WHAT DOES CHIARI MEAN FOR SCHOOL ADMINISTRATORS & A CHILD'S EDUCATION?
Many parents have questions about how Chiari malformation, syringomyelia, EDS and other related disorders might affect their child's experiences at school. Along with several partners, CSF created Chiari@School to help parents navigate the educational system and ensure that their child never falls behind all while having a more positive learning experience!
Chiari@School will provide information on IEP/504 plans, tips from other parents, and hand-outs for educators and classmates. All materials will be developed or curated by individuals qualified in relevant fields, including school nurses, educators, lawyers and medical professionals.
DON'T SEE WHAT YOU NEED HERE?
Make sure to check back-- we will be updating Chiari@School with relevant materials periodically. Want to see something specific? Let us know what you need and we will try to find the experts needed to provide resources you're looking for!
Chiari and syringomyelia are not fun-- and they can be hard on kids who can't always play with their friends or are having trouble keeping up at school between doctors appointments, recovery and more. Watch our friend Erin talk about what she went through, how she handled school after her big surgery and how she made some friends along the way!:
chiari malformation & cognition... IS YOUR CHILD STRUGGLING?
Most experts once thought that Chiari malformation only affected people through physical symptoms like headaches, nausea and much more. In the past decade or so, however, many of the thought leaders have started collecting scientific evidence that Chiari may cause significant problems with cognition ("brain fog", poor memory) and mood (irritability). This idea is gaining such traction, that CSF recently hosted a Research Colloquium on the topic and the presentations are all available to watch online!
For an intro to Chiari & cognition, watch... Dr. Petra Klinge discussing a pediatric Chiari patient who had some trouble focusing at school who saw her reading and math skills improve after decompression surgery:
For the more advanced stuff, read... (Coming in 2017) Proceedings of the 2016 CSF Research Colloquium (book)
OTHER CONSIDERATIONS FOR SCHOOL
Sometimes, your child needs a little help to stay on top of their education or some more direction in their activities and schoolwork. But finding help should never be like pulling teeth! Below are some helpful resources to get you started on finding help with IEPs and 504s as well as "return to school" recommendations to talk about with your child's doctor!
Return to School and Physical Education. Your child's doctor may have some specific instructions after a surgery. If you're feeling uneasy, print out this handy sheet from the American Academy of Pediatrics and talk through it with your child's doctor to find out what they can or maybe can not do. Everyone is different and no two of these checklists will look the same!
Individuals with Disabilities Education Act (IDEA) Parent Guide. This is a super comprehensive guide that explains how the law works in most states, how to determine whether your child has a disability, what is new with the law since its update in 2004, what questions you need to ask to advocate for your child, and what other resources are available.