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Your child's school

Educate the school

Your child deserves the opportunity to succeed in school. Proper planning will ensure your child has this same opportunity. Important to this planning is the education of any school personnel who will be involved with your child. The Marfan Foundation website has several guides which can be helpful: Need to Know Information for the Teacher and Need to know Information for the School Nurse. We recommend sitting down with their teacher and school nurse to review these guides and to point out any special needs specific to your child.

It is important to remember that Marfan or related disorders does not affect intelligence. There are some features such as poor vision, impaired motor skills and fatigue which can affect a child’s school performance. Ongoing conversations with the physical education teacher and coaches will be necessary to ensure they are aware of your child’s changing physical limitations.

Proper planning involves discussing any accommodations your child may need to be successful. Some of these accommodations may 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.

More information about these plans can be found in the Teacher and School Nurse resource guides mentioned above.

How can parents advocate for their child in school?

How did you work with your child's school?

What is an IEP or 504 Plan?

Tips for Success

  • Have a second set of books at home
  • Encourage flexible sitting or standing time, child may need a cushion
  • Keep open the lines of communication with the school
  • Address bullying with your child and their teacher
  • Check table and desk heights for comfort
  • Request extra time for written assignments
  • Allow use of water bottles to prevent dehydration
  • Teach your child how to be their own self-advocate

Early Intervention

Children with Marfan or related disorders 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.