Individualized Education Program for Children with XLH

Mary Chapman avatar

by Mary Chapman |

Share this article:

Share article via email
sleep hygiene

X-linked hypophosphatemia (XLH) is a progressive inherited disorder that can affect children‘s proper bone development and result in fractures and other complications, including delayed growth and short stature. Your child may face difficulties at school because of his or her outward appearance. To reduce the disease’s impact on your child’s school performance and self-esteem, consider developing an individualized education program (IEP).

What is an IEP?

An IEP, authorized under the federal Individual With Disabilities Education Act, is a plan or program intended to ensure that a child with a disability, and who is attending an elementary or secondary school, receives specialized instruction and related services. The IEP is developed by a team of individuals from various educational disciplines working with your child, you, other family members and healthcare providers.

What are the elements of an IEP?

The IEP covers areas such as:

  • The involvement and progress of your child in the general curriculum
  • All related services for which your child qualifies
  • Appropriate educational accommodations necessary for your child to be successful at school
  • Your child’s current levels of academic performance
  • Measurable annual goals and objectives for the child’s education

What else should I do?

Going to school and interacting with peers is a key part of childhood. As a parent, you are your child’s greatest advocate, and you play a crucial role in shaping his or her experiences. Adopt a mindset of openness and be willing to actively listen. Empower your child to have a voice by encouraging an open dialogue about his or her experiences, which can help you understand what they are going through. That understanding can help with the development of an IEP.

Have an open discussion with your child’s school counselors, staff, and teachers to help them understand XLH and its challenges. Counselors and teachers should be able to provide support.

Also, ask your child’s physician about care they may need during the school day. Can your child easily walk between classes? Can he or she sit comfortably for the class period? Does he or she need an exemption from physical education classes? It’s important to anticipate as many circumstances as possible when establishing an IEP.

Your child may be entitled to a 504 plan, so-named because it was created as  Section 504 of the U.S. Rehabilitation Act of 1973. A 504 plan specifies  physical accommodations to help eligible children navigate school grounds and access classrooms and bathrooms. Among other things, a 504 plan can help you find an aide or qualify your child for special transportation.


Last updated: April 17, 2020


XLH News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.