ALS is hard enough on its victims, but what about the children?
A columnist reflects on how to prepare a child for a parent's disease progression
Among the various problems of life that families experience is the occasional exclusion of children from conversations. I remember hearing the older members of our family saying, “This is grown-folks’ business.” They’d tell us children to go outside and play.
Depending on the age of a child, that might have made sense and could still be true today. But I submit that when it comes to a parent being stricken with ALS, the grown folks may want to reconsider their position on involving their children as early as it is reasonable to do so.
A few studies on this topic are accessible online, so I will take a limited approach here. The top line of my assessment is that while an ALS diagnosis is always devastating for the entire family, it can have a greater long-term impact on children. The good news is that there are things we can do to lighten the load and mitigate the consequences.
One study published in Frontiers in Psychology notes that, “Numerous studies have explored how patients and their caregivers cope with amyotrophic lateral sclerosis (ALS), but the literature completely lacks research on the psychological impact of the disease on patients’ children.” It adds that, “Findings clearly showed that, compared with controls, children with a parent who had ALS had several clinically significant adverse emotional and behavioral consequences, with emotional and behavioral problems, internalizing problems, anxiety, and depressive symptoms.”
As negative as those results are, now take a look at Steve Gleason’s website and read about the Kotiya family. The potential problem is cited by researchers, and one proactive solution is illuminated by Team Gleason in an Instagram post: “Meet Siobhan Pandya and her sons Ronan (age 13) and Keaton (age 11) — an inspirational family growing their husband and father’s legacy by focusing on what they can do today to help other families living with ALS, including raising awareness around the power of a healthy and positive mindset.”
I encourage you to read the entire post and then watch Ronan’s podcast, available on YouTube. There you can learn more about this family and the way the children have coped with the harsh realities of ALS, both before and after their father’s death.
Our family’s story
On a personal note, and quite fortunately, my daughter was 16 when I noticed symptoms of ALS in my leg, resulting in a couple of falls. By the time I was diagnosed, she had seen more falls and my inability to do what I used to do — such as the time a dog ran toward her and she leaped into my arms, wrapping her legs around me. To our surprise, my leg buckled and we almost fell. Before that incident, she could always depend on me to catch her.
As I look back, I realize that my wife and I could’ve handled things differently in terms of sharing the news with our daughter. We made an effort to protect her from the terrible prognosis. She was away at college and about to go to London for a semester abroad, which alone was stressful.
Because of the great relationship I had — and still do — with my only child, I never intentionally did or said anything that would hurt her. In that vein, I probably overdid it by not seeking therapy to help us deal with the trauma of ALS.
Children are malleable and adaptable, especially young ones. Thus, the sooner they get the information the longer they have to process it, and the easier it will be for them to do so.
If you are a parent who is struggling with the issues I cited, you may want to strongly consider psychological help directed at getting your children through the ALS minefield with as minimal harm as possible.
Building a legacy and celebrating your life with your children will help them for the rest of their lives. My daughter is doing that for me and herself, for which I am grateful.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
About the Author
Lynette Alber
I babysit our 2 1/2 yo granddaughter every few weeks and my Spouse (PALS) more recently is using his power chair more often around the house and always outside. Our granddaughter seems fearful around his chair and recently asked if Grandpa could WALK with us outside rather than ride his chair. It is difficult to explain to a 2yo why her Grandpa is moving around in his chair and not walking. She seems afraid of the chair itself and called it “scary”. It breaks our hearts to see her react this way! Any ideas on how to help her?
Jain
When the chair is empty, try sitting on the chair with her in your lap to help her adjust to being closer to the chair to show her that it's not scary
Karen
We are a part of a grief share group with a very young Mom who lost her Hubs just prior to discovering her pregnancy. The little one has grown up around Nick and his chair. She LOVES riding on his lap in the chair. Perhaps your grandchild would like to ride WITH Grandpa!
marge henderson
hello we are so upset my 56 yr old son was diaganosd with als. My mom died at the age of 68 from als we very sad .Pls get back with me with advice. thanks so much marge