The unknown can be frightening to children. Be honest when your child asks questions about sickle cell disease, its treatment, and its complications. Educate your child about sickle cell disease in age-appropriate words. This will help him or her feel empowered and in control. Keeping your child’s developmental level in mind, allow him or her to assume responsibility for some aspects of care. This will help prepare your child for the transition of having to care for himself or herself as adulthood approaches. n CAN MY CHILD ATTEND SCHOOL? School is an important part of every child’s life. In addition to learning about reading, writing, and math in school, children also learn how to get along with others. Living life in ways that are similar to their siblings and peers also gives children an important feeling of being included in the “regular” world and helps them feel safe. Children who feel included and safe grow up feeling comfortable asking for help and wanting to contribute to their community. You can help your child participate in activities that build self-esteem and self-reliance. Your child’s hematology team may recommend limiting some kinds of activities; however, you can explore alternatives that will give your child opportunities to develop skills and talents outside of the classroom. At the start of the school year, consider meeting with your child’s teacher, principal, and school nurse. Beginning with preschool and kindergarten, you can help educate school personnel about sickle cell disease by giving them educational materials provided by your sickle cell disease team. Sometimes nurses and social workers from your team can call or visit your child’s school and talk to your child’s teachers about sickle cell disease. Ask them to share the information with others in the school. They can learn about the disease and provide support to your child during the school day. Although children with sickle cell disease may miss some school because of doctors’ visits and times when they do not feel well, it is beneficial for them to attend school as much as possible. After an illness or painful episode, it is best to send your child back to school as soon as possible. In general, children are better off when they attend school regularly. If your child is not doing well in school, talk with their teachers. Your child may need to be tested for learning difficulties. Children with learning difficulties often need individualized educational plans (IEPs) to help them succeed in school. You can talk to members of your child’s healthcare team about information they might want to share with the school to make sure your child’s educational and health needs are addressed. For instance, children with sickle cell disease should be allowed to have water at their desk and to go to the bathroom more frequently than their classmates. They should never have ice applied to an injury. They also should be encouraged to participate in all class activities unless advised otherwise by their sickle cell team. Each child is unique, and there may be other ways an educational plan can be designed to help your child. Your child may need tutoring to help catch up after missing school because of illness. Ask the school and your healthcare team if there are tutoring programs at school or in the hospital. Aim for your child to be healthy, happy, and successful and work with your child’s healthcare team to provide the kinds of support your child deserves.
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