Although your child may be learning how to cope with a chronic condition, it is important to maintain as much normality in their routine as possible, whether at home, at school or during free time.
Maintaining and adjusting routines at home
Keep rules consistent when possible. Rules and structure can be a ‘safety blanket’ for children when their condition disrupts other parts of their lives. In contrast, a lack of rules or a big change in your expectations as a parent can make a child anxious, especially when they are already dealing with physical health challenges.
It is also ok to adapt or relax rules based on your child’s current symptoms. For instance, if your child’s chores usually include feeding a pet, setting the table for dinner and keeping their room tidy, you might help your child with their chores or have them do only one of them until they can do all their chores on their own again.
Focusing on favourite activities
Many parents find it helpful to be clear about what is important to them and their child and how to live their life in light of a child’s condition. This helps the family stay connected to the things and people that were important to them before the child received their diagnosis. For example, if your family enjoyed hiking, it is important to continue going on family hikes even if you need to cut them short or choose easier trails to allow your child take part.
Whenever possible, allow your child to continue doing activities and attending events that are important to them. Do not limit activities or events unnecessarily.
Developing and maintaining independence
Parents of a child with a chronic health condition may sometimes become overprotective. Out of concern for their child’s health and wellbeing, some parents might want to do everything for their child or make big changes to their routine. However, this does not help a child learn to cope with their condition or gain independence.
There are times when your child’s chronic condition will need to take priority over everything else, but, whenever possible, encourage your child to take the time to do things and see people who bring them joy. A diagnosis of a chronic condition does not mean that your child needs to abandon their hobbies or sports completely.
Strategies for school
Communicate with your child’s school staff, teachers and coaches about your child’s needs as early as you can. You do not need to give them every detail about your child’s diagnosis, but sharing an outline of your child’s needs will help them support your child.
With enough notice, the school may be able to offer accommodations. Depending on your child’s needs, these might include:
- extra time for assignments or tests
- the option to take notes or do homework on a computer instead of by hand
- notes from teachers or photocopies of classmates’ notes
- modified gym classes.
You may need to update your child’s school about your child’s needs at the beginning of every school year. Your child’s healthcare team can provide a letter about your child’s condition to help arrange suitable accommodations.
