As parents, it is your responsibility to act as your child’s advocate − someone who speaks out for a person or a cause. Good advocacy for a child’s health care and his/her educational program requires knowledge of your child’s medical history and diagnosis, medical needs, patient and education rights, and any specific needs your child has.
First, you must understand how juvenile arthritis (JA) can negatively impact a student’s school performance:
- It can affect mobility, strength, and stamina.
- Students may come to school with varying degrees of joint function, pain, and stiffness.
- Because arthritis can jump from symptom-free periods to flare-ups of pain and swelling very quickly, absences may be irregular and frequent.
- Sometimes children have physical and emotional side effects from their medications.
Students with JA are often plagued with unhealthy feelings that can have devastating psychological and social impact. They may feel:
- Hurting and tired from disease symptoms
- Angry and depressed about the restrictions imposed by the disease
- Embarrassed about having the disease
Since education is important to a person’s future success in life, it is critical to address the special needs of children with arthritic conditions to ensure they are given the best opportunity possible for academic success during childhood. Schooling not only has cognitive, psychological, academic, and social benefits: it’s also your child’s legal right.
Students with arthritis usually require modifications to accommodate their excessive absences and various limitations caused by both the disease and its treatment.
They often qualify for free services under the Individuals with Disabilities Education Act (IDEA), which entitles kids with disabilities to educational support.
Does Your Child Need an IEP or 504 Plan?
Individual Education Plans (IEPs) are customized goals and learning strategies created by teachers, school psychologists, specialists, and counselors. IEPs fall within your school’s Special Education program and can be requested by you or anyone on your child’s education team. They take a student’s individual needs into account and establish accommodations accordingly.
Section 504 of the Rehabilitation Act (504) also allows for modifications and special services for qualified students, but to a lesser degree and separate from Special Education. Most children with arthritis qualify for either an IEP or 504 under the category of “Other Health Impaired,” and the services and modifications offered under both are legally binding and establish a precedent for services in the future.
To decide whether or not to pursue either service, talk to your child’s doctor about how long your child is likely to be away from school and whether the symptoms, treatment or side effects will cause discomfort or possibly interfere with concentrating, doing homework, performing small motor skills such as writing, and meeting deadlines. Ask for guidelines about attendance, tutoring, and studying.
Then talk to the teachers and school staff, and encourage your child, if old enough, to do the same. Arrange to meet with your child’s personal teacher and the school’s Student Support Team (SST). This group supervises plans for a limited array of modifications in the regular education program. Together, you can assess your child’s needs and explore your options. SST may adequately address your child’s needs, but these modifications are not always legally binding. Many states require that students first utilize the SST program before being referred to a 504 or special education. Maintaining open communication is necessary to create the best program for a child with arthritis. If teachers are given adequate notice, they are generally more willing to make changes in their class policies and routines, and you will more likely agree on acceptable solutions and an appropriate workload.
Helping Your Child Cope with School
Although keeping up with school assignments can be difficult for arthritic children, parents and teachers can help them adjust and meet the challenge by following some guidelines.
- Remember that most children want to be treated the same as their peers.
- Since sick students might not complain, and may even hide their disease symptoms to appear like their peers, you’ll need to watch and listen for clues of discomfort. Observe your child’s body language, such as rubbing joints and facial expressions that may indicate if he or she is experiencing fatigue or pain.
- To better assess your child’s current symptoms, pain, and joint functioning, have him/her draw pictures or color on a body-outline graphic to show the problem areas. Then you can more accurately pinpoint the best accommodations.
- Develop a plan for medication management. Most schools require that medicine be sent in the original container with the prescription label attached, and the school nurse or other personnel must supervise the dispensation of medicine.
- Include the sick child in planning classroom modifications.
- Help the student participate in extracurricular activities, and foster social interaction within and outside the classroom.
- Encourage classroom students to look at the strengths of fellow classmates instead of limitations.
- Encourage acceptance of individual differences in the classroom.
- Communicate regularly about your child’s disease symptoms, medications, and level of fatigue. The need for modifications is sometimes obvious; but less apparent limitations often require accommodations, as well.
Accommodations to Consider
- Allow for late arrival to school in the case of morning stiffness or if completing morning routines is difficult.
- Allow extra time for changing classes, particularly in the morning.
- If possible, arrange for classes to be close to each other, and avoid staircases whenever possible.
- If staircases are unavoidable, arrange for an elevator pass.
- Allow for frequent stretch breaks to relieve stiffness, and locate the student’s classroom seat where these breaks are less conspicuous.
- Allow for frequent snacking if stomach discomfort is a problem.
- Allow extended time for taking tests and completing assignments.
- Recruit a willing companion to carry heavy items such as books and cafeteria trays, and to help with tasks such as opening milk cartons, providing notes, etc.
- Provide a second set of textbooks to be kept at home.
- Recruit a willing and bright study partner to provide copies of class notes and assignments during school absences.
- Allow the JA student to dictate lengthy writing assignments to a friend or family member.
- Provide free support services, such as tutoring.
- Modify physical education activities to promote participation in appropriate exercise and recreation, which is so important for the child with arthritis. This may be as simple as providing a pinch hitter for baseball games or using softer playground balls instead of regulation basketballs.
- Modify emergency fire and tornado drills to ensure safety.
Getting Creative with Assistive Devices
Assistive devices − both factory-manufactured and homemade − play a vital role in helping JA students endure the physical challenges of studying for long hours. Here are a few ideas:
- Book holders that keep reading at a comfortable level/angle and reduce neck stiffness
- Adjustable chairs that allow students to change positions
- Foam grips for pens and pencils
- Felt tip pens instead of ballpoint pens
- Computers and other electronic devices to aid in writing assignments
- Tape recorders
If long stretches of time will be spent in the hospital, ask the hospital, doctor, or nurse about onsite schooling. There are two common types of hospital support systems: 1) bedside schooling for children who are too ill to leave their rooms and 2) classroom schooling for kids who are well enough to be educated individually or in small groups in an onsite hospital classroom.
Hospital-based teachers work closely with teachers from the child’s school to maintain continuity in education and to facilitate smooth reentry into the classroom when the child is well again. School is scheduled around therapies and medical tests, and a child’s medical condition and strength is always taken into consideration.
Your child may feel isolated from friends and classmates. Online social networking sites (facebook, myspace), text messaging, instant messaging, email, and telephone conversations can help him/her stay connected. A collection box could be set up at school for friends to deposit notes and pictures. You could also arrange for visits from your child’s friends, and take your child to school plays, sports events, classroom parties, and other extracurricular social gatherings to promote an easier transition socially and academically when your child returns to school.
Whether your child is being educated in the hospital, at home, or in school, getting better must remain the top priority, so be realistic about what he/she can handle. Kids can feel unspoken pressure from teachers, parents, and even themselves about their schoolwork, and this added anxiety can hurt their recovery.