(ARA) – From buying new supplies to soothing first-day jitters, parents have a lot to do to get their kids ready for the new school year. And if your child has a chronic disease, the start of school may feel especially stressful.
Eric, a nurse and father of two sons with hemophilia – a disease in which a person’s blood doesn’t clot properly – says his family’s back-to-school experience isn’t all that different from everyone else’s. But to make sure the transition goes as smoothly as possible, he recommends taking these extra steps:
* Make sure the school can reach you at all times. It’s not enough for the school to have just one or two phone numbers; make sure the office staff has home, work, mobile and e-mail contact information for both parents and emergency backups.
* Talk to your employer about your situation. For Eric, his sons’ illnesses mean he occasionally has to visit their school and inject them with a dose of medication. If your employer understands your child’s illness, he or she may be more flexible if you need to leave work suddenly or adjust your regular hours once school begins.
* Get to know the school nurse and office staff. It’s important for school staff to know how to react if a complication arises with your child. Eric’s sons’ school doesn’t have a nurse, so he makes sure the office staff knows exactly what to do if one of his children has a complaint.
* Educate your child’s teachers. It’s critical for teachers to know when to send a child to the nurse, when to call the parents and how to diffuse potential teasing from other students. Eric often taps into his local hemophilia awareness group for reading materials and DVDs that he can share with his sons’ teachers.
* Encourage the school to treat your child like any other student. Above all, Eric wants his sons to be treated like any other 7- and 10-year-old boys. While safety always comes first, his goal is for them to be active, independent and spirited – and that’s not possible if they’re sitting on the sidelines or receiving special treatment from teachers or staff.
* Ask for accommodations, but only when necessary. It’s important to have a thorough understanding of school policies and feel empowered to ask for an exception if it’s necessary to your child’s health. For example, if your child can’t carry a heavy backpack, it may be easier for him to use a rolling suitcase, which many schools prohibit. Talk to school administrators if a situation like this arises.
* Recognize that every child is different. Even among children with the same condition, there are several variables – how the child feels about his disease, how frequent and severe his symptoms are and even whether he wants other kids to know about his illness. Make sure the school understands and respects your child’s individual situation.
* Educate and empower your child about his disease. It’s important for your child to know his body and illness so he can act responsibly in any situation. Eric’s sons attend local camps and seminars to better understand their hemophilia and this knowledge helps keep them safe and confident during the school day.
* Don’t let the disease take control. Eric’s family’s philosophy is that hemophilia is just a challenge they have to manage – it doesn’t define their family or dictate their decisions. He wants other families to know that even if they’re dealing with an illness of any kind, it shouldn’t stop them from having an education, careers or relationships, just like anyone else.
Remember, every school has different policies related to child health, particularly when it comes to administering medicine. Be sure to talk to your child’s school staff about any other steps you may need to take to keep him safe. To learn more about hemophilia, visit www.hemophiliavillage.com.
