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  1. 7 Summer Camps Kids with Sickle Cell will Love

    May 29, 2014 by Andrea

    What if there was a camp that specialized in working with children with sickle cell? Turns out, there are several -- and many of them are free! Check out our list here.

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  2. How to Advocate for Your Sickle Cell Child at School

    May 21, 2014 by Andrea


    Last month, a teacher at a school in Washington, DC was accused of ignoring the plight of one of her students with sickle cell. According to an ABC News report, the 9-year-old child told his teacher that he was feeling hot and unwell. The teacher then told him to get some water and sit back down and do his work. He still didn't feel well, and kept his head on his desk; his teacher just kept telling him to get back to work. 

    Three hours later, he still didn't feel right, so he walked out of class and went to the office for help. He was sent home on a bus and by the time he arrived at home, he had a fever of 105 and had to be rushed to the hospital. 

    The child's parent says that the school was aware of her son's battle with sickle cell, but there's no indication that there was an actual plan in place for his care at school. So, how can you help ensure that the same thing doesn't happen to your own child? Take the following steps: 

    1. Meet with your student's teachers, administrators, special education staff, and counselors to draw up a 504 plan. A 504 plan ensures that your child receives the free and appropriate education he or she is entitled to by accommodating the student based on any physical or mental disabilities. A 504 plan can include assistance, such as preferential seating, rest periods, extended time on assessments, medicine administration, and the ability to drink water during class, among other options. 

    2. Find a professional tutor. For those times when your child must be admitted into the hospital during sickle cell crises or other complications that may arise, make sure your student is still able to stay on top of his or her education with the help of a tutor. Many hospitals have licensed educators on staff, who will work with your child's teachers to plan assignments, provide instructional time, develop progress reports, and more. Ask about the school program at your hospital to find out more. If your child is recovering at home, rather than in a hospital, reach out to the school for information on finding a homebound teacher. 

    3. Keep the lines of communication open. Request regular updates from you child's teachers about progress in class and whether or not they've noticed any periods of pain, fatique, overheating, etc. taking place in the classroom. When you notice a change in your child's illness, be sure to inform teachers about it, as well. The CDC also recommends building a relationship with teachers when your child is feeling well: "Keeping in contact when a student is not ill helps teachers to tell the difference between a student's typical behavior, and performance that might signal health, learning, or behavioral problems." 

    How have you advocated for your child in school? Comment below with any other tips you'd like to share!



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  3. 2014 Indiana Sickle Cell Conference, Revisited

    May 7, 2014 by Andrea

    Did you miss our presentation at the Indiana Sickle Cell Conference hosted by the Martin Center? No worries. You can find all of the information here by viewing the presentation below. If you have any questions about it, tweet us, Facebook us, or leave a comment!

     

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