Teachers can be great allies in keeping your child with metachromatic leukodystrophy safe and successful in school, but you'll need to make sure they have all the knowledge they need to help. I talked with Teryn Suhr, executive director of the MLD Foundation, about what teachers need to know about kids with MLD. Pick the suggestions that are appropriate for you child, and use them to create a information packet to bring educators up to speed.
1. My child's behavior may appear similar to ADD/ADHD, but the hyperactivity, attention, and impulse-control problems you see are related to his medical condition and will not respond to normal behavior techniques. Please contact me for help in interpreting behavior before attempting to address it.
2. If my child seems stuck on or frustrated with something, move on to something new. She will do best if allowed to learn at her own pace.
3. Though my child's condition may seem severe, please know that he is cognitively aware, and take care that what you say and do in his presence is appropriate.
4. Over and above whatever academic work she may be able to do, my child gets enormous benefit from being in school with her peers. Please help her to interact and form relationships with her classmates.
5. 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.
6. My child may have a seizure while in your classroom. Please be in touch with the school nurse to review procedures for dealing with them.
7. My child has a serious health condition, but she is still a child with ordinary interests and hope and dreams. Please help us keep her life as normal as possible.
8. Please keep the lines of communication open between our home and the school. My child needs all the adults in her life working together.
Printouts to Share with Teachers
MLD-101
Source: The MLD Foundation
Metachromatic Leukodystrophy
Source: United Leukodystrophy Foundation
Metachromatic Leukodystrophy
Source: Bethany's Hope Foundation
MLD and Transplant
Source: Be the Match
What to Do During a Seizure
Source: Epilepsy Classroom
