Below are examples of easy-to-understand language that address some typical concerns that children may have:
• PSP / MSA / CBD is a progressive( changing) neurological( brain) illness that can affect a person’ s physical movements and other ways the body works. Sometimes these are changes you can see( poor balance that leads to falls, voice changes), and sometimes they are changes you can’ t see( forgetfulness, sad mood) but that still affect your parent / grandparent.
• PSP / MSA / CBD is not contagious. You cannot get it from touching someone or even being around them. It is rare for PSP / MSA / CBD to be genetic( inherited or passed down in your family).
• There are different treatments to help with the symptoms( physical and mental signs), including medications( pills). There are also physical therapists, occupational therapists, and speech therapists to help with some of the symptoms.
When to talk with children / grandchildren
In general, secrecy can be more harmful than sharing the truth about health issues, as children tend to be quite perceptive. In addition, children are usually more afraid of the unknown than they are of information that is presented at their level. Children are inclined to say that they want more information rather than less, and earlier on in the condition rather than later. They also want to know what to expect as the disease progresses. Be sensitive to the timing of your discussions. For example, bring up the topic when everyone is least burdened, not at the end of long day when you / they are tired, or before a test or major sporting event, or when rushing out the door.
How to talk with children / grandchildren
Your attitude and the way the diagnosis is presented can affect how children cope from the start. You want to be honest, hopeful, and mindful of tone of voice and choice of words. Encourage children to let you know what is on their minds and to ask questions. Communicate honestly, openly, and frequently about how this disease impacts the family. Discuss worries, find solutions together, and highlight what is working well. Consider asking,“ How are things different for you now that Mom has MSA?” or“ Is there something that I can do that would be helpful?” By acknowledging a child’ s feelings and fears and by providing the responses and reassurances children need, you will help replace their fear with knowledge. You want to provide an environment that is comfortable for children to ask questions. Answer the specific question the child has asked. And it is ok if you do not know all the answers or if you are unsure how to respond to difficult questions. Let the children know that their question is a good one and that you will get back to them with a good answer once you have thought about it.
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Also, consider talking about research, possible new treatments, and specialists who are working hard to improve treatments and quality of life for people with PSP, MSA, and CBD.
Ways to support children and maintain family wellness
Children may want to talk about the condition, but not with you. Ensure that they have someone to talk to( a friend, parent of a friend, teacher, coach, relative, member of clergy, or healthcare professional). Connect with other adults in their life who may offer support to children as needed. These adults may also be able to keep an eye out for changes in children that may be related to disease progression or the family’ s coping. Peer support is another option. Your neurologist, healthcare team, or organization may be able to match your child with another child in a similar situation. If a child displays significant behavior changes that begin to interfere with their normal day, seek a referral to a social worker or other mental health professional.