Parenting adolescents with a chronic illness

Parenting adolescents or teens can be a roller-coaster for all of us. Parenting an adolescent with a chronic illness has its own set of challenges. Developmentally, your child’s job during this time is to develop their own identity and work toward independence. But when a child with XLH is naturally more dependent on you than their peers for things like medication routines, doctors' appointments, etc., it can create additional anxiety and stress and exacerbate any feelings of being "different." And we all know how an adolescent's stress levels can affect the family dynamic.

So how can you still monitor your child’s medical care and help them gain independence at the same time? Research suggests that allowing children increasingly more responsibility for their own care can help. Letting them have some time with their medical team alone, giving them the responsibility for taking their own meds, encouraging them to find social support among their affected and non-affected peers are just some of the ways an adolescent can take control of their own health and start to feel independent.

We’d love to hear other ideas from parents. What has worked/not worked in your family?

For more information: "Developmental Complications in Chronic Illness" https://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=90&ContentID=P01658