Hope you don't mind me posting here?

[FlameGrilledMama]

My friend had a baby the same time as me but her due date was 3months ahead of mine. So her DC5 was born at 28 weeks. During the birth the hospital made a mistake and her brain was starved of oxygen and she severe Cerebral Palsy, the hospital have admitted fault.

However her is the problem eveytime she speaks about it I am really unsure what to say and what not to say IYSWIM. I do not want to say the wrong thing and upset her so I just sit quietly and listen. Is there any major things I should say or not say? I hope I don't offend anyone by posting here it is just that I want to support my friend but I am unsure how to so I thought I would ask other peoples opinions.

I also feel bad as our DD are both the same age she is always trying to compare our DDs saying about how my DD is walking while her DD is unable to lift her head is there anything I can say to help with that or do I just sit quietly? do I reasure her that her daughters condition may not be as bad? Just sit quietly and listen? Please give me some advice I just want to be a good friend.

I think it's great that you are thinking about how best to support your friend. My dcs do not have CP, they are ASD but I do sometimes find it difficult when my sister talks about her dd learning to talk so easily etc. I think all you can do is listen, try and help her find support from other parents, acknowledge her feelings of sadness about her baby's difficulties but also help her to focus on getting to know and value the dd she has. I don't know enough about CP to advise on what your friend can expect about her baby's development but hopefully someone else on here will be able to offer more help on this.

Oh poor you and your friend.

I don't think there is a right or wrong answer there, but pointing out the bright side is often done for the benefit of the person talking rather than receiving and it leaves us feeling misunderstood or not having permission to wallow in misery which we do ocassionally have to do.

It's like handing someone a tissue when they are crying. You're often really saying 'stop as quick as you can please' when the person might really need to feel her tears drip all down her face.

If you're a good enough friend to be posting here, you're probably good enough to do everything right. Honesty is the best thing and if you don't know what to say or think your words might be wrong just say so.

Honestly, it is the spirit with which you say them that is important and if you get that right then your friend shouldn't mind pointing out anything that makes her feel less comfortable.

Lots of friends say my ds is autistic. Some of them I think 'grrrrr, he is a child WITH autism' but the others I probably use the same terminology with them because he truly is accepted as he is and they are just words.

You can't ever reassure her that her daughers condition might not be so bad, but you CAN support her in HER desire to have the highest expectations of her daughters ability and of the provision she should get to support her.

You can also help her by TRULY celebrating in the successes. The smallest achievement that you take for granted with your dd will light up her life and she might want to talk about the day her child made a very small movement over and over but unable to because very few people will understand the potentially life-changing possibilities that come with being able to move just one finger.

You sound lovely, and no-one like you should every feel you shouldn't post here. The fact that you have done makes a difference to a lot of us.

Thank you both that really helps I already feel more confidant of what to say or not to say, I do spend a lot of time just listening, I am always unsure whether to show sympathy as I am unsure if this is hurtful because her DD is such a sweetheart and I really have no idea how she feels I cant imagine, She also brings up DDs achevements as a way to ask me the same question She asks if I think her DDs development delay is due to her being so premature with mild CP or severe CP? The doctors say she has severe CP and will always struggle do I give hope and agree that it is possible or say I don't know?

Flame You can tell her that there is research out there that shows that children with disabilities do much better when their parents have high expectations.

They don't always meet their parents expectations, but they DO do better because of them.

Doctors aren't Gods. They are often wrong. And in any case, treatments and therapies are developing. She should never give up on her dd or her expectations of her.

And many children exceed the expectations of doctors, especially when they are dx so young. It is also true to say (tied up with the expectations thing) that the faster a parent accepts and then 'deals with' the condition that their child has, the better the outcome for their child.

It is a burden for sure, knowing that you CAN make a difference as a parent, but it should also offer hope.

Thank you I will certainly tell her that

Hi - I'm new to mn too, I've posted a few times and got great support and advice. My best friend's DS is 10 days older than my DS. Mine has global developmental delay while hers is very advanced, it can hurt to see her DS do so much so easily but she has been the best friend I could possibly wish for. She listens when I need her to, cries with me sometimes, gives great hugs, provides advice when she thinks it will help, takes an interest in my DS's therapy and helps me out with it, celebrates every little achievement. On dark days she cheers me up, reminds me how far he's come on and tells me I'm doing a great job - which is lovely to hear. And most importantly she's always honest - unlike my parents and MILs who often say there's nothing wrong with him - but she does remind me that we'll all be fine and that we will cope no matter what the future may bring.

You sound like a lovely friend - she's very lucky to have you. Good luck xx

You are a good friend just for sticking with her and listening. I have a nearly 2 yr old DS who was deprived of oxygen at birth and has CP. Most of my friends from beforehand have drifted away - partly due to me isolating myself as I can't bear to see and compare him to babies of the same age - but also partly I think because they find it too difficult and don't want our grief impinging on their lives. I think you sound like you are probably doing the right things already, so although I will give you a few suggestions, please don't take these the wrong way or as if I am lecturing you - I am really not it is just my annoyance with certain people in my life coming out as I am writing! So, this is what I would like from my friends:

Don't use stock phrases like "all babies are different" [yes but not all have brain damage] "she'll do things in her own time" [she might not] "we all worry about our children's development" [of course, but you don't worry about whether they will ever walk, talk or feed themselves etc]

Try to learn a bit about CP and different therapies and stuff - there is plenty of stuff out there on the internet easily available - it constantly amazes me that even people with a genuine interest in DS like his grandparents can't be bothered to do this so I have to explain basic things to them (e.g. typical conversation:
"Is he saying any words yet"
"No. He might not be able to"
"Why not"
"Well, Some people with CP can't"
"Oh").

Show an interest in her therapies - offer to help if you can (some physio type things are much easier with 2 people).

It must be very difficult for you when she is comparing your two DDs and I think the best thing in that situation is just to be honest and say that she really shouldn't compare given what her DD has been through - you can't offer any predictions of what her DD will be able to do (no one can) but you can say that like anyone who has been through such trauma she needs lots of time and patience and help to be able to show everyone what she can do.

Most of all just be there for them and let her know that you love and value her DD just as much as you would have if she wasn't disabled and still want her to be part of your and your DD's life.

Sorry if that sounded lecturey, it wasn't meant to and you sound like a lovely friend.

Oh and if you want some more practical things I can suggest a few good CP books and blogs and stuff which have helped me if you would like.

Thanks 1980Sport That is really helpful while I ask about her therapy I have never asked to attend so I think I will give this a try.

Thanks badkitty you dont sound like you are lecturing this is what I wanted. I will research CP I talk about her therapies a bit I know she goes to the hospital daily, but she seems to keep that to her and her DD bonding time. But I will ask if she would like some help I know she has a lot on her plate.

I am especisly grateful for our suggestion on her comparing our DDs This really helps me I imagine comments like those of your grandparents would be harmful.

'Most of my friends from beforehand have drifted away'

I am very sad to hear this she did try to isolate herself at first but I just took that to mean she needed time to sort things out in her head. Then when she was down the school I just went over to say hi. I would love some more practical things if you don't mind thank you

I understand that she will bear resentment and I try very hard not to mention DDs acheivements unless she asks and then I will just state her development and move on. Unless she wants to discuss it further.

I think the main thing I did do that hurt her is my DD will go and garble and stroke her DD and show her toys my DD loves her, at first I was nervous and afriad of my DD hurting her but I am the same if DD goes to a young or small baby, we talked about this though and she said I must stop doing this because she wants her DD treated the same as everyone else, I said I was sorry and I understood and I have not done it since but I think this is good because it means she can tell me if I am upsetting her. I do feel very foolish about this and quite guilty but at least we are open yes?

Sorry x posted my DD is 14 months hers is 13 months.

Oh yes. It's brilliant that a)she was able to tell you and b)you didn't get offended and have thought about it.

However, in order for the friendship to work it does have to be balanced. It can't just be you considering her needs the whole time. Sometimes you'll have to be the taker. In fact she'll feel better in the relationship if you ocassionally make demands of her. Otherwise she'll feel like a charity case and think you're only with her because you feel sorry for her.

I talk to her about other areas of my life that I am having difficulty with so the friendship is two sided, she is not a charity case at all. There have been periods of our friendship where I am the taker and periods where she is the taker but I will take into consideration what you have said and try my best to make sure she does not feel like that, her friendship means a lot to me.

1980sport - loved what you wrote. My DD has severe delay too, and I have had inlaws for years saying there's nothing wrong with her and making me feel guilty for 'doubting her'...

It's hard work, but I loved your line about being able to cope with whatever comes along. Worth remembering, especially when you've had a tough day like I have today!

Good post.

she might be finding it hard at the moment because of her dds birthday, birthdays can serve as a reminder of how far behind your dc is, it's not always the easy and happy event it would be for your average dc.

you could always point her in our direction

I PMed you some suggestions as not sure about posting links on here!

I may just suggest she have a look on here thanks all you have all shared some very thoughtful and heartfelt feelings that have really touched me thank you.

While we're talking about great friends - the one I mentioned just did another lovely thing for me today. She phoned my local SureStart to find out what services are available in my area (she lives in a different trust area). She knows I've been putting this off because I always end up in tears talking about it. Sometimes the little things really help.

Thanks Litdog - hope you have a better day tomorrow.

1980 she sounds really nice

Flamegrilledmama
Firstly what a lovely friend you are. The most important thing you can do is listen, just do exactly what you are doing, continue to be her friend, allow your kids to be together, play together at whatever level her dd is able to.
My ds was born at 28 wks & suffered brain damage, most of my friends (well the ones with children) didn't know what to say or do so chose to stay away & not mention him.

Ask questions, talk openly (well as much as your friend is able to) cuddle & tickle & play with both dd's, that way you will know your friends dd for the person she is rather than just the disability.
Sometimes you might say the wrong thing but so what, be honest with each other & you will ahve astronger friendship for it.