Explaining Multiple Sclerosis to Children

If you’ve been reading my blog for a bit then you know I have two sons, 13 and 7. I was officially diagnosed with MS when when they were 8 and 2 but I had been experiencing issues for so much longer.

How do you go about talking to your kids about MS, the future and changes that may happen? There’s no protocol to follow about informing your children about this disease. You want to prepare them but not scare them. You need them to know certain things (depending on what your own MS looks like) but also not make it look bleak.

For me, I have always told my kids up front what is what, I realized later that slowly easing into it would have probably been better. I like to have all of the information and possible outcomes and I assume everyone else does too. I didn’t think that through though because at the time I was in a whirlwind of information, my new reality and trying to figure out what course I was going to take. I was in crisis management mode.

My oldest was worried, he is less so now thankfully, and as my youngest grew I bought books on MS written for kids. It helped, there were words and pictures in front of them discussing the science of it and what it looks like for different people.

I am NOT being paid for this information, I just want other people with MS to know what I have found helpful.

  1. Sometimes, M.S. is yucky by Kimberly Harrold, this book is short and goes over the basics with illustrations that children can understand. In the back of the book there is a section for adults to read through prior to reading it to a child so they can know kind of what to expect from kids and questions and the best way to discuss it. (This book could be read to younger children, maybe even 3 years and kids you might feel will be overwhelmed with information. The illustrations in this book is a mom and child, medical people and does have a mom in a wheelchair)
  2. My Mommy Has Multiple Sclerosis (Gail’s Story) by Rebecca Clary, this book’s illustrations are animals, the mom is a giraffe and an elephant doctor. This book also discusses symptoms that may come and go and what it looks like. The author is a mom who has M.S. and in the back there is a kid friendly glossary.
  3. The Electrifying Story of Multiple Sclerosis by Vanita Oelschlager, this book is for older kids as it goes more in depth of the science and loads of different symptoms that are not addressed in the previous two. I would say 9 would be a good age for this book but my 7 year old has read it on his own and I previously read it to him, but he’s like me and likes all the information possible and asks lots of questions. This book is detailed but also simple enough that your average reader can understand. I am not even sure if this book was aimed at children, but my kids liked it for the details. I plan on using this book when I discuss invisible illnesses with my youngest cub scout den.
  4. MS Children’s Book by Zac Raasch, this book discusses MS as though it’s a monster. (MonSter), I know this is a way that some people address their MS and this would be good for those people. The book is easy to read and goes over the basics in a child friendly way.

All four of these books are good, my children found them helpful. I would say if the child is over 9 or 10 though just go to the third book as the other three may seem to young for them.

Have you found anything to be helpful when discussing this with kids? I am always open to new ideas.

 

The Difference Between Friend, Good Friend and Great Friend

I never thought of friendships as having levels. I have friends, two best friends (based on length of friendship and history) and acquaintances.

When searching online, there are only differences between “friends” and “best friends”. Based on what I read, I disagree with those. It discusses honesty, having your back, supporting you among other things, it also says if your best friends you talk every day. While I consider my husband one of my two best friends, and I do talk to him every day, my other best friend I do not talk to every day but I have known her for more than 20 years and I know that it will always be an easy conversation filled with love and support.

If you are my friend, I will do what I can when I can to support you and be there for you when you need me. To me, friendship is being honest, caring, helping and perhaps even doing things that make you happy even though there may be physical and mental consequences for me after because of my Multiple Sclerosis.

There is no difference in the type of friend I am going to be to you, I will be your friend, the only way I know how. There will not be any difference between a friend of a year and a friend of 5 years, there will be no difference. You will not get a regular friend one day and 6 months later a good friend and perhaps two years later a great friend.

I am not religious but there is one thing I follow, and they learn it in girl scouts too; treat people how you want to be treated. It’s simple, if you want your friends to be there for you, you start by being there for them. I am here for my friends, I will support and assist you whenever I can. It could be as simple as taking your kid to school for you because you have scheduling issues or being in your wedding.

No relationship can last if one person is constantly giving and not getting anything back. I do not mean material items, I don’t mean same level of helping either. If you need me to grab your kids from school because you are having a bad day that doesn’t mean you have to do the same thing for me. It could mean that when I want to talk or get an opinion you are there for me, being a friend.

It’s odd, I was told I was a “great friend” by a couple of people recently because I was in my dear friend’s wedding even though there were consequences for me after. Yes, I had to drive, yes, I had to talk to a lot of people, yes, I stood in the heat, yes she is my friend. That’s what friends do. I made adjustments to how much time I spent with people, I skipped the events the day before so I could be there for her. You know what, she appreciated it and she’s only going to have one wedding. Someone didn’t go to my wedding for a reason less than it having fairly significant impact on their person, when I look at my wedding photos I remember THAT, and they regretted it later.

So while my brain is tired, my body aches even two days later, I cleared my week following the wedding to properly rest to regain the limited mobility and brain power I had before. That does not make me a great friend, that makes me the kind of friend I think others should be. It didn’t even occur to me to not be there for her, it was more of trying to determine how much I could be there for her.

So here’s your heads up, if you are friends with me, you are going to get the whole me. There’s no difference in time, if I count you among the few friends I have I will be there for you whenever possible and however I can be. I hope you will be there for me too.

Do you think there are differences? Should there be?

 

Why They Need Moms in MS Treatment Commercials

A while back I was part of a study for advertising MS related medications. I think I’m the perfect participant because my short term memory is seriously messed up so I’m not likely to remember colors or wording unless it relates to me.

While looking at print ads I had to answer questions based on the information and photographs in each one. One was a couple going to an outdoor, grown-up party, one was an older couple walking on the beach and one was just a dude, at least I am fairly certain that’s what they were. Really, most drug ads are the same, unless they are targeted at kids you won’t see children in the advertisement.

The thing is, most people the companies are targeting, statistically, are mothers since there’s a 4 to 1 ratio of women to men for developing Multiple Sclerosis. The average age of diagnosis is around 35 years old, most women who are planning on having children start around 30 or younger.

When asked what I would want to see in an ad I told the person in charge of the study that I would like to see a mom playing legos with her kid or on the floor playing something else. I have kids, due to MS my fine motor skills are nearly gone so lego building is extremely difficult for my body and frustrating to my brain. I fall down frequently so playing on the floor with my kids is not something I risk because 5 concussions has taught me getting up from the floor can have you fall head first on to it.

I am less likely to go to an outdoor party at night because my fatigue and cognitive function are hindered more after 3 pm. When I see a beach in a commercial I assume it’s a hot one, not like the cool breezy beach of the Big Island in Hawaii, so I cannot see myself there because heat makes all my symptoms worse.

While having people running, riding bikes and other outdoorsy type activities is great because I am certain there are people with MS who want to stay active and do their thing; my goal is to get back a small semblance of my life before MS. I want to be able to hold a conversation with multiple people without my body shutting down the next day. I want to go places with my kids like the zoo or the aquarium or trick or treating.

I hope in the future this will be a change for the better. I hope the companies listen and be a bit more inclusive in their advertising, plenty of people are marginalized with this disease already.