Working With Your School and Educational Rights

[Guest guest]

Classroom http://www.arthritis.org/resources/classroom.asp

(From a presentation at the 1997 AJAO Regional Conference, Mountain

Laurel Resort, Pennsylvania, August 23, 1997.)

Working With Your School and Educational Rights

by 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

a.. Ask questions. The more you know, the more prepared you are

when problems arise.

b.. 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.

c.. 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?

d.. 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.

e.. Children who have parents who volunteer or find other ways to

get involved in school life do significantly better in school.

f.. Eliminate barriers to clear communication, such as: lack of

clarity, intimidation, educational jargon, defensiveness, and time pressures.

What Parents Say About Teacher Conferences

a.. Help parents to feel comfortable at the meeting. School can

stir up unhappy memories for some adults.

b.. Be flexible about the meeting time and tell how long it will

last. We all have busy schedules.

c.. 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.

d.. Be well prepared and give specific examples of the child's

progress.

e.. Listen and ask questions.

f.. Avoid educational buzzwords that parents don't understand.

g.. Suggest practical ways to work with the child at home.

h.. Explain tests and standardized scores.

i.. Let parents know about any special services the school offers.

j.. 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.

k.. Establish ways to keep both parents in a divorced family

informed.

l.. Respect the confidentiality of any sensitive information

parents may share.

m.. Leave parents with a feeling that the child can succeed.

What Teachers Say About Parent Conferences

a.. Try not to be late and stay within the time scheduled.

b.. Introduce yourself. Some adults may be stepparents,

non-custodial parents or guardians with different last names.

c.. 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.

d.. Realize that the child's experiences at school may be

different from what parents experienced when they were students.

e.. Avoid blaming teachers if the child has a learning, social or

emotional problem. Instead, ask teachers for strategies to motivate or help the

child.

f.. Tell teachers about past successes. If other teachers have

handled your child more easily or with better results, share the information

with the teacher.

g.. Let teachers know when they're doing a good job and that you

appreciate what they are doing.

h.. Listen and ask questions such as: " Does my child pay

attention? Participate in discussions? Present any problems? "

i.. 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.

j.. Tell the teacher if you have problems at home that may be

related to school.

k.. Know how much the teacher values the parent's participation in

the conference, especially if the child is having difficulty.

l.. 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

a.. 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.

b.. 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.

c.. Stay calm during the conference. Remember, parents and

teachers are there for only one reason: to help the child.

d.. Ask important questions first, in case you run out of time.

e.. 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? "

f.. 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:

A Sample Speech to a School Eligibility Committee

Sample Post-Evaluation Letter to Physical Therapist

Sample Letter to an Elementary School

Sample Letter to High School or Middle School

A Sample Speech to a School Eligibility Committee

(The following sample speech offers a guideline you can adapt to

inform your school's eligibility committee about issues they need to understand

as they work with you and your child.)

Juvenile arthritis is a difficult illness to understand. There are

many subtleties to the disease that are not visible to the naked eye, such as

inflammation and swelling that contribute to the pain and impaired mobility that

a child experiences at various times throughout the day, week or month.

Our daughter [name] has had arthritis for [length of time] and we

have learned much about the management of her illness. But because of the fact

that it is not a static disease we have had to modify our routine accordingly.

We have seen her literally have to crawl out of bed and throughout the house

because her joints were too stiff and painful to move. There were many times

when her preschool teacher carried her around in nursery school, because she

couldn't get from one area to another.

Last May we began looking toward a new school year in [location]. We

arranged pupil placement for [name] at [name] Elementary School, because the

school was on one level and would at least alleviate the problem of stairs.

Still, we had concerns about her illness having an impact on her educational

performance. We felt in May, as we still do today, that our daughter's needs

could be well served by one of the special education programs the county has to

offer.

Our daughter is an intelligent child, but her strength and alertness

are unquestionably affected by her illness, because of the fact that she lives

with chronic pain and fatigue. Her mobility is limited, and her gait is awkward,

which sets her apart from her peers and is one more obstacle that she must

overcome throughout the day. While we, as her parents, have learned much about

her illness and how to manage it, we do not have all the answers. We have, for

example, let her bike for too long one day, and she has paid for her effort with

increased pain, stiffness and fatigue the next day.

When [name] has been ill with a flu or virus, we have had to stop

her medication while the illness runs its course, because the medicine upsets

her stomach. This lapse in medication exacerbates the arthritis, and we must

contend with the complications.

These are aspects of the illness that will need to be addressed in

the school setting. We admit that we do not know as much as the professionals

about the activities and prospective achievements of the classroom to monitor

her in this setting. This we feel was evidenced by a recent incident in school

when [name] was walking to the school bus with her class, tripped, fell and

broke her arm. We have now arranged for a patrol to walk her at her own pace to

the bus. We feel that had they been in place, the consultative services of the

county might have offered some guidance that could have possibly prevented this

unfortunate incident.

In closing, we would just like to emphasize the important role

physical therapy plays in [name's] life and the management of her arthritis. She

requires daily home range of motion exercises and on her physician's

recommendation physical therapy twice a week with a therapist outside the home.

When school began, due to scheduling problems, we were not able to meet with the

private therapist on a regular basis, and we have noticed increased difficulty

in her movements. Earlier this year, in a period of less than two months when

she did not receive therapy, she began to develop a flexion contracture in which

her knee was becoming " locked " in a bent position. Intensive therapy has almost

reversed this condition. Therapy is vital to her performance in every aspect of

daily living, and we feel that this is a need that should be addressed.

We are thankful for the resources that are available in the county,

and we would not have spent the past six months pursuing services if we did not

feel our daughter had a genuine need and right to them.

Sample Post-Evaluation Letter to Physical Therapist

Dear _____:

It was a pleasure meeting you during your evaluation of my daughter

on [date]. A number of concerns came to mind after our discussion about her case

that I thought might be worth mentioning in this letter.

I am familiar with some of the criteria for determining eligibility

and certainly the concept of educational impact of a handicapping condition. I

would like to clarify some points about her condition, her need for therapy and

how I feel they impact on her educational performance.

With juvenile rheumatoid arthritis (JRA), the main concern in the

overall management of her illness is to maintain mobility of the affected joints

to prevent permanent disability. [name] requires daily therapy to maintain

mobility of her affected joints. This therapy is an integral part of maintaining

her level of functioning. Because JRA is not a static illness, the therapy

program must be tailored to her needs as flares of the illness do and will

occur. [name's] level of functioning will always have an impact on her in her

ability to perform in the academic setting. She may experience pain that will

affect her concentration. Mobility will play a tremendous role in how she

maneuvers in the classroom setting. Certainly, in kindergarten, this will impact

on her socialization if she is set apart from her peers because of her awkward

gait.

As I am sure you noticed, [name] has trouble getting from a sitting

position to standing when on the floor. She could benefit from strengthening

exercises to assist her in using steps and in general activities of daily

living. While the therapists we are currently involved with are assisting with

certain areas of therapy, we feel that professionals, such as yourself in the

academic setting, can better target those specific areas that will provide for

her in the classroom and augment the continuous outside care she is receiving

both at school and privately.

[name] is a bright girl who deserves the opportunity to perform up

to her potential. We hope that you can assist in providing for her needs.

Sincerely,

Sample Letter to an Elementary School

Dear ______:

My daughter [name] will be entering your fourth grade class for the

[year] school year. She was diagnosed with juvenile rheumatoid arthritis (JRA)

in [year]. JRA is a chronic condition that, in [name's] 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.

[name] has been taking [medication] on a regular basis for the past

several years as part of her treatment. We have, for the first time,

discontinued this medication and have been using it only on an as-needed basis

throughout the past year. [name] has had minimal complaints (primarily

pain/stiffness in her lower extremities). However, as fall approaches, she may

experience increased symptoms of her illness. [name] is also followed by her

pediatric rheumatologist, ophthalmologist and pediatrician to monitor not only

the status of her disease, but also potential eye involvement. I try, as much as

possible, to schedule these visits outside the school day. Your understanding is

appreciated when this cannot be accomplished.

In addition to the joint complaints, in the past [name] has had

frequent urinary tract infections and persistent hematuria (blood in the urine).

These difficulties have often manifested themselves with increased fatigue and

irritability. I will keep you informed of any changes in [name's] condition, and

I also rely on her teachers to keep me informed of any difficulty she may

experience during the school day.

It is important for you to be aware of [name's] condition, but also

to know that she 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 [name's] condition and to

answer any questions that you may have. 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,

Sample Letter to High School or Middle School

TO ALL TEACHERS OF [student's name]:

My daughter [name] will be entering your [number] grade class for

the [year] school year. [name] was diagnosed with juvenile rheumatoid arthritis

(JRA) in [year]. JRA 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. Most of the time, there are few outward signs of her

disease.

[name] has been receiving gold injections for the past seven years

as part of her treatment. In addition, she receives physical therapy. [name] is

also followed by her pediatric rheumatologist, ophthalmologist and pediatrician

to monitor not only the status of her disease, but also 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 when this cannot be accomplished.

It is important for you to be aware of [name's] condition, but also

to know that she 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,