Sickle Cell Warriors


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Schools & Parents Can Work Together

Schools & Parents Can Work Together

zna school pic

From October 2013 until January 2014 my warrior had been in and out of the hospital.  I was grieved because she loved kindergarten and she had missed so much.  However, I keep her reading, counting and learning as much as I could to keep her mind growing in knowledge.  Around December, a hospital tutor stopped by and asked my warrior’s age. I told her she was 5 years old and she went on to tell me that my warrior qualified for school services that would allow a tutor to come to the hospital or to the home so that she could keep up with her education and proceed to the next grade with everyone else.  I was ecstatic to say the least.  I signed the papers and she sent them to the school district my daughter attends.

A few weeks later, when hospitalized again the tutor came by and told me that the school had not answered her paperwork concerning a tutor for the hospital stays.   I informed the school and when I got no response after that.  I spoke to the principal and she set up a meeting with her, the director of school nurses, vice principal and me.  They drew up a 504 plan that would accommodate my child when she is sick.  This plan would follow her through every school of the district she attends no matter what the grade is.

We reviewed all the necessary things she would need while in school like: unlimited visits to the nurse, permission for medicine administered from doctor’s orders, unlimited access to fluids, bathroom breaks as needed, rest breaks as needed, absences excused when parents notify the school of SC related issues, tutoring for homebound and extended time on assignments.  As she grows older an extra set of school books can also be kept at home.  Recess will be modified according to the weather and gym class will be modified as well.

The plan does not include a tutor for the hospital but the school is checking to see if that can be added.  This plan allows the teachers to be more aware of the challenges faced by students with Sickle Cell.  It will help administrators understand and be more involved with helping the child succeed as well.  Most of all, it will take less stress off of the caretakers from wondering how their child will succeed because of the breaks in education.  Ask your school principal for a 504 plan today!

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About Author

Elle Jenae

Elle Jenae

My name is Louisetta Williams and I’m a proud single parent of a 4 beautiful girls ages 18, 13, 8, and 5. I love to refer to my daughters as my Z-babies because all their names start with a “Z” and online I often call them Z1, Z2, Z3 or Z4 in accordance of their birth order. My youngest Z-baby is 5 years old and she is my Sickle Cell Warrior. I work as a research assistant at the American Academy of Pediatrics where we research diseases that affect children all over the world. I love my job because our research helps enhance children’s health worldwide. My passions outside of work are reading, doing family activities, going to church, writing and helping people in any way I can. I wanted to write for Sickle Cell Warriors because I want to be the voice for parents who fight for their Sickle Cell Warriors daily. I believe by sharing my experiences, research and testimonies of how I cope with dealing with an ill child; I can help someone. I want to be an advocate for SCD parents who sacrifice so much and let them know that it’s okay to be perfectly imperfect.

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1 Comment

  1. Maria
    Maria February 02, 06:35

    A 504 plan for your child is beneficial. It protects their attendance, their efforts to make up school work and accommodates their needs while in school. The collaborative plan alerts teachers, school nurses, and administration of your child’s needs ,etc. As your child matures they also become aware of their accommodations and this helps them to become advocates for themselves. Higher learning college institutions have disability offices and the High School 504 is documented and accommodations can be carried over into college but you must apply. Well worth looking into.

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