Newly diagnosed - what to tell small children?

We have tried to explain to our children that you cannot die from MS, but our 6 year old quicky saw through that. We now talk about the type of symptoms to expect, and what happens to make mom better. Our 6 year old still gets very upset with mom's symptom flare ups (recently had a toe lock up due to spasticity and son was crying). We have tried to go to local family friendly MS events so our children can see others with MS and have some idea of what it looks like and that people can still survive. We found a book at the library on various neurological disorders and read that too. I don't know that he understands it completely, but our approach has been to error on the side of too much information rather then too little. Our 3 year old doesn't seem to phased by anything. I went to a care giver support group locally and met a woman with a teenage daughter who has also sat for the kids - I'm not sure if this helps or not, but at least they can talk about if if they want and both understand each other.

Here are a number of resources I found with a quick search:

• MSIF
• MS Society of Canada
• NMSS
• MSAA (Mommy's Story)
• MSF (search for "child")

***
Art Mellor, Accelerated Cure Project for MS, art-msnews -at- acceleratedcure.com

I have never told my children. They were 5 and 2 when I was diagnosed five years ago, too young to understand more than a basic explanation. However, I have atypical MS with tiny exacerbations and mild symptoms (comparatively) that are unlike most folks'.

Although they are old enough now to tell them, I'd rather wait until I absolutely HAVE to tell them (a strategy I wish I'd used with my mother!). When necessary, I say that I need to take a nap or that my legs aren't working so well or that I can't take the heat: they seem good with that. I don't want to worry them unnecessarily: if I can wait until they're in their teens to tell them, I think it is the best way to show them that MS is not a death sentance.

Ironically, but not in a funny way, it's sort of like the disease itself--it's different for each person. How well do you understand your kids and their personalities? Are they curious about many things, or do they mostly focus on few things that interest them? Do they get anxious outside of a certain comfort zone? If they're VERY young, then the biggest problem would be having the cognitive ability to fully grasp what you are explaining to them. You could read many articles and websites, and take all kinds of advice. But, it really comes down to how much time you've spent with your children to really understand their personalities and idiosyncracies. It would be difficult to scare your children with the disease, unless your partner is screaming in pain or something to that effect. The more you talk with them, and ask them if they have any questions, then the better they will eventually come to understand the disease--because you can see how they phrase their questions, and the context they use, so you can better frame your explanations. Most kids are just really curious about so much, and they haven't had their minds cluttered with extraneous adulterated stuff. So keep the lines of communication open, and they'll understand. For a little help . . . you could first try asking them if they ever wonder why your partner does certain things, or acts certain ways, sometimes. That will easily lead them into a conversation where you can see how the "wheels" are turning in their heads. Child psychologists, or hospice care professionals, can many times help with intervention. That might make it easier, and take some of the burden off you.

-Christopher

Sheryl,

I was diagnosed in October 2007. I am married and have four small kids ages 12,10,8,and 6. I told them that I had something that sometimes will make me tired. Their first question was if I would get sicker or could die. I told them no. My older daughter has alot more questions and needs more answers. I have not told her the official name because I am worried that she will research it on her own. They all know I take a shot once a week but I dont think it bothers them too much.

I wanted to let them know something but not everything. It seems to be working well as long as my symptoms stay mild.

I hope the info helps.

Jim

I just learned about this resource yesterday:

http://www.directhealthmedia.org/about_eng.html

DVD: "talking with your children about multiple sclerosis: a place to begin"

I was recently diagnosed in May 2008. I choose not to tell my 7 and 9 year old just yet. Since I will not be starting my medication for another week, I didn't think it was necessary to explain my medical condition. I am very fortunate that my relapses are more annoying than disabling. When I get tired I tell my kids that "mom needs a nap", and they seem to be ok with that. My son is a very sensitive person, so I'm a bit more cautious about telling him. However, I do want to be honest with them. I don't want to feel as if I'm hiding something from them when I have to go off every week to give myself a shot. I want my children to know that they can always be honest with me; no matter what. So what would I be teaching my children if I wasn't completely honest with them?