How do I explain to DS for the first time why he is like this?

[skewiff]

DS has cerebral palsy/hemiplegia. It affects the whole of his left side, but mostly just his left hand and arm. I think that DS would mainly think of his left hand not working properly.

DS will be 5 in March. He has recently started asking questions, mainly about his baby sister, like why can she do this already ie open her hand and use two hands?

I want to tell him properly now why(until now I have felt that the information was too much for him and so have skirted round the issue), but I want to say the right thing.

Do I just stay simple and stick to we all are different and have our strengths and weaknesses, or do I talk about his brain, or do I say something happened when he was in my tummy to make him like this?

I can't believe how cowardly I am being about this whole thing. I just don't want to plummet DS into a place of darkness. He is such a bright little thing and bounces around with seemingly not a care in the world. I don't want to start him on a chain of thoughts that can then not be stopped.

DS is 6.5 now and we have told him overtly much more over this past year. We have always mentioned him being wobbly or his legs being stiff(he has diplegia). His CP is the result of his prematurity and although to a certain extent he always knew that about this about 18 months ago we went over some photos on the computer of him and that time and printed off a few that he liked and stuck them by his bed. They show him full of tubes etc and very small and compare nicely to the ones of his brother free from all of that. Over the next few months I mentioned hime being born early a lot and started to slip in the terms CP and disabled, again overtly.

Over the summer so when he was just 6, we told him that he had cerebral palsy and this was as a result of his premature birth, we told him that it wasn't an illness (that would go away) but was part of how he was. We said that his body struggled because he was so small and his brain had a bleed that meant that the bit that deals with his walking and balance was damaged. As he is that way inclined we mentioned nerves and the way they work and how messages are passed along from the senses to the actual movement via the brain and how for him this doesn't work properly. He has no leaning disabilities, in fact is quite bright, so we told him that it wasn't for all parts of his brain just for the bits that control movement.

Non of this information was new to him but it was the first time we had bought it all together. Since then we have repeated it a few times and I have emphasised that some of the things he finds difficult are because of his CP. He is now very clear on what's going on but I don't think the permanence of it has fully sunk in yet. I have no intention of labouring that point but do sometimes point it out. for e.g. when he says that he will run the marathon when he's older I say' That's great, I've always wanted to do to so I'll do it with you! I don't know if other people with cerebral palsy have done before, maybe you can be the first!' and so on...

Gosh this is an epic - sorry - I just wanted to show you that I'd started gently preparing the ground but haven't shied away from the full truth. I feel it's very important that he knows exactly what's going on so that he has some say in his own life. It's been great for physio etc too as we can now relate everything clearly to his CP.

I don't know whether you could use Cerrie Burnell from CBeeBies to help. Explain that she was born missing a hand, and he's been born with a hand that doesn't work properly? I'm not sure I'd yet approach the brain connection as at that age "brain" if they've thought about it at all, is the "clever" bit and it might worry him further?

I'd have thought as he sounds like he understands fairly well, it might be a relief for him to know that it's not something he's doing wrong?

Thank you both of you.

DeWe: I think it will be a relief for DS to know that its not something wrong he is doing. Especially as we try so hard in physio every morning to improve his physical skills and he often says 'its not me mummy that's making my hand close, its the inside of my hand'.

I have already, since he was very young, talked about Cerrie and other people we know and meet who cannot do things or have a part of them that is different. I am deaf in one ear so I have talked about that a lot too. So I'll refer to these people etc

I had worried that mentioning the brain would make him think he wasn't clever so you've confirmed my instinctive feeling about that.

Hairy Maclary: Maybe I'll wait to use the term Cerebral Palsy, until DS is nearer to your son's age. DS was also not born prematurely so I can't refer to that. We don't actually know why he's got CP.

Do you think I should sit DS down and give him a talk, or just wait for another question to come along? I am feeling guilty that I've dodged a couple of questions recently and worrying that he won't ask any more ...

He might already have some sort of grasp of his condition, my DS is a month older than your DS and I was talking with him about his uncle who has autism (DS also has HFA and I wanted him to be comfortable with the word), he then asked "Do I have autism too mummy, because I'm different like uncle x?", I was completely taken aback as he is so young I didn't think he would have been thinking along those lines but he told me he had thought about it for a while, then asked why both his uncle and himself had autism but DP didn't, so he was able to distinguish between members of his family who did and didn't have it.

You could try a simple book to explain it to him, like this one;

www.amazon.co.uk/Nathans-Wish-Story-about-Cerebral/dp/0807571016/ref=sr_1_10?s=books&ie=UTF8&qid=1321911347&sr=1-10

Oh yes that's a good idea. Thank you.

Hello. I realise your question has been answered, but I've only just come across this thread. For what it's worth, my DD is 8 and has mild cerebral palsy (spastic diplegia). She was diagnosed just before her 3rd birthday. Although initially I was reeling and could hardly bear to use the words myself, I met someone with an older child with CP who recommended that we use the words "cerebral palsy" with DD straight away. He said it is only a frightening label for adults, not for children, who have no associations with it, iyswim. It felt uncomfortable at first, but that is what we did, and the same when talking to our younger daughter about her big sister.

Of course different approaches work for different families, but for us I think it has been a good approach. It has meant that cerebral palsy is not a scary expression for her, and we haven't had to suddenly spring it on her when she was older; she has always known the words.

As she got older we have talked more about why (probably because she was prem), and how (she understands the nerves going from her brain to her legs don't take as many messages as for people without cp, which means her muscles don't know when to stop being tight, and it is more difficult for her to balance). We also regularly talk about other people with differences (she is very attuned to this), and have made an effort to connect with a couple of other families with similarly affected children.

She is comfortable telling people she has cp - and again for her peers, this is not a loaded term. She even chose to talk to her class about it early this year - made me very proud.

Soon after her 8th birthday she started asking loads more questions, and asked me to buy lots of books about it. I have always tried to be completely open and honest answering her questions - though I feel sad that she is having to deal with some very adult concepts at a young age, and I do think it takes an emotional toll. I couldn't find many books for children, but found a few (all American) on Amazon marketplace. She has found them helpful.

I think she has hit a particular milestone re awareness that this is not something she will grow out of, and she is pretty angry about it. I think she is currently trying to work out where she fits in the world. She is very mildly affected, but she knows she is a little bit different. Currently she asserts that she is not disabled. That is fine by me. I think it is quite a political issue (how one defines oneself, if at all), and it is her prerogative to choose whether or not to use certain labels.

sorry this is such a lengthy response - hard to stop once I start...