What can I say?

[Wossisface]

Just realized I posted this in the wrong board!

I'm struggling for words with my very good friend. I'm hoping for advice.

My friends baby has been found to be blind they arenot sure at this point if it's something they an correct or not. Not sure what's causing it. They know it's not cataracts. But now awaiting more tests. The gp has given them a pessimistic outcome and I guess rightly so as he has experience and false hope wouldn't be do any favours. She is distraught. I find myself coming out with all the clichès and nothing helpful.

What can I say of comfort to her?

You sound like a caring friend and it's difficult not to resort to cliche's because cliches are often true.

I think people often make the mistake of trying to be very upbeat in an effort to make the parent, and themselves, feel better. My DS was thought to be blind as a baby, and I got comments from well-meaning relatives along the lines of, 'David Blunkett is blind and it didn't stop him', even though DS obviously had a catalogue of other problems and was never going to be a cabinet minister! I found it really difficult to hear.

I would attempt to listen and take in what she says. Don't automatically feel you have to say something to make it better, but just say you'll be there for her. She might want practical help too.

LOOK is a good, user-led organisation for visually impaired children. I expect they are online and they have a magazine.

My DS turned out not to be blind at all - he had cortical visual impairment (stemming from the brain not the eyes) and developed ok vision by the time he was 2. He has, however, got other, severe disabilities. Your friend is on a journey and it's not clear where she is going but you can gently go with her.

I agree with BB. I was told my DS was blind at 3 months.

By 12 months he'd 'grown out of it' - amazingly!

But those were some of the hardest months of my life. I was certainly grieving.

I researched everything I could, and for me that was helpful. I found out about braille and walking sticks and David Blunket and all sorts.

I guess maybe instead of finding the right words - concentrate on listening to her? Let her talk through her justifiable worries and concerns and grief - and just keep being sympathetic.

It is a raw deal. Nobody wants their child to be blind. It is very hard to come to terms with. So just be the person she can cry to.....

Hopefully she'll come to terms with it in her own time....

(Or possibly have an even better story and her baby makes an amazing recovery like mine and BBs)

I hope the outcome for your friend's baby is good

I don't think there are words of comfort that you can give her at present. She will be going through an agonising time. You sound as though you are a very good friend-Just be there for her and listen when/if she wants to talk.

agree with the others, not really much you can say, you can't make this go away and that's probably what she wants right now so all you can do is be there to listen.

The time might not be right just now for this but there is plenty of info and support when she's ready. If you look on the council website you should find details for the local sensory impairment service, usually under education but they work with children from birth and you can usually self refer. There's also look that BB mentioned, nbcs and victa there's also a parent place on the rnib but it's rarely used. And of course she can always come and post here.

Wos

she obviously has a good friend in you. I think like others have said, it's being there for her and and listening. Maybe do a bit of reading around youself so if she does say or ask something you might feel a bit less 'hopeless' (I don't mean that you are hopeles, but if she's talking about stuff or thinking out loud about stuff you don't know about it's hard for you to have any idea what to say or do). :)

When she's ready or when it comes up in conversation and the time seems right (like Ninja says) point her in the direction of services that she can access. LA's often have specialist qualified teachers of the visually impaired who work in the home with families from the point of diagnosis or Portage services that offer something similar but different (well in our LA anyway). These services can be really good at helping parents of VI or blind babies to bond more effectively - bonding, interacting and communicating with VI/blind babies is different to how it is with sighted babies. Sometimes understanding this enables parents to see more positives than they did before, because before they were for looking for reactions from their babies that they were unlikely to get.

I guess you are to some extent governed by where she is 'at' in her thinking. Sometimes it can be useful to try and help someone think more proactively or positively but to do that, you need to feel a bit like you know something to say (that's where the reading around might come in useful).

How old is your friends baby?

Hi thanks for all tour advice and experienced shared. I am listening to her but cannot help feeling helpless not knowing what to say to take it all away for her, obviously realistically I know it's not possible to to take the pain she us feeling away but she has taken it so hard (as expected) just really difficult.

Her baby is 5 months old. They were concerned at 3 months as she wasn't focusing. After further tests she wouldn't respond to light follow anything with her eyes etc. They have looked for cataracts which she doesn't have but now she has to have more tests to find out what is causing the problem.

Thanks again everyone

Wos,

You're there for her and doing what you can, almost certainly providing invaluable support, even though it might not feel like it from where you sit :)

I hope your friend is getting some good 'professional' support to help in these early days of learning to bond and understand her baby in a different way, it really is crucial.