Preparing the School for Your Child with Ehlers-Danlos Syndrome

Teacher with Parents
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Teachers can be great allies in keeping your child with Ehlers-Danlos Syndrome safe and successful in school, but you'll need to make sure they have all the knowledge they need to help. Use these suggestions to create an information packet to bring educators up to speed.

Five Things Teachers Need to Know

1. My child's joints and skin can be easily damaged. Some physical activities may be too dangerous for him, and even fine-motor activities like writing can quickly become tiring.

Please accommodate these needs and be alert to possible dangers.

2. My child may have some learning problems due to frequent absences. Please work with us to help her keep up on assignments at home.

3. It is very difficult for my child to hold many heavy books. Please provide us with a set of books for home, and if it's necessary to carry books between classes, assign my child a buddy to help.

4. It's okay to let my child's classmates know about his condition as long as it is done in an appropriate way. I'd be happy to help prepare a program.

5. Please keep the lines of communication open between our home and the school. My child needs all the adults in her life working together.

Print-Outs to Share with Teachers

"My Muscles Feel Heavy": How Children Describe Ehlers-Danlos
Source: Joint Pain Relief

Article From SEN About EDS
Source: Ehlers-Danlos Support Group

How to use this material
More teacher information

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