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SCD & School: What Parents Need to Know

When first finding out that your child is diagnosed with SCD or after several years of dealing with the diagnosis there is always something to learn. Here is some information you need to know about dealing with SCD and school.

What Can Trigger a Crisis?

Factors that may trigger a crisis include:

  • dehydration - not having enough water intake can lead to dehydration which contributes to blood cells sickling and can complicate treatments.

  • high altitudes

  • cold environment - being in too cold of an environment can trigger a pain crisis

  • drastic changes in temperature - regulating body temperature is important and this can be difficult in classrooms where thermostats may or may not be controlled in the classrooms

  • swimming in cold water

  • arduous physical labor/activity - over exertion on the playground or during PE can put your child into a pain crisis.

  • stress - this is a difficult one, but helping minimize stress can help keep your child out of a sickle cell crisis

  • menstrual cycle - the link between a genetically female's period and SCD isn't understood yet, but up to 60% of mensurating individuals experience a pain crisis in the week prior to or the week of their period.

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How Does SCD Affect School?

Children with SCD may miss class time or be absent for doctor visits, hospital stays, or blood transfusions.

Your child may appear distracted or unmotivated to learn. Chronic fatigue or pain can affect students' ability to learn.

Many kids with SCD require special precautions in order to be able to play contact sports or participate in strenuous exercise. Know your child's limits and let the school know.

How Can I Help During School?

Your first step when your child FIRST STARTS going to school, preschool or kindergarten, is to contact the school counselor and call an ARC meeting to create a 504 plan for your child.

ARC stands for Annual Review Committee. This committee may be small at first and include:

  • you

  • school counselor, and

  • school nurse

but it may grow as your child gets older and moves from grade to grade.

It's never too late to call an ARC to establish a 504 plan for your child, no matter what grade they are currently enrolled.

Attending the ARC Meeting

You will want to be prepared when you go into the meeting. You will need:

  • a medical statement from the doctor that your child has been diagnosed and is being treated for SCD, as well as the current treatments., i.e. blood transfusions, etc.

  • our pamphlet "Sickle Cell & School: What Educators Need to Know"

  • a list of typical symptoms that your child experiences and what they look like for your child

  • signs that your child needs to be picked up from school in order to be monitored in case they need to go to the hospital

  • signs that your child needs immediate medical attention and they need to call for an ambulance

  • a list of accommodations for your child

Accommodations for the 504

clipart water bottle and hoodie

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Your child may:

  • need to carry a personal water bottle

  • ask for breaks from instruction and activities when necessary, due to fatigue

  • need frequent breaks to see the nurse to help manage their pain.

  • need frequent bathroom breaks (due to required fluid intake)

  • want a sweatshirt or jacket with them at their desk

  • need to take breaks during recess, PE, or other activities that require physical exertion.

Ask for your child to have accommodations such as:

  • extensions for homework and projects,

  • rescheduling tests (due to absences or appointments).

  • re-do low homework grades to help improve mastery of content

  • extra instructional time when needed

  • These may help reduce stress, which will help manage their symptoms.

When Is a 504 Not Enough?

It can be difficult to see your child struggle in school due to their SCD and knowing when the 504 plan isn't enough support anymore can be even more difficult.

The ARC will meet yearly to review the 504 plan to ensure the most current information is on the plan. This is the time to discuss any concerns about about their education or their academic progress. If you have any concerns about their academics, make sure to tell the ARC chairperson (usually the person contacting you) about your concern. They will then be sure to invite the appropriate people to the ARC. This is when you may see an increase in the size of your ARC committee. Your committee may include:

  • you

  • the school nurse

  • the counselor

  • a regular education teacher

  • a school psychologist

  • any related services you may have mentioned (speech, occupational therapy, etc).

When conducting a referral for special education services the ARC has 60 days to reconvene to present results. If the ARC determines eligibility then your child will receive an IEP, Individualized Education Plan. This document provides extra academic support to help them be successful in school. Except in the most severe cases, the goal is to fade an IEP, so it only lasts as long as your child needs the support.

iep vs 504 comparison chart

Download a PDF brochure version here.


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