Navigating School for Our Kiddos
Beth Folcher is a parent and teacher. She joins us to kick off the school year with tips for parents of children with mitochondrial conditions so that we can be the best-informed advocates for our children.
Can you tell us about your son and your experience with rare disease?
My son was born in 2005 and was flagged at newborn screening for having long-chain 3-hydroxyacyl-CoA dehydrogenase (LCHAD). As a teacher and having experience with children who have complex medical conditions, I knew my son’s diagnosis may impact his learning. My son doesn’t have a learning deficiency, so he has remained in a typical classroom with some special accommodations. He’s now going into his junior year of high school.
What should parents be thinking about going into the school year?
If you have a child with a complex medical condition or diagnosis, get your documentation in place, contact the school and ask for a meeting to set up an IEP and/or 504 plan. An Individualized Education Plan (IEP) covers specialized instructions for students with a learning disability can make progress in the classroom. A 504 is a section of the rehabilitation act of 1973 which describes support guidelines for children with a physical or mental impairment. Both an IEP and a 504 plan are legally binding and must be followed by the school district. If your child needs an IEP, it is written first and the 504 plan is written within the IEP.
What do parents need to do throughout the year to maintain plan guidelines?
The most important thing is respectful, open communication and partnership between teachers and parents. In elementary school, there are more special snacks, birthday celebrations and field trips that need to be handled. When your child is younger and can’t advocate for themselves, there are no stupid questions, so don’t be afraid to reach out to teachers and school staff to ask. Give teachers some grace because when the school year begins, they are taking a lot in, learning a lot about each child and building relationships.
How can you best prepare a child who may need a school accommodation?
Prepare them to ask questions, communicate their needs and ask for help when they need it. To help them learn to advocate for themselves, you can place a sticker on their ID card that identifies they have an IEP or 504. You can arrange for a signal to communicate to the teachers when something is wrong. Involve your child in school meetings and discussions so they can be part of the discussions and understand the support and accommodations they have.
CONNECT WITH MITOACTION