Blind/Visually Impaired Support Group for kids

[kelebek]

Hi ladies,

First of all I want to say what incredibly strong & dedicated mothers you are & that it is great that this support group has been started.

While I don't have a child with a vision impairment I do have retinitis pigmentosa (RP) & as I have the hereditary one it means my son has a 50% chance of getting it also. This is very scary for me, I think the worse part is not knowing if he has it or knowing how bad it will be.

Sym, I can imagine how scary it is to be told that your son is going to be legally blind by 15/16 but I did want to give you hope. I am legally blind & if I didn't tell you you wouldn't know. This is not to say that your son won't face problems & as you mentioned his syndrome is different to what I have.

I would suggest everyone contact Vision Australia they are a great resource for those with low vision, they have tactile books & can suggest all sorts of aids, if necessary start cane training etc... I have used their counselling services but as a teenager went on camps with a whole bunch of other teenagers who were both vision impaired & totally blind. We went abseiling & everything.


Just wondering how everyone is going?

[Dragonbub]

Hi NJD and other mummies with VIPs - visually impaired pups! (My mum wears a VIP badge just so everyone thinks she is important, LOL).

As I have mentioned before, my mum has Retinitis Pigmentosa. Her Grandmother and Uncle had it, and some cousins, but no one else luckily . Some days I worry so much for my son and get cold goosepimples on my skin, but other days I remember how independant and vibrant my mother is (she was told not to have kids because of the risk of passing it on, and is still living by herself at 60) and I know that he will have such a wonderful no matter what it throws at him.

There is not much else to say other than I have so much respect and admiration for those mummies doing it tougher than most, even though I know you wouldn't do it any differentl anyway. I really mean this from the bottom of my heart, well done.