School Success Strategies

[Guest guest]

This is one of the articles that has been requested more than once. May

be of help to new families, who can print it out and present it to

teachers and school admin who are unfamiliar with JRA.

~Georgina

Here is some basic information for teachers, parents and students on

making the school experience the best it can be for children with

arthritis. Consider it a starting point, since every child with

arthritis has unique, individual needs that must be taken into

consideration when creating an educational plan.

http://www.arthritis.org/answers/school_success.asp

What is Juvenile Arthritis?

Juvenile arthritis is a general term for all types of arthritis and

related conditions that occur in children. An estimated 300,000 children

under age 17 are affected by juvenile arthritis, and juvenile rheumatoid

arthritis (JRA) affects up to 50,000 children. You can read more about

juvenile arthritis and its treatments in Arthritis Answers™.

Arthritis affects girls twice as often as boys. Juvenile arthritis can

occur anytime from birth until the age of 16 years. Early diagnosis and

compliance with the medical treatment plan gives the child the best

opportunity for a positive disease outcome. Some children's symptoms of

juvenile arthritis go into remission -- and others will be affected to

some degree throughout their lifetime.

Children may develop other forms of arthritis such as

spondyloarthropathies (diseases that involve the spine such as

ankylosing spondylitis, inflammatory bowel disease and Reiter’s disease)

and connective tissue diseases (systemic lupus erythematosus, juvenile

dermatomyositis, scleroderma, mixed connective tissue disease and

vasculitis). Children are also affected by non-inflammatory disorders

such as fibromyalgia.

Juvenile arthritis, like other chronic illnesses in childhood, can have

an impact on a student's school performance. Because school is a child's

occupation, it is very important to address the special needs of

children with chronic illnesses to ensure their best opportunity for

success in the school setting. Children with arthritis should attend

school. Like other children with chronic illness, modifications may need

to be made to make the school setting accessible for the child with

juvenile arthritis.

Mobility, Strength and Endurance

Juvenile arthritis can affect the student's mobility, strength and

endurance. Students may come to school with varying degrees of pain and

stiffness. The nature of these diseases may cause irregular absences,

because arthritis can go from symptom-free periods to flares of swelling

and pain very quickly.

When the student experiences a flare, modifications may need to be made.

When the student is not experiencing a flare, he can be encouraged to be

active and allowed to self-limit activities for joint protection.

Regardless of symptoms, most children want to be treated like their

peers.

Sometimes children have side effects from their medications. Children

who are taking anti-inflammatory drugs may have an upset stomach and

require more frequent meals.

Psychological and Social Impact

Juvenile arthritis is a series of chronic diseases that may be with a

student throughout his or her school career. Families may be worried

about:

The student’s ability to succeed in school

Physical appearance and limitations, and how the student’s peers will

react

Ongoing costs of medical care

The child developing into an independent, self-supporting adult

Siblings’ fears of developing juvenile arthritis

Students may be feeling:

Desire to be like their peers

Isolated

Inadequate

Insecure

Pain and fatigue from disease symptoms

Anger and depression about the restrictions imposed by the disease

Embarrassment about having the disease.

Parents and teachers can take steps to build a student’s self-esteem:

Listen and observe the student. Most do not complain and may even hide

symptoms of the disease to appear like their peers. Watch for body

language (such as facial expressions or rubbing joints) that may

indicate the child is in pain or experiencing fatigue. Encourage

students to look at strengths rather than limitations.

Include the student in planning classroom modifications. Encourage

decision making and acceptance of responsibility. Help the student to

participate in social interactions with peers and extracurricular

activities whenever possible. Encourage acceptance of diversity and

individual differences in your classroom.

Exercise

Regular exercise in an important part of a juvenile arthritis treatment

plan. Some children wear joint supports, removable splints or serial

casts. Physical therapy may be required to keep affected joints moving

and to preserve range of motion. Exercise is important to:

Keep joints mobile;

Keep muscles strong, regain lost motion or strength;

Make everyday activities like walking, dressing or eating easier;

Improve general fitness and endurance.

Sports and recreational activities are important for students with

arthritis to help them develop confidence in their physical abilities.

They should be encouraged to pick a sport or activity of interest, while

parents, physicians and physical or occupational therapists provide

guidance on maximum joint protection. Activities that exercise joints

and muscles without putting too much stress on them, like swimming,

should be encouraged.

Although contact sports are not recommended, soccer and basketball may

not be off limits for the child with arthritis. The child may be able to

do special exercises to train for the sport of choice. Protective

equipment can further reduce the risk of injury.

School Services For Students with Arthritis

Schools have several ways to serve children with individual needs. To

create the best program for the child with arthritis, family, teachers

and the physician need to maintain open communication. The following is

a description of some basic services typically available to students

with arthritis:

Regular education: In the traditional educational setting, the student

is assigned to a classroom by grade level. Modification may be needed to

this program, especially when the child is experiencing a flare.

Regular education with modifications: The individual teacher can make

modifications in the student’s classroom program. A more formal method

is to go through the local school student support team to develop an

individualized education program (IEP) or 504 plan, while accessing the

student's rights through Section 504 of the Rehabilitation Act or

through Public Law 94-142.

Hospital and homebound services: Students who have frequent or

extended absences may qualify for a teacher to work with them at home or

in a hospital setting. This is typically established by contacting the

Hospital/Homebound Coordinator in your school system or through the

special education program.

Local student support team: The student support team or similar group is

composed of teachers and administrators in the child's school. This

group supervises plans for modifications of the regular education

program. Many states require that students first be processed through

their local school and that all modification options be exhausted prior

to referral to special education. While notes and documentation are made

about the student, some modifications are not legally binding. Please

check with your local school principal to see what support efforts your

school offers.

Modifications through Section 504 of the Rehabilitation Act:

Students with special needs have the right to have needs in their

educational program fulfilled in the regular classroom setting. The

modifications listed in the section " Possible Modifications to the

Student's Educational Program " and implemented under 504 are legally

binding. A student can also be served in the regular classroom setting

under an Individualized Education Plan (IEP). Most students with

arthritis qualify for services under the category of " Other Health

Impaired. "

Special education: About 27 percent of students with arthritis receive

modifications through special education. Typically, they qualify for

services in the Other Health Impaired category, because juvenile

arthritis is a medical illness that can impact a student's strength,

endurance and stamina. To qualify for that category, a letter from the

student's physician is needed to identify the student's medical

diagnosis and how the disease impacts educational functioning.

When a student qualifies for special education services, an

Individualized Education Plan (IEP) is written that delineates specific

goals, objectives and modifications for the student's school program

that are legally binding.

Physical and occupational therapy are typically considered ancillary

services in the school system. They are intended to support a student in

an educational program. This is slightly different than a medical model,

which intends to provide rehabilitation.

To access special education services, contact the Other Health Impaired

Coordinator or Director of Special Education in your school system. You

can also check with your doctor or your local office of the Arthritis

Foundation by using our convenient zip code locator.

Coping Strategies

Juvenile arthritis is a chronic condition that requires the development

of coping strategies for the student, family, teachers and others in the

school. Here are some ideas for simple coping strategies and school

modifications:

Communication between the teacher, the student and family members about

physical symptoms and the types of medications the student is taking is

very important since some limitations may be apparent, while others are

invisible. Students who have juvenile arthritis may require simple

modifications to help make them comfortable, preserve joint function,

maximize and best utilize energy.

Frequent communication between the teacher and the student's family

helps the teacher understand the student’s current symptoms to better

meet the student's educational needs. The student's needs are best

served when open communication about disease symptoms and fatigue is

maintained among teachers, students and parents. Homework modifications

may be necessary if the child has fatigue or decreased endurance levels.

It may be difficult for young children to verbally communicate current

symptoms of pain or changes in how their joints are functioning. Asking

the child to color a body outline or draw pictures may be an effective

communication tool to help teachers better understand the child’s

symptoms and make appropriate accommodations.

Develop a plan for medication administration. Younger students will

require more supervision than older students who are working toward

independence. Many schools require that medicine be sent in the original

container with the prescription label attached. Medicines administered

at school may also need supervision by the school nurse or other school

personnel.

Morning stiffness can slow bathing, dressing and other morning routines,

leading to late arrival at school. If it proves to be a problem, it may

be possible to adjust the class schedule. Give extra time to change

classes, particularly in the morning when stiffness can be a problem. If

possible, arrange for classes to be close to each other, avoiding

stairways whenever possible. If stairways cannot be avoided, the student

may need an elevator pass.

Plan stretch breaks to relieve stiffness. A classroom seat in the right

spot can make standing and stretching less conspicuous. Students who

have knee stiffness may need extra room to extend their legs. Depending

on other symptoms, a different desk or chair may be needed. Writing may

be difficult when arthritis affects the student’s hands. It may be

difficult to hold a pencil and write for any length of time. Timed

written tests may need to be changed or extended. And consider other

ways to protect hand joints:

*Use foam shells to build up pens and pencils

*Felt tip pens require less effort

*Computers & other electronic devices can be used for writing

assignments

*Record lectures, copy another student's notes or give the student

copies of teacher overheads

*Provide extra time for written tests or allow the student to give

answers orally

*Shorten or modify long writing assignments, such as term papers

*Relieve neck stiffness with a book holder that keeps the book at a

comfortable reading angle, or change the height or other positioning of

the student's chair.

*Recruit a " buddy " to help carry heavy items such as books and cafeteria

trays, with everyday tasks such as opening milk cartons, or to provide

notes and homework information during school absences.

*A second set of textbooks kept at home can eliminate carrying heavy

books and placing stress on affected joints. It can also reduce fatigue.

*Work with physical education teachers to design modifications so that

the student can participate in physical education and recreational

activities, since appropriate exercise is very important for the child

with arthritis. Participating in sports may be as simple as using soft

playground balls instead of regulation basketballs or playing baseball

with a pinch runner.

*It may be necessary to modify " emergency drills " (fire, tornado, etc.)

to ensure that the student can act quickly in a safe manner.

The information provided by the Arthritis Foundation should not take the

place of advice and guidance from your own health-care providers. Be

sure to check with your doctor about changes in your treatment plan. The

information contained on this web site may not be published, broadcast

or otherwise distributed without the prior written authorization of the

Arthritis Foundation.

Copyright 2000 - Arthritis Foundation