For those with young children

[ilovejesus]

For those of you with young children when you got your MS diagnosis, when did you explain it to your kids and how did you explain it to them? How did they react? Also, do you feel comfortable telling the parents of your children's friends that you have MS? I just worry that my child will be known as the kid with a sick parent. I just don't want him to have that association.

[mlissa67]

I told my children right away because I was worried they might hear me on the phone with family. I didn't want the added stress of my children finding out in a manner that wasn't coming from me.

My youngest didn't really understand, but the other 2 still at home were upset, they asked a lot of questions etc. with all the appointments I've had along with 2 hospitalizations, in hindsight I'm happy we did it this way especially when the Air Force retired me early, that would've been even more confusing for them had they not known.

We do not make a point of telling their friends parents, it's really none of their business, but that's just how we feel. I'm sure my youngest blurts it out however, no one has asked. This is certainly a personal preference and you'll figure out how to handle that.

Good luck.

[aitch10]

I got my diagnosis before I had my kids so they'll never know me without MS, but hopefully they'll see it as a (minor) part of who I am.

And I'll tell anyone who asks that I have MS, including people at school. I definitely worry about them being teased for having the "sick" mom, but we'll just have to cross that bridge when we get to it.

[MyGirlsMom]

Hi! You didn't say how old your kids are, but mine were 8 and 5 when I was diagnosed. The NMSS has a little cartoon video and the Keep Smilin' magazine tat they can receive. We decided to tell our children because kids usually sense things anyway. We shared as much as we felt appropriate by age. My kids now even help me pinch the hard to reach places for my Copaxone injections. I feel it is healthy to share and now that they are tweens, they are sharing their struggles with me and my husband.

[naphappy]

My three kids were not little little when I first began testing and got the Dx. My kids were 12, 9, and 7.

I just had a talk with them and let them ask all the questions they had. We have always addressed other questions as they came up.

My kids were familiar with MS- I am the 4th in our family. It was important for all of us to understand the advances in treatments that are currently available.

They know and remember their grandmother and how she struggled. I wanted them to have the assurance that things are different now with this disease.

Heredity is a big concern here and open lines of communication has helped with alot.

My oldest is 20 now and we still address concerns as they arise.

Take Care

[SNOOPY]

For those of you with young children when you got your MS diagnosis, when did you explain it to your kids and how did you explain it to them?

My children are no longer young, they are 21 and 23 years old.

I was diagnosed before having children. My children grew up with this disease without even knowing it. We had decided early on that telling our children about my MS would be put off until absolutely necessary.

By the time they were in middle school questions started about why I do or don't do certain things. It was at that point we explained MS to them. We kept it very simple and short and allowed them to come to me if they had any other questions.

Also, do you feel comfortable telling the parents of your children's friends that you have MS?

I never felt the need to tell parents. If the parents were also friends of mine then it was mainly based on 'as needed.'

I just worry that my child will be known as the kid with a sick parent. I just don't want him to have that association.

You are over thinking and worrying about something that more than likely will not be the case.

My children never had any experiences to your above quote.

My children told some of their friends and some they did not. When my son was 16 and got his drivers license he asked if he could have one of my MS magnets to put on his car...I proudly said yes. He has also participated in a MS Walk.

In High School my daughter was in choir. I would go to her concerts without any mobility aid. She had some of her peers ask why I was coming to a concert drunk or why is your mother using a HC parking space

My dear mouthy daughter would usually not explain (those were peers that she didn't consider friends) and simply tell them off in her teenage way

[Alicious]

My kids were 4 (twins), and I did not tell them. A few months later, one saw me doing a shot, which scared him, so we had a talk. They know at one point my hand wasn't working, so I told them I take the shots to keep my hand working. I realize that is simplified to the point of inaccuracy, but the point is to ease them into this and keep them feeling safe.

Just yesterday, my now 6 year olds asked me *how* my hand stopped working, so we discussed the very basics of nerves and my body attacking itself and how this happens. I reassured them that we don't think this will ever happen to them, and that I am OK. (Thankfully, so far, I am.) I'm all about age appropriate information as they need it.

As for other parents knowing, a few of their school friends' parents know and it's never been an issue. At all. Others don't know; it's not something I feel any need to disclose. So far as I know there is no stigma for me or for my children.

[ilovejesus]

Thanks so much for sharing your experiences with your children. My son is definitely asking more questions lately and I try to keep answers very simple and age-appropriate.

Thanks so much for sharing. I really appreciate it.

[CaroleL]

My children are 30 and 31 but I have young grandchildren. 6yrs, 2yrs, and 10 weeks.

My 6yr old is like my own, and then some. We were always very close. Last October her half-sister passed away. She is still having a difficult time.

She so misses our walks! Whenever we were out, she insisted on being the one to push my wheelchair. People always smile when they see her. From the front, it looks as though my wheelchair is moving on its own, they you can spot her little head behind me.

When I started spasming and jerking, she was horrified. A child is scared of losing someone they love. We constantly reinforce the fact that grandma is sick but she is not going to die.

A child needs to talk about what they are going through. Our families are also affected by our condition. We don't always realize how much.

Kids should never be embarrassed because a parent is ill, or jerks and spasms. I like HunterD's signature: "There is no normal, only life."

Speaking to the child's teacher is a wonderful place to start. My granddaughters teacher told the children when Jasmine was having a hard time. They had age-appropriate discussions in class.

Now, when Jasmine is playing at recess, she is free to talk with her friends and she is understood. She doesn't feel so alone. I think it's important for children to be able to discuss their worries. They don't have forums!

We have nothing to be embarrassed about, nothing to hide. Our illness makes us appear different, it is what is is! Children who laugh at your kids are bullies and should be reprimanded.

[lorib]

I had both of my kids about 4 years after my diagnosis. My daughter is now 4 and my son is only 9 months. My kids are way to young to understand, so what I tell my daughter is very age appropriate. She knows that mom is tired a lot of the time so she understands if I need to take a break and rest. She gets a kick out of helping me with my shots (I'm on Copaxone). I feel like when it's time for her to go to the doctor I can say it's no big deal getting a shot; mom gets one every night!!

In my opinion, the only people who need to know I have MS are the people I may ask for help or should be aware in case something happens. My everyday symptoms aren't really noticeable so only people close to me know.

Use your best judgement. Make sure you are comfortable with what is going on with your body so you can talk to your son and he won't feel uncomfortable with you illness.