Last week I was reading my copy of Momentum, quarterly magazine by the National MS Society (NMSS). It can be read online as well:
I got very excited when I saw that there was a survey about what it is like to be a parent with MS. I jumped online and pulled up the site address, which is nationalMSsociety.org/parentwithMS, and began filling out the survey. As I continued through the survey, I became disappointed that the questions where mostly directed to people with MS that were deciding to have children AFTER diagnosis along with new parents....neither of which applies to me. I was hoping the survey would include questions of what it is actually like being a parent with MS. Questions such as "Which of your symptoms do you feel has the most impact when parenting your kid(s)?" or "What kind of tools have you found to be the most helpful in talking with your kid(s) about your MS?", etc.
My disappoinmtent in this survey prompted me to search the web for tools that help parents deal with MS & parenting.
What I found:
1. The NMSS has a quarterly magazine FOR KIDS and it can be mailed to each child that you have and can be found online: http://www.nationalmssociety.org/multimedia-library/kids-keep-smyelin/index.aspx
2. The NMSS has a 15 minute video called "Timmy's Journey to Understanding MS" that can be obtained from your local NMSS chapter, info on their website: http://www.nationalmssociety.org/multimedia-library/videos--dvds/timmy’s-journey-to-understanding-ms/index.aspx
3. A book called Multiple Sclerosis: A Guide for Families by Rosalind C. Kalib, Ph.D., description on the NMSS site: http://www.nationalmssociety.org/multimedia-library/books/a-guide-for-families/index.aspx
4. Two websites to support parents w/ MS & have forums: Moms with MS http://www.momswithms.com/ and Parenting With MS http://www.parentingwithms.com/index.html
5. Web Resources from the Multiple Sclerosis Resource Centre: http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1077 (Check out the booklet you can download, it is awesome)
6. Video that gives advice & talks about parenting with MS: http://www.youtube.com/watch?v=V93TG_0LJiA
Two years ago when I did a search online, I didn't find as many things so I'm glad to see that there is more available. However, I'm still disappointment that there isn't even more...especially since MS is considered a "young disease".
For me, my children and I have spent the last two years trying to find the right balance as a family for all of us as we have dealt with my diagnosis. Our situation is different than many....we only have each other....no family or friends that are able to help on a regular basis. This leaves my kids to be the ones to do most of the chores. I do the dishes, but we have a chart that lists the chores that they have. Each child has two rooms and their bedroom to be responsible for. Plus, they have learned to do the laundry since stairs are a big issue for me. Over the last 6 months, they have expressed frustration with chores, especially laundry. Last weekend we sat down as a family and had a discussion about my MS and the fact that they are important members of my care team. I hope that the discussion was helpful...even though it didn't seem like it when I asked them to get their chores done afterwards. I also reminded them that they earn points toward reward day (special day to redeem their points that we have every 3 months or so) for doing their chores. However, this reminder didn't seem to generate the excitement toward chores that I was hoping for. This has got me thinking....I am going to have to come up with some creative ways to help them not get as frustrated with the increased responsibility they have because of my MS....before it becomes a major issue. I did find something called "MS Journey Club" in one of the issues of Keep S'myelin and it sounded perfect....a support group for kids & families.Ugh...more disappointment...I called the NMSS and was told that the "MS Journey Club" is something that each chapter decides to do and none of them are doing it right now....grrrr! I think it would be extremely helpful if kids had a place to have fun & get support...I am going to be calling my local chapter to find out why it isn't being held and see if there is any way it could be....if there is enough interest.
Well, that is about all I have on MS & Parenting for today....