Starting The School Year On The Right Foot Can Turn Fears Into Fun And Friendship

School teaches children much more than reading and writing. It also teaches social skills that shape their interactions with people for a lifetime.

Parents of children with disabilities want their kids to experience school as a time of friendship, participation, inclusion and fun, though they may fear it will have its share of isolation, exclusion, loneliness and cruelty. Many parents have been delighted to discover that, with just a little help, young children have no problem at all in accepting each other as friends and equals, no matter what individual differences exist.

TEACHING THE TEACHER

Parents of children with disabilities work with school personnel each year to create federally mandated Individualized Educational Programs (or Plans) that spell out their children's academic needs, health requirements, and building and classroom accommodation needs. (For more information on how to prepare an IEP, see "The ABC's of an IEP" in Quest, 1996, no. 3.) Having these elements in place before school begins avoids making a child more conspicuous than necessary on the first day.

The IEP is essential to creating the framework for a child's success in school, but a student's psychological comfort in the school environment can't simply be mandated on paper. During and after the IEP process, parents should talk with teachers and decide what to say to the child's classmates about the disability. Be sure the child has a voice in this decision and is comfortable with the plan, no matter how young.

Lauren Larkin's son Nicholas will enter kindergarten in Danvers, Mass., next month. In preliminary meetings about his Duchenne muscular dystrophy, the school staff expressed concern about his social inclusion. Nicholas is ambulatory but moves slowly and has trouble climbing stairs.

"They wanted to know if it was OK if they told the other children that Nicholas had a problem with his muscles and that's why he couldn't keep up," Larkin said. "They felt it might help if the kids knew there was a reason. By not knowing they might think he was lazy or just didn't want to keep up with them." Larkin asked Nicholas, 5, if it was all right to tell the other children his muscles were different, and he said that was OK.

Nicholas is getting off to a good start because school personnel are interested in helping him succeed in all aspects of school life. The most important requirement for that success is a teacher's attitude. Joan Badger, a life skills teacher in Elwood City, Pa., has both a teacher's and a parent's perspective on the topic.

"If I saw my daughter coming into my classroom as a student that I was not familiar with, she would terrify me. To have a kid in a wheelchair with a tracheostomy, I would not be able to figure out what she needed," Badger said. "Very honestly, our education as teachers did not prepare us to deal with physical disabilities in the included classroom."

To help those who teach Josie, 13, Badger prepares a written guide called "Tips to Help School Personnel." She updates the guide each year and makes it part of her IEP. She also distributes it to every teacher and other school employee who deals with her daughter, including some who wouldn't normally see the IEP.

Badger's guide describes Josie's medical condition, myasthenia gravis, and related needs. It discusses the effects that Josie's fatigue, suctioning needs and wheelchair use might have on her behavior in the classroom.

With this informative guide and a caring teacher, Badger said, the school year goes well. "If you have a teacher who is willing to work with your child, you will be amazed at what can be done."

Every year, Badger also asks Josie whether she'd like to tell the class something about her neuromuscular disease or whether she'd like the teacher to do so. Josie's choice varies from year to year but she always wants to be in the room when the teacher explains. And she doesn't want her mom talking to her classmates.

Jacqueline Simcic-Becker, an MDA health care service coordinator in Cleveland, agreed that it's often better not to have the parent explain the disease. "Sometimes the other kids aren't going to ask a parent questions, whereas they may ask the stranger from MDA or the teacher," she said. For the child with a neuromuscular disease, "You don't want Mom to handle your problems, regardless of what the issue is. You don't want Mom taking care of everything."

Two years ago, Simcic-Becker began holding a Tea for Teachers each fall, an event that draws an enthusiastic turnout. All the youngsters served by her MDA district office are asked to invite their teachers and other school personnel. At the tea, MDA provides information on the medical and social aspects of neuromuscular diseases, the IEP process and classroom adaptations. Teachers who can't attend can request a packet of printed information.

Simcic-Becker also helps families with matters related to school adjustment. Any MDA office can provide printed material, referrals to other services or presentations at a child's school if requested by a parent or teacher.

WHAT TO TELL THE KIDS

If parent, student and teacher agree that classmates would benefit from an explanation of a child's disability, the information should be geared to the children's level of understanding. It should address any obvious differences that the children will notice.

In kindergarten or first grade, the teacher might simply say, "Nicholas has a special kind of muscles that are different from yours. He gets tired pretty fast and he doesn't run very fast. So if you wonder why he sometimes stops to rest, that's why." In higher grades, terms such as "muscular dystrophy" and "disease" can be used.

Teachers should be advised not to talk about the child outside the child's presence. Children shouldn't get the idea that there's anything secret or shameful about a classmate's medical condition or be encouraged to feel sorry for a child. Simcic-Becker said all explanations should be factual and avoid emphasizing what a child "can't" do.

Patti Hanlin of Westerville, Ohio, helped introduce her daughter Kelly to her kindergarten class by explaining that Kelly used a wheelchair because she had spinal muscular atrophy. As a result, "They accepted her and they looked at her as just another child and they weren't afraid."

Now, when classmates have questions about her SMA, they just ask Kelly, 10.

COOL WHEELS

Young children are drawn to new things, including a child's orthopedic equipment. When Kelly Hanlin was in first and second grade, her teacher would take off her AFOs (braces) and massage Kelly's feet during reading time. Seeing the AFOs helped the kids understand Kelly's disability and brought out their desire to help.

"The kids would say, 'can I take her AFOs off today,' or 'can I take her shoes off?'" her mother recalled. "Everybody would pitch in and help. They still do. If Kelly drops something, the kids will run over and pick it up and say, 'here, let me help you.'"

When Tomás Díaz of Houston, MDA's 1995 National Goodwill Ambassador, was in first grade, the MDA district office held assemblies with all the students in his school. They told the children about Tomás' SMA and why he uses a wheelchair. His mother, Mona, believed it was good to inform the whole school since others outside his classroom had questions, too.

Tomás took part in the presentation, demonstrating items such as the hook he uses to button his shirt.

Last November, Tomás, now in fourth grade, got a power wheelchair. His mother gave his classmates an orientation on the new chair. She told them they mustn't grab the joystick or other controls.

"I explained that you couldn't walk too close to Tomás or he could run over your feet, and not to hang on to the back of it. It made them aware to respect the chair, and it gave them knowledge about how the chair helps Tomás."

Discussion of a wheelchair or scooter always elicits questions such as: How fast will it go? How does it get power? How do you drive it? Some kids even say they wish they had such cool wheels.

When Rand Ushijima of Mililani, Hawaii, started taking his power wheelchair to school two years ago, the teachers made a video about it, called "Hot Wheels," and showed it to the whole school on closed circuit video. Rand and some of his friends appeared in the video, which warned the kids not to touch the chair or walk too close or stand behind it.

Rand, 9, liked the video because "He was kind of important, he was the star of it," said his mother, Jann Tsujimoto.

Rand's use of the power chair at school was a big boost to his social life. "All of the teachers said that his personality changed so much," his mother said. "He was always so sweet and shy, and when he started bringing this chair to school another side came out that they had never seen before. He was a little bit more playful, a little bit more of a rascal, a typical boy."

In his manual chair, Rand, now a fourth-grader, had less freedom of movement and had to wait for other kids to approach him and push him. Under his own power, he can mingle at will.

Rand, who has a form of congenital muscular dystrophy, even started getting into mischief. At lunchtime, some of the boys threw apples on the playground. Rand helped them "make applesauce" by driving back and forth over the apples. The boys spent a recess in the principal's office, but even the teachers enjoyed seeing Rand take part in the fun, Tsujimoto said.

HELPERS AND BUDDIES

Another way that a sensitive teacher can help a child with a neuromuscular disease feel included is by making it a privilege to help the child.

When Tomás, 9, started school, his teacher allowed him to choose a helper for the day. The child would help carry his lunch tray and push his manual wheelchair (a privilege they were sad to lose when he got the power chair). On field trips, he takes a special bus and can pick a friend to ride with him. Rather than seeing him as "having to" take a different bus, "the class all wants to go with him," Díaz said.

The teacher made Tomás' needs a way to teach helping and taking turns. She encouraged Tomás to give everyone a turn. When helping another child is a privilege, similar to being chosen to erase the blackboard or distribute books, children eagerly volunteer.

Simcic-Becker said some teachers set up buddy systems in which students are paired up to help each other with homework or other school assignments. It's a less obvious way of assigning someone to assist the student with a disability.

These techniques go a long way toward making a child with a neuromuscular disease feel like one of the gang. That helps the child develop a more confident, outgoing personality — which, in turn, makes the child more accepted by peers.

QUESTIONS AND STARES

Children with neuromuscular diseases who know that other kids like them as friends become comfortable giving simple, straightforward answers to questions about their disabilities.

Josie Badger has been asked: Can you walk without the wheelchair? Can you go swimming with the trache? Can you eat? Such questions come from natural curiosity, not rudeness.

Simcic-Becker is often asked: Is this disease catching? Did he do something to get this? By answering no to both questions, she helps clear up misconceptions.

But children do sometimes succumb to rude behaviors such as staring at or teasing a child who's different. Josie responds to stares by answering back with a smile and a "hi."

"Usually what you get in return is a smile and a 'hi' also," said her mother. If not, "then they are dismissed from her awareness. They just basically do not exist for her. If her response or pleasantry is ignored, then that's it."

Hanlin's daughter hasn't run into much teasing, a fact she attributes in part to Kelly's popularity. "People know that she does have so many close friends that you just don't want to say things like that because you're going to offend them also."

THE PLAYGROUND

Being "just another kid" is easiest in the classroom where activity is intellectual and social. Recess and outdoor playtime are more challenging for a child using a wheelchair.

Mona Díaz found out that in warm weather, Tomás' classmates would frolic on the playground equipment, leaving him sitting on the sidelines and bored. Díaz and the teacher put together a box of things, such as games, that Tomás could do outdoors during recess. Sometimes he plays alone and sometimes with others.

Kelly's classmates often adapt their 4-square, tag or soccer games to include her. During the winter, she stays inside during recess to avoid respiratory infections. "She's allowed to have a couple of kids stay in with her and they'll play board games in the classroom or just sit and yik-yak," Hanlin said.

Simcic-Becker reminded parents that they can urge schools to make playgrounds accessible with ramps and other adapted equipment. A child in a wheelchair can go into the play area and use some, if not all, of the equipment.

Kelly's school also includes other children in her adapted P.E. activities. Once a week, she gets to pick six or seven kids to go to the gym with her and play adapted games. Over time all the kids in her class are involved.

Hanlin said the practice "brings her closer together with kids that she doesn't know that well. It enables them to kind of appreciate her limitations, but at the same time they recognize that, hey, she's just like us. She wants to have fun and play and enjoy, too."

For Josie Badger, participation in playground activities is difficult because of her severe disability. Her parents, Joan and Bruce, make an effort to find other social activities for her, such as inviting kids for sleepovers or gatherings at their home. Josie also makes friends through educational camps, Girl Scouts and 4-H.

Joan Badger added, "We have really encouraged a best friend. We take the best friend on vacation — Josie's our only child — because that allows normal separation from adults. Then a friend who's around a lot knows when she needs to get help and is able to assist in basic things." The friend also helps Josie feel comfortable in peer groups by serving as a natural go-between.

Simcic-Becker stressed the importance of activities outside the classroom. Joining a scout troop or being a scorekeeper for a sports team helps a child make long-term friends.

Such activities should, of course, be chosen according to the child's interests.

THE MIDDLE YEARS

While kids from 5 to 10 years old are usually very open to new people, in the later elementary and middle school years, they begin forming cliques and often exclude people who are different.

In addition, in middle or junior high school, kids often have new classmates, change classrooms several times a day and face puberty. These new experiences can throw even the best-adjusted youngster into a storm of insecurity.

As pre-teens and adolescents become increasingly independent, they sometimes leave less mobile peers behind. Planned activities to which a youngster with a neuromuscular disease can invite friends help make up for being excluded from skating or swimming or parties at inaccessible homes.

Establishing good friendships at an early age eases a child's social inclusion during these years. "The friends they made when they were younger and were able to do things are the same friends that you want them to have later when they need help," Simcic-Becker said.

Keeping a child in the same school system makes this easier. New classmates "didn't know that child when that child could do all the things they could. They're seeing the wheelchair first, and getting them to see Johnny is oftentimes hard."

Activities in which the child excels help others see the individual. Older kids can make new friends through debate clubs, the school newspaper or outside-school programs such as scouts, 4-H or church.

For a good perspective on finding ways to fit in, see "From Where I Sit," in this issue.

HIDDEN DISABILITIES

If a child is using a wheelchair or wearing braces, the disability is obvious and other kids need information about it. What about the child who experiences muscle fatigue but isn't visibly disabled?

Lauren Larkin is concerned about whether knowing her 5-year-old son has Duchenne will affect the attitudes of those around him.

"My biggest thing is that he gets treated the same as everyone else. I find people who don't know treat him the same. I feel like once I tell the parents [of his classmates] it changes the way they look at him. In their mind, it's no longer just Nicholas, it's Nicholas with muscular dystrophy."

Nonetheless, Nicholas' health needs come first and the school system will provide his needed therapy. By learning now why he tires easily, his classmates will probably have an easier time understanding later changes in his condition. When Tomás started school, he was still walking some of the time. For his safety, his classmates were told about his disability. "His teachers told the class, Tomás can walk but you don't fool around with him, don't push him," his mother said.

When a child's disability doesn't show by late elementary school, parents must respect the child's preference about what to tell classmates. Sometimes children with Becker muscular dystrophy or other conditions that allow them to remain ambulatory try hard to keep up with other children physically and don't want kids to know they're different.

Simcic-Becker advised, "It has to go at the child's pace. Don't spotlight or embarrass the child. The teacher needs to be sensitive" to issues such as difficulty rising from the floor or poor endurance in physical education activities.

Heather Duborg of Collierville, Tenn., 12, enjoys skating and other physical activities. Last year, in sixth grade, she couldn't complete a mile run required in her P.E. class. Most of her classmates didn't know that she had Charcot-Marie-Tooth disease, and she was embarrassed by her poor performance. Her parents, Holly and Jeff, are following Heather's lead in dealing with the situation. "She doesn't like to talk about it. This year she was really self-conscious. But she's in puberty and all that. Nobody wants to be different," Holly said.

Heather's struggling with whether to tell people she has the disease. With her doctor's advice, she's decided to train this summer and try to pass the test next year.

SPECIAL PROGRAMS

Many schools have special disability awareness programs in which nondisabled children wear blindfolds or use wheelchairs for part of a day to try to understand what it's like to have a disability. Some parents feel that, if their child is well-accepted by peers, such a program isn't necessary, or that it might overemphasize the child's disability.

Simcic-Becker warns that disability awareness programs shouldn't single out the child with a neuromuscular disease. A program that describes or simulates a range of disabilities avoids embarrassing one child while providing important education.