It is important to have HIGH LEARNING EXPECTATIONS for children who have Ehlers-Danlos Syndrome. Encourage use of the core educational curriculum and modify it in order to meet the individual needs of the child.
What you need to know
There is no evidence that EDS in itself causes learning complications. However, premature birth is a complication associated with EDS and this may cause learning differences.
Individuals may have speech, visual, hearing problems. There also may be motor difficulties due to joint hypermobility.
What you can do
- Formal IQ and performance testing may be useful.
- If there are verbal performance discrepancies, make sure it is not because of motor difficulties
- Motor difficulties due to hand hypermobility can affect written test scores.
- May require alternative ways to assess performance or allow extra time
- Pair student with a note taker
- Use pencil grips
- Some individuals with Hypermobile EDS also find finger ring splints to be helpful.
- Provide two sets of textbooks: one for home and one for school
- Allow the use of an elevator and/or extra time to go to and from classrooms
- Provide a locker at eye level with a digital lock
- Offer priority seating
- Provide a cushion for sitting on the floor and for a chair seat
- Music can be helpful
- Select instruments to minimize stress to joints
- If POTS (postural orthostatic tachycardia) is present
- Provide extra fluids prior to rising from a rest period
- Allow frequent breaks as sitting for a long time in one position is difficult
- You may want additional information about your child’s disability, early intervention, school services, therapy, local policies, transportation, and much more. Every state in the USA has at least one Parent Training and Information Center (PTI) to offer families just this kind of information. To find your state’s center, go to the Center for Parent Information and Resources.