Rheumatology

Going to school is the single most important responsibility of every child and teenager. Up to 60 percent of a child’s waking hours may be spent at school or in school-related activities, so it is important that these activities be as positive and enriching as possible. 

For a child with a rheumatic disease like arthritis, getting the most out of school activities can be a challenge. Many times special adjustments need to be made, and when all members of the team (child, parents, healthcare team, school staff) work together, it can make school a positive experience.

The key to making things work at school is good communication between the school staff and the family. Most schools are willing to make necessary changes as long as they are given information. It is very helpful to meet with the teacher (or principal, school nurse, physical education teacher) after your child is diagnosed with a rheumatic disease to discuss your child’s health and special needs. It also may be helpful for someone from your child’s healthcare team to call or meet with the school staff (parents must give written permission).

Schools need:

• Information about your child’s illness, medications and special needs
• To understand that rheumatic diseases can change from day to day, morning to afternoon, or even hour to hour

To know about any possible problems your child might have at school (walking up stairs, holding a pencil, carrying heavy books, missing school for doctor appointments, flare-ups)

You, your child, her teacher and other school staff  are a team. A key to the team’s success is good communication. Talk with school staff before classes begin each fall. Make sure they understand the unique challenges your child faces and provide ideas on how they can adapt the school setting to help your child succeed. If the school has a nurse, make sure he or she is familiar with the details of your child’s condition, potential complications and any medication that must be given during the day.

The Arthritis Foundation pamphlet, When Your Student Has Arthritis, can provide helpful information for teachers and schools.

One of the best ways to identify possible problem areas is to walk through your child’s daily school schedule. Follow his school routine by checking classroom setup, desk location and arrangement, bathrooms, the cafeteria, library, gym and playground.

The first step in meeting your child’s needs is to identify potential problems your child might have at school. Most children with rheumatic diseases have only a few areas of concern. Review the table for these common issues and suggestions for how to solve them.

Mobility Problems

• Arrange for your child to leave class a few minutes early or to arrive five minutes late.
• Ask the school to keep your child’s classes close together to minimize long walks.
• Have one of your child’s friends stay with her during class changes.
• Arrange for someone to help your child get on the bus.
• Minimize the time your child spends on the bus or commuting to school, leaving more time to get ready in the morning.
• Make special arrangements for gym class or PE activities to include options your child can participate in.
• Prepare plans for field trips, fire drills and class activities.

Stiffness

Difficulty carrying books, lunch trays or other items

• Be sure your child knows how to protect her joints when lifting objects.
• Ask for two sets of books – one to keep at home and one for school; if the school is unable to provide two copies, ask for photocopied chapters.
• Provide a backpack if your child does not have shoulder problems.
• Have a friend help carry lunch trays or heavy items.
• Obtain an elevator pass or key if possible.

Difficulty writing, opening lockers or toileting

• Have your child try pencil build-ups.  Also try felt-tip pens as they require less effort to use.
• Arrange for your child to have more time to complete tests, dictate answers onto a tape, tape record lectures, or have friends share class notes.
• Request extra time for completing standardized tests (SAT, proficiency tests) well in advance of the test dates.
• Ask that your child have shorter homework assignments, or be allowed to type assignments.
• Be sure, if help is needed for toileting, it is given in the least noticeable way possible.
• Provide devices to help your child open lockers, turn door handles or turn faucets.

Fatigue

Requires medication at school

Difficulty telling classmates about the disease or treatments

The Individuals with Disabilities Education Act (IDEA) mandates that any federally funded school must make necessary adjustments to allow your child to fully benefit from his or her education.

If your child’s needs are complex, the law may require you and the school to develop an Individualized Education Plan (IEP) and / or a 504 Plan. These plans outline any adaptations or exceptions that the school needs to make to accommodate your child.  If your child’s needs are straightforward, you may be able to submit a detailed letter to the school in place of these plans. Talk to your child’s physician about the best option for your child.

Your child’s illness may leave her unable to attend school for periods of time. You, your child’s teachers and your child’s medical team should regularly discuss the amount of work your child can handle during times of disease flares. Each student has unique challenges. This list can serve as a guideline for assigning homework when your child cannot attend classes:

• Prioritize assignments. Students with limited energy may not be able to make up all the work missed.
• Shorten assignments during times of flares of symptoms: ask that a math teacher assign fewer problems for homework, for example.
• Request video or audio tapes, or computer notes of lectures, for students to listen to, watch or review while absent.
• Allow the student to substitute audio recorded work for written assignments.
• Ask secondary teachers to assign pass / fail grades rather than letter grades (when appropriate).
• Allow the student to adapt writing assignments to his environment. Writing about medical experiences or his condition can often be an interesting assignment. However, be aware your child may be reluctant to talk about his condition with peers.
• At the teacher’s discretion, determine the absolute minimum amount of work your child must complete to receive credit for the class.
• Develop a contract with your child that includes assignments, due dates, rewards and consequences. This will help her prioritize schoolwork during disease flares.
• Coordinate a “study buddy” to work with your child in problem subject areas during study hall or after school.
• Ask teachers to develop a study packet, covering core concepts, for your child to complete while absent.

Educators and parents can sometimes find it difficult to discipline a child with arthritis.  It’s natural to feel conflicted or guilty, but effective discipline brings a sense of normalcy into your child’s life by setting rules and having expectations.

Communication with your child’s teachers is key to effective discipline. Make sure they understand your child’s physical limitations, and work together with them to set standards for appropriate behavior for your child. These factors may affect discipline plans and should be considered when talking with teachers:

• Discuss and decide on expectations for the student with an understanding that they may need to be adjusted as the disease, treatment and your child’s age change.
• After diagnosis, your child may become the center of attention for you, relatives, friends and medical caregivers. Once life returns to “normal,” he may still expect to be the center of attention. If this happens with your child, it helps to talk about it, reminding him of your expectations and discussing his needs and how to meet them.
• Set clear, consistent age-appropriate limits. Let your child know what is expected of her and stick to it. If you set limits typically used with 3-year-olds, then you are likely to end up with a child who behaves like a 3-year-old.
• Inflamed joints, swelling and pain may make it hard for your child to sit still like other students. Adjust expectations accordingly, but communicate with teachers to make sure your child doesn’t take advantage of the situation.

The Division of Rheumatology at Cincinnati Children’s Hospital Medical Center provides resources about school for families of children with rheumatic disease.

Local Resources

• Division of Rheumatology
  Cincinnati Children’s Hospital Medical Center
  513-636-4676 or 1-800-344-2462, ext. 4676
  Note: Ask to speak with one of the nurses or social workers
• Arthritis Foundation
  513-271-4545, ext. 110
• American College of Rheumatology

Readings

• “When Your Student Has Arthritis,” brochure, 2006, Arthritis Foundation (ask your nurse for a copy)
• “Raising a Child With Arthritis, A Parent’s Guide,” 2008, Arthritis Foundation (you can borrow this book from the family resource center)