Children with cystinosis want the same opportunities as any other child at school. They want to learn how to read, play at recess, and discover the joy of friendships. But sometimes the challenges of living with cystinosis can get in the way. Below are a few tips to help you work with teachers and school staff. This way you can make sure cystinosis doesn't get in the way of your child's school experience.
Dealing with absences
Cystinosis may cause your child to miss school. The major reasons for absences may be:
Missing sleep because of medicine schedules
If you know your child is going to be absent, be sure to tell the school and your child's teacher in advance. You can even make a missed-school plan with your child's teacher. This can help your child keep up with classwork during absences.
Speaking about cystinosis at school
Helping peers understand cystinosis can make a big difference for your child. You, your child, or the school nurse may want to speak to teachers and students at the start of the school year to explain cystinosis to them.
Finding an advocate at school
Ask your child's teacher to help find a point person who can be your child's advocate at school. A point person is someone who can answer questions and handle problems. A counselor, nurse, or teacher are all good options.
School day checklist for cystinosis
This checklist contains helpful tips for making life more manageable for your child at school. Work with your child's school to complete this checklist.
Create a plan for managing your child's medicine at school
Consider doing the following:
Review medicine schedules with teachers and the school nurse. Create a plan that allows your child to get his or her medicine when it's needed
Keep a supply of medicines at school with the nurse as needed
Create an emergency medical plan with the school and your child's doctor
Identify a staff member to be your child's go-to advocate at school
Work with someone on the school staff who knows your child well. This person can help answer and tackle any problems or concerns. A counselor, nurse, or teacher are all good options
Ask your child's teacher to make special arrangements to make the classroom more comfortable for your child
Consider asking if your child can:
Chew gum or have mints to help mask the breath and body odor caused by medicine
Carry a water bottle to stay hydrated
Go to the bathroom as needed
Wear sunglasses indoors and/or sit away from the sunlight
Go to the school nurse to rest if tired
Eat snacks during class to deal with low energy levels
Keep an extra set of clothes with the school nurse in case of accidents
Work with the school to create a plan for keeping up with schoolwork
You might want to:
Create a plan for handling absences and how to help your child keep up with classwork
Ask your child's teachers if they can provide your child with extra time for tests and quizzes