Advocating for Special Education Needs

Beyond managing medical appointments and supporting your child’s emotional well-being, advocating for their educational needs is essential. Cancer treatments can bring cognitive and physical challenges, such as fatigue, pain, or long-term effects like memory or processing issues. These needs may extend beyond what’s offered in a traditional classroom. Understanding this can help ensure your child receives the support they need to reach their full potential and succeed in school.

Here are some common educational needs for childhood cancer survivors:

Cognitive Support:

  • Memory and Attention: Survivors may experience difficulties with short-term memory, working memory, and sustaining attention. Accommodations like extended test time, frequent breaks, or memory aids can help.
  • Processing Speed: Cognitive processing may slow, affecting their ability to complete tasks quickly. Extra time for assignments and tests, as well as simplified instructions, are often helpful.
  • Learning Disabilities: Survivors may struggle with reading, writing, or math and could benefit from specialized tutoring or modified assignments.

Physical Accommodations:

  • Fatigue and Physical Limitations: Treatment often leads to fatigue or physical limitations. Flexible schedules, reduced physical activity requirements, or rest periods during the school day can be helpful.
  • Mobility Issues: Some survivors may face mobility challenges or require assistive devices. Schools can provide accessible classrooms, modified seating arrangements, or assistive technology.

Emotional and Behavioral Support:

  • Emotional Health: Children may experience anxiety, depression, or other emotional issues. Access to school counseling services, mental health support, and a safe space to express their feelings can be beneficial.
  • Behavioral Challenges: Changes in behavior or social difficulties may occur. Behavioral support plans and social skills training can be key to managing these challenges.

Steps to Advocate for Your Child’s Educational Needs:

  • Know Your Rights: Familiarize yourself with laws such as the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act, which ensure that students with disabilities, including those impacted by cancer treatment, receive necessary accommodations and support for success.
  • Open Communication with School Officials: Build a strong relationship with teachers and administrators by sharing your child’s medical condition and its impact on learning. Remember to provide regular updates. Hospital educators are also a great resource in bridging the gap between your child’s school and their medical team.
  • Request an Evaluation: If you believe your child’s learning has been affected, request an evaluation from the school to determine eligibility for an Individualized Education Plan (IEP) or a 504 Plan. Both plans can provide necessary accommodations to support your child’s learning.
  • Document Everything: Keep detailed records of your child’s condition, treatment, and communications with the school, especially if any accommodations or modifications are made and their effectiveness. This documentation can help address any challenges that arise.
  • Stay Persistent: Advocating for your child is an ongoing process. Remember, persistence is key! Stay committed to ensuring they receive the support they deserve.

Amaya’s Story

meet amayaNine-year-old Amaya was diagnosed with leukemia in June 2023. With the help of her hospital’s social worker and educator, her classmates received a kid-friendly lesson on leukemia and her treatment. Amaya’s mom, Trisha, said, “This made her classmates aware of what she goes through, why she has different accommodations, and why she may show physical symptoms like losing her hair. I didn’t want her to be isolated or treated differently just because she was ‘the sick kid.’”

As treatment became more intense, attending school in person was no longer possible, so Amaya began online tutoring. The tutor worked at her pace, helping her stay on track with school. Trisha explained, “The 504 plan includes ‘must-have’ recommendations from her doctor, but I added my own list of needs. Every child is different, and as a parent, I knew her specific needs.”

Trisha’s advice to other parents: “Stay in constant communication with the school, take each day one at a time, and don’t be afraid to push for what your child needs. I also highly recommend a classroom presentation if your child is comfortable—it’s helped us in so many ways.”

As you navigate the complexities of your child’s cancer treatment, advocating for their educational needs is a crucial part of their overall well-being and success. By understanding your child’s rights, communicating effectively with the school, and utilizing available resources, you can help ensure that your child receives the support they need to excel. Your support can make a significant difference in your child’s educational experience.

The National Children’s Cancer Society offers an updated list of special education departments in each state. To find your state’s Department of Education, click here.