There are over one million people in North America alone that have Parkinson’s disease with an estimated 7 – 10 million worldwide that face this challenge everyday. And they aren’t alone in their journey with this disease. There are many times that number of family and friends that are impacted by a loved one’s diagnosis. In fact Parkinson’s disease affects not only those with the illness but also affects the entire family unit, including those most vulnerable – our children.
Disclosing a diagnosis of Parkinson’s to a child is an important task, one that can either be a positive experience or if not approached carefully, can be a stressful one. It is a conversation that may be difficult to initiate – when is the right time to tell a child? At what age is it appropriate? What do you say? How will they react? Will telling them cause undue stress? Are there any resources that can be used to help in this process? These are all valid and common concerns but we must not allow our trepidation about broaching this subject lead to avoidance of the topic.
First and foremost, it is important to remember that each family is different. There is no set age at which a diagnosis of Parkinson’s should be discussed. It depends on the maturity level of the child, other life circumstances and stressors in the family and your own innate feeling of when the correct time is. Keep in mind however that children are very intuitive and they are likely to pick up on the issue even before it is revealed to them. The anxiety that they may feel will only be heightened by lack of communication as their imagination may conjure up situations that are far worse than reality.
As a mother of three children, all born after my diagnosis of Young Onset Parkinson’s disease, I have had some experience with disclosure. And for the most part it has been a challenge that we have faced successfully as a family, this experience having taught my children the values of empathy and compassion. Although every family’s situation is unique, I have found there are a few general concepts to keep in mind when discussing this topic with children.
(1) Be honest in your disclosure.
As I mentioned before, children are in general, fairly intuitive. Even if you have not discussed the diagnosis with them and think you have been discreet, chances are the children involved sense that something is wrong. And unfortunately the story that they make up in their minds can be a lot worse than the actual situation. It is more likely to cause anxiety if they feel there is a secret that is being kept from them.
(2) Use age-appropriate language.
Although I have always been a strong proponent of teaching children correct terminology in the areas of health and science, it is also important to take into consideration their age and maturity level when deciding which information is appropriate.
(3) Always express hope.
Children are generally optimistic and much more resilient than we are. It’s important to honor that optimism and try and express hope when discussing the future. Every situation has a positive perspective and it’s important to focus on that aspect in order to allay any natural fears that may develop.
(4) Make them feel empowered.
Once you’ve disclosed the diagnosis of Parkinson’s disease, it is important to focus on empowering the child, letting them know ways they can help. The concept of emotional support is a bit complicated for most children and they are often unsure how to express it. But they do understand action. Action gives them something on which to focus. Giving them concrete ways to make a difference, be it with daily tasks such as helping with household chores or something more proactive such as fundraising, will lead to feelings of empowerment.
(5) Keep the lines of communication open.
As time passes and the disease progresses, there may be new concerns or questions that arise. The age of the child and degree of their understanding will change as well. It is imperative that the child feels that they are able to discuss any new concerns in a safe and supportive environment.
(6) Access helpful resources.
There are some books available to help facilitate conversations with children. You may also get good practical advice from support groups, online or otherwise, where people can share their experiences. And if necessary, seeking help from a professional counselor is always a good option.
Parkinson’s disease affects us as patients as well as those that we love. Learning how to communicate particularly with the youngest members of our families, will allow them to have a better understanding of this illness and adopt better coping skills all leading to a healthier approach to this family challenge.