Aside from gracing the cover of Arthritis News this September, seven-year-old Nicole Alves will also be going - like most other kids her age - back to school.

In the schoolyard, her big smile, sparkling out of a face covered in freckles, beaming from beneath bright red hair, is hard to miss.

Next you'd probably notice the splints on her wrists, and that her arms and legs are very slim - the result of the juvenile arthritis Nicole has had to cope with since she was 13 months old.

Nicole's arthritis limits her movements and causes her pain in all her major joints, including wrists, fingers, elbows, ankles, knees and feet. This spring, she spent some time in a wheelchair because of an operation on her left ankle. Usually, though, she gets around quite well on her own - only a bit slower than other children.

But Nicole's smile is right up to speed. She is a happy, well-adjusted child.

According to a 1980 federal government survey, there were about 74,000 children under 15 across Canada with juvenile arthritis. Most of them are girls, and most can - and should - attend regular schools. Their arthritis has no effect on their ability to think and learn, it just slows them down and limits some of their physical actions.

Nicole is a student at Toronto's Hawthorne II Bilingual School, located within the building also housing the conventional Christie Street Public School. Because of her arthritis, Nicole requires, and gets, a bit of special attention in school. And Xavier Lambert, her grade two teacher, provides Nicole with superb support.

Her mother, Nadine Alves, has nothing but praise for the efforts made by the school's staff to help Nicole participate as much as possible in the school's mainstream curriculum and activities. But a large measure of credit is also due Nadine, who has developed a successful set of strategies that helped pave her daughter's smooth entry into the public-school classroom: 'These are things that I have found helpful and even necessary to help Nicole have a so-called 'normal' school experience.'

The highlights are here, and they match the recommendations of medical authorities and professional educators. And, from Nadine's and Nicole's experience as mother and daughter, they work. Nadine and Nicole both have taken a friendly but assertive approach to school, and they both want to share their experiences with other parents and kids.

Meet The Teachers

It's essential that the parents meet the teachers at the start of the year, inform them of the child's condition, limitations, strong points and special requirements.

At the same time, tell the teachers a bit about juvenile arthritis. As Nadine puts it, 'If they are like me, my daughter was the first child I knew with juvenile rheumatoid arthritis, and I had a lot to learn.'

It can make a difference, too, whether the child developed arthritis before entering school, or after several years of formal education. In this latter situation, it can often be harder to adjust, for both student and teacher, because they can't help comparing the child today to what he or she was a few years earlier, when a more conventional school life was possible.

Nadine recommends the education kit on juvenile arthritis from The Arthritis Society's Ontario division to help parents educate themselves and others, including teachers. Parents in other provinces can contact the local Arthritis Society office for a variety of publications about juvenile arthritis and inquire about the type of services available to them.

Teachers can vary, too. Other kids with arthritis across Canada may not be as fortunate as Nicole in having a teacher who is not frightened of the disease, who wants to learn about it, and who operates with considerable flexibility.

And other teachers might not be as fortunate as Lambert, to have a pupil who handles her limitations with maturity beyond her years, and who doesn't alienate those trying to help her.

Keeping the other members of the school staff, including nurses and secretaries, informed of juvenile arthritis also means there are more people able to spot a problem, whether it's a door too heavy for a child or a behaviour problem linked to fatigue caused by a particularly bad day of joint stiffness and pain.

There's understanding, too, when Nicole arrives late for school, because she's been to therapy before class or she woke up with unusually stiff joints and its taken her longer than normal to get ready to leave home.

Nicole's pretty well known in her school, and the teachers understand that she has arthritis. For some other students with the disease, especially those who do not wear splints or braces, many teachers who see them only in the hall or at assembly won't know he or she has arthritis, unless the parents make a special effort to ensure the principal informs the entire school staff. Keeping the staff informed will make life easier for the child during recess or between classes, when under the supervision of various teachers.

Once the teacher has begun to learn about the disease, the next step is to teach the kids. It really doesn't matter how old they are. Even kindergarten-aged children can learn about arthritis, perhaps from a parent who feels comfortable with the discussion, or you might ask The Arthritis Society to send in a speaker.

Nadine believes talking to the entire class is important: 'This informs the students so there is no misunderstanding of the disease, and gives the students a chance to ask questions on their own. This can make life easier for your child.'

Because Nicole is a familiar face to most at the school, the kids and teachers are generally understanding of her needs. But, from time to time, there can be problems, sometimes prompted by jealousy through misunderstanding. And this can result in a shove, a poke, or a taunt. These may be just little things to an adult, but they are important to a child, and they come from silly things. Nicole's finger strength and her limited flexibility means that a teacher needs to help her with her boots, zippers, buckles and coat in the winter. Some of the other kids, who don't know her well, might make some kind of mean comment on this, because they are jealous of the special attention of a favorite teacher.

That's why it's important to keep in touch with the child's feelings on a day-to-day basis. Any problem that arises at school needs to be dealt with, and it's quite possible that a child will not tell mom or dad, because of unwarranted embarrassment.

Parents who have been away from the education system for a longtime and are returning with a child with arthritis should look for a new addition to the education system. These are special education experts, who, in Nadine's experience, do a great job in helping integrate a child with special needs into a school. If they are not based at the school itself, they are probably available from the local board of education, and these experts can clear up any situations that can't be handled by the teacher and principal.

Nicole's Team

In Nicole's case, her team of helpers includes grown-ups, friendly children, parents, and a younger brother.

Nicole's two top grown-up supporters at school are Xavier Lambert, her teacher, and Frances Bertucci, the school secretary.

Lambert has made extra efforts to learn about juvenile arthritis, and has even gone to the Hugh MacMillan Medical Centre to watch Nicole do her special exercises, both to learn more about her disabilities and to support her in her efforts.

And Frances Bertucci welcomes Nicole into the school office whenever the little girl can't go with the class on a field trip or out at recess. Typewriters and computers are important tools for children with arthritis, because they allow the kids to get words and numbers down on paper more quickly. Nicole is learning to type on the office electronic typewriter during some of her visits with Frances in the school office.

There are more adult supporters at the Hugh MacMillian Medical Centre, a facility that specializes in helping children with physical disabilities. Nicole's physiotherapist, Virginia Wright, plays an important role, as does her rheumatologist, Dr. Ron Laxer, director of the Rheumatic Disease Unit at Toronto's Hospital for Sick Children and one of three consulting pediatric rheumatologists at the centre.

The Hugh MacMillan Medical Centre has become a familiar part of Nicole's life. She's one of 180 children with juvenile arthritis registered at the centre, and one of a core group of about 50 who are treated there regularly. The centre has an in-patient group, where approximately six to 10 children from all over the province stay for periods ranging, on average, from three to six weeks. These children get intensive therapy, regular school lessons, and advice for the children and their parents on how to cope with juvenile arthritis. This out-patient group has children from two years old up to 18.

When Nicole visits the centre, she is part of the out-patient group. Nicole, like most of the children, works through a series of exercises in a warm pool, at about 33 degrees C. These exercises follow a routine, from the toes up, that builds strength and flexibility. The kids know the programs, and take turns leading the class.' They feel proud they know the routine,' says physiotherapist Virginia Wright. After the exercises, they get to play some games in the water, and may switch to a slightly cooler pool for some free swimming. The buoyancy and warmth of the water lets the joints get sufficient exercise without putting too much stress on them.

In addition to Virginia Wright, the other members of the team working with her and the other children are Christine O'Brien, an occupational therapist, and Elaine Smith, a social worker. This highly dedicated team often meets with a half-dozen children of the same age in informal discussion groups to help them socialize and 'normalize' their experiences. 'It's very important that a child with arthritis participate as much as possible at school, ' Wright believes. 'The best idea is for parents and teachers to meet and talk about the individual child. You can't make firm guidelines that apply to every child, and a child an be in a changed situation, if his or her arthritis flares.' Indeed, the unpredictable nature of juvenile arthritis - painfully obvious one day and mysteriously gone the next - is one of the most difficult aspects to deal with.

School teachers are welcome to come to the centre to learn about arthritis and therapy when they have a student with juvenile arthritis in their class. Independence is important to the children, and Wright says, 'it's important to stress this need for independence. Parents and teachers must let the children do things for themselves, even if they are slow or it's a little bit painful. It may take them a little longer to put on their coats or to walk somewhere, but it gives them a sense of accomplishment.'

The whole class is supportive of Nicole, and a lot of this support is in the form of not making too much of a fuss over her, but just accepting her as one of them, even if she moves a bit slower and has splints on her wrists.

Five kids in class are her closest friends. Joanne, Jessica, Daphne, Chi and Lalu are her buddy system supporters. They all play with each other at recess, make sure that Nicole can be included in their games, and help Nicole with heavy doors, and carrying things.

And Mark, her kindergarten-aged kid-brother, shares his sister's freckles and red hair, but, happily, not her arthritis. Mark sticks up for his sister when she needs help, but he gets just as much support back, say mom and dad.

Nicole's Arrangements

These special arrangements made for Nicole might be a good starting point for other parents:

• chair faces the blackboard, so there's no stiff neck; also a proper height for her knees and back
• Nicole gets to stay in her chair when the other kids sit on the floor
• a pencil thicker than normal for easier grip
• help with heavy doors
• permission to write instead of print, because she finds this easier, with encouragement from her teacher
• a buddy system, so that Nicole's accompanied at all times
• another child carries her lunch box, because it's awkward to grasp. When she gets older, she expects there will be kids to help with heavy books and binders, too
• last up and down stairs, so she doesn't hold up the other kids, and doesn't feel pressure to move faster than comfortable
• permission to stay in the office at recess, where she colors or reads. Nicole likes recess, and stays inside only on days where her joints are particularly stiff, the weather is damp, or icy conditions makes it dangerous for her
• understanding when she's late or misses school because she has a medical appointment or her joints are particularly stiff
• skips school swimming (Nicole does her swimming at the Hugh MacMillan Centre as part of her therapy.) Instead, her school has arranged for her to either visit a younger grade to help out with the smaller children, or a higher grade to learn what she can by listening to the teacher and older students
• on field trips, mom or dad goes along with the class, or will drive Nicole to the site, and meet up with the class there
• included in the physical education class. Xavier has invented games that let Nicole run and the other kids walk, or Nicole stay in one spot, with the other kids moving around her. She also times events, keeps scores, and so on. The key, however, is that she participates with her classmates whenever possible.

Some Other Hints

Transportation for Nicole on special outings from school is a bit of a problem. The wheelchair she used for a while this spring proved useful for one trip from school, and on another trip, Lambert just picked her up and carried her, but this system would rarely work for other kids and teachers. Nadine suggests schools consider getting a wheelchair, or even better, a large stroller, which could be shared by any child with arthritis and any other children with either a permanent or temporary disability that limits the distance they can walk comfortably.

Teachers and students must also pay attention to what help can come from another kid, and what needs to come from a teacher. Other children, for instance, may not get zippers and buckles done up right, or may try too hard to force an arm into a sleeve.

When Nicole gets older, she will have to adopt some new tricks teenagers with arthritis use now to help them keep up with class. A portable tape recorder helps older kids take notes. A backpack makes it easier to get books from class to class. High schools can use their computers to set up class schedules for kids to limit the distance between classrooms for different subjects. Extra textbooks kept at home minimize the weight a teenager has to lug home.

Nadine's strategic check-list saves the best advice for last:

• checking on your child, and communication on a continual basis is necessary. Concerns should always be addressed
• each teacher and board is different and will accept things differently
• don't give up - your child is very special and wonderful!