Ideally, school is a challenging environment where students have the opportunity to expand their knowledge, experiences and relationships. For survivors, it can also be one of few places where they feel they are still able to exert control.
"Attending school has been the only stability I have had in the past couple of years. Going to class, studying and excelling in my academic studies is really the only control I felt I had in my life." Cayce, 20
However, extended or frequent absences from school related to a brain tumor diagnosis and treatment are common for survivors and can make the rigors of academic work much more challenging and even overwhelming.
"I missed 66 days of school in eighth grade, 41 days in ninth grade, 66 days in 10th grade and 14 days in 11th grade. I still managed to stay caught up in school even though I have missed 187 school days since the eighth grade, which is like I missed one whole school year." Gary, 17
Many survivors report feelings of frustration over not being able to "keep up" with their peers as they had before diagnosis or over having to spend much more time on their schoolwork in order to "stay afloat." Read more...
In addition to the general challenges of trying to make up missed work due to absences and being overwhelmed by the academic workload, brain tumor survivors are also particularly susceptible to cognitive and learning challenges because the involvement of the central nervous system, whether by the cancer itself or by the treatment used to battle it, increases the risk of cognitive late effects. Learning about your rights regarding specialized educational services can help you and your family get the support you need by knowing what you are entitled to. Keep in mind, though, that although federal laws are applicable nationwide, the guidelines adopted by any particular state or school district for home instruction and in-school support services vary widely. Furthermore, individual schools and districts differ greatly in their ability and/or willingness to help survivors receive the maximum benefit from services. For this reason, it is important to contact a local advocacy and support agency that knows about the laws and guidelines in your area so that you can better advocate for yourself.
For information about the advocacy agency for your area, click here.
We have also assembled a summary of federal special education laws, some examples of accommodations you could request at school and some websites that have detailed information about this topic and about IEPs (Individualized Education Plans).