One of the most challenging times a parent may face is if their child is diagnosed with a chronic illness. Many emotions including anxiety, fear, anger, and even helplessness can overwhelm parents. Children often present challenging emotions of their own, which often mirror that of their parents. All of these emotions can challenge well-known and comforting family rhythms and routines.
During times of change, children crave stability. In the midst of uncertainty, there are still things that they can count on, are familiar to them, and foster a sense of security. Children often challenge common household rules not only to sometimes communicate negative emotions, but also to test if disciplinary responses will stay the same. Sudden changes of the rules can often confuse a young child, and then may be harder to enforce as progression through the illness occurs. For example, a sudden decrease in the importance of remembering to use basic manners, such as saying “please and thank you” may create confusion in a young child and an uncertainty of what the expectations are. This could add more anxiety simply because again, the rules are changing.
The world of chronic illness can be a distressing one and can be filled with many questions, concerns, trips to doctors and hospitals, as well as medical procedures or inpatient stays. As would be expected, children often do not eagerly embrace these new changes, which can make this new chapter a greater challenge for the whole family.
Some ways to help a child transition into a new diagnosis may include:
**Remain consistent. When a child feels that their world is in a state of change, it can be very scary. Many things that felt certain in their lives suddenly may no longer feel that way. Children may act out, seeking attention, comfort, and stability to assess the responses of their closest family members. A chronic illness can bring along an entirely new world where the rules and expectations are unknown, and that can be very fearful to a child. If expectations change or the behavior of their parents changes, that is one more thing that a child has to adjust to, and that can cause more challenges. However, if they know that there is stability in their home and with their family, its boundaries, and expected behaviors, then this can provide comfort and make this new environment less frightening.
**Provide honest, age-appropriate education. There are some families who may feel that the less a child knows, the better. However, children come equipped with vivid imaginations, and what they may not know, they may just make up on their own. This can lead to some challenging misconceptions that may difficult to unravel over time. Children also are extremely perceptive and very aware of the people and environment around them. They respond to the emotions that they see and hear. If they see a family member crying over bad news, then even though the child may not have been told what is going on, they automatically assume something negative and scary because of seeing a family member cry. Emotions are healthy for a child to experience and be able to share safely with their families. Modeling appropriate responses to emotion is a wonderful teaching opportunity for children to learn positive ways to cope with challenging emotions. It is often recommended to proactively speak to your child about the new diagnosis and be prepared to answer their questions. Also, be at peace with saying “I don’t know” to your child. Some things simply cannot be answered at the time, and it is ok to tell a child that and validate how hard it is to not have answers. If you need assistance with speaking to a child about a new diagnosis, please feel free to ask for a Child Life Specialist.
**Validate powerful emotions. The world of chronic illness may often feel isolating. Family members often verbalize feeling alone and that no one else understands how they feel. Children can also experience these challenges. An 8 year old expects to spend their days outside playing with friends or at school, and suddenly they are in a hospital with a potentially limited social network. When a child verbalizes or demonstrates that they are experiencing challenges coping, validate their emotions. Anger, fear, hurt and sadness are all normal and safe emotions, and it can also be reassuring to know that their parents are feeling the same things they are. Then, a child and their family can work together as a unit to become empowered to come up with ways to take on this new challenge together.
Chronic illness is not a diagnosis that anyone expects to ever receive. Remember however, that many hospitals have an extended list of support services available to children and families which provide access to resources and support. Do not hesitate to take advantage of what is available to you or ask for what you need if it isn’t readily available. Check out the new online communities that are now available through Arnold Palmer Hospital for Children to see if there is a support group that would meet your needs for additional support.
Lendy’s blog was first published in MyIlluminate, Arnold Palmer Hospital for Children’s Blog, July 13, 2015. (http://www.arnoldpalmerhospital.com/blog/how-to-help-your-child-cope-with-a-serious-illness)