Facing ALS at any point in life is incredibly difficult. However, when someone with young children is diagnosed with the disease, there are a host of additional concerns. Parents with ALS not only have to deal with the implications of a debilitating and fatal disease for themselves—they also must consider how it will impact their children and how to continue to parent as their symptoms progress.
To support their patients facing these incredible challenges, the Sean M. Healey and AMG Center for ALS at Massachusetts General Hospital (MGH) has established the Daniella Lipper ALS Parenting At a Challenging Time (PACT) program. PACT provides resources to help parents and grandparents with ALS, along with their partners, support their children or grandchildren to cope with the disease. Through the program, people receiving care at MGH can work with child psychologists to discuss how to talk with children about ALS, to help children adjust to changes in a parent’s functioning due to disease progression, and much more.
Resources for Everyone with ALS
While these services are only available to patients of MGH’s Healey Center, the ALS PACT Program team has developed a series of additional resources that anyone can access and freely download. These include handouts about some of the most important topics that they discuss with parents and grandparents, including:
These resources are also available in Spanish on the MGH ALS PACT program’s website.
In addition to the patient resources above, ALS multidisciplinary clinics and mental health professionals can access specialized resources to support their patients facing these challenges.
To discuss some of the guidance that they provide for people with young children who are navigating ALS, we spoke to Drs. Cindy Moore and Archana Basu. (Since this interview was conducted, Dr. Basu no longer works with the program.)
What are some of the biggest challenges you see for parents of young children dealing with ALS?
Dr. Archana Basu: The cognitive development and emotional development of younger children requires that the information that is shared with them need to be tailored, relative to older adolescents and young adults. When we think about young children, it's important to think about very specific age ranges, because their development is so dynamic.
For infants and toddlers, they're still developing their language abilities and can’t typically express themselves with the same range of words that a preschooler can. But they can pick up on the emotional climate in the house, especially their parents’ or caregivers’ emotional state.
They’re also affected by changes in their routines. So, when we work with families, we try to think together with them about ways that they can maintain consistency in routines, be it around mealtimes or sleep or consistency in caregivers—whether it is, parents or daycare providers and so forth. Stability and predictability are helpful for everyone, but they are particularly important for infants and toddlers.
For preschoolers, children three to five years old, that's when we see a lot of dynamic development in verbal expression, language use—lots of questions and curiosity. They are often a lot more aware of the changes in the household. It is important to remember that children at this age are still developing the capacity to make sense of the world beyond their own direct experience. They’re still learning to see things from someone else’s perspective.
Most children have probably had a cold or heard of cooties or germs, so they think about illness in terms of these infections. So, it’s hard for them to understand something like ALS. So, when we work with families, we try to bring this up proactively and really try to think together about, what are some concrete explanations and examples that can be used? What might be some sources of misconceptions or confusion?
Mom might say something like, “This is not like catching a cold. I'm not going to catch it from dad the way we can sometimes catch a cold.” I think children also need repetition. They need some repeated examples, to think about what the illness is and that it’s not going to go away the way a cold or a fever might.
By school age, six years and older, children are starting to develop the ability to understand cause and effect. They are more curious about illness and about why changes are occurring. They may have a lot more questions but might not ask them if they aren’t encouraged to do so. They are able to understand simple, concrete explanations of how ALS can affect different parts of the body and a parent’s physical functioning. So, we work with parents to develop language they can share with their children to explain changes they notice in their parent.
Why is it so important for parents to talk to their children about ALS?
Dr. Cindy Moore: Children tend to adapt to changes in their lives better when things are explained to them in an honest and age-appropriate way. Parents often feel that shielding children from difficult information is the best way to protect them. But there's really no way to prevent children from noticing the changes that accompany ALS. So, not talking about it doesn't keep children from worrying. It just means that they're worrying alone.
One of the key times where communication can be a concern is when parents are anticipating sharing a new diagnosis with children. We encourage them to think about what they think their children may have already been noticing, and then to share an explanation for those changes that will make sense depending on the child's developmental stage.
It is important to find some way to name the illness. Some parents are comfortable calling it ALS, while others may prefer to use other descriptive terms. But naming the disease means that parents can talk about both what it is and what it isn't. For example, as Dr. Basu mentioned, it’s not contagious like a cold—children and other adults can't catch it. It’s also not the same as a hurt muscle that will heal with rest.
As the conversations continue over time, we try to help parents anticipate and prepare children for changes that are likely to happen—new limitations of function or new assistive equipment or devices that are going to be in the home. And then, also, to prepare children eventually for the end of a parent's or grandparent’s life.
How do you advise parents about dealing with the mobility challenges that come with ALS?
Dr. Basu: Sometimes, it's about going from large scale movements to smaller scale movements. If a parent can't be outside running around in the backyard in the same way, it may be that there are smaller scale movements that can still be possible and that keep the parent actively engaged with the child. If it’s not playing Legos with a child, it could be just watching the child play Legos and having a conversation about what the child is building.
I think parents sometimes underestimate the power of keeping a child company as they are doing self-directed play and engaging around it, talking about what they're noticing the child doing. Just having a parent present as the child is playing is incredibly powerful for children in terms of building a strong connection and a sense of being loved.
Dr. Moore: The bedtime routine is another important place where, often, parents and children feel connected. You may not be able to do the bathtime anymore, but is it still possible to read a book to your child? Or, for a parent with more bulbar symptoms, if you're not able to read any longer, is there a way to have your child start reading to you?
I think sometimes parents are so distressed by the losses that they're experiencing and the perceived impact on their children that it can be hard to think about what's the next best thing or what's something different to try, that might not be perfect but could be good enough.
ALS is a terminal disease. How do you advise parents to talk to kids about death?
Dr. Moore: Anticipatory grief means grief in advance of a potential loss or impending loss. People can experience many of the same painful emotions as they anticipate a loss, as they do after a loss, but without the same levels of support. In some situations, the period before a loss is even more difficult for children's adjustment than the period after a loss due to the stress of uncertainty and daily unpredictability. It's important for parents to be aware that their children can experience anticipatory grief and to talk about loss, despite it being really difficult to bring up.
The reality of ALS is that there are losses all along the way. People are anticipating the loss of the parent at the end of the illness. But the functional changes are also losses that accumulate. Children and families can get used to one change, and then there's inevitably another and another and another. So, part of the grieving process is adapting and coping with those ongoing changes as well. I think with all of that, parents can help children by being willing to acknowledge the losses, to name them and normalize feelings like sadness, worry or anger.
Parents can also be helpful by looking for opportunities to give children control and choices, finding ways to keep life as normal as possible, and thinking about what kinds of outside support will help to keep children engaged socially and academically.
Of course, another side of it is that parents can feel very keenly that time is short, and that it's so hard to imagine not being part of their child's life as the child grows up. Parents may want to share all their life lessons in a short period of time. Part of our work is trying to help parents recognize that ultimately, that is not possible. Children develop gradually and learn things gradually. A child may not want to spend every possible free minute with the parent, and it’s important that they have the freedom to maintain their own interests and relationships. When families can talk openly about time together being precious, it can be easier to find a balance that works for both adults and children.
Another layer of preparation is helping parents feel comfortable talking about the future, addressing worries, and talking about the worst-case scenario if it feels like a child is thinking about it on their own-- listening for signs that a child has concerns about the future and then being able to begin a conversation about that.
That can be really hard. It takes a lot of courage, but it can often be important for a child to have the invitation to talk about it, because they may not want to bring it up themselves. It’s important to give kids choices, to ask them: “Is there anything you want to be saying or to be doing with this person? What matters to you here?”
We may also talk with a parent about legacy leaving, which is more about helping a child have mementos of love from the parent after the parent is gone. Again, that takes courage on the parent's part to be able to think about that. But it can be a powerful gift for children to have later as a way to feel connected to a parent.
You can find more information about the ALS PACT program on the MGH website here. If you are newly diagnosed with ALS and are searching for additional resources, you can find them at als.net/newly-diagnosed/.
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