The Halo Club

Kathryn Benton, a 12-year-old afflicted with Angelman syndrome, cannot talk. But the special friendship she has with Emily Faber, a gifted fourth-grader from McKinney, speaks volumes.

E-e-e-e-e-o-o-o," squeals Kathryn Benton, a brown-haired moppet with vivid blue eyes and a wide smile. With a rigid hand she paws through a book of laminated pictures of family, friends, and teachers created for Kathryn by her special-education teacher, Holly Clemons.

It is almost noon on a school day in early April, and Clemons has asked Kathryn where she wants to be at this moment. Sitting at a small table in the brightly decorated special-ed room, which resembles a typical kindergarten classroom except for the bean bags where the wheelchair-bound children sometimes sit, Kathryn flips through the photos with a fierce determination.

She stops at a Polaroid of Mrs. Davie, the fourth-grade teacher in whose class Kathryn spends almost half her day.

A volunteer buddy and helper from Mrs. Davie's class picks up Kathryn in her classroom every morning to participate in the class' meeting. The children gather in a circle and throw a Koosh ball to one another and talk. The meeting ends with a fierce game of hot potato to energize the students. Kathryn returns to the class for gym, art, or music. She has lunch with the class and remains with them for social studies, science, and recess.

Now, Kathryn clearly indicates to Clemons she knows exactly where she is supposed to be--back with Mrs. Davie's fourth-grade class. After Kathryn singles out the teacher's picture, Mrs. Davie's class of 22 students stops by to pick up Kathryn for lunch.

Kathryn slaps all the children's hands, lets out another squeal, and lights up like a jack-o'-lantern, all toothy grin and sparkling eyes.

But when she gets to Emily Faber, Kathryn throws her arms around her and positions herself by Emily's side. Kathryn is attracted to Emily like a magnet to metal.

Though Kathryn shares a mutual affection with almost all of the class members, and each child has a chance to volunteer to be her special buddy each day, there existed a special bond between Kathryn and Emily from the first time they had met.

They are two vastly different children: At 10 years old, Emily is a bright student who was chosen for the McKinney school district's talented-and-gifted Star program. Students who are selected for the prestigious Star program at Glen Oaks Elementary leave their regular classrooms for an entire day each week and meet in a separate building behind the school, where they work on more challenging, higher-level tasks.

But shortly after the school year began, Emily dropped out of the Star program, in part, because of Kathryn. "I don't get to see Kathryn all day," she had complained to her mother.

Kathryn, on the other hand, is two years older than Emily, but mentally much younger--though how much younger is not quite clear. Kathryn suffers from Angelman syndrome, a form of mental retardation with an unusual pattern of characteristics that has just recently registered on the medical radar screen.

Like others diagnosed with Angelman--named for an English pediatrician who discovered the syndrome in 1985--Kathryn has an almost perpetually sunny disposition; she cleaves to others with an unabashed enthusiasm. She also can be as meddlesome and frenetic as the most rambunctious 2-year-old; and she suffers from a sleep disorder that can be so disruptive she must be locked in a bare room at night to keep her from being stimulated and out of harm's way.

Kathryn is a messy eater, often drools, and frequently has to be reminded to put her tongue back in her mouth. But perhaps her most prominent trait--and one that makes her relationship with Emily that much more unusual--is that she does not speak.

And yet it is Emily who is always thinking of ways the class can better include Kathryn in its activities. Emily is always reminding Mrs. Davie not to leave Kathryn out, and always controlling the often recalcitrant Kathryn. Emily knows what Kathryn needs, even though her young friend can't express it herself.

Kathryn might not be able to speak, but Emily understands her friend perfectly.

Emily helps Kathryn through the lunch line. Back at the table, she helps Kathryn open her drink. They sit at the end of a long Formica table, in a little cluster of Emily's closest classmates--the ones who don't mind that Kathryn, in Emily's words, "is a very messy eater." When a visitor Kathryn recognizes comes by the table, Kathryn points a finger to an empty chair, indicating she wants the visitor to sit down. When the visitor hesitates, Kathryn pulls on her purse to insist she stay.

Emily's friends ask her questions about Kathryn. One wants to know why her hands shake. Emily matter-of-factly explains it's due to her anti-seizure medication, which she recently has stopped taking because her shaking was so bad she couldn't even hold her lunch tray.

Kathryn is the center of attention--the class clown. She tries to distract one of the children by giving him a hug; at the same time, she reaches around to grab for his Reese's Peanut Butter Cup. Then she lunges for one child's drink. The first time Kathryn pulls the prank, the children laugh. But Emily, who takes a proprietary interest in helping her friend stick to good behavioral standards, gently reprimands her with the admonition, "Kathryn, it's not yours."

When Kathryn persists in stealing food, Emily warns her: "Do you want me to get Miss Fobb?" a reference to the cafeteria aide with whom Kathryn sits in "time out" if she misbehaves. Kathryn smiles mischievously, but ultimately listens to her friend. She thumps her hand to her chest and gives the American Sign Language sign for "sorry."

After Kathryn has devoured a chocolate dessert of her own, her face is a blur of brown streaks. Kathryn's eating habits make some of the children in the class uncomfortable, her teacher confides. But Emily doesn't mind. "Kathryn, wipe your mouth," she reminds her friend before it's time to leave.

After Kathryn is taken on a bathroom break by an aide, she rejoins the class for science. Today's assignment is measuring trees, and Mrs. Davie arms each student with a ruler, tape measure, and chart. Kathryn accompanies Emily to a small crape myrtle and assists her by holding one end of the ruler while Emily measures the tree's height.

The wind is whipping through the trees, and the girls have a hard time holding onto the ruler. Emily glances up at Kathryn, whose tongue is hanging out as she concentrates. "Look," Emily says, "your drool is blowing in the wind."

Kathryn and Emily burst out laughing.

Three years ago, when the McKinney School District offered middle-school principal Isiah Joshua the plum position of becoming the principal of the district's brand-new elementary school, he told his bosses he would only work at the school if there was a special-education program on the campus.

A jovial man who stands in the hall at the end of each school day dispensing hugs and high fives as the youngsters file by, Joshua says, "I really believe a well-rounded school is made up of the different kinds of people we have in our society. Learning how to work with people who are different is an important skill for these children to learn."

At Slaughter Middle School, where Joshua had been principal for three years, the special-education class catered to some of the most severely handicapped children in the district--mostly nonverbal, nonmobile children. It was called the basic-skills class: Here the children learned the tasks of every-day living--like brushing their teeth, using the toilet, and tying their shoes. For these children, the simplest task can be painstaking to learn, taking a year or longer to master.

Joshua decided to take this class of children with him to Glen Oaks, where they were a startling contrast to the well-scrubbed, Gap-clad offspring of Collin County's most gilded community. Joshua does not believe that handicapped children should just be placed on a campus, inside some classroom to be peered at through glass or across a crowded lunchroom as in a human zoo. He believes they should interact with the regular students as often as possible.

"This teaches tolerance and humanity," Joshua says. "And since much of learning is based on modeling behavior, the special-ed children learn what is normal behavior."

His own beliefs dovetailed with a national and statewide movement in special education called "inclusion"--bringing handicapped children into regular classrooms as frequently as possible when teachers and parents are willing. For some students, it means participating in classes like art or music or gym, where their presence is not too disruptive. Higher-functioning handicapped children--Downs syndrome children with high IQs, for instance--often spend the entire day with a regular class.

In increasingly financially strapped school districts, the high cost of special education--which can require a student-to-teacher ratio as low as one-to-one--has come under scrutiny. But Joshua and other educators strenuously defend these programs--not just for what they do for the students in them, but for what they bring to the student body as a whole.

A few months ago, several parents and students, including Kathryn Benton's and Emily Faber's parents, made a special presentation to the McKinney school board about the important, though often intangible, benefits of the costly special-ed programs in the district. One of the parents from Glen Oaks told the school board that although the educators might think they are spending a lot of money on just eight children, they should not ignore the domino effect the program has throughout the school in teaching lifelong tolerance and comfort levels.

Tolerance and acceptance are lofty, and hardly simple, goals for children to learn. But no one--not Joshua or special-education teacher Holly Clemons or Kathryn Benton's mother, Paula, for that matter--expected, or could have predicted, the deep devotion that blossomed between two children as different as Kathryn and Emily.

"The relationship between Emily and Kathryn is something I just can't explain," says Debbie Faber, Emily's mother. "Emily views Kathryn as her very best friend. And I am convinced beyond a shadow of a doubt that these two girls talk."

"The relationship they have is like no other between a special-ed student and a regular-ed student," says Clemons. "The reaction--the thrill--they both have when they see each other is constant. It is a true friendship. It has been one of the most gratifying aspects of my career."

Emily Faber has trouble falling asleep. She spends at least an hour rummaging through her closet deciding what to wear tomorrow and how she will fix her long, lustrous blond hair. The next day--a Tuesday--there is a Special Olympics regional track-and-field event in Waxahachie. Kathryn will be competing.

Emily had begged her mother to let her miss school to cheer her friend on. With the school's blessing, Emily's mother has decided to let her go. She rides on the bus with Kathryn and the other special-ed students from McKinney. After a picnic lunch in the stands, Kathryn's teacher comes to collect her for the softball throw. She refuses to leave until Emily comes with her, which Kathryn indicates by tugging on Emily's arm.

Two weeks later, another Special Olympics event is held, this time in Allen for the McKinney and Allen areas. Wearing a Special Olympics T-shirt she got at the previous event and a cloth angel pin Kathryn's mother gave her, Emily again rides the bus with the special-ed children. Another boy from Emily's class has also come along, and Emily tries hard to suppress her jealousy.

While waiting for the events to start, Kathryn is wild. She runs all over the field and under the bleachers, with Emily and her other classmate in tow.

Emily's mother, who has accompanied Kathryn's mom for today's events, tells Emily there is another girl with Angelman syndrome here, though she is much younger than Kathryn. Anxious to meet her, Emily clasps Kathryn's hand. Together they walk over to meet the girl, another silent child with a constant smile.

When Kathryn's turn to run the 50-yard dash comes, Emily stands behind her, her arms encircling Kathryn's waist to make sure she doesn't begin until the starter pistol goes off.

Kathryn runs down the track on her tiptoes, beaming as she waves to the small crowd gathered on the sidelines. She comes in second, and Emily, who has run over to the finish line, greets her with a hug.

It is only in retrospect that Paula and Bill Benton recall there was anything out of the ordinary about Kathryn's early months.

She spit up a lot. She refused to sleep on her stomach, rolling onto her back from the time she was only a few weeks old. The back of her head was abnormally flat, but the doctors assumed it was due to her sleeping preference. And she had flaxen hair, the color of corn silk, which was odd because both sides of the family had dark hair. (Though Kathryn's hair would later turn dark, light hair can be an early sign of Angelman syndrome.)

Initially, none of these things aroused much concern in the Bentons, who live in Van Alstyne, a Grayson County town north of McKinney. In fact, Kathryn was such a good baby, sweet-tempered and docile, they took her everywhere, and people always remarked how lucky the new parents were.

But by Kathryn's eighth month, something just wasn't right. A less persnickety pediatrician might not have even picked up on it. But something the Bentons' doctor couldn't pinpoint bothered her.

Kathryn wasn't gaining weight, so her doctor recommended Paula stop breast-feeding and switch to formula, which only made things worse.

Kathryn was late to sit up, so her doctor sent her to a physical therapist. After a few sessions, Kathryn no longer needed to go.

Then Bill came home one day from work at his real-estate and insurance company and found Kathryn looking dazed. The pediatrician thought Kathryn might have had a seizure and sent her to a neurologist who did two EEGs but found nothing significantly wrong. He told the Bentons if they came back in five years to tell him that Kathryn was a straight-A student in the talented-and-gifted program, he wouldn't be surprised.

But by age 2, Kathryn still was not walking or talking. Doctors lumped her into the vague category of "developmentally delayed," and the Bentons enrolled her for the next two years in the Richardson Development Center.

"It was one thing after another," Paula recalls. "The doctors were never satisfied, but they couldn't put their finger on it. If she was Downs syndrome, the doctors would have known from the minute she was born. We would have been blown away, but we would know where to go. For us, the first seven years of Kathryn's life were an emotional roller coaster."

In 1991, when Kathryn was 7, a former teacher of hers from Richardson sent the Bentons an article about something called Angelman syndrome. "It was like I had written the story myself," Paula says.

The article detailed the findings of an English pediatrician named Harry Angelman who, in 1965, first described in the medical literature three children in his practice with startling similarities. They walked with a stiff, jerky gait. They did not talk but were always smiling or laughing. They frequently suffered from seizures, hyperactivity, and sleep disorders.

Dr. Angelman was convinced all three children had a similar affliction, which he dubbed the "happy-puppet syndrome." Though other similar cases were published, the condition was believed to be very rare, and many physicians doubted its existence.

Dr. Angelman did not seriously investigate a cause, or search out the extent of the affliction, until he was on vacation years later and went into a museum, where he stumbled upon a 17th-century Italian painting of an angelic child with light hair and eyes. In the corner of the painting was a smaller painting of a marionette puppet. He was convinced the similar traits shared by his three similar patients was more than mere coincidence.

It wasn't until 1985, when genetic testing had progressed more fully, that a team of researchers Angelman worked with in Florida detected a slight deletion in the 15th chromosome of many of these patients.

Since 1985, 700 children in the United States have been diagnosed with Angelman syndrome, though scientists believe the condition frequently goes undiagnosed. The numbers are probably much higher.

From the article, the Bentons learned about the Angelman syndrome Foundation, which has a monthly newsletter, a yearly conference that the Bentons have attended ever since, and even a support group run by and for siblings--The Halo Club.

The Foundation has provided the Bentons information and an extended network of support and guidance. Certain ages have been harder than others, though Kathryn, a perpetually busy toddler, is never easy. When she was younger, one of her teachers nicknamed her "Seek and Destroy." She's not intentionally destructive, she just has the dangerous combination of curiosity and a short attention span.

Kathryn also must be watched constantly. Paula once turned her back on her daughter for an instant, and Kathryn stuck her hand in hot grease then put her hand to her mouth. With an exceptionally high pain threshold, Kathryn hadn't realized she was injured.

Another time, she fell off a trampoline, and it took the Bentons two days to realize she needed medical attention. Even the doctors, who watched Kathryn walk around the emergency room waving at people, were surprised the X-rays showed her wrist was broken.

Another time, Kathryn thought she was helping her mother do laundry. In the time it took Paula to walk from one end of her house to the other to put away some laundry, Kathryn had poured a bottle of Windex and a bottle of bleach into the washing machine.

"Her personality is so neat, though," Paula says. "She is so loving. With all Angelman children, their favorite thing is other people."

Holly Clemons, Kathryn's special-ed teacher, agrees: "Kathryn makes you feel like you're the most important person in the world to her. That's an incredible gift."

When Kathryn became too old for the infant-development program, she needed to start grade school. Van Alstyne had no special-education programs, so the Bentons were sent to Sherman. Normally outgoing and fearless, Kathryn hated the class, which had lumped all different handicaps together. She would cling to her mother when Paula tried to leave.

The Bentons put Kathryn in a regular classroom in Van Alstyne for the next year. "The school tried its best, but she was a lot to handle," Paula concedes.

Finally, the Van Alstyne principal recommended Kathryn be transferred to the McKinney school district, where she's been for the past seven years. It has been a good fit, but this past year has been the most remarkable for Kathryn.

"At the beginning of the school year, I knew I wanted Kathryn to be included in a fourth-grade classroom," Clemons says. "I wanted her to have the opportunity to model behavior and to make friends. None of us thought it would be that meaningful, or [knew] the extent to which a friendship would develop."

At the beginning of the year, Kathryn joined Mrs. Davie's class for music, art, and gym. Then Mrs. Davie requested to have Kathryn for a longer portion of the day. Fearing her daughter would be too disruptive, Paula Benton was hesitant at first and wondered if Mrs. Davie knew what she was getting into.

"It's amazing," Paula says. "She's learned to sit quietly at the desk like the other kids. And the children have been so accepting of her."

Especially Emily Faber, who, several months ago, invited Kathryn to her 10th birthday party, the first birthday party--besides those of relatives--to which she had ever been invited. "Emily treats her like a friend," says Paula. "She is so loving toward her. Kathryn may seem happy all the time, but she has feelings. She knows when someone's not nice to her."

Emily Faber did not want to move to Texas, but she had no choice. Her father, Chris, who works for MCI, was getting a job transfer, so Emily and her older sister, Alison, were uprooted in the middle of last year from their home in a suburb of Detroit. They had lived there their whole lives and were leaving behind a large extended family and a host of friends.

A sweet-natured, outgoing child--"She was born with a party hat on," says her mother--Emily had a tough time when she moved to McKinney. There were only 10 children in her class, seven of whom were boys, and she felt lonely and homesick. After visiting Detroit last summer, she cried on the plane ride back to Dallas.

Perhaps the isolation she felt as a newcomer imbued in her a certain affinity for Kathryn. From the beginning of the school year, Emily's dinner-table conversation with her family consisted of what her mother calls "Kathryn stories."

She would tell her family about this funny little girl who would hug her at lunch while trying to steal her food. The highlight of Emily's week was when she got to be the buddy helper, she would say.

One day Kathryn's mother was having a hard time getting Kathryn to leave Mrs. Davie's class during recess. (Kathryn is picked up early so her mother can get back to Van Alstyne in time to pick up her two younger sons from school.) Emily devised a plan.

As Paula Benton walked onto the playground, Emily whispered in Kathryn's ear that maybe her mother would take her to McDonald's on the way home. Kathryn excitedly hurried into her mother's car. As her mother drove north on I-75, Kathryn became almost apoplectic when her mother approached a McDonald's. She pointed and screeched until her mother stopped. Paula figured out that was what Emily had whispered in her ear.

At first, Emily's mother, Debbie Faber, was concerned about her daughter's infatuation with her new friend. She thought Emily might be taking on too much emotionally. She was afraid it might alienate other children.

Emily admits some friends were angry that she was "hogging" Kathryn. Others felt uncomfortable around Kathryn. And some were jealous that Kathryn responded so well to Emily. When the teacher explained some of the children's feelings, Emily assuaged the situation by trying to explain the dynamics of her relationship to her classmates.

"Sometimes the buddy helpers make her do things she doesn't want to do," Emily says. "If they didn't pull her and just asked her, she would get up and do it. She has her own personality."

When Emily is asked why she likes Kathryn so much, she thinks for a moment.
"I like Kathryn because she likes me," she says. "I can tell she likes me best out of everyone in the class. She gives me hugs all the time. I'm the only one in the class who wipes her face. Everyone else gets grossed out. In my old school, we had a lot of handicapped kids, but you never saw them. They were always in their room.

"I think that we became friends because Kathryn understands so much about me and everyone else. She makes it fun. She makes everyone happy."

Emily has her own handicap," her mother says, only half-jokingly. Emily is always coming up with ideas and plans that inevitably make more work for her mother. In fact, Emily had gotten everyone in her family involved in Special Olympics. They all attended the events held during weekends, and volunteered as huggers: They hug all the participants as they cross the finish line.

"She's the type of kid who will say, 'Hey, why don't you bring your dog over, and we'll go trick-or-treating,' and before you know it, Emily's roped me into making a costume for the dog," Debbie Faber says.

So it was hardly a surprise that Emily began planning her birthday party during Christmas, though her birthday was almost two months away. She announced to her mother she wanted Kathryn to be there. Debbie wasn't sure Paula Benton would let her come, but Emily was insistent. When her mother suggested they do a Disneyland Olympics theme, Emily overruled her, fearing Kathryn wouldn't be able to participate.

When the invitations went out, Debbie called Paula, whom she had met briefly at a school choral program earlier in the year. "I told her I was a responsible parent and could Kathryn please come to the party," Debbie recalls. "Emily also wanted Kathryn to stay two hours later so they could get to play."

Debbie stopped by Kathryn's classroom one day before the party to talk with special-education teacher Holly Clemons. Debbie wanted to make sure the party had been planned with Kathryn's best interests in mind. As soon as Kathryn saw Emily's mother, she ran over to the "Happy Birthday" sign on a class bulletin board. Then she packed up her book bag and stood up.

"I think she thought she was going to the party right then and there," Debbie recalls. "She is so smart. She understands everything."

Thirteen girls came to Emily's "blooming birthday party." With chocolate cake and Oreo cookies, Debbie made a cake resembling a pile of dirt, with gummy worms and plastic daisies sprouting from the top. She filled pots with chocolate-covered raisins and had gummy worms climbing out of the pots. The dining-room table was covered with split peas painted red with black dots to resemble lady bugs.

For fun and games, Emily's father, Chris, blew up balloons and tied them to the girls' ankles. They were to burst each other's balloons. Kathryn liked just busting them in her hands. She managed to fit herself in anyway she could.

For much of the party, the girls played a game Kathryn had devised. She apparently had never seen an electronic garage door before, and she spent a lot of time just mesmerized as she made it go up and down while trying to roll a ball up the driveway and into the garage before the door closed.

"She was laughing so hard and having such a good time," Emily says. "That was my best birthday party ever."

The birthday present Kathryn gave Emily is a silver bracelet with the inscription, "Special friend." Emily wears it every day, and each night she slips it off and places it back into its velvet case--the only possession, Emily's mother insists, Emily takes such good care of.

After Emily's birthday party, Debbie Faber was so overcome with feelings she sat down at her computer and committed some of them to paper. It was meant to be a journal entry, for no one but herself. But she gave a copy to Holly Clemons after the teacher had had a particularly bad, frustrating day with her class. Clemons encouraged Debbie to give the Bentons a copy and to read it at a recent school-board meeting.

It is, of course, about Emily and Kathryn.
"I think about how lucky we are to have what we have--two little girls who have found an unconditional love to share at this time in their lives," Debbie wrote that night, "two little girls who communicate without the roadblock we adults might see...

"Emily knows that Kathryn will move up to middle school next year, and she doesn't think it's fair that Kathryn is going on without her. I think she'll find some way to get up to Dowell Middle School a lot next year...All this is pretty amazing when you remember a Little Angel who doesn't speak orchestrated it. Some of us have Angels on our shoulders, and others have them in the classroom.

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