A definition of Juvenile Scleroderma in simple, easy to understand language


Your Child’s School and Educational Rights 

Parent-Child-Teacher Meeting

Consider this information as a starting point for a successful school year for your child. Each child has different limitations, if any at all. Regardless of the limitations it is still very important to communicate with your child’s school.

Teachers and other school personnel may have never heard of juvenile scleroderma. In order to properly care for your child, they should be educated about the disease. Careful education about the illness, information about the specific healthcare requirements, and added resources can help alleviate any anxiety or misunderstandings. Print out “What is JSD?” on our website to give as a handout to teachers and other school personnel.

A meeting with teachers and school administrators is often useful for educating school personnel concerning a child’s diagnosis and the potential ways that the child’s school performance might be impacted. A meeting should be requested even if specific school services are not requested. For example, it is helpful for the child’s teacher to understand that the child may have difficulty with writing if his/her hands are affected by the juvenile scleroderma. This may lead to slowness in completing their work. At times it may be helpful if you give permission for your child’s doctors to share information with the teachers and school personnel.

As the parent it is very important to not only communicate with the teacher and school personnel at the beginning of the school year, but all through the year as well. Your child may go through “ups” and “downs”. Because a child with juvenile scleroderma may be more susceptible to illness, you may want to request that the school nurse contacts you right away when the school is notified of an contagious illness, i.e. chickenpox. Throughout the school year your child may miss many days of school due to pediatric rheumatology appointments, physical and/or occupational therapy, counseling, and other health related medical appointments. There may be times too that your child may not feel well enough to go to school because of his/her juvenile scleroderma and/or their medications.

A parent-teacher-child meeting is strongly encouraged for children who need modifications in order to have a successful school year. Be sure to put in writing some of the modifications that all of you have come up with. Make a copy for the teacher to have on hand.

Some of the modifications may include:

  • Loop scissors, instead of regular scissors and big crayons
  • (this is good for kindergarten students)
  • Use of a soft grip pen and pencil, instead of standard pencil
  • A set of textbooks at home and a set of textbooks in the classroom
  • Extended time for classroom assignments or shortened classroom assignments
  • Additional time to complete homework assignments
  • Additional time to take tests, oral tests, or dictation of long writing test items to teacher
  • Short breaks between assignments
  • Early out pass for an extra 5 minutes to stand in a shorter line for lunch
  • Early out pass for an extra 5 minutes to get to lockers and report to the next class
  • Note taking support from teacher or peer

Your Child’s Educational Rights

Putting modifications in writing as discussed by the teacher and parent is great, but sometimes not enough if the modifications start to fall in the cracks. All children with a disability are covered under the Americans with Disabilities Act (ADA), which is intended to protect people with disabilities from discrimination.

A child with juvenile scleroderma may require either special services or adaptation of the school environment in order to function at his/her highest ability in the classroom. Federal legislation (Public 94-142) mandates that all children are entitled to a free and appropriate education. Children identified as having health conditions which may interfere with their educational process and/or school performance are eligible for an evaluation to determine if special services are needed to meet their unique needs. An Individual Educational Plan (IEP) can be requested by the parent. Once requested a multidisciplinary evaluation must take place, leading to a meeting at which the parents and educators discuss the evaluations and develop an IEP which fits the child’s specific needs with goals and objectives.

Most children with an IEP are eligible to stay in a regular classroom under the Least Restrictive Environment. The teacher can make modifications in the student’s classroom curriculum, including the modifications included above if necessary. Most students with juvenile scleroderma qualify for services under the category of “Other Health Impaired” and/or “Orthopedic Impairment.”

A small percentage of children with juvenile scleroderma may receive modifications through special education, under “Other Health Impaired.” if their juvenile scleroderma is impacting academic performance.

Other services that may be included in your child’s IEP if eligible are:

Adaptive P.E. – a modified version of P.E. that meets your child’s limitations.

Physical and/or Occupational Therapy – this is not physical or occupational therapy that your child would receive at a medical facility.

Assistive Technology – additional equipment or adaptions, i.e. a computer or special writing adaptions.

Nurse Monitoring – your child may need to take their medication at school and/or the nurse will know how to respond to your child’s medical needs at school.

School counseling – the school psychologist should be able to help the child with coping strategies. Children can become frustrated trying to keep up with school work due to absences. Their self-esteem can be lowered by teasing, and/or their appearance.

Remember -- as parents you are an essential part of the IEP Team.

The JSDN will be glad to help you write a letter to the teacher and/or school personnel regarding your child’s limitations and expectations. We would also gladly help you through the IEP process, including the referral letter to get the IEP started. The JSDN feels this is much better than coming up with sample letters because each child has their own limitations.

For more resources go to our Resource List – Under Education Resources

For more information on Juvenile Scleroderma, contact:

Juvenile Scleroderma Network, Inc.
1204 W. 13th Street, San Pedro, CA 90731

Tel: (310)519-9511 (Pacific Time)
24 Hour Support Line: 1-866-338-5892 (toll-free)

Speak to another JSD parent for emotional and logistical support provided by home-based JSD volunteers. For medical advice, please contact your child's physician.

Non-Medical Questions or Comments? Click Here
Medical Questions? The Doctor's In: Q & A

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