No one should suffer ALS and its far reaching effect, worst of all children, yet they do. They suffer at the side of the afflicted parent, taking in stride the new normal. Offering to help in anyway possible, if young. Pre-teen and teen are a different story; it depends on the dominant personality traits, i.e. empathetic, disruptive, or apathetic. Young adult and adult children will also vary their responses based on various factors and be involved or incapable of coping.
The truth is, a diagnosis of ALS will undoubtedly challenge the entire family.
Soon the new normal will be; mom can't walk, dad can't speak, grandma can't hug anymore. The children continue to grow and adapt to helping care for their loved one. Taking in stride the changes ALS brings everyday.
We as parents obviously wish we could spare them the eventual outcome, but until there is a cure, it will come. The next version of normal will be the loving memories you and your children made.
Don't ever shortchange your kids, be honest with them. My children have been very receptive to helping as I progress. I know I joke about them but they have stepped up as needed. I often read threads by parents sharing their heartwarming anecdotes of how resilient their little ones are. But it also breaks my heart knowing the inevitable outcome.
Just like it tears me up to think of my not being there fore my kids. I love my kids more than I can say.
So take every opportunity to remind them it's ok to worry, cry and even be angry from time to time. Then tease them the way you always have, lol.
If my kids are any indication of others, they don't give an inch. I've also been told, "dad you can't play the ALS card all the time". They definitely keep it real!
TJO
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