Here are some common questions from parents.
Are there tools to help parents arrange accommodations for their children at school?
Proper planning involves discussing any accommodations your child may need to be successful. Available tools include include:
- An Individualized Education Plan (IEP) is a written education plan designed to meet a child’s specific learning needs.
- A 504 Plan will ensure under law that a child is entitled to accommodations which will create an environment in which a child can succeed.
- An Individualized Health Plan (IHP) outlines the healthcare services a student needs during the school day.
- An Emergency Care Plan (ECP) contains information about the student’s condition and provides contact information for family, physicians, hospitals, and an ambulance service in case of a medical emergency.
What do other parents find helpful?
Tips for Success include:
- Having a second set of books at home
- Encouraging flexible sitting or standing time, child may need a cushion
- Keeping open the lines of communication with the school
- Addressing bullying with your child and their teacher
- Checking table and desk heights for comfort
- Requesting extra time for written assignments
- Allowing the use of a water bottle to prevent dehydration
Teaching your child how to be their own advocate
How early do we need to address issues in school?
Children with Marfan or a related condition can sometimes benefit from an early intervention program. These programs receive state money and if it is determined at evaluation that that there is a need, then the inventions are available at little or no cost to the family.
Early intervention programs offer a variety of therapeutic and supportive services which are geared toward ameliorating each child’s special circumstance. To determine if your child would benefit from or is eligible for this resource, check with your state’s Early Intervention Program.