been driving Jordan for about a month.

At about a year old, Jordan was diagnosed with spinal muscular atrophy type 2, a form of muscular dystrophy that causes severe weakness and degeneration of her muscles. Because of the disease, she is very fragile and requires constant care.

Kellie, a licensed vocational nurse, has been working with Jordan for about four months. She stays with Jordan on school days from 7:30 a.m. to 3:30 p.m. — tending to her needs at school and for a few hours at home.

7:45: The commute
We find our seats on the bus — an easy task since Jordan is the only student on this run — and Sharon drives us away. I attempt to interview Jordan over noises from the bus and traffic, but it’s hard to hear her. She isn’t able to manipulate her mouth very well, so her words are a bit muffled. Regardless, she is eager to talk.

With some assistance from Kellie, who is sitting closer, Jordan tells me that her favorite subject in school is reading. She is currently engaged in the Harry Potter book series and even has a few videos.

Regarding the color coordination of her clothes and wheelchair, she says simply, "I love purple." Then I notice that Kellie is wearing purple pants. I don’t ask if there’s a connection.

Jordan’s morning bus is owned and operated by Laidlaw Education Services through the Los Angeles County Office of Education (LACOE) in Downey. In the afternoon, however, she rides a Torrance Unified School District bus.

Mark Smith, transportation planner for LACOE's business services, explains the split service: "On occasion, Torrance takes advantage of our service when they find the necessary equipment or staff is unavailable to provide an a.m. or p.m. run. Additionally, if they have to send a student to a program and it proves more cost effective to utilize our services, we accommodate them."

Of course, Jordan being the only student on the bus is not the most cost-effective way to schedule a route. But with her condition, she can’t handle more than a short ride. Smith says the cost of busing a medically fragile student such as Jordan is approximately $30 per day ($5,400 per school year). According to the Special Education Expenditure Project, the average cost for special-needs transportation per student was approximately $4,418 during the 1999-2000 school year.

8:00: The drop-off
"This is Jefferson," Jordan says matter of factly as we pull up to the elementary school loading zone. When the bus stops, Kellie gets up and activates a portable suction machine on the back of Jordan’s wheelchair. She uses it to clear saliva that has accumulated in Jordan’s mouth during the trip.

Sharon paces to the back of the bus and performs the reverse of the pickup procedure. We meet Jordan at the bottom of the lift, and she looks excited to be bringing guests to school.

As Kellie rolls Jordan away from the bus, Sharon raises the lift and closes it up. She appears to be in a hurry, so I don’t ask her to stick around and chat. "I have four more wheelchair students to pick up," she explains before climbing back on the bus.

8:05: Navigating the halls
"I'll show you where my kindergarten is," says Jordan. As we pass classrooms along the hallway, Jordan shows she knows her way by giving Kellie directions: "Turn right. ... Turn left here."

We arrive at Jordan’s kindergarten classroom, where one other student is waiting. The door is locked, so Kellie sets the brake on Jordan’s wheelchair and leans back against the wall for a moment.

For the first two hours of Jordan’s school day, she is mainstreamed into a regular-education kindergarten. Afterward, she spends two-and-a-half hours in an orthopedically handicapped (OH) class. Her day is short, but with her disability, it’s plenty for her to handle.

8:10: Time for class
The kindergarten teacher, Carol Barkovsky, arrives with a few students in tow. Inside the classroom, Jordan and Kellie wait in line so Jordan can check in with her homework. As Jordan approaches the teacher, she looks worried.

"I did the wrong homework," she says, sounding embarrassed.

"That's okay," Ms. Barkovsky says and reminds Jordan that she is behind because she was out sick one day last week. She gives Jordan checkmarks on her work and remarks on a job well done.

Because of Jordan’s condition, she is very susceptible to illness. Her father, David, who teaches middle school social studies, says that when Jordan gets a cold or flu and gets congestion in her lungs, she can’t cough it out like most people because her chest muscles aren’t strong enough. This can lead to a more serious illness such as pneumonia, and as a result, Jordan has missed a significant amount of school days this year.

Her mother says that missing so much school doesn’t make it too hard for Jordan to keep up with her studies. "She's extremely bright, and she picks up on things very easily," Patti says. The bigger challenge created by her absences is keeping her transportation services up to date. In the event of Jordan’s illness, Patti must notify two separate bus operations when Jordan won’t be going to school and contact them again when she’ll be returning. This has been difficult at times, especially when Jordan was on a week, off a week for a period of time.

8:12: Drawing and dreaming
More children file into the classroom and check in. While other students scamper around and play with K'Nex toys, Jordan sits quietly and draws with a marker — purple, of course. Her touch on the paper is very light, and at times, Kellie helps her give the marker a bit of extra pressure.

Jordan shows me her finished drawing, which she says is of her and her prince skydiving from a plane. Kellie chuckles.

"She's really smart, and she's good in class," Kellie says. As the room grows noisier and kids fly toy helicopters into each other, I’m not surprised that Jordan is one of the most disciplined students.

Jordan lifts her hand slightly, pointing at the other kids and naming each one. Her words begin to mumble. Kellie bends forward to hear her, then decides it’s time for the suction device. It makes a buzzing noise when she turns it on, interrupting Jordan, who seems frustrated by it. But she speaks more clearly when it’s done.

I ask Jordan what she wants to do when she grows up. "I want to be a nurse," she says.

Though her parents say they’re focused on taking it one day at a time with Jordan, they can’t help but think about what the future will hold for her in terms of education and occupation, especially with how intelligent she is.

"We very much hope that she can go to college," says Patti. "Our focus is to keep her body strong so that she can use her mind to go to school." She notes her daughter’s ambition: some days Jordan talks of being a nurse and other days a meteorologist or police officer.

8:15: Show and tell
The bell rings while Jordan is showing us a tank with silkworm cocoons. "Did you all hear the freeze bell?" asks Ms. Barkovsky, and the kids scramble to clean up toys and grab their books.

Jordan reads aloud a book about pandas. She carries a good pace but has trouble turning the pages. Kellie helps her while setting up a headset microphone for Jordan, which amplifies her voice through a speaker on the wheelchair so the rest of the class can hear her. The teacher also puts on a microphone, which Jordan’s speaker picks up. Kellie explains that Jordan has trouble hearing as well as speaking loudly enough for the rest of the class.

Ms. Barkovsky introduces the guests, myself and Kelly Bracken, and tells the class about our project and Jordan’s daily bus rides. "How many wish they could ride a school bus every day?" she asks, and the rest of the class raises their hands.

8:30: Star student
Kellie holds Jordan’s hand over her heart as the class recites the Pledge of Allegiance. Ms. Barkovsky follows with a lecture covering such topics as animals and dates. She calls on Jordan at one point to answer a question. "1-7-6," Jordan says confidently.

Later, Ms. Barkovsky reads the class a story called Fish Out of Water, about a fish named Otto that grows too big for its bowl when its owner feeds it too much.

9:10: Staying in the lines
The class breaks into groups to paint and write. Jordan begins practicing her writing, and I chat briefly with Ms. Barkovsky.

"She's really bright," the teacher says. "It's hard for her to write, but she does it well. She's the best in her group."

Ms. Barkovsky points out Jordan’s special pen, which is the size of a marker. I look over Jordan’s shoulder to watch her write. Her work is surprisingly neat and almost all within the lines. She is working on a long sentence, though, and seems to get tired and struggle toward the end. Later on, I find out that the same goes for her school day as a whole.

With help from a list of reference words on the wall, Jordan writes a sentence that reads, "I love Otto because he looks like my fish."

I ask Jordan about her fish. It’s a blue fighting fish named Blue. "I don’t feed it too much," she says, referring to the moral of the fish story. She launches into a monologue about Blue and her feeding procedures, talking for a solid minute.

9:30: Fish fancy
It’s time for Jordan to paint. She shakes her arms slightly in excitement. Kellie helps her paint blue on a piece of construction paper cut in the shape of a fishbowl. While she glues some sand to the bottom of the bowl, Jordan talks about the new Disney animated film, Finding Nemo, which also deals with fish.

She begins to mumble again, so Kellie breaks out the suction device. Jordan grimaces and then resumes talking about sea creatures when her mouth is cleared. "I'm going to San Diego to see Shamu," she says, referring to Sea World's famous killer whale. Jordan loves land animals as well — after discussing Sea World, she talks about visiting the San Diego Zoo.

Despite her disability, Jordan gets to experience many of the same fun activities that other kids her age do. At a recent Los Angeles Dodgers game, she even got to meet the entire lineup — the names of which she knows by heart. Inevitably, though, there are times when she’s left out.

9:45: Missing out
"How do crabs walk?" Ms. Barkovsky asks the class. Jordan looks on as the other children drop to the floor and scuttle around on their hands and feet.

It’s time for Jordan to leave for her OH class, and Ms. Barkovsky tells the students that they won’t see Jordan tomorrow.

"Bye, Jordan!" a girl blurts out.

Ms. Barkovsky continues explaining that Jordan won’t be in class tomorrow because of "Field Day," during which the regular-education classes will be outside playing games. As Jordan, Kellie the nurse, Kelly the photographer and I exit the room, I hear a girl ask, "Why can't she go to Field Day?"

After two hours in the regular-ed kindergarten every morning, Jordan traverses the campus to a set of bungalows that houses the OH program, where she spends the rest of her short school day. Though the program is on the Jefferson Elementary campus, it is not affiliated with the school. An intermediate agency called Larson West oversees the OH program.

9:50: Out of the mainstream
We arrive at Jordan’s OH classroom. Jordan introduces Kelly and me by name to her teacher, Janine Ballister.

As we wait for the other students to arrive, Jordan starts to chat, but saliva has built up in her mouth again. We have trouble understanding her, and a breakdown in the communication results.

Kellie gets out the suction device, and Jordan rolls her eyes. "I'm getting confused," she says.

Kellie asks why, but Jordan is too frustrated to try to explain. "I'm getting confused," she repeats.

As Jordan cools down, Mrs. Ballister says that her mom is bringing her power wheelchair for their circus rehearsal. Jordan perks up and describes her other wheelchair excitedly. "You're gonna love it!" she says.

10:00: Cute kids
Other students arrive — one in a stroller, one with a walker, some walking. Mrs. Ballister, a teacher since 1980, speaks affectionately of her class. "I have the cutest kids on campus," she says.

Kellie picks Jordan up and carries her to the tadpole tank. She sits in a chair with Jordan on her lap. Jordan’s head tilts occasionally, but she is able to sit up by herself.

One little girl grins as she enters the room and seems curious at the additional company. A few more file in close behind her. They all gather around the tadpole tank and we discuss the states of the tadpoles and their varying degrees of development into frogs.

Besides Jordan, there are seven students with various disabilities in the class. They are at pre-school level, while Jordan is at kindergarten level. For the eight students, Mrs. Ballister has two assistants. The attention these students require more than justifies the intimate teacher-to-student ratio.

10:20: Add it up
Jordan breaks away from the rest of the class to practice math one-on-one with Mrs. Ballister. The other children stay on the opposite side of the classroom and sing songs about colors. Mrs. Ballister sets up the same type of microphone system for Jordan that her kindergarten teacher used.

They begin a lesson on sequencing events. Jordan watches closely and works out problems on what seems to be a difficult concept for a 5-year-old. Every once in a while, Jordan turns her head up enough to smile for the camera when she notices Kelly about to take her picture.

Jordan’s mom, Patti, enters the classroom with the power wheelchair, which is also purple and has a label with her name on it. Jordan is excited to see her mom, but after a quick greeting and kiss, Patti has to head right back out.

The Forsters now have a minivan that allows Patti to take the power wheelchair to school when she needs to without too much trouble. But for the first two months of the school year, before the bus operations were able to arrange Jordan’s transportation, Patti and David had to break down the chair to fit it into the small car they had at the time to get their daughter to school every day.

10:30: Power lunch
As Jordan continues working, Kellie feeds her Pediasure through a gastronomy tube, which goes directly into her stomach. When all of the formula has gone down the tube, Kellie pours in water a little bit at a time.

"If she tries to swallow, she'll choke," explains Kellie. "That's why we have to suck the saliva out of her mouth."

10:55: Arts and crafts
Kellie and a class aide help Jordan make her dad a card for Father’s Day. Jordan paints on her own most of the time, but occasionally the class aide helps her press down hard.

11:05: Fancy free
The students prepare to rehearse for their circus performance, which they will put on tomorrow for parents and OH students from the other two classrooms.

As I try to take in the spectrum of excited activity, I suddenly hear, "Look, Tom!" I turn to see Jordan in her power wheelchair, driving herself around the room. Her face is full of glee, and she looks incredibly liberated to be controlling where she goes.

Jordan’s power wheelchair is equipped with a joystick sensitive enough that she barely has to push it to control where the wheelchair goes. But like any other activity, the power chair eventually wears her out. Her father, David, explains: "Even with the joystick set to feather touch, it still requires a lot of effort for her. Because she doesn’t have any upper body strength, the power chair does make her tired."

11:12: The greatest show on earth
The circus rehearsal begins with Jordan the lion tamer rolling into the room with whip in hand. She leads two of the other girls, who are lions, into the ring. "Lions, stop!" barks Jordan, voice amplified by her personal microphone and speaker unit.

The circus continues with a strong man, a parade of elephants and a daredevil shooting from a cannon. Jordan returns twice in the performance, first as a tiger and then as a pony. For the finale, the entire cast returns to the room, and the audience joins them in singing "If You're Happy And You Know It."

11:30: Tough to swallow
As the other students begin eating their peanut butter and jelly sandwich lunches, Kellie takes Jordan to the restroom. I watch the children dig into their food, and it hits me that Jordan is not able to enjoy a peanut butter and jelly sandwich.

11:40: Principal’s perspective
Outside the classroom, I meet Principal Pat Husted of Larson West, the agency that runs the OH program here. He discusses the students and the program, which has been on this campus for 20 years.

"We try to mainstream them to the maximum extent possible," he says. Regarding Jordan, he says she is "in the gifted range," and does extremely well in her mainstream class.

The conversation shifts to the school bus end of the program. “I don’t think people realize the responsibility these drivers carry. It's tremendous," he says. "The parents put a lot of trust in them."

He goes on to explain the challenges of arranging the school bus routes. "We don’t want to put too many fragile kids on a bus — then it gets to be too long of a route," he says. "There are a lot of these sorts of considerations."

12:05 p.m.: Twist and shout
I return to the room as music time is beginning. A teacher from one of the other OH classes comes in with her students and leads the children in dancing and singing with "Who Let the Dogs Out." Kellie holds Jordan’s arms and waves them around gently. For the next song, Kellie helps her play a percussion instrument. Then she helps her wave a ribbon around. Jordan seems to be enjoying it, even as the other students do the motions on their own.

12:15: Teacher chat
While the kids are busy, I talk with Mrs. Ballister about Jordan. "She's above grade level — very bright," she says, echoing the words of everyone I've talked to today. "But she's so fragile."

Mrs. Ballister says that physically, Jordan can’t handle a full day. "She gets very tired at the end; some days are worse than others," she says.

She points to a few chairs flanking a nearby table. "She has different chairs for sitting in different positions," Mrs. Ballister explains. "She can get bedsores from sitting all day."

Thinking about how tired Jordan must be, I wonder what the bus ride home will be like for her.

12:30: Homeward bound
We leave earlier than the rest of Jordan’s classmates and head out to her afternoon bus. The driver, Ofelia West, waits next to a Torrance Unified School District small bus.

"You ready, cutie?" she asks. Jordan nods slightly, looking a bit tuckered out. Ofelia says that she is filling in for Jordan’s regular driver today, but she drove Jordan to school last summer. It’s clear that the two know and are comfortable with each other.

Mike Culver, manager of transportation and safety for Torrance Unified, emphasizes the challenges for all involved in transporting a medically fragile student. Since Jordan needs her own route, Culver says scheduling is more difficult, as is fitting the cost into his budget. He also stresses the importance of assigning the right driver. "It requires a driver with a tender, loving care approach," he says. "They've got to be very attentive to the child's needs."

12:33: Need a lift?
The lift is down, and Jordan slowly backs her power chair onto it with directions from Ofelia and Kellie. It takes a few tries, but she seems to enjoy the challenge.

As Ofelia raises the lift, Jordan calls out to Kelly Bracken not to forget her backpack, which is sitting on the ground. Ofelia straps down Jordan and chair inside the bus and then lowers the lift again to get Jordan’s manual wheelchair.

The rest of us board the bus and sit down. There is one other student on the bus this time — a girl who looks to be younger than Jordan sitting in a child seat.

As Ofelia covers the lift and closes the door, I ask Kellie about her experience as Jordan’s nurse. "I thought it would be challenging," she says. "It's usually hard for kids to get attached to someone other than their parents, but Jordan and I get along really well."

From what I’ve seen today, calling Kellie’s job "challenging" is an understatement. From 7:30 in the morning until 3:30 in the afternoon, she is at Jordan’s side — helping her write, clearing saliva from her mouth, escorting her from place to place, etc.

Patti Forster says she’s grateful to have Kellie, whose services are paid for by the state, with her daughter on the bus. Though Patti trusts the drivers and knows many of them, when new drivers or substitutes get the route, Kellie often shows them the ropes.

"I feel more comfortable that she’s riding along with Jordan," says Patti. "Every child is different, and I just need [the drivers] to know what to do with mine. She’s got a lot of needs."

12:40: On the road again
Ofelia looks at Jordan and double-checks the wheelchairs. The loading process took about twice as long as it did in the morning, but there are two wheelchairs this time.

As we head out, the bus rattles and squeaks, making it hard to hear anyone, especially Jordan. Ofelia says the bus is a 1980 model, but the wheelchair lift is brand new.

Jordan tries talking to Kellie, but Kellie can't hear her over the noise of the bus and across the distance from where Jordan is strapped in to Kellie in the closest seat. After multiple attempts to communicate, Jordan hangs her head in frustration.

Up front, Ofelia speaks of the enormous responsibility and the oft-tiring nature of her job. "It takes a lot of strength making sure the chairs are secure. If anything’s a little loose, something can go wrong," she says.

12:55: End of the day
The bus pulls up to Jordan’s house, and Patti meets us on the sidewalk. Ofelia lowers the lift to the driveway and unloads Jordan in her power chair and then the manual wheelchair. Patti greets and hugs her. They briefly discuss Jordan’s summer school schedule and confirm that Ofelia will be her driver. Ofelia heads back out to drop off the younger student.

Jordan invites Kelly and me in to see her fish, Blue, and her room. As we move up the driveway toward the house, I notice that the license plate holder on the Forster's minivan reads, "Jordan — #1 Dodger Fan," a souvenir of the recent game she attended.

We move around the side of the house and into the backyard, where a metal ramp extends from the back door, over two steps and into the grass. Jordan scoots herself onto the ramp and upward, but she needs a push as she gets close to the top. Patti notes that they rent the house and aren’t able to make modifications, like a permanent ramp that would be easier for Jordan to ascend.

In the house, Blue swims about in a jar on the kitchen table. Jordan shows us her room. She is visibly tired and isn’t as talkative as she was in the earlier part of the day. I ask her if she had fun at school. She nods.

It’s time for Jordan’s afternoon nap, but, being a good hostess, she offers to play a game or watch a video with us. Patti looks at her daughter and smiles. "Her body is bad, but her brain — woo! — it works overtime," she says.


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