One Parent’s Guide to Navigating Migraine
In December of 2015, Ava had an accident at school that altered her trajectory, permanently. She was rehearsing a scene in her musical theater class when she slipped, fell and hit her head.
I mention trajectory because it is important, it is the direction in which we are heading. For Ava, she was heading into her last year of junior high with an opportunity to be in musical theater. She had classes she enjoyed, participated weekly with her church youth group and had a social life that suited her. Her 9th grade experiences were going to open even more doors for her in high school, as long as she stayed the course.
That accident resulted in a concussion. After more than three months, Ava was still in constant pain, had visual/auditory sensitivity, nausea and other problems. Her neurologist revised her diagnosis to chronic pain and told her to see a psychiatrist. Her psychiatrist, while helping with the chronic pain, recommended she see a headache specialist to perhaps find treatment for her symptoms. Then, her headache specialist diagnosed her with Migraine Disease.
No one-size-fits-all
According to the American Migraine Foundation, 1 in 11 children have migraine disease. Those children are twice as likely to be absent from school. Migraine is not “just a headache” or something that you can power through, it is a neurological disorder. This disease takes many forms, can have an abundance of symptoms and triggers and is different for most everyone, there is not a one-size-fits-all. A single migraine can last from a few hours to several days and even longer.
Making Our Plan
From the onset, Ava’s chronic migraines made it impossible to make it through an entire day at school. Due to her light/sound sensitivity, she could no longer attend musical theater, watch TV, go to a movie, attend church or even read a book. Her trajectory had quickly changed course.
In the beginning, Ava’s teachers and the administration were sympathetic. As time moved on she continued to have sporadic attendance, had to check out early and was unable to stay up on her assignments. I was constantly emailing her teachers and calling the school to ask for assistance. We were fighting a losing battle. With help from her doctors, Ava and I came up with a plan that we felt would enable her to complete her work and still take care of herself.
The plan was built around a 504 Accommodation, a safety net to help students with disabilities. We had letters from Ava’s psychiatrist and headache specialist that explained the need for the 504 and offered suggestions for specific accommodations. These are common documents for common issues, unfortunately Migraine Disease is not one, which meant it was up to me to sell it to the school.
I made a formal appointment with the School Director to discuss our requests and to work out the details in person. Due to the lack of precedence, the meeting did not go smoothly. The school agreed to some accommodations: teachers would modify assignments, allow extended time for assignments and tests, would allow F41 glasses in school, have water accessible, would provide a dark room for breaks and allow testing in a quiet room. I was to be responsible for: all communication with each of her teachers and making sure all homework was brought home and turned in on time. Since Ava was not able to keep up in math, I was told to purchase a math program (free to others) to do from home, without teacher guidance. The meeting concluded with us acquiring some accommodations and I assumed a greater portion of responsibility. I left with mixed feelings.
Advocating for Ava
Having received the minimum in accommodations, it did not take long to realize we needed many more. We were nearing the end of the 3rd quarter and Ava had more missing than turned in work. I was organized and efficient in my efforts, but the school did not have any coordination among the teachers or the administration. I was trying to work with 8 independent parts. It was not sustainable. I called the school administration multiple times for assistance, to no avail. The school basically told us she was going to fail and I told them that was unacceptable.
Having worked with Ava as she attempted to complete her assignments, I learned what her challenges were. I researched 504s and scheduled another meeting with the Director. This time she greeted me, flanked by two other administrators and I greeted them with Ava by my side. I brought her to remind everyone why we were there. We were here to help this bright, motivated student who now has a disability and who deserves an education.
We reviewed the old plan and the lack of efficacy, discussed some new accommodations and attempted to tweak the current ones. The pushback was significant. The school was concerned that we would be forging a path for new precedence. This could overburden teachers as well as establish protocol that they feared would have every student, with a mere headache, requesting these accommodations. I was undeterred in my resolve to get Ava what she needed and deserved but could not reason with them. Out of desperation, I played the card I did not want to play, I reminded them that Ava’s situation began with an accident at school, their school. The uncomfortable glances between them only strengthened my fortitude. I approached the rest of the meeting with boldness as I gave them the list of accommodations Ava required.
Win for All
With the new accommodations, Ava was able to complete 9th grade. It required changing the traditional school setting to one at home. Class was held whenever she felt up to it and for however long she could bear it. I was her reader, scribe and tutor. Assignments were reduced down to basic concepts with quizzes/tests given orally if necessary. The school assigned a counselor to coordinate with all of her teachers, collecting all assignments. Once a week she would come to our home to meet with Ava, explain the work, answer questions and return completed work to school. This new system unified and streamlined our efforts and most importantly, it benefited everyone.
Showing the school what she was capable of, given the proper support and accommodation, Ava helped them appreciate the necessity for accommodations for those who do not fit into a common box. Though her work was modified, Ava worked harder than most students to receive her education that year, trajectory altered but restored.