Explaining MS to a 3 year old?

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Wonderfulworld
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Explaining MS to a 3 year old?

Post by Wonderfulworld »

My son is three now, he's very inquisitive and always asking why mammy?

He sees me take my injections each day, vitamins and meds and he hasn't really questioned it much, I just said it's to keep me well. Recently we were out though, I had a good day and decided to take him on the bus. Normally I drive because it's easier for fatigue and balance. We got on the bus and he kept asking me why I wouldn't go upstairs (because Daddy does!). I just said I couldnt' manage the stairs on the bus. Then when he saw another woman go up the stairs he shouted 'but SHE can manage Mammy, she can manage the stairs!!'. I just said, well I can't. More why's but I just kept saying, 'I just can't'.

But it has me wondering, how early have the rest of you parents said 'I have MS' to your children? I am not sure it would be a good thing to tell him until he's older as he is full of questions about 'how do you die' 'why do people die' 'do they die when they get sick' etc etc. so it might worry him that if I'm 'sick' I might be about to die!
Anyone share their 'I have MS' stories with your children?
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Tecfidera, Cymbalta, Baclofen.
EPO, Fish Oils, Vitamin D3 2000 IU, Magnesium, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle, Melatonin.
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leetz
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:)

Post by leetz »

Not an expert and please use your own judgement...just a suggestion...

"everyone is a little different and sometime's Mommy feel's good and sometime's Mommy feel's not so good"....

then you could easier explain the stair's like...mommy's leg's don't feel too good today...dunno just a thought..I know my strongest advocate is my daughter 15yr's old...and my best care-taker ever (she insist's)...found out at about 12yr's old sooooooo....she handle's it her best way but then again she is not 3 so I am a little bit stumped here..
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
Wonderfulworld
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Post by Wonderfulworld »

Hi Leetz
thanks for the reply, like your suggestion, it allows for variability without too much detail. That is so lovely your daughter is so good to you.

To be honest I don't intend telling him until he's MUCH older! I suppose it's just interesting to know what other parents did say when it becomes time for the chat about MS, but that isisn't now by any means. Sometimes I use the 'bad back' as an excuse for everything. The trouble is if I say something like 'my back's not feeling good today' I get about ten more WHYS immediately after! I am glad he is inquisitive, he has an active mind and will make a great investigator in whatever job he chooses in the future
:lol:
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Tecfidera, Cymbalta, Baclofen.
EPO, Fish Oils, Vitamin D3 2000 IU, Magnesium, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle, Melatonin.
shaight
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Post by shaight »

very difficult question that only you can answer and i wish you the best.

my take on this appears to be different than yours, but i will offer it as you posed the question. my children are 15 and 12 so i too am in a different category.

i would assume that if you told your child it was MS that was bothering you as opposed to a bad back he truly wouldn't know one was worse than the other. i would explain MS as something i have that can makes me (fill in with your common symptoms and shots) and let him know that it's going to be OK...be vague. if you stay consistent with MS as a cause of the issues that you are experiencing it 'may' be the easy quick answer for everything moving forward. then as he ages you can explain in more detail all along being honest.

again, best of luck.
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lyndacarol
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Post by lyndacarol »

Wonderfulworld – Somewhere in your conversation, very nonchalantly, you might mention that your problem is not something that he or anyone else can "catch" – with his limited medical experience, he may know that he can catch a cold from his mother or someone else.
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leetz
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:)

Post by leetz »

Hello...thank you for the response...yes, I am very blessed my daughter taking care of me...somtitme's though, I just want her to be a "regular teenager" u know?

Errrhhh.......I will continue to fight this disease to the fullest of my abilitie's (that are remaining)...Pray on how to tell your son...he (the Lord) will give you the word's....knock and it shall be answered!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
agapetos
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Re: Explaining MS to a 3 year old?

Post by agapetos »

I have ADEM, but it seams that some symptoms are permanent.
When I've had my first (and so far, only) episode of demyelinisation I was in a hospital for three weeks, and my children knew what happened. My older one (7 at that time) was fully aware, and my younger one (2 at that time) knew that daddy is sick, that she misses me and that when she visits, she can play with his walker. It has been 1 year and 3 months since than. And it seams that she still doesn't understand that I have ADEM. I love to carry her on my shoulders - it brings me joy, but as soon as we come to stairs I have to put her down. Every few days she asks me why don't I carry her on stairs... and I am just tired...

I think that the scariest things are those that are not being talked about. Your son should now be about 9, so, I guess I'm a bit late for this comment, but I believe that it can be helpfull to others as well.
Especially if you have such a small child (2-3 years old) I think that it is perfectly allright to tell her that you have MS, that it means that you are different, you get tired more easily (and/or other symptoms). As the child grows, it will be normal for her/him to know that you are just different. It will also be a great source of encouragement to know that even if (s)he is not perfect or has some disability, that (s)he can overcome it and still lead a fullfilling life. That is why I believe that you should not wait for it to tell her/him. It's just like with sex education - start when they are young, but only as much it is needed and age appropriate.
robyeager83
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Re: Explaining MS to a 3 year old?

Post by robyeager83 »

I have a 3 and 6 year old and even though they don't fully understand what ms is we have explained to them how sometimes daddy has to get extra sleep, or has to stay out of the sun sometimes, or not drive sometimes...etc...
because daddy has a sickness that never goes away. even though daddy has this sickness that doesn't go away he still has fun with you when we do this or that. At the same time we shield them from the bad stuff, many of times mom takes the kids out for the whole day so they don't see daddy in pain for 12 hours straight. When they do see bad stuff being honest with my girls even the youngest especially the youngest has been much more successful. We may think they are just kids but they have spent their whole lives with us and can tell when we are not being honest and they know when we don't feel well.

My aunt also has ms and the worst kind, wheelchair bound after child #1 and had 5 kids. Because there wasn't hiding of anything and because those kids grew up around the worst of ms they developed a special something, not sure what I can call it other than a special something. Those kids from infants had more compassion, love, and strength than I have ever seen. They all grew up to be amazing individuals who have love for everyone.

Having ms has been the cause of terrible pain and suffering but at the same time it's a blessing not only to me but my family. I'm not religious either. I would love for my ms to be cured but ms made me the man,father, and husband that I wouldn't have been without it. So thanks ms and I hate u.
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NHE
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Re: Explaining MS to a 3 year old?

Post by NHE »

robyeager83 wrote:I have a 3 and 6 year old and even though they don't fully understand what ms is we have explained to them how sometimes daddy has to get extra sleep, or has to stay out of the sun sometimes, or not drive sometimes...etc...
because daddy has a sickness that never goes away. even though daddy has this sickness that doesn't go away he still has fun with you when we do this or that. At the same time we shield them from the bad stuff, many of times mom takes the kids out for the whole day so they don't see daddy in pain for 12 hours straight. When they do see bad stuff being honest with my girls even the youngest especially the youngest has been much more successful. We may think they are just kids but they have spent their whole lives with us and can tell when we are not being honest and they know when we don't feel well.
Welcome to ThisIsMS. I don't know how you could do more than you've done, especially for a 3 and 6 year old. Heck, doctors can't even explain MS except for the fact that we get demyelinating plaques in the CNS.
MSKarateka
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Re: Explaining MS to a 3 year old?

Post by MSKarateka »

I have not told my daughter. She is 6. She knows I have a back-infection. I have no idea where she got that from. But I have only had one attack 2 years ago. I am RRMS.
Zyklon
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Re: Explaining MS to a 3 year old?

Post by Zyklon »

I don't want to be asked for an explanation. It is a good motivation for me.

Electricity and broken wires maybe?
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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ariehs
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Re: Explaining MS to a 3 year old?

Post by ariehs »

No one's posted on this topic in a few years, and I'm interested if anyone has any follow-up.

I have 3 boys - 5, 7, and 9 y/o. I've talked to them about MS only a little bit, and mostly about how it limits me at any given moment. They all know my legs are "wonky", and that sometimes I'm extra tired, but their interest seems to stop there. I've tried explaining more, but it doesn't stick yet. The eldest has more of a grasp on it than his brothers, but that's no surprise.
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NHE
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Re: Explaining MS to a 3 year old?

Post by NHE »

ariehs wrote: Tue Apr 27, 2021 6:08 amI have 3 boys - 5, 7, and 9 y/o. I've talked to them about MS only a little bit, and mostly about how it limits me at any given moment. They all know my legs are "wonky", and that sometimes I'm extra tired, but their interest seems to stop there. I've tried explaining more, but it doesn't stick yet. The eldest has more of a grasp on it than his brothers, but that's no surprise.
Spoon Theory might be of use.

https://butyoudontlooksick.com/articles ... on-theory/
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