Talking about multiple sclerosis with little kids


I'm going to start by saying that I am not an expert in child psychology and this piece is not based on any formal research. I am a mother of young twins and I am living with multiple sclerosis.
 
Like most parents, I am doing the best that I can. Some days I feel confident that I am doing a great job at raising my children. Other days, I wonder how it is possible that the majority of adults emerge from childhood as functional, capable people – I question everything, convinced that my every move could result in some sort of emotional impairment of my girls in their later lives. 

Mostly, I hover in between the two extremes, trying hard to portray and instill confidence in my girls during the day and replaying different interactions at night while they are sleeping, wondering what I could have done better.
 
However, one thing that I am proud of in my parenting is how I have handled the matter of my MS. I am not saying that my approach is for everyone, but it has worked out for our family pretty well.
 
Ever since the girls were about two and a half years old, I have been fairly open about my MS and how I was feeling. Of course, this was tempered and came across in those early years as "Mommy is a little tired and could use a nap. Does anyone else want a nap?" or "Wow. Mommy's feet feel a little funny right now. Let's sit down for a minute while those silly feet have the tingles."
 
Now I say things like, "My body is telling me that I need a rest. Anyone else?" (Still no takers.)
 
I did my best to explain the mechanism of MS to my girls when they were about four. This resulted in them telling people, "My mommy has a sick in her brain and has to hold the railing when she is on the stairs." This is (clearly) a work in process. They are almost seven now and I am able to explain the nervous system and demyelination a little better to them.
 
The girls are also aware that I give myself injections. There were some occasions when they were tiny that there was really no choice but to inject in their presence – it is not advisable to leave crawling or toddling twins alone for even a couple of moments. They didn't really pay attention then and don't really find it that interesting now.
 
Here is what I would say about my approach to letting my small children "participate" in my MS:
 
I make it a fact, not a drama. By this, I mean I tell them what I want to share in a matter-of-fact way, rather than an emotional confession. I don't think it's a good idea to set the stage by sitting them down and starting with "There is something that I need to talk to you about that might sound a little scary, but don't worry, I love you." Big announcements like this can make adults very nervous, kids even more so. I tend to share medical news in a low-key manner and then let them ask questions.
 
I use examples that they can relate to. Clearly, with small kids, throwing around medical lingo about paresthesia or ataxia will not get you very far. Instead, I gently rub a comb on the bottom of their feet or have them try to balance on an uneven surface to explain how I feel much of the time. They remember this and tend to be sympathetic when I bring it up later.
 
I remind myself, they are my children, not my spouse or friends. Although I say that I am honest with my kids about my MS, this is not entirely true. They get the rated-G version where everything will be okay and there are just some extra challenges that we have to deal with as a family. They don't know that when I say that I'm tired that I really mean that I feel nauseated and incapacitated from fatigue. Nor do they know that some days I get angry at the world and have my own childish "it's not fair!" fits. I can let all of these emotions out with other grown-ups in my world, but I truly believe it's important that kids be allowed to have childhoods that are as worry-free as possible.
 
Again, let me reiterate that this is how I have brought the fact of my MS into our family. I would love to hear from those of you who have done things differently, or similarly, and what the results have been. 


Resources for children & teens:
  • Keep S’myelin
    Colorful newsletter for children, 5-12. Articles, interviews, games, activities, and a special pullout section for parents. (Online version has interactive games.)
  • Someone You Know Has MS: A Book for Families
    For children, 5-12. A story about Michael and his family explains MS and explores children’s fears and concerns.
  • When a Parent Has MS: A Teenager's Guide
    For older children and teenagers who have a parent with MS. Discusses real issues brought up by real teenagers. 

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Julie

Julie Stachowiak, PhD

Julie is the author of the Multiple Sclerosis Manifesto, the winner of the 2009 ForeWord Book of the Year Award in the Health Category. She is an epidemiologist who is also a person living with MS, Julie has an in-depth understanding about current research and scientific developments around MS. She also has first-hand knowledge of the frustrations and anxiety surrounding the disease, as she had MS for at least 15 years before receiving a diagnosis in 2003 and has had several relapses since her diagnosis.

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