If your child has sickle cell disease, talking to their teacher is very important. It helps make sure your child gets the support they need at school, which will improve their learning and general wellbeing.
Here’s how you can have this important conversation in a way that’s clear and helpful.
Get Ready for the Talk
Before you meet with the teacher, prepare some information about sickle cell disease. This will help you explain it more clearly and answer any questions the teacher might have.
Make sure you know the basics of sickle cell disease and its symptoms. You should also be prepared to talk about how those symptoms affect your child’s school day, like missing school more often than most kids or needing breaks.
Set up a Meeting
Ask the teacher for a meeting where you can talk privately. Choose a time when the teacher isn’t too busy. It’s best to do this at the start of the school year or as soon as possible, so the teacher understands your child’s needs early on.
Explain Your Child’s Condition
When you meet with the teacher, describe sickle cell disease in a simple way. Explain what the disease is and that it’s genetic, which means no one can catch it from your child.
You should also explain your child’s particular symptoms. Not everyone’s SCD looks exactly the same, and what’s important is how your child is affected.
Then you can explain how those symptoms might affect your child at school.
Talk about Special Needs
Because of their condition, your child might need special accommodations to succeed in school. It’s important that the teacher understands what this means and how they can help. Also make sure that they understand how to explain these accommodations to other kids who may have questions (in a way that your child feels comfortable with).
Some examples of what you should talk about include:
- Attendance: Plan how to handle days when your child might be absent because of their health.
- Physical activity: Talk about what activities might need to be changed or adjusted, like gym class.
- Schoolwork: See if there are ways to adjust homework or test conditions if your child’s health makes it hard for them to complete work.
Share an Emergency Plan
Give the teacher a plan for what to do if your child has a sickle cell crisis or another health issue at school. This will help your child’s wellbeing and help the teacher feel more comfortable if an issue does come up.
Include:
- Signs of a crisis: How to tell if your child is having a problem.
- What to do: Steps to take, including who to call for help.
- Contact information: Your phone number, your child’s doctor’s number, and any other important contacts.
Provide Helpful Information
Sharing informative and accessible resources can help your child’s teacher better understand sickle cell disease, as well as how they can support your child. Here are some good resources you might consider sharing:
- Sickle Cell Disease Association of America (SCDAA): Educational materials and fact sheets about sickle cell disease, managing SCD, and the daily challenges faced by people with the condition
- Centers for Disease Control and Prevention (CDC): Comprehensive information on sickle cell disease, including symptoms, complications, and management strategies
- National Heart, Lung, and Blood Institute (NHLBI): Detailed information about sickle cell disease, treatment options, and living with the condition
- American Society of Hematology (ASH): Information about sickle cell disease, including educational materials and guidelines for care
- Sickle Cell Foundation: Resources and support for families affected by sickle cell disease, including educational materials and support services
- Sickle Cell Trait Awareness Program (SCTAP): Information about both sickle cell disease and sickle cell trait, which may be useful for understanding the broader context
Stand Up for Your Child
If you notice that the accommodations and support aren’t working well, don’t be afraid to speak up. You can talk again with the teacher or ask for help from school officials or the school nurse to make sure your child gets what they need.
Encourage Understanding
Help the teacher understand that living with sickle cell disease is challenging for your child, but that with the right support, your child can do well in school. This helps build a positive relationship between you, your child, and their teacher.
Check In Regularly
Plan follow-up meetings to review how things are going and make any needed changes. Keeping in touch helps ensure that your child’s needs are always met as they change over time. Also let the teacher know that you’re available if they have any questions or concerns at any time.
By preparing well, explaining clearly, and staying in touch, you can help your child’s teacher understand and support your child with sickle cell disease. This teamwork is important for making sure your child has a successful and happy school experience.