Sunday, March 27, 2011

butterfly effect MS parenting

Almost 20 years ago, a fellow pre-school parent introduced herself and asked if I could help her understand living with Multiple Sclerosis as a family. She was a psychologist treating a 35 yr old patient and felt her patient’s childhood and teen years raised in a family decades earlier with a parent with MS could be a factor in her patient’s adult mental health challenges. There were no professional resources on this topic.

So it seemed providential while preparing this second part to the butterfly effect entry to read in the Washington Post,  A parent’s multiple sclerosis can take heavy toll on children 

“As a teacher, Levenson came across other children who had parents with MS and who reminded her of herself at that age. She said they were “battling feelings of isolation, embarrassment and anxiety, and the overwhelming sense that no one else understands.”

The butterfly effect of a Multiple Sclerosis diagnosis impacts more than caregiving, before all else - children.

“MS can be a very frightening thing for anyone to deal with in the family but especially for children …

… it can be physically demanding on a child if a parent is unable to walk properly and has to use a wheelchair ...

… If a parent can’t feed themselves very well the child maybe brought in to help … embarrassing and almost a role reversal really with the child becoming the parent and the parent becoming the child ...

... Cognitive problems in a parent can be very frightening. If a parent isn’t able to think properly or plan ahead … he or she can behave in a way which … does not appear to be in the best interest of the child ...

... There are many, many emotional stresses upon children. There are positive gains for children of MS and all the research shows that it isn’t necessarily a bad experience at all in the long term. Just as many, if not more, children are coming out of this experience having benefited from it in a strange way than there are actually who have been hurt by it in some way.” MS and Children (2008) from the Multiple Sclerosis International Foundation

Caregivingly Yours, Patrick Leer 


  1. After having read the article in the link, Patrick, I would think telling the kids and dealing with it as a family sounds better in the long run than trying to "keep" it from the kids, who usually know something is "different" anyway that could cause more anxiety down the road. I think dealing with being different is easier to do starting at a younger age than trying to deal with it in some of the turbulent pre-teen years, etc. Kind of like adoption; better to tell them earlier even though they might not understand the full story/details, but the word becomes part of their vocabulary like MS would if talked about earlier than later.

    I think kids want to feel love, secure, know that they will be cared for and if parents can portray that in addition to telling about the parent's MS, I think it will strengthen the family unit!

    Somehow I think you guys always made it a part in your family and learned how to "make it work" even in the midst of struggles and difficulties.

    (did I confuse you too much about the journals? sorry, didn't want to do that; I just am making that one private, the other one I set up is just in case people want to know when I post to it, I'll say "new entry posted" with the date and leave a link that people can access if they want. Added you as a follower for that one that is going private come Friday so you can access it when and if you want :)

    (hope I didn't confuse you more :)

    take care of yourself!!!!!


  2. Most interesting how often this happens, Patrick. No matter how much it may seem a child is being stressed, the end result seems always for the better, children grow up very aware of the pain of others, they have empathy and use it. I'm not speaking from a vacuum, I've seen this role reversal create very decent humans. Thanks for sharing.


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