[andy2006]

I was diagnosed with MS within about two weeks of my son being born in 2006. I have not talked to him about MS, he just knows that "daddy's eyes don't work too well" or "daddy sometimes has difficulties standing up". Other people in our small community know about the MS (I never tried ti hide it, but only talk about it if asked). Anyways, I do not want my son to be unnecessarily scared but I also don't want him to hear about it from a kid a school whose daddy heard about from someone, etc., etc. Any advice or opinions on what and when to talk to him?
Thanks

[nemsmom]

Originally Posted by andy2006

I was diagnosed with MS within about two weeks of my son being born in 2006. I have not talked to him about MS, he just knows that "daddy's eyes don't work too well" or "daddy sometimes has difficulties standing up". Other people in our small community know about the MS (I never tried ti hide it, but only talk about it if asked). Anyways, I do not want my son to be unnecessarily scared but I also don't want him to hear about it from a kid a school whose daddy heard about from someone, etc., etc. Any advice or opinions on what and when to talk to him?
Thanks

I was diagnosed when my daughter was three and my son was one. I told them almost immediately. MSAA has a book about Mommy or Daddy having MS. It would be a great one to get, I've read it with my kids a few times and they ask me to read it over and over. I would talk to him as soon as possible. You know you can't sneeze in a small town without the whole town knowing.

I live in a small town as well and have never tried to hide it. I almost can't get out without someone asking about it. I was a waitress before I got sick. So I know a lot of the community and my hubby is a big part of our community. So if I don't know them, my hubby most likely does.

I have completely lost my train of though. Sorry, I was going to say something else but just can't seem to figure out what it was!

[TheSleeper]

Well it is a bit different with age I guess, my son was 15 and my daughter was 12 when I first became ill. I was totally honest with them throughout the process. They accepted the reality of it better than my now ex wife did.

My son is now 23 and my daughter 21, they understand that there are limits to what I can do or even attempt to do. They also understand that it is not a static illness, there will be progression and the situation is fluid.

I have always tried to teach my kids not to depend on anyone else to create their happiness. Develop and explore your own interests, happiness comes from within.

LOL, I am certainly not afraid to talk about it, it`s better than having people think that I am drunk all the time! and I save money by not having to buy beer!

[Dejibo]

my children were grown, but it was still hard. I agree that your child needs to be included in knowing what is daddys issue, so that he knows in his own world what is happening and it doesnt seem so out of control.

Speak to him on an age appropriate level. Many of us what to give too many details and little kids dont need or want them. As they get older and older they will keep returning with follow up questions. "why do cows make milk?" to feed their baby cows. Many kids dont want to know about world hunger, processing habits of commercial farms, or about pasteurized vs raw. As he grows he will come back with more.

Good for you! im glad you wont be leaving him in the dark. Even if you dont share with your neighbors you shouldnt leave your inner circle in the dark.

[SallyC]

Hi Andy. Kids are smarter and more attuned than you think and they worry about things too. My Daughter was 5/6 when I was DXed in 1975/6. Right away she wanted to become a scientist when she grew up, to find a cure for her Mommy's MS. She didn't...she became an Investment Banker instead.

Have that Family talk and let him be the judge when you have told him enough.

[ginnie]

Welcome to Neuro Talk. Children are so smart. They pick up on things so fast. I don't think any age is to young to gently talk about MS. My children knew very young, that I was having some trouble. My son grew up to be a OPTA, involved with the elderly. I think this gives your child a chance to learn compassion first hand. Love conquers all, and it will between you and your child. They know anyway, and softly spoken truths go a long way to ease a childs fear. I wish you all the best Andy, I will keep your family in my thoughts and prayers. ginnie

[KittyLady]

My girls were 1 and 3 when I was dx. Ive never sheltered them from this. I had one more child, a son, after my dx. They have been raised knowing, and therefore knew from early on that mama cant always do the things I wanted or that they wanted me to do. IMO, its best they know young, but in their language, age appropriate is what I mean. Someone mentioned the books from NMSS and its a great idea. They give you alot of info on how to tell the wee ones. Its very helpful and free.

[barb02]

I know my experience is not the same as having a child but children are really curious. I have a niece who is six and she has asked me frequently in the past two years what is wrong with my leg. I have never really known what to say. I have told her that I got sick when she was a baby and that it hurt my leg. Then she wants to know when it will get better and why I can walk better sometimes than others. She has always seen me use my cane and likes to use it too. She has also asked me if she could get it and I always say no.

[doydie]

I agree with the others to get a book to help you in telling him. He needs to be included in helping you so that he doesn't feel worthless when you aren't feeling well.

As far as when to tell anyone else I feel it is very important to be open to everyone. I would hate to be in a situation where i would lose my eyesight, all of a sudden become very weak and some one not know what it is. Plus as an RN I think education is key. We need to tell the world about MS. When I was diagnosed I was int he hospital on a neurological unit. The doctors thought I had a herniated disc. I found out the next day it was MS. I really didn't know anything about it. I asked my nurse for any books they might have. My cardiac unit was next to the neuro unit, she knew me so she didn't hesitate to let me read anything they might have. I was scared out of my whits when I read what this neuro unit had on MS. It was so out dated. Care was preventive for bedsores and aspiration pneumonia. Since I was in the hospital I worked in and I walked over to my unit daily everyone in the hospital knew I had MS by the time I went home which was fine with me. I was back to work within 2 weeks and worked full time for another 2 years. I loved every minute of talking about my MS and educating anyone I could.

[Sparky10]

Andy, you asked how to tell him. Here's an idea.

• Plug a lamp loosely in a wall outlet. (this is the brain's axons)

• Jiggle the cord to make the lamp blink. (this shows how your axons aren't connecting too good = you don't walk or see well at times)
• You get the idea - make a few other visible examples of everyday items.