Back To School With Sickle Cell Disease
Last updated: November 2022
The new school year is now upon us. For the parents of children with sickle cell disease, it means we have to finish our preparing for school "list".
- What information should we share with the teachers?
- Which teachers should we share information with?
- Conversations with our warriors
- Put reminders for ourselves!
Sickle cell back-to-school essentials
Reminders for ourselves? YES! I have to set reminders so that I don't forget to give the important things to my princess. Very small, yet very important things that she has to bring to school.
- Tight-fitting water bottle
- Warm vest (in case it's cold in the classroom - air conditioning turns on for example)
- Masks (since Covid19 I always give my princess extra masks to protect herself when necessary)
- Hand sanitizer
Conversations with our warriors
In preparation for the new school year, I had a number of conversations with my princess. It all starts with enthusiasm to make new friends. I keep trying to gauge how she feels about the new school year. Is she happy? Is she afraid of something? Does she have any questions? Is it scary? We discuss all the fun and less fun things so that in this way I can contribute to the reduction of conscious and unconscious stress.
In addition to these conversations, I keep reminding her daily to drink enough water, to put on a vest when it is cold, to rest on time during PE lessons so that her body does not get too tired.
It seems like simple things, but we have to support our children every day to do better. Sometimes my princess forgets her jacket at home, so this year I intend to set reminders for myself. So that as a mother I can come in when she forgets. And the same for her water bottle. It's teamwork!
Conversations with the teachers
I have shared a lot of information with my daughter and her teachers about sickle cell disease, personal information, and specific things to watch out for. My mobile number is on all forms and in all chats because if you need to reach me you don't have to look any further.
For me as a parent, it is important that the teachers know exactly what happens in the body of my princess so that they can ensure that she follows the rules and that we as adults can ensure that she can be as healthy as possible this school year.
What are the important things that you need to discuss with the teachers?
- When do they need to call you as a parent?
- How can they help to keep your child healthy?
- Your child needs to drink enough water, this might cause more bathroom visits
- Not too much physical activities
- 504 plan (more information about the 504 plan here.)
First day of school
The first day of school is the first day of a new exciting journey. As parents, we sometimes feel a bit anxious because we have the same "what ifs" on our minds. But, when you have the right tools, you don't have to be "afraid" of what can go wrong. You can prepare for all the "what ifs" and also try to change your mindset a little bit. This year I've planned to start the new school year with a much better attitude without any "what ifs" because my little princess doesn't have to deal with the cold weather anymore.
How to prepare for the "what ifs"
One of the most important tools that we need to use as parents is the 504 plan. Originally its called Section 504. Section 504 is part of a federal law called the Rehabilitation Act of 1973. It allows students with medical concerns to get “accommodations” to help them learn better. Accommodations are changes made in the classroom to raise the chances that your child will do well in school.
Cold weather and school
If you live in a state or country where you have cold weather, please make sure you keep your child hydrated, warm, and healthy. Try to keep on track when it comes to the regular visits for the hematologist, do all the annual testing, and be patient when your child is struggling. When we are patient, we send positive vibes to our children and that helps to keep them calm as well.
Tips for the cold weather and living with sickle cell can be found here.
Wishes for a new year
A new school year is also very important for us as parents, and that is why I would like to share the tips with you so that you can take this with you in the new school year. I pray that we all may find a way to support our warriors during the new school year, and I wish you all a very beautiful and successful school year.
Do you also have tips? Share them with us so we can learn from them too
Are you interested in connecting with other sickle cell warriors?