Ehlers-Danlos syndrome (EDS) is a genetic disorder that affects the way that a person’s body produces collagen, so it affects their skin, bones and organs. Children who have this disorder often suffer from problems related to the hypermobility of their joints, including dislocations, subluxations and chronic pain.
They may also suffer from severe fatigue, muscle weakness, easy bruising and a host of related symptoms that affect their energy levels, ability to concentrate and mobility. They may also have comorbid conditions like gastrointestinal complaints that create additional challenges.
How can an Individual Education Plan (IEP) help a child with EDS?
Many people think of an IEP as something that is solely designed for learning disorders, but IEPs can also address physical issues that interfere with learning. Some of the accommodations that may need to be considered include:
- Physical accommodations such as ergonomic seating, modified physical education activities and extra time to move between classes to prevent fatigue
- Assistive technology devices to help with writing, note-taking or accessing digital materials without straining the joints in their fingers and hands
- Modified curriculum or alternative assignments to accommodate extra absences or periodic limitations related to their pain and fatigue
- Access to support services such as occupational therapy, physical therapy or counseling to address the emotional and social aspects of living with their illness and limitations
- Flexible scheduling options or the ability to make up work to accommodate medical appointments or periods of increased symptom severity
An IEP is a dynamic document that should be regularly reviewed and revised as your student’s needs evolve. Parents and educators need to maintain open lines of communication to ensure that the IEP remains relevant and effective when it comes to supporting the student’s academic and personal growth. Legal guidance can help you overcome resistance to your child’s IEP needs.