Explaining MS to children

Everyday living
1

Please help, as will struggle to explain my illness to children.

What do you say???

2

If I remember correctly when I was diagnosed in July 2005 the MS Society do a booklet especially designed for explaining MS to children, that I was given when I was in hospital. Hope this helps. Anne x.

3

Hi Survivor,

There are several specially developed publications & resources for dealing with this.

This site has a list of some of them here:

http://www.mssociety.org.uk/ms-support/emotional-support/living-with-ms/telling-your-family#Resources_for_kids

You don’t say how old your children are. You also have a gender-neutral name, so I’m not sure if you’re a mummy or a daddy!

If they are very young, it might not be necessary to go into a lot more detail than to say Mummy or Daddy isn’t well, but to reassure them it isn’t life threatening, or catching, which are things they might worry about. You probably wouldn’t need to get into the mechanics of what MS actually is, or how it causes the problems it does.

If they are a bit older, they might want to know more about the whys and wherefores, and what is actually going on inside you.

Tina

4

Have you seen this from the MS Trus?

Kids’ guide to MS

http://www.mstrust.org.uk/shop/product.jsp?prodid=286

There is also

Talking with your kids about MS

For parents

http://www.mstrust.org.uk/shop/product.jsp?prodid=316

and

Young person’s guide to MS

For people aged 10-16

http://www.mstrust.org.uk/shop/product.jsp?prodid=137

The MS Tust stuff can be read online, downloaded or a hard copy posted to you.

5

The MS Tust also do booklets

http://www.mstrust.org.uk/shop/product.jsp?prodid=316

there are three aimed at explaining MS to kids. You can read the booklet text online, view the booklet as a pdf or get the hard copy sent to you by post. They are all free!

6

I’ve pretty much posted the same information twice - I didn’t know what happened but the first message didn’t appear so I posted it again. Then I noticed a line near the top of the page telling me it was being moderated before it was posted.

I suppose it was those urls I put in the comment :frowning:

My eyesight it dodgy when I get tired so I don’t always take in everything I should. It’s annoying because I used to pick things up like that really quickly. Thanks MS!?!

I had a nice long day out visiting my boyfriends parents for their 50th wedding anniversary so the tiredness was worth it.

7

Thank you all around.

8

Hi my MS nurse gave me a copy of this book from the MS Trust MS Information & Publications - MS Trust Online Shop. My little one enjoyed reading it through with me. It’s a great book and something they can refer back to. Good luck, it’s not easy but I think it’s important they are not left to worry. Laura x

9

I just told them to imagine say a kettle cord, that has a plastic to keep the wires safe, the ‘wires’ that send messages to make my hands ,legs work haven’t got any plastic and so the messages get mixed up sometimes

My two were six and four when i told ( when they asked) and they accepted it.

You don’t need to get heavy with them, keep in in terms the will understand

10

http://www.mstrust.org.uk/shop/products.jsp?catid=47

I got this leaflet for my 10 year old, my 8 year old is less aware of things so hasn’t needed the same kind of explanation. She did do a thing at school about how nerve signals go from the brain to parts of the body - they made a chain of people and passed messages along - so I asked her to imagine what would happen if one of thepeople didn’t pass the message on, or sent it somewhere else. She seemed to understand that.

What they seemed to find hard to understand was that although I had physical symptoms, it wasn’t actually a physical problem. They seemed to think i had hurt my leg during my last relapse.

11

I’d forgotten that we aren’t supposed to post links - apologies for that. I think rules like that are essential to stop us from getting inundated with spam.

The links I posted were to the MS Trust website. They have booklets you may find very useful.

if you search the website for Children, young people and MS you should get to a page with links to the booklets I mean. You can read them online, in the pdf version of the booklet or get the booklet posted out to you.

I have found the information on this website, and the MS Trust website, really useful. I don’t have kids so I can’t comment on the ones I’m talking about.

12

Hi, I don’t know how old your kids are but the mss do 2 good books aimed at under 10 s. one is called my mum bakes the best cakes and I think the dad one is about boats? Anyway they are free and should be read with you rather than on their own as they answer a lot of questions that I didn’t realise that my kids had. Good luck but my kids have been very open with me, though my daughter, 9 years old,constantly telling people I’m not drunk almost confirms I’m a raving alcoholic! Chis

13

My teenage daughter told her school teacher and they were really good and printed a book called my daddy has MS which was realy good.

our younger boy says I have M&S. Kids are very good at coping with this. frankly better than we are.

14

An MS nurse came and told mine they were 8 and 9, she was brilliant, had lots of child friendly books etc, and various gadgets that they attatched to their legs and arms, so they could feel the heaviness, like I do, and they have never battered an eyelid about it. They are 25 and 26 now xxxxxx

15

When my wife and I told our boys, they were 8 and 5, we used the house, fuse box, wiring and appliances to explain my MS.

One son asked “will you die soon”; the other asked “can we get it”, once we’d answered those, the next question was “is there anything else, cos we want to play football in the garden?”. They’re 18 and 15 now and never make a fuss over the MS and neither does our 10 year old daughter.

Derek.