basics of chiari-related diseases:

CHIARI, SYRINGOMYELIA & RELATED DISORDERS AT SCHOOL

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 experience at school. Along with several partners, Bobby Jones 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 yet?

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 find the experts necessary to provide the resources you’re looking for!

FIRST OFF, LET’S REVIEW: WHAT ARE THESE DISORDERS?

What is Chiari malformation?
What is syringomyelia?
What is Ehlers-Danlos syndrome (EDS)?
What are some other related disorders?

WHAT DO THESE KIDS GO THROUGH?

Chiari and syringomyelia are not fun– and they can be especially 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 AND COGNITION: IS YOUR CHILD STRUGGLING?

It was once thought that Chiari malformation only presented with physical symptoms like headaches, nausea and more. But in the past decade or so, many thought leaders in this field 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, in fact, that Bobby Jones CSF previously hosted one of its annual fall Research Colloquia on the topic. The presentations from this meeting are all available to watch online.

You can also check out other cognition-related presentations from experts from our Physician Lecture Series.

Want a quick intro to Chiari and cognition?

Dr. Petra Klinge gave a brief presentation on one of her Chiari patients success stories. Her patient had been having trouble focusing at school, and actually saw her reading and math skills improve after Chiari decompression surgery!

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.

Guide to the Individualized Education Program (IEP). This is a great “IEP 101” for parents looking for guidance!

Building the Legacy: IDEA 2004 Update. This information from the U.S. Dept of Education has lots of content about updates in the law and best practices for IEPs.

Section 504: Protecting Students with Disabilities. The Dept of Education also has some materials and FAQ on Section 504 of the Rehabilitation Act of 1973 (since amended), which is meant to protect students with disabilities.

Other Helpful Links

*Please note, that these are external links that are not regularly checked by Bobby Jones CSF.

 

 

Updated 9/2019