Watch as experts talk about advocating for your child with migraine and setting them up for success in school.
Migraine is the second leading cause of disability in the world. 1 billion people are affected worldwide, including children. In fact, 1 in 10 children lives with migraine. Children—especially young children—often do not have the words to describe how they feel when they experience symptoms and/or attacks. The American Migraine Foundation (AMF) is here to support parents and caretakers in advocating for their children at school.
On July 25, AMF held the “Advocating for Your Child in School” webinar that discussed what you can do to prepare for the school year and advocate for your child. Hosted by Gina Hale, a special education advocate, and Dr. Barbara Nye, a board-certified neurologist and headache specialist, the webinar provided vital information on migraine in children, helpful resources, and what sorts of plans and strategies you can use, and more.
Parent and Student Rights
In the first part of the webinar, Gina discussed parent and student rights. Parents and caretakers are the only legal advocates for children in schools unless the child is represented by an attorney. School administrators and teachers are meant to be neutral parties.
Gina listed three civil rights laws that protect students with disabilities, including migraine, at school. Be sure to take note of these laws so that you know what your child is legally allowed to access and what their school must legally provide.
- Section 504 of the Rehabilitation Act (shortened to 504) defines the right to equal access to programs and benefits.
- The Americans with Disabilities Act (ADA) is a law that is meant to be interpreted broadly–any physical or mental impairment that substantially limits one or more major life activities, including learning.
- Individuals with Disabilities Education Act (IDEA) is the law that defines special education. It addresses a child’s unique needs resulting from that child’s disability and protects that child’s access to the general curriculum.
With the exception of ADA, these laws come in the form of “plans” that you can discuss with your child’s school. Each plan has different standards and features, so thoroughly review them when determining which plan is best for your child.
This plan begins with a request for evaluation. An interdisciplinary team at the school then gathers data to decide if a child is eligible for the plan before addressing individual needs. Though parents do not have to be invited to participate in these meetings and planning processes, many schools are still happy to invite parents for their input. Additionally, the school is required to notify parents if their child is being assessed and if the 504 has been created.
Parents have a right to view all records, can ask for adjustments, and can disagree with the plan. The plan is based on an evaluation and can include special education. Schools will use these plans for accommodations and modifications, as they are easily adjustable, but rarely for services (e.g. nursing) due to the expenses required.
Individual Education Program (IEP)
This program also begins with a request for evaluation. It also has a team that addresses individual needs. In the case of IEPs, parents are required to be included in the plan-making process. In addition, this program includes specially designed instruction and accommodations, modifications, and services. However, IEPs are more rigid compared to the 504 Plan.
Gina also emphasized to always maintain a paper trail. She encouraged parents to not sign anything until everything has been thoroughly reviewed. Additionally, it is important to take an assertive approach when the school does not appear to be prioritizing your child’s needs. This is especially the case with IEPs due to their very specific guidelines for responses. Once a request is made, schools are legally required to respond within a certain number of days. Submit your request for a meeting by the first week of school, and have your meeting scheduled by the end of September or beginning of October so that you can get the services your child needs on time.
If your child’s school is taking too long with the process, don’t hesitate to contact them through phone or email to keep the process moving. Some clinics have education consultants and social workers who help parents communicate with their child’s school, especially when the school is not responsive.
Addressing Common Issues of Migraine at School
The webinar also addressed some common issues that happen to children at school. Stigma was a concern that was brought up. Migraine is an “invisible disease,” which means that the symptoms are not as obviously seen compared to some other diseases. Many have the misconception that a migraine is “just a headache,” and this can sometimes cause migraine not to be taken seriously. Dr. Nye offered a solution to combating stigma—educating the administrators, staff, faculty, and school nurses.
“I encourage folks to engage with the education of staff and nurses,” says Dr. Nye. Speak to your doctor or specialist if they can offer information about your child’s migraine and the disease as a whole. Whether it is through an in-person education session or a letter, many medical professionals are ready to help you and your child.
There were also concerns about attendance, which is important to a child’s enrollment and social activities. Schools should take measures to provide easy access to migraine treatment and relief so that children don’t have to go home every time an attack strikes. Migraine is a debilitating disease, but it is important to remember that it does not have to interfere with a child’s experience at school, such as learning new lessons, socializing with peers, and partaking in extracurricular activities. Attending school also provides a distraction from the child’s pain, which is a powerful therapeutic technique that can help to reduce the severity of the pain.
“Children are getting something out of school, even if they’re not at 100%,” Dr. Nye explains, addressing the importance of attendance. “Even if they’re a bit fuzzy…or have that brain fog, there is some information filtering through. And so, it’s important to make a safe space they can go to, access their medication, have time for the medication to work, but also have the expectation of returning to the classroom.”
What else can I do?
You can also take procedural safeguards to ensure your child has the best experience possible at school. This includes things like establishing a regular sleep and meal schedule, self-care routines and tactics, and making sure that they have strategies to cope with stress and anxiety. You should also teach your child how to take care of themselves and manage their migraine symptoms, as they will eventually have to do that themselves when they reach adulthood.
Most importantly, remember that you are vital to advocating for your children and their conditions at school. Childhood and adolescence are critical periods of development. There are already many challenges that children and teenagers go through, and living with migraine is an added challenge. But with the right resources and advocacy, you can minimize their symptoms, provide them a fulfilling experience at school and inspire them on how to advocate for themselves and function with migraine in the future.
The American Migraine Foundation is committed to improving the lives of those living with this debilitating disease. For more of the latest news and information on migraine, visit the AMF Resource Library or Pediatric Migraine Content Hub. For help finding a healthcare provider, check out our Find a Doctor tool. Together, we are as relentless as migraine.