Juvenile Arthritis in the Classroom

(Published with permission from Susan Hurwitch and Nancy Parsons -- from a presentation at the 1997 JA Regional Conference, Mountain Laurel Resort, Pennsylvania, August 23, 1997.)

The Parent's Role In Communication Between Home and School
What Parents Say About Teacher Conferences
What Teachers Say About Parent Conferences
Parent-Teacher Conferences: Six Ways To Assure Success
Sample Speech and Letters

Working With Your School and Educational Rights

by Nancy Parsons

School is a major portion of any child's developmental experience. It cannot be ranked as secondary in importance to the experience of home and family. The two complement one another. The child spends his school years preparing for independent existence. He must be certain of his competence. This is possible only if he has had the experience of success within the social setting that school can provide.

During the school years, each individual discovers the strengths, skills and talents he or she will continue developing as an adult. These involve more than academic capabilities. The skills of social interaction, which include the ability to communicate effectively with others, the growth of leadership qualities, and the acquisition of such character attributes as a sense of fairness and a capacity for compassion, are at levels of importance at least equal to those of the basic learning skills.

A study done by the National Center for Health Statistics shows that one child in eight in the age group of six to 11 years old will have a physical disability or chronic disease. It is two in five for the age group of 12 to 17 year olds. There is a high probability that a classroom teacher in any school in the United States will have several children with chronic illness or some other physical impairment. Imagine the problem faced by the conscientious teacher. Teachers are not required to have any medical background. They are not authorities on chronic illness and physical disability. Most teachers have had no first-hand experience contending with the medical problems of the children they have in their classrooms.

Teachers need help. Parents, as well as physicians, must take the responsibility to see that teachers are well informed. When the child with juvenile arthritis is first enrolled in school and each year after, the parent and physician should get together to plan what information and what specific recommendations are to be transmitted to the school. A conference between the parent, the classroom teacher, the principal, and the school nurse should be arranged. A phone call from the physician to the school nurse is always helpful. Ask that all staff, from the custodian to the principal, be aware of your child's needs.

The parent should be prepared to describe the program of home care and to discuss the child's personal needs, fears, and strengths. The parent will be able to offer suggestions that will be of great help to the school's faculty and staff. Come with specific ideas to solve the challenges your child will face in school. The school needs to know what medication the child will be required to take during the day. The school will need a recommendation from the doctor regarding participation in free play during recesses and to what extent the child can participate in the physical education program. Adaptations for writing, sitting, etc., should be discussed at length. For older students, consider a home set of textbooks to avoid the need for carrying heavy books back and forth.

Frequently the most difficult situation is the child with juvenile arthritis who exhibits no visible symptoms. Classroom teachers may be included to deal with such a child as though no problem existed. There may be a need to curtail some activity, particularly recess activities, or endurance running, kickball, or gymnastics in PE. Experience has shown that there is a higher incidence of important emotional problems in children who have juvenile arthritis but no obvious symptoms, than there is in children who have obviously swollen joints.

Remember, most people are not even aware that children can have arthritis. You must make them aware; you are your child's best advocate. Your child's teacher wants to join your team. Good communication is the key. The teacher, the nurse, and the administrator can then appreciate a need for rest or other special considerations.

Teachers become anxious if they have no opportunity to learn the things they must know about a disease about which they feel ignorant. The person who suffers from the lack of communication is the child. Children, parents, teachers and school administrators are all challenged to articulate ideas and to listen carefully. Unfortunately, many factors inhibit clear communication: lack of clarity, intimidation, defensiveness, time pressures, and use of educational jargon.

People may feel intimidated because they think the person they are speaking to is more knowledgeable or has more power. Each person who cares about a child's education has a right to communicate with the other people who care about the child. You will be most effective if you can express your ideas in a positive manner. Find ways to let others know that you respect their opinions and rights. If you can't find any common viewpoint, you're unlikely to be successful in making your thoughts known.

Ideally, teachers will welcome parents’ ideas, and parents will respect teachers’ ideas. Each of us can help make this idea a reality by communicating in ways that reduce defensiveness.

Both teachers and parents need support and recognition. You can create a supportive climate by recognizing the talents of your child's present and past teachers. Have you told your child's teacher what you appreciate about his or her work? Why not write a note now to your child's current teacher or one who helped your child in the past? It's difficult to predict the knowledge and skills our children will need during their lifetimes, but examples of cooperation and concerned involvement will certainly make lasting, positive impressions.

Make it clear to your child's teacher early in the year that you want to be an active participant in the child's education and that you're interested in being helpful. This is the cornerstone for cooperative communication.

The Parent's Role In Communication Between Home and School

  • Ask questions. The more you know, the more prepared you are when problems arise.
  • Meet with your child's teacher at least two times a year above and beyond traditional "open house" conferences, concerts, and end-of-day chats. These events should not be mini-conferences. Write a note to make an appointment for extended discussions.
  • Find out how you will be informed about your child's progress. Will your child bring home papers on a weekly basis? What about progress reports and curriculum summaries?
  • If there is a problem or you suspect a problem, immediately call for an appointment. Don't show up unannounced, since surprise visits usually lead to incomplete information and are not fair to the teacher, parent or student.
  • Children who have parents who volunteer or find other ways to get involved in school life do significantly better in school.
  • Eliminate barriers to clear communication, such as: lack of clarity, intimidation, educational jargon, defensiveness, and time pressures.

What Parents Say About Teacher Conferences

  • Help parents to feel comfortable at the meeting. School can stir up unhappy memories for some adults.
  • Be flexible about the meeting time and tell how long it will last. We all have busy schedules.
  • Know the child's strengths and weaknesses. Understand that parents have deep feelings about their child, even though there are many other students in the class.
  • Be well prepared and give specific examples of the child's progress.
  • Listen and ask questions.
  • Avoid educational buzzwords that parents don't understand.
  • Suggest practical ways to work with the child at home.
  • Explain tests and standardized scores.
  • Let parents know about any special services the school offers.
  • Realize that conferences with team specialists can overwhelm parents. Knowing in advance what the meeting is about and allowing us to bring someone else along will help.
  • Establish ways to keep both parents in a divorced family informed.
  • Respect the confidentiality of any sensitive information parents may share.
  • Leave parents with a feeling that the child can succeed.

What Teachers Say About Parent Conferences

  • Try not to be late and stay within the time scheduled.
  • Introduce yourself. Some adults may be stepparents, non-custodial parents or guardians with different last names.
  • Have specific questions or concerns to discuss. Let teachers know if you disagree or are unfamiliar with something teachers say or do. Give teachers a chance to explain.
  • Realize that the child's experiences at school may be different from what parents experienced when they were students.
  • Avoid blaming teachers if the child has a learning, social or emotional problem. Instead, ask teachers for strategies to motivate or help the child.
  • Tell teachers about past successes. If other teachers have handled your child more easily or with better results, share the information with the teacher.
  • Let teachers know when they’re doing a good job and that you appreciate what they are doing.
  • Listen and ask questions such as: "Does my child pay attention? Participate in discussions? Present any problems?"
  • Understand that teachers may not be able to solve every problem. Bring a friendly, open attitude to the conference. Teachers and parents are working toward the same goal: the child's success.
  • Tell the teacher if you have problems at home that may be related to school.
  • Know how much the teacher values the parent's participation in the conference, especially if the child is having difficulty.
  • When dealing with teenage students, stay involved with your child’s progress in school, even though at this age children tend to push parents away.

Parent-Teacher Conferences: Six Ways To Assure Success

  • Write notes before the conference about important topics to cover. Parents may want the teacher to know about the child's home life, personality, problems, habits or hobbies. Parents might want to address concerns about school policies or programs or the child's progress.
  • Ask your children what they would like you to talk about with their teachers. Also, ask your kids what they think are their best and worst subjects -- and have them explain why.
  • Stay calm during the conference. Remember, parents and teachers are there for only one reason: to help the child.
  • Ask important questions first, in case you run out of time.
  • Try to ask questions such as: "Is my child in different groups for different subjects?" Why? How well does my child get along with other children? What are his or her best and most challenging subjects? Is my child working to his or her ability?"
  • Find out specific ways you can help your child perform better in school. At home, discuss these strategies with your child and let him know that you and the teacher care what happens. 

Sample Speech and Letters

Here are some sample documents you can copy and adapt for use as you work with your school’s personnel:

Sample Letter to an Elementary School Teacher, School Nurse or Principal
Sample Letter to High School or Middle School Nurse, Principal or Teachers

Sample Letter to an Elementary School Teacher, School Nurse or Principal

Dear ______:

My daughter [name] will be entering your fourth grade class for the [year] school year. She was diagnosed with juvenile arthritis (JA) in [year]. JA is a chronic condition that, in [child’s name] case, has manifested itself with joint pain, stiffness, generalized fatigue and other subtle systemic signs. Most of the time there are few outward signs of her disease.

[Child’s name] has been taking [medication] on a regular basis for the past several years as part of her treatment. [Child’s name] has had minimal complaints (primarily pain/stiffness in her lower extremities). However, as fall approaches, she may experience increased symptoms of her illness. [Child’s name] is followed by a pediatric rheumatologist, ophthalmologist and pediatrician to monitor the status of her disease, and potential eye involvement. I try, as much as possible, to schedule these visits outside the school day. Your understanding is appreciated if this cannot be accomplished.

Juvenile arthritis is a chronic disease. At the present time her disease is controlled by medication. Stressors such as a cold, flu or other infection can flare her arthritis symptoms, and increase her morning stiffness, pain, fatigue and irritability. I will keep you informed of any changes in [child’s name] condition, and I would very much appreciate communication from her teachers to keep me informed of any difficulty she may experience during the school day.

[Child’s name] is a good student and enjoys school. I have enclosed several publications from the Arthritis Foundation that I hope you will take the time to review. I hope to meet with you to talk to you about [child’s name] condition and to answer any questions that you may have. Please have the same expectations for [child’s name] that you have for all of your students academically. If there are ever any questions or concerns, please call me at [telephone number]. Thank you for your time, and I look forward to meeting you.

Sincerely,

Sample Letter to High School or Middle School Nurse, Principal or Teachers

TO ALL TEACHERS OF [student’s name]:

My daughter, [name], will be a student in your class for the [year] school year. [Name] was diagnosed with juvenile arthritis (JA) in [year]. JA is a chronic condition that in [name's] case has manifested itself with joint pain, stiffness and swelling of her knees, ankles, wrists, fingers, neck and toes [your child’s symptoms]. Most of the time, there are few outward signs of her disease.

[name’s] medication regimen includes a combination of disease modifying medications, nonsteroidal anti-inflammatory medications [optional to list medications], daily home exercises and pacing of her daily activities. [name] is followed by a pediatric rheumatologist, ophthalmologist and pediatrician to monitor the status of her disease, and possible complications from medication and potential eye involvement. I try, as much as possible, to schedule these visits outside of the school day. Your understanding is appreciated if this cannot be accomplished.

[Name] is a very good, hard-working student. I have enclosed several publications from the Arthritis Foundation that I hope you will take the time to review them. Please have the same expectations for [name] that you have for all of your students academically. If there are ever any questions or concerns, please call me at [telephone number]. Thank you for your time, and I look forward to meeting you.

Sincerely,
    
   

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