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What support to offer friend whose dd has just been diagnosed with CP

13 replies

Minkus · 31/12/2007 15:40

A close friends' daughter has just been diagnosed with Cerebral Palsy. When she told me I didn't know how to react as I didn't want her to think that, at one end of the scale, I was belittling her lovely daughter's problems or at the other end of the scale, being horribly and inappropriately shocked at the label. So I just sort of said how sorry I was that the diagnosis was what it was but that didn't feel right either. We had a fairly long chat about how she's doing.

I'm going to ring her in a while to see how she's feeling today but am sensitive to the fact that she might be feeling a bit fragile and the last thing I want is to say something that might hurt her.

Any thoughts on better words to use? It's not that I am trying to be particularly pc about the words, just that advice on how to approach this sensitively would be greatly appreciated. BTW I have no direct experience of special needs situation so this is from a completely uneducated point of view.

OP posts:
milou2 · 31/12/2007 15:54

Something like how are you today? Listening is probably good, but it sounds like you are good at that anyway.

Graciefer · 31/12/2007 16:06

I know exactly what you mean, when my DS2 was born with Downs Syndrome 4 months ago, my friends and family didn't know whether to congratulate me on the birth of my second son or to commiserate (sp?), it was often very awkward first conversations.

For me, one of the most important things is to remember that it is a child with a disability not the other way around.

Having a child with Autism and a child with Downs Syndrome, I realise people can often feel awkward and unsure on what to say to you, not wanting to cause upset and because of this I often overlook when they make a clanger.

However I will always take exception when people say things like Downs child of Autistic kid, my children as everyone elses are exactly that, children, who happen to have a disability. Their disability isn't their sum total.

I am sure your friend will appreciate a sholder to cry on and you won't go far wrong listening and letting her vent and lead the conversation.

needmorecoffee · 31/12/2007 16:40

She'll probably want to talk about it and what she's read. I did when my dd was diagnosed but friends felt too uncomfortable to I felt very alone with the dx.
How old is her child and how severe is the CP?
There's a charity called Cerebral Palsy Plus (web site somewhere) that has a helpline (although not today obviously) and Scope has one to call and chat. She might want those numbers.
I'd be happy to talk to your friend. My dd is nearly 4 now.
But just be there for her. Don't get bored. This will be overshadowing her whole life and colouring everything right now. She will feel anxious, scared for the future but also angry and resentful of 'normal' children. Ask her what the doc said and let her talk it all out. Ask her what you can do to help. Would she like someone to come to appointments with her? Would she like you to find a SN group and go with her? Ask her what she would like.

Not sure what you mean about PC words. Her daughter is still a little girl who just happens to have cerebral palsy. Its only part of who she is.
If the lass is severely affected don't be suprised if your friend feels reluctant to go out or go to baby/todler groups for a while. She will need time to get used to being a SN mum as she will feel like she's the only one in the universe.

needmorecoffee · 31/12/2007 16:42

Just adding she can claim DLA and Carers Allowance but may not know that.

Cappuccino · 31/12/2007 16:43

I know this is against any advice and it really, really depends on the friend, but I went round to a friend's house the day dd was diagnosed and she was sensitive and funny, and we talked about how I had to dress dd really well because often disabled people looked really weird because their parents dressed them and they had really bad taste

people tend to have a complete sense of humour failure at this time and sometimes all that Support and Sensitivity is the last thing that you need, it just makes you cry

mymatemax · 31/12/2007 18:20

I agree with the other posters (including Cappuccino )
Also try to treat your friends dd the same as you did before you heard of her dx, so if you would normally give her a cuddle or a tickle - just carry on.
Don't expect too much from your friend right now but be there for her on the wobbly days when it may feel like its all too much, & that may be in months or years to come as sadly its a condition for life. You sound like a great friend, I wish your friend all the best.

2shoes · 31/12/2007 18:27

Cappuccino has a very good point about dressing her dd realy well. i have a real thing about this(and it is fun)
If she needs people to talk to could you get her on here.

Cappuccino · 31/12/2007 19:28

2shoes I wasn't really serious the point was it was nice to have a break from the sympathy to joke about it

not that I do dress her badly

HeppyChick · 31/12/2007 19:48

Cappuccino, you are spot on. My son (and his twin) are now 25 and we have got by with humour and mutual piss-taking. He is a demon piss-taker. Minkus, your friend will be fine, we all find our way through it eventually.

Mind you people still say crass things. He just got engaged and MIL says 'I bet you didn't expect him to find someone', I replied 'You're really ugly with an enormous nose but you did'... I didn't really but in my dreams I did...

mm22bys · 31/12/2007 21:36

Minkus you sound like a great friend. I am almost where your friend is, I have a DS2 who has Global Development Delay, but we think he too has CP, but he hasn't been officially dxed yet. I have one friend who has been particulary supportive, and she has been fantastic - emailling, ringing, and offering help, somehow just enough. She has offered help with the day-to-day things, but she is also a shoulder to cry on.

No other advice.

All the best to you, your friend, and her DD,

2shoes · 31/12/2007 23:23

Cappuccino i was being serious. as my freinds dh said they get stared at enough without people staring at their clothes.

needmorecoffee · 01/01/2008 09:21

dd is wearing purple trousers, pink t-shirt and orange cardi. But she's 3. I have never dressed toddlers well cos they get dirty so quickly. We have to change dd twice a day so never have anything that matches.
But everything clashes with her ginger hair anyhow.
Maybe thats why people stare and its not her waving limbs and CP smile

needmorecoffee · 01/01/2008 09:22

do people really notice what children wear?

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