The Education Equation: Connecting Home, School, and Hospital for the Child with a Chronic Illness

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Sending our children to school is often one of those zen moments when you think Ahhh a few hours of peace to have a thought that you can continue for longer than 5 seconds before being interrupted or it can be a time of worrying about if your child is doing okay in school; making friends, fitting in, and learning.

For parents of children with chronic illness, they worry. They worry about what will happen if their child with diabetes doesn’t get his snack in time or will he miss something important when he steps out of the room to get his insulin injection. Others worry if their child has a seizure will the teacher know what to do to prevent injury. Do the other children tease the child with asthma because she can’t play tag without loosing her breath or make fun of the girl with celiac disease because she brings gluten free snacks instead of a bag of pretzels or yogurt cup with graham cracker topping.

Children with chronic illness do go to school. Parents, educators, and healthcare providers can work together to create a plan for the educational, emotional, psychological and social needs of otherwise healthy developing children. By prommoting empathy, accessible information, and additional support for the classroom teacher, going to school doesn’t have to be a health hazard.

Empower Your Child

Make sure your child understands his own disease. Using age-appropriate explanations explain your child’s disease to him.

Find analogies that he can relate to. For example, a seizure is like when too many people are talking at once and no one can hear the message so everyone starts doing whatever they want causing there to be lots of confusion. Role play situations where he may be teased or singled out. Work through responses together practicing when to walk away, tell the you or the teacher, or how to respond. When a child if given honest answers about his illness they are empowered to answer students questions, respond to thoughtless comments, and take ownership of his disease. Remember also as your child gets older he will need more information and details about his illness and care.

Ease School Transitions

For a newly diagnosed child or a child starting at a new shcool getting help from a certified child life specialist(CCLS) can help ease the transition back to school. A CCLS will talk first with your child about what she wants her friends to know about her illness. If she would like the CCLS to speak with the whole class (usually pre-school and elementary age) or just a few friends (middle and high school). How much involvement would she like to have in the presentation and and specific concerns she may be having. Doing a school visit in conjunction with a healthcare provider supports the child’s return to normalcy by addressing the illness, negating any misunderstandings, and clearing up any rumors.

Because the information is presented in a developmentally appropriate way it becomes matter of fact, leading to an increased understandng, promoting empathy, and building stronger friendships.

Create a Network

Create a network of professionals. Speak with your child’s teacher, school nurse or guidance counselor. Empower them with information that is easy to understand, talk with them about your child’s praticular symptoms and triggers and work with the school to design ways to build empathy, promote friendships, and ease transitions back to school after an abscence.

Enlist the help of your pediatrician or a nurse practitioner to function as a laison between school and medical center to provide the school with the information the school needs in order to create a safe environment for your child. Work with the child life specialist to help educate parents and students about dietary issues, health risks, and ways to include the child with chronic illness without making her the focus or cause her to stand out more. This three pronged system of home, school, and hospital will help all parties feel comfortable with plans for emergencies, complications or concerns.

Making sure that the classroom teacher feels supported in an area where she most likely has little experience. As the parent you are the glue that binds, acting as gatekeeper and key communicator will help your child feel more secure at school to speak up if there is a problem physically, emotionally or academically.

Every mother looks forward to that Ahhh moment when their child goes off to school, for the parent of a child with a chronic illness by empowering her child and employing the expertise of a team of professionals  she just may be able to find her moment of zen.

Genevieve Lowry is a certified child life specialist who has worked with many schools and families to easing the transition back to school. She is a adjunct professor at Bank Street College of Education in NYC. Check out her upcoming webinar,workshops, and classes at her website and blog.

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