View Full Version : Parenting with MND

8th September 2011, 12:55

wondered how others cope with having mnd and children, my son is 19 months old.


8th September 2011, 14:02
Welcome Laurence,

I can't believe Stan is 19 months already, seems only a few months ago that you announced his birth. He must be walking and getting into all sorts now?

I think the hardest thing with als and children is not being able to physically interact with them. It eats me up inside that I cannot play with my 10yo daughter Bethany, however saying that there are still lots of fun things we do such as go for walks, play naughts and crosses and other paper games (Beth does the marking), creative activities, reading, cooking...

It must be hard with Stan as he's at that awkward age.

8th September 2011, 14:19
Hi Laurence, I don't know how we would cope with a young child, our dogs like a bloody baby lol. My nephew 15 months old and a at a point where he is into everything, it guts me I can't pick him up or just get on floor and play games with him. My daughter is 8 so it's a lot easier but still feel I'm missing out on so much.

Robyn Copley-Hirst
8th September 2011, 14:21
Welcome to the forum, Laurence.

I know a good number of our forum members have children, all at different ages, so I hope you get the advice and views you're looking for.

Best Regards,


8th September 2011, 14:53
Hi Laurence, you will be surprised how quickly children adapt, I have a five-year-old son and a 13-year-old daughter, I used to do a lot with my five-year-old, running around, playing football, the usual sort of stuff, but when I became ill, he no longer asks me, and tends to ask my wife, the hardest thing for me, is when he sits on my lap and strokes my bad hand (the one that is pretty much useless) and strokes it and says "I'm going to make your bady hand better dad" it brings me to tears every time he says it.

The eldest one, is aware but puts brave face on it, and just seems to carry on being a cheeky teenager - spending her whole life with her head buried in her mobile phone/iPod touch.

There is a document available from the MNDA which is aimed at children. Although I guess yours may be a little young yet.


Kind regards


8th September 2011, 15:28
Hi Jeannie, Chris and Robyn

I can't believe he's 19 months myself, he's a real live wire, and starting to say a few words munter (monster) etc. He helps by picking things up for me, it's hard that i can't pick him up, he's goes to strangers to be picked up when we're out, he holds his arms in the air...it breaks my heart.


8th September 2011, 15:36
........however there are some sublime joyous moments which make me forget mnd.


8th September 2011, 16:23
Hi Laurence

I was pregnant with my son when I was diagnosed. I missed doing everything with him and it used to really upset me. But he's 11 now and more caring than my older daughter, who had my undivided attention. If I cough whilst eating, he's really concerned and if I need help he'll run to do it. So, although I'm sad about everything that I couldn't do with him, I'm proud that he's so caring. I'm sure your son will be the same. I'm also grateful that I'm still around for my kids.

All the best


8th September 2011, 16:29
It's amazed me how much my 4yr old has taken it in her stride. She tries to help me stand up when I struggle bless her and just accepts and gets on with what she sees. It's hard for me when she wants a squeezy hug or says she wishes I could still give her a piggy back ride, play tag etc. It's a plus though that they can be v helpful fetching n carrying for you :-).

8th September 2011, 16:51
Welcome to the forum, Laurence.

I care for my husband. Our children are not living with us any more and are all grown up. I feel so much for you all who feel that you may be missing out on their younger years. Children deal with these things far easier than adults ever can.


8th September 2011, 17:27
Awww Laurence that must be tough.


Bethany is just like Eric so caring, if I get a tickly cough she will ask if I need a drink or a tissue if I sneeze. Can you speak enough so your kids can understand you? thankfully both my girls and close family can still understand me.

I personally think it's better to have disabled parents than no parents at all.

8th September 2011, 21:36

They seem to understand me still, especially when I shout at them! Is your older daughter as caring, because mine isn't?!! She's OK though.

Sarah x

9th September 2011, 08:14
Mine isn't either and doesn't offer to help. She turned 17 back in June and moved out coz she doesn't like ground rules, would rather stay out all night getting pissed grrr She is in full time education and lives in like a youth hostel where they are taught to live independently, she isn't allowed friends or alcohol in her room lol

9th September 2011, 10:19

Here's a picture of Stan the mechanic.


9th September 2011, 15:16
Our thoughts are continually with you Laurence, as likely will be all readers.

9th September 2011, 16:50
awww great photo of little Stan and you, Laurence ;-)

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