DS is partially sighted as he was born with cataracts in both eyes, and we've got the diagnosis -a label- but that's it. We were initially told that they probably wouldn't affect his vision. They do, quite a lot (he doesn't know it's me out at 2m), and we now know that he also suffers from photophobia, but we've had to work every single theing out for ourselves about what he can and can't see, and when.
At the last check-up, knowing that they'd told me nothing on the last two occasions, I wrote out a list of questions to ask and sat there and read them out. It was like talking to a very kindly parrot - the guy just wouldn't tell me anything that I hadn't worked out for myself and said to him, and the exact condition is too rare to get anything useful off the internet or for there to be a support group.
We know that they have a good idea how these things will be affecting DS's vision, and how things are likely to change as he gets older, and I know that they don't want to speculate, but we almost feel as if we're making it all up, we're worried that more problems we need to undrestand will just come out of the woodwork, and we really need something a bit more substantial for the DLA forms as well as our sanity. I'd rather avoid a second opinion as DS would have to go through a load more horrible examinations. Any ideas?