Back to School with Fibromyalgia or Chronic Painby Karen Lee Richards Patient Advocate
Children with fibromyalgia or other chronic pain disorders face some special challenges as they return to school. It can be especially difficult to go back to keeping a regular schedule after being able to sleep late or rest whenever they needed to during the summer. Of course, as a parent, you want to do everything you can to make the transition as smooth and painless as possible for your child.
Each year, before the start of school, arrange to meet with the school's guidance counselor and your child's teacher or teachers. Explain your child's condition and exactly what that means in terms of physical limitations, special needs and potential problems. It would be a good idea to actually have a written service agreement or contract with the school to ensure that you child will receive the necessary accommodations throughout the year and you will not have to repeatedly intervene, argue or make special requests.
School Service Agreement
What to include in a school service agreement will vary depending on your child's particular health issues and grade level as well as the school's physical layout and educational requirements. Here are a few items to consider including:
- An assessment of your child's medical problems and why they require special accommodations. Include a doctor's note if required.
- A clear description of any medication needs including where the medication is to be kept, how it is to be labeled, when your child should be given medication and how the child is to access the medication when needed. Many schools now have a zero-tolerance policy when it comes to any kind of medication, so it is essential that this be clearly spelled out so that you, your child and school personnel understand exactly what is expected.
- A list of any emergency medical procedures that might become necessary with clear instructions as to what is to be done.
- Arrangements for elevator access or permission for any available shortcuts between classes to reduce walking or climbing steps.
- Permission for extra time between classes to allow for needed restroom or locker stops, or because your child cannot walk quickly due to pain and fatigue.
- An allowance for getting to school late due to medical problems without being marked tardy.
- An extra locker to reduce the number of books that have to be carried at one time and/or reduce walking distances.
- A second set of books for home so your child doesn't have to carry heavy books home in order to do homework.
- An arrangement for getting class notes and homework on days your child is absent.
- A provision for homebound instruction whenever your child requires excessive absences.
- An arrangement for the teacher to provide notes for classes that require extensive note-taking.
- Although most schools now allow a great deal of computer usage even in the lower grades, you might want to make sure your child has permission to use a computer for long written assignments.
- An arrangement for extra time to take tests due to pain, fatigue or cognitive functioning problems.
- An understanding of any special needs your child has regarding participation in recess activities.
- Any special arrangements that may be necessary regarding physical education classes. Some schools have an adapted PE class or allow students to write health reports as an alternative to standard gym class. You may also be able to reach an agreement to provide credit for specific contracted activities, like walking or physical therapy sessions.
- If your child is in high school and has some flexibility as to class choices and scheduling, some things to consider include: 1) What time of day is your child at his or her best? If mornings are rough, schedule a study hall for first period. If your child has more pain or fatigue at the end of the day, schedule a study hall for last period. 2) Think about the location of classrooms and placement of lockers when arranging the schedule of classes. 3) Talk with the guidance counselor for a recommendation as to which teachers would be most supportive and understanding of your child's needs.
Outside of School
Children want to fit in and feel like they belong with their peers. Although their energy and physical abilities may be limited, encourage them to participate in any extracurricular activities they feel up to. Even if they can't always take part, let them do as much as they can. The same goes for social interaction. It's important for every child to have friends. Help them come up with ideas for activities they can do with their friends - even if it's just inviting a friend over for popcorn and a movie.
Attitude is Key
A positive attitude is essential for a child to face the daily challenges of school life. As a parent, you have the greatest influence and opportunity to teach them the coping mechanisms they need to make school and life a positive experience. Instead of approaching their challenges with a "Why did this have to happen?" attitude, you can encourage and motivate them by saying, "We can deal with this and anything thing else that comes our way." Children will follow your lead. If you believe they can cope and succeed, they'll believe it, too.
With a little pre-planning and a big dose of positive attitude, you can ensure that your child's school years are a happy and productive learning experience.
Kalbach, Laura (2003, February - May). Life's little lessons: Heart-to-heart advice for young people coping with chronic pain. Fibromyalgia AWARE, 46-47.