As a parent and caregiver of a beautiful child with sickle cell disease (SCD), one of my biggest concerns is making sure that she gets a great quality education while managing her medical needs. School is one of the most crucial environments for growth, learning, and socializing, but for children with sickle cell disease, it can also present unique challenges.
I have learned a couple of things in these past years, and one of the most important is that the key to a successful school experience for my princess lies in education, awareness, and support from both the school staff and family.
Building a Supportive Environment
It is vital that school staff such as teachers, administrators, nurses, and support personnel are educated about sickle cell disease. Every school year, I provide the school staff – especially the school nurse and homeroom teacher – with books about SCD and information from the CDC. I always make sure that there is an open door for any questions, too. I believe that we are one team with one goal: to support my princess in the best way possible so she can be successful and safe.
Educating the staff about the nature of SCD, its symptoms, and potential triggers is crucial. Teachers need to be aware that a child with SCD may require more frequent breaks, might need to drink water throughout the day, and could sometimes appear tired or distracted because of pain. Understanding these needs can create a more empathetic and supportive classroom environment.
Additionally, teachers and staff should be trained to recognize the signs of a sickle cell crisis and understand how to respond. This is especially true for the school nurse since the nurse plays a huge role in managing the child’s health needs during the school day. When your child has SCD, the nurse should be aware of your child’s medication schedule, potential triggers, and the steps to take in case of an emergency. Regular check-ins with the nurse can help monitor your child’s well-being and ensure that their needs are met throughout the day.
The 504 Plan
One of the most important supportive tools for a child with SCD in school is a 504 plan. Section 504 of the Rehabilitation Act of 1973 provides for accommodations for students with disabilities, ensuring they have equal access to education.
The 504 plan has been a great blessing to my family. It includes accommodations such as:
- Access to water and bathroom breaks, ensuring the child can stay hydrated and comfortable during the day
- Extra time for assignments and tests, accounting for days when the child may not be able to focus due to pain or any uncomfortable situations
- Flexible attendance policies, because your child may need to miss school for medical appointments or during periods of illness
At the beginning of the school year, I recommend scheduling meetings with the school principal, homeroom teacher, school nurse, and school counselor. During these meetings, review all relevant information about your child’s SCD, present the previous 504 plan, and emphasize its importance. If you do not have a previous 504 plan, consider researching online or reaching out to a community-based organization for guidance. Being well-prepared for these meetings is crucial as you are advocating for your child’s needs.
These are just some of the many accommodations that help children with SCD to participate fully in their education and feel supported. At the end of the day, our goal is to set up our children for success.
Our children have the potential to succeed just like any other child. Focus on empowering them to reach their full potential. When children feel supported and understood, they are more likely to believe in themselves, even if they are facing challenges. Celebrate their achievements, no matter how small, and remind them that their illness does not define them.
Photo Credit: E+/Getty Images
Tell us what you think of this post
reactions
