By Annaben Kazemi
Having a daughter with a primary immune deficiency (PIDD) sometimes makes it hard to think beyond the next treatment. While Arianna’s health is the first priority, her education also is important. Arianna has always been a high achiever and takes great pride in her academics. However, since starting high school, we’ve found the balancing act between academics and treatment even more of a challenge.
In middle school, the 504 Plan (the federal statute that specifies the accommodations necessary for a student to successfully navigate school) was sufficient for Arianna to keep up. High school, however, has been a big transition. In the larger high school environment, Arianna is exposed to more illnesses and, consequently, she misses many school days. Most teachers are willing to work with us to help plan the workload, and the more notice we give them, the easier it is to come up with a flexible solution. Yet, some things are non-negotiable, and Arianna began finding it difficult to keep up. Her stress level increased, compounding the problem of trying to stay healthy. After a few months, we found it necessary to set a reduced schedule and modify due dates for papers and tests. We knew something would have to change; we needed more support than the 504 Plan could offer.
We talked to Arianna’s doctor about how much school she was missing. He wrote a brief letter stating how her PIDD could affect attendance at school and how her treatment might interfere with concentrating, doing homework and meeting deadlines. Then we talked to the school staff and obtained an Individualized Education Plan (IEP), which allowed us to legally enforce the customized goals and learning strategies created by the IEP team (her teachers, school specialists and counselor). Based on the Individuals with Disabilities Education Act, Arianna qualified for additional support services through her public school district. Having this IEP has enabled Arianna to receive free support services (such as an independent studies teacher who supervises the school workload, acts as liaison between the high school and us, and tutors Arianna so that she can reach her educational goals).
With a little planning and a lot of communication and advocacy, we’ve found it is possible to reach a solution in our quest for a balance between academics and Arianna’s health. Having the ability to work from home, as needed, allows Arianna a safety net. It creates time for the rest she needs to be successful academically. Her stress is reduced, and she can now go at her own pace and doesn’t have to worry about infusion side effects or another chronic infection interfering with her deadlines. I help Arianna set a daily schedule so that she can stay on top of schoolwork as much as possible. While I support her plans of returning to school, I am thankful for the reprieve and support an IEP has given us. Under federal law, students with chronic or life-threatening illness and/or disabilities are entitled to educational support. IEPs and 504 Plans can be requested by you or anyone on your child's education team. Each family situation is unique and ever-evolving. This is what worked for us.
How have you navigated the school system with your child? What has made the process easier? Are there any tips you could share with other parents struggling to find a balance between school and illness?