Talking to your child about his medical condition

Parents have written to us asking when they should tell their child that he has a disability, birth defect or chronic medical condition. Not only do they want to know when to tell their child; they want to know HOW to do it.

According to the experts, there is no straight, cookie-cutter answer. Every child is different. Every medical condition is different. Kids mature at varying rates, so one five year old may be capable of understanding details of his condition while another one will not be able to grasp the concepts. According to the AAP, “The type of information you convey to your child should be appropriate for your child’s age and developmental abilities. You can gauge this best by listening to her questions.”

Seeking advice from your child’s pediatric health care provider is always a good place to start, along with other specialists such as a therapist, psychologist, neurologist or developmental pediatrician. The AAP has practical information on how to talk to your child, along with tips on how to help him deal with the daily stress of a childhood disorder.

Just as you probably felt like a steam roller moved over you when you learned of your child’s condition, your child may also feel disappointed, sad or even angry. On the other hand, your child may feel a sense of relief to realize that the condition has a name, he is not the only child who has it, and mom and dad will be there to support him through the ups and downs. Other children may not have much of a reaction, as they already knew what was going on – or felt different – so they are not especially moved by the new information.

Depending on your child’s age, his ability to understand, and what he hears from peers and siblings, he may know more about his condition than you think. And, each year, as he grows and matures, his ability to understand will increase. AAP recommends that “Every year or so, someone should check out what the child understands about his illness or disability, fill in the gaps and correct information that he does not understand correctly.”

Children’s books on the topic of his disability can help your child understand what is happening in his world. Likewise, meeting other children who share his condition may help to put it in perspective and brighten his outlook. He may even make a new friend or two.

Remember to focus on what your child CAN do, as opposed to his struggles. This attitude is key in keeping him focused on the positive. Help him find his passion  and celebrate his resilience.

If you have questions, send them to AskUs@machofdimes.org.

View other posts in the series on Delays and Disabilities: How to get help for your child.