No matter what age they are, all children need someone willing to listen who can also answer their questions openly in a way that is age appropriate. Some children may ask a lot of questions; others may keep them inside, wonder about the answers, and never verbalize what they are thinking about. There is no right or wrong way for children to cope. It's important to let children express what they need to in the time frame that works for them.
Paul J. Kachoris, MD, is a triple board certified pediatrician and child, adolescent and adult psychiatrist with over 40 years of clinical experience and is a close family friend, familiar with the devastation ALS/MND causes families. When asked for suggestions to offer parents, he stressed the importance of parents' role in talking about ALS/MND. How a parent is coping and handling ALS/MND will send conscious and unconscious clues to a child on how s/he will likely respond. This response is extremely powerful in setting the tone for all family system dynamics. Here are some additional suggestions to guide parents and loved ones when talking with children about ALS/MND and help set the tone for successful conversations.
Should children be told about ALS/MND?
The answer among experts is a unanimous YES. When discussion is avoided, parents may not realize that this conveys the erroneous notions that ALS/MND is an embarrassing or shameful disease that fosters anxiety and should be feared. It's important to be open with children and to remember that they are always learning and growing and that their questions will change as they get older. Most children need to be reminded that it's ok to ask questions and that you are always available to discuss any issues or concerns they might have.
It is extremely important to be open and honest. Children know when a parent or someone close to them is not telling the truth or is anxious, and some children may stop listening. Let them know that ALS/MND is difficult to understand, and that you will be there to help them. Remind children that no one is at fault; it is not a punishment. You never know who will develop ALS/MND and it is not contagious. ALS/MND affects everyone differently, and there is no way to predict what the future holds. Remind them that they will always be taken care of.
You know your child and how they learn best, but most will respond positively to information given in small increments over time. When adults listen carefully, children let them know, either directly or subtly, when they've heard enough and will return for more at a later time. This is true regardless of the age of the child.
Do what you can to talk in a calm and comfortable manner. You may want to discuss ideas and topics with a family member, friend, therapist or in a support group first.
If a child is acting out of character, showing regressive behavior, seems depressed or something just doesn't seem right, it may be time to seek outside support. Whether it's play therapy for a younger child, individual or group therapy for an older child, or contacting a child's caregiver or teacher, it's always a good idea to ask for support and let other adults in your child's life know what's going on. Sometimes a child will have an easier time sharing his concerns with a therapist or social worker. If you need help finding additional resources in your area, please contact us.
Talking with preschoolers
Use language your child knows and try to keep explanations short. If this is the first time you're telling a child this age about their dad with ALS/MND, you might say something like: "Daddy's muscles aren't working as well as they used to. The doctors are trying to help him, but he might not be strong enough to play ball with you right now." Be sure to remind him of activities they can still do together, such as reading books, listening to music or watching a sports event together. Children this age often want to help. They can bring their dish to the sink, help put toys away, or bring a loved one something they need. Let them know that their help is appreciated, and they may want to help more!
Talking with school-aged children
Give the child the name of the disease. It might be helpful to write it down. Emphasize that nothing the child did caused this disease and it's not contagious like a cold. It can be helpful to children this age to hear what is being done to help control symptoms of the disease. It's also helpful to keep the daily routine as normal and consistent as possible and to reassure children that they will always be taken care of. Talk about things they can do to help, or new activities you can do together, like drawing pictures, brushing mom's hair, or reading to their dad. Children this age often appreciate special time alone with each parent.
Talking with Teenagers
Give as much information as possible. Be prepared for any reaction, including anger and sadness - all are normal. Answer every question as fully and honestly as possible. Let them know where to find reliable resources if they want to learn more. It's also helpful to make sure they have someone to talk to from outside the family, preferably someone they trust and who will keep their conversations confidential.
Adult sons and daughters are also in need of honest conversations. They may take on more of a caregiver role for a parent with ALS/MND, and may benefit from attending a support group in their area.
A resource for preschoolers
"Your Ema Loves You" by Eloise Lovelace. Written by a retired special education teacher diagnosed with ALS, this is a story about a grandma with ALS and how her body may change, but her personality and the love she has for her grandchildren remains powerful and alive.
Resources for school-aged children
"What to Do When You Worry Too Much: A Kid's Guide to Overcoming Anxiety" by Dawn Huebner. This interactive self-help book is a great resource for educating, motivating, and empowering kids to overcome worries that can show up when a parent or loved one has ALS/MND. "Lou Gehrig: The Luckiest Man" by David A. Adler, for children ages 6-9.
Resources for teenagers and adults
"Until I Say Good-Bye: My Year of Living with Joy" by Susan Spencer-Wendel
"Tuesdays with Morrie: An Old Man, a Young Man, and Life's Greatest Lesson" by Mitch Albom
"Luckiest Man: The Life and Death of Lou Gehrig" by Jonathan Eig
"My Brief History" by Stephen Hawking
"A New Reality: My Life with ALS" by Eloise Lovelace
If you or someone you love would like to talk more about how ALS/MND has impacted the children in your life, please contact [email protected] or at 608-663-0920.