Talking to Kids about Multiple Sclerosis

As moms who are diagnosed with Multiple Sclerosis this is something that we all deal with. There are of course variances in how and what we share of course too because we are all different. Some tips are published by various Multiple Sclerosis (MS) Organizations as well and will be linked to in this post. Here are some stories and resources compiled from moms on and off our site:

When my daughter asked me what MS was around age 4 I explained to her mommy has little squiggles in her brain that make her do funny things sometimes. She asked if they hurt, I said no and I could tell how much more at ease she was from then on when I was struggling.
-Heather

Another mom spoke of a program offered once where there was an informational session called MS Journey that had therapists and activities to talk to the kids about it in one room, and the caregivers/spouses/partners were in another room. There was a lot of advice and tips for talking to kids given and the adults were able to voice their fears and frustrations. Wouldn’t it be wonderful if this were offered regularly for all of us families dealing with MS?

Some places have some camps for kids too, if you are interested in this contact your local chapters of NMSS, MSAA, and MSF for information.

Pharmaceutical companies have some advice too, for example on MSLifeLines (Pfizer).

Here is one book that is available, written by a mom, Stefanie Lazai to help other moms talk to their kids. You can go to Benjamin and see the book online, and either listen to it, or read it aloud to your child.

Some other books available online as .pdf’s or to order:
Mommy’s Story (from MSAA)
Daddy’s Story (from MSAA)

For older kids they can read about MS and other conditions on this site:
http://kidshealth.org/kid/grownup/conditions/ms.html

Personally I don’t like utilizing these resources, mostly because I have very few symptoms and when I do they don’t usually last very long. I don’t want my children to worry. If anything does come up, I explain to my kids (who are pretty young) that my body is simply not working right, and that hopefully I will feel better the next day. – Kristin

Another great resource is from DoingWheelies.com by Jenn about Tips for Talking to Kids about Disabilities. It is not specific to MS but it is very very relevant for all of us to talk to our kids about this because whether they see it at home or not, it can help them understand.

National Multiple Sclerosis Society has this page set up for families as well: Family Matters.

Please share any tips or resources you have to share in the comments!

2014 Walk MS…have you joined?

We are well into the creation and fundraising of LOTS of Moms With MS Teams for the walk, if you click the NMSS Team link up top of this page you can see the latest numbers!

Have you started a team? How is it going with fundraising? What techniques work best for you? I have heard about sponsorship, asking family, giving things away, donating services that get sold with the profits going towards the walk but I am sure there is more so let us know!!

Walk walk walking at WALK MS 2014!!

Love Retweets…(Thanks Montel!!)

On a lark I just responded to a question that Montel Williams posted, in the response I posted the link to our National Team page and guess what?? He (0r his assistant maybe) retweeted it!!

I’m totally psyched, if you want to see it yourself it can be seen here: https://twitter.com/StrawberryTech/status/314457918693068801

While you are checking it out..make sure you see your team listed on our team page if you want to be affiliated with our National Team!! Let me know if you have one and it isn’t listed by posting a link to your team page in the comments below and I’ll see what I can do!