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Helping my son to understand

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Old 09-28-2012, 01:37 PM   #1
Join Date: Sep 2012
Location: Williston, ND
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kasathe HB User
Question Helping my son to understand

I was diagnosed with MS back in 2005, but am just experiencing my first relapse now. I have an 11 year old son and seeing me like this is weighing heavily on his mind. Can anyone suggest a book written for someone his age that could help him better understand what this is? I found books for younger children, but haven't see anything for the older kids. Thnaks for any advice you can offer.

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Old 09-28-2012, 01:59 PM   #2
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MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Helping my son to understand

Hi Kasathe,
Have you tried the material which the MS Society has available online? They have alot of material which is young adult appropriate. Ive researched alot of books on MS, and have never found a good one on how to talk to kids- let alone how to explain this disease to anyone else. It appears that all books are about how to Cope with having MS, but none of them are really specific on how to discuss it with family/ friends.

The MS society does have some material available online to ********....and you are going to have to really sit down and talk to your son. If things are really bad, you might consider some therapy, as their are therapists who deal with chronic illnesses and have the ability to show your son that this isnt life threatening - but possibly life changing. Thats a good way to talk to him, by explaining to him that this is not a life threatening illness- that right now, you might need him to be strong and help his mom- (make him feel useful will give him some purpose) but that you expect that you will get better- but you dont know when. You can talk to him about the disease, explaining with the analogy of the electric cord, and the wires which run through it, being damaged, but not quite broken... this is like your nerves and the myelin sheathe which cover them, and how the nerves sometimes regenerate and repair themselves, while other times, the nerves send mixed up signals to your legs/ eyes/ whatever part of you is being affected. It might help to simplify it and give him a visual of "whats wrong".

Kids are afraid of losing their parents. I had to tell al 3 of mine why I was injecting medicine into me when I was using Rebif- its scary to them. But reassuring them that you arent planning on leaving them, that this isnt the kind of disease which kills people, usually is exactly what they need to hear.

Good luck ! Let us know how he does with this...

RRMS- dx 05

Old 09-28-2012, 02:14 PM   #3
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Re: Helping my son to understand

Welcome again.

The MSAA has a lending library and you can get a book from them which is written for children your son's age. My oldest son just turned 12 when I had to take disability. I explained firstly that it was not fatal and secondly that I might need help with some chores. My 3 year old (then) took it in stride and enjoyed the fact that I was always home. 10 years later and we are all doing well. I showed them what happens to my nerves with an old electrical cord and some electrical tape.
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

Last edited by MSJayhawk; 09-28-2012 at 02:14 PM. Reason: typo

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