The Six People You Need to Chat With Before Your Rare Kid Goes Back to School

August 19, 2015

Growing up, my teachers and school staff had mixed feelings about how to handle my disease. Did they push or pull back? Were they supposed to keep me accountable for things like absences, long bathroom breaks, or snacking during class? Who was supposed to aid me when I became too sick to get through a day of school? Fortunately for me, my mom was a strong advocate and made sure my education became a do-able reality.

As you approach this new school year, start off on the right foot by speaking with these people who will soon serve as important team members in your child’s life.


The Teacher


This can be one teacher if your child is in elementary or middle school–or multiple teachers if your child is in high school. (In which case they may want to speak with their teachers themselves.) You’ll want to have the teacher fully informed about your child’s condition and what they might need to know to help that student avoid unwanted attention (being allowed to leave class without raising their hand, being allowed water or snacks to be eaten quietly, etc.) or simply introducing that teacher to your child’s individual education plan. The teacher might also help you to help other students to understand your child’s disease–if you decide to share it — that is.

The School Nurse


Many schools have strict rules about medication leaving the nurse’s office. However, there are many medications that must always be on hand to help reverse an unexpected medical issue. Make sure to have a conversation with the school’s nurse to discuss how to proceed with your child’s medication during school hours.

The Principal


Who knows what the next four years will bring? If at all possible, schedule a visit with the school’s principle and administrative staff. Give them a run down of your child’s condition and see what exceptions can be made in the future in case things take a turn for the worse. While teacher’s may not have the authority to help, the principal can make allowances for things like absences.

The Bus Driver


Whether your child is riding on the school bus or a handicap accessible bus, make sure the bus driver (or the chaperone, if there is one) knows what an emergency looks like for your child. Give them your contact information and a list of any other information they might need.

The PE Teacher


We all know they’re tough, but you have to give them an idea of your child’s realistic capacity for sports. Make sure the gym teacher never pushes your child further than they can handle. Give them the warning signs of fatigue, injury or sudden-onset illness. This helps both to protect your child from pain–but also to spare them embarrassment in front of their peers.

The Guidance Counselor


Your child’s guidance counselor will be an important contact for you over the school year. Make sure they’re checking in on your child’s progress, report any issues with other teachers with them, and allow them to be your first line of defense when it comes to your child’s education and extended hospitalizations.


Who is your first parent conference with?

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