A child sits at a table with a book in front of her looking back towards her mother worriedly, behind her her mother is on the phone looking annoyed. Frustration, annoyance, concern, education, learning

Educational Support for Kids Living With Sickle Cell

Last updated: December 2022

What if the 504 plan is not enough?

  • What is best for your child when you think about education?
  • How can we best support our children?
  • How can we change systems that benefit our children?

It is sometimes quite a lonely quest when you stand in the middle and believe that your child does not get the best support from the school. Looking back, I should have done a few things differently myself. I need to be more critical and pay more attention to details.

When we lived in New Jersey we had a 504 plan that included several key points. One of the most important and valuable action points from this 504 plan was that if my princess missed school for more than 3 days, she was assigned a home instructor. This was a teacher from the school who worked with her for 5-10 hours a week.

Teamwork makes the dream work

This plan came about after considerable negotiations with the school's management team, school psychologist, school social worker, teachers, and a dedicated team from the hospital, including her hematology nurse, psychologist and social worker. It was a dedicated team that was aware of the importance of creating a sustainable motivating environment for children who need it.

In recent weeks my princess has been sick more often and at a certain point I needed a home instructor. In her current Florida 504 plan there is no home instructor, because they don't know that here. The school then referred me to the hospital homebound service, but this only takes effect when a child has missed at least 15 school days.

You understand that this is certainly not useful, because that means that if my child has missed 5 days, she is not entitled to support from a home instructor. It is an awful to feel powerless, and to have to get used to new rules that have no positive impact on your child.

The expense of tutoring

I then looked very dedicatedly for a way to give my child the best support and came across an online tutoring program, where I filled in an application form and within 10 minutes my phone rang.

It was the sales department of the tutoring program that wanted to make further arrangements. I explained the situation to her, indicated our needs as a family and most importantly I want a tutor from the same school district!

What is expensive?

She presented some options because there are different packages and I really had to swallow. It sounded very attractive and quite expensive. But as a mother, I had several things that I had to honestly list.

What is expensive? And how do you determine priorities? A tutor who works with love with my princess and helps her to be successful in school, unfortunately cannot be expressed in money. So, I said to that lady: Yes, we are going to do this!

Worth the cost

Within 48 hours I got a call from the tutor who saw the notes in the comment box, and she was happy to help my princess during this process. I explained to her what I am looking for and that I would like someone who contributes to the feeling of being confident, closes the gap and has the best intentions for my princess so that she can be successful.

It was a wonderful conversation and I felt so grateful. I couldn't imagine saying no to the price. What is expensive? She has already had a few sessions and after each session the videos are uploaded, and I can read the teacher's notes and see how she can practice extra.

We need more options

I'm so grateful that these kinds of platforms exist, and I wish the school district had these options for kids who need them.

As a parent, you are often shocked at the limitations systems have for people who need extra help. And it takes so much time, energy, and money to keep figuring everything out. It would be so much easier if there was an organization that would patiently, lovingly, and respectfully explain these important basic needs to you.

Hopefully soon we will have these important things in place, because I believe that a lot of parents are struggling with the same things. But for now, I will do my very best to do what I can do for my princess, and share my experience with others, so they don’t have to figure out everything themselves.

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