tlc-1978 said on 2012/11/20 at 4:52 pm
hi everyone, i have just found this site whilst trying to find out some information regarding my son's eye disorders. the hospital that we are with are not very helpful to be truthful and we have not been given a lot of information. I am not sure if my son would be classed as being sight impaired or not? He was born with a dense central cataract in his left eye, a pyramidal type. we had noticed a small white dot in the centre of his pupil shortly after he was born as did the wards paediatric doctor. he was immediatley reffered to the eye department where a consultant looked into his eye and said that there was nothing wrong and everything was fine, this white dot never disappeared. he was later seen at the hospital at 10 months old and we told the staff of our concerns again as the dot still had not disappeared and he had developed a lazy eye and the eye lid on the the left eye was almost permenantly closed. another consultant saw him and confirmed the cataract. surgery was done within a month to remove the cataract and he had a new lens implanted. since his birth he has developed amblyopia, micropthalmia, anisomeptrepia, PHPV, ptosis and also has abnormal iris vessels. he had further surgery to improve the ptosis but patching has not resolved the amblyopia but has improved it, we have been told to stop the patching however. the hospital will not tell me if he has sight or not and if so how much etc as they dont know. we do know that if he does have sight in the eye however that it is affected but just how much is uncertain. does this make my son partially sighted?
Sofie said on 20/11/2012 at 4:52 pm
N H S class sight impairment as an eye condition which can't be corrected by glasses. This isn't the same as being blind / partially sighted. This is based on how much vision you have, including your visual field.
James said on 14/11/2012 at 8:05 pm
I'm sad that no-one has replied to you yet. I think some of the professionals are being very unkind to you. I don't know a lot about sight loss problems, but I used to work in a Special Educational Needs dept of a local authority. I'm now retired, so am a bit out of touch.
You should get your child to have an Assessment of Special Educational Needs. This should be started soon, by about the age of two or earlier. I know it's called "Educational Needs" but it should be done as early as possible; it's a sort of passport for help and entitlement for your child before and during school years. Once started, it must be completed by the Local Educational Authority (or others) within 6 months. In your case it might not be done very quickly because there will need to be reports produced by the hospital, probably.
Are you in touch with a health worker of some sort? Otherwise, I'd speak to my GP. If you find you feel you are being obstructed ever, then go to your MP's surgery and ask for help. Certain people won't like that, but it's better than losing time, being upset, and missing out on help for your child. When I was at work I sometimes said to parents who were not getting help, in my opinion, and who phoned me, that I was not able to suggest a certain solicitor who specialised in Special Needs work, but that if they asked me for his name, well, I was obviously required to tell them. This person dealt with cases where parents were having problems - most Assessments go through without problems, but they are prepared by various professionals, and then finally put together as a Statement (but it can obviously be changed as the young person gets older.)
Maybe you know all what I've said - if so, sorry. It's the first time I've ever looked at the RNIB site, but I have been asked a question about a totally blind child.
Good luck. If you need any more comments from me, please get back to this site.