How do you tell your child you have MS?

[pocoapoco]

I'm researching how people have told their child they have MS. Can you all share your story? 3-8 year olds, Teenagers? My kids are getting use to it by now. I'm wanting to get info from my peeps from MS world. Can you help? Thanks

[Sequoia]

I've moved your thread to the "For the Parents" forum. That's where your earlier thread on the same subject is.

When we moderators move a thread to a more appropriate forum, we leave a redirect notice in place for the first 24 hours.

[Kraheera]

I sat my seven year old down outside, so we had some privacy. Then I explained that mommy is sick, which is why I'm so tired and forgetful all the time. She asked if I was gonna die.

I said "No sweetie, it isn't that kind of sick. It will just make things a little hard once in a while."

She's adjusting pretty well. Once ina while she asks me if my brain is doing ok, which gets me blinking and staring at her for a moment. Then it clicks that I must have forgotten something, or look like I'm about to fall over. LOL

[isamadjul]

I have 4 kids

When I was dx only 1.5 yrs ago my kids where 7, 8, 10,11...I think LOL!

My hubby and I looked at the nationalmssociety.org and found that they can help you with some info. We waited to tell our kids till we received the DVDs (which I found a smidge funny...and not so helpful) and the work book and what not. We found that this not only helped us with a way to tell them, but also gave them something to look at so they could ask us at anytime any questions that might pop up.

Every now and again they pull the stuff out and read. I feel it gives them a better understanding then I could tell them. Its sometimes better to talk to them and then let them read it also. Gives them time to digest the info. The MS Society also sent info that I could pass along to my dad who had many questions but didn't know how to ask.

So my advice is call the society, they have advice for many ages!

good luck

isamadjul
(allyson)

[micheledsullum]

How do you tell your children you have M.S.

I have found that the more my children understand about M.S. the more secure they feel. Or maybe I'm projecting since I certainly feel more secure as I aquire new knowledge and understanding of my condition.

Here is how I told my kids initially (one was 14 and one was 4:

The 14 year old: I downloaded a picture of the nervous system, a picture of a nerve with myelin deterioration, and a picture of an MRI scan of a brain with M.S. I sat down in her room and said that I wanted to explain why I was having so much trouble physically and what all of the medical tests had shown. I explained that I had a disease called Multiple Sclerosis which means "many scars." I explained that the scars were on my nerves. We looked at the picture of the nervous system and I showed her how nerves run from the brain, through the spine, and into the rest of the body. I explained that nerves carry signals from the brain to the rest of our body, helping our muscles work, helping our organs work, and carrying pain signals when we hurt ourselves. Then we looked at the picture of the nerve with myelin deterioration and I explained that myelin protects the nerves and helps them work. I told her that when a person has M.S. the myelin around their nerves has been destroyed and so the nerve develps a scar to protect itself. I explained that scarred nerves don't work as well and also sometimes send weird signals to different parts of the body making them hurt, or twitch, or just not work properly at all. I showed her the MRI of the brain with M.S. and showed her the little spots that mean there is a scar on the nerve. I took my 10 pound ankle weights and strapped them to her legs and had her walk around, then I did the same thing with her arms. We talked about how much harder it was to move that way and how much tireder it would make a person who had to spend their days like that. I told her that our lives were going to change somewhat because of my condition but that nothing would ever change my love for her. I told her that if I couldn't do the same things we usually did together we would find new things to do that would be easier for me and still fun for her. That took care of the 14 year old.

The 4 year old: She is a particularly sensitive child and kept track of me as if I was a possession she was afraid of losing. Until I was diagnosed and we figured out the right medications for me, I was short-tempered, exhausted, frighened, and in pain constantly. She picked up on all of that and became panicked herself. She had trouble sleeping at night (as did I) and we used to lie in bed together watching Maggie the Ferocious Beast and eating Tings. For a brief time we "flipped" roles and she tried to mother me and take care of me--but she also feared losing me and became extremely clingy. Once I knew that I had M.S. and my symptoms were more under control, I realized what she was going through and took steps to help her understand. First, I sat her down and told her that I was going to explain why I had been so cranky and crazy the last couple of months. I used the same picture of the nervous system that I had used with my older daughter and showed her what nerves were and explained how they helped the different parts of our bodies work and pain signals when something was wrong. I circled the spots in the picture where I knew I had lesions and told her that I had "boo-boos" on my nerves in these places and that they would make my nerves do crazy things sometimes, which would make my muscles do crazy things too, like dropping things, bumping into things, tripping over nothing, and sometimes making me feel pain in my head, my hands, and my feet--even though those parts of my body were perfectly fine. I explained that sometimes they nerve boo-boos would make me forget things--even really important things--and that sometimes they would make me really, really tired so that I would need to take a nap. I told her the name for nerve boo-boos was M.S. and that many people besides me have them. I told her that I had been really scared for the past few months because I didn't understand the crazy things my body was doing, but now that I understood it, I wasn't scared anymore and that she didn't need to be either. I showed her my medicine and explained that it would help keep me from getting more nerve boo-boos and that as long as I took it like I was supposed to, I would be fine. I also told her that most people do not get M.S., that it wasn't contagious, and that she didn't need to worry about getting it from me.

After our talks, my kids seemed satisfied, though they asked many follow-up questions in the weeks that followed. They were more understanding when I was tired and instead of being scared when I would experience sudden pains, drop things, or say sentences that made no sense, they would simply ask, "Was that the M.S.?"

Now, 5 years later, they simply accept it as part of me, just as they accept other facets of me such as my hair color, my love of reading, and the fact that I prefer to capture mayflies and set them free rather than swat them dead.

I wish you luck with your family. If you ever want to talk you can contact me at ** Email address removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to UserCP > Edit Details**