Experiences please of bringing up a Baby/child with very poor eyesight - first post

[AdamD]

Hi folks, new here so bear with me... and I hope it's OK for Dad's to gatecrash Mumsnet :-)

Our baby is now 3 months old and has a number of challenges but this post is about her eyesight, which we have been told is extremely poor maybe to the point of only being able to recognise light and dark - no shapes, movement, colours or anything of that nature.

She is still in hospital having been born very early but will be released soon and we need to get cracking with whatever we can do especially regarding preparing our home, ourselves, and get ahead of the education/gadgets curve when it comes to bringing up a child with very poor eyesight. We expect there will be some assistance from various groups/charities/council we don't know anything really about that yet.

We are really interested in any experience anyone has in this area covering any topics around getting help from any groups or government grants etc, education, mental health and frustrations (for parents as well as child) , technology, home improvements... well... absolutely anything really.

Very early days for us so assume we have absolutely zero experience in this area and you're probably on the right lines...

Many thanks
A, C and P

At 3 months I was told me DS could only see light and dark.

By 12 months his eyesight was more or less fine! He had 'grown out of it'

Our official dx was 'undiagnosed'

Hope your babies eyesight turns out to be not quite as bad as you fear as well.....

Apart from that I can just recommend talking to her lots - especially before you pick her up or feed her :)

my dd3 has a visual impairment amongst other things as a result of a genetic syndrome. Have you been refered to your local sensory impairment service? They will be able to give you loads of info and support, you can find them on your council site, usually under education but they work with children from birth. There's a few charities you may like to have a look at look, nbcs and victa to start off with, the rnib has a parents place but there's not much traffic there at all, although it's worth signing up to the newsletter.

money wise there's dla and depending on income there's carers allowance and the family fund as a starting point.

has any one mentioned portage at all? They are like an education service that come to your home to work with your child, again from birth. Waiting lists can be long for portage so it's worth trying to get on their list. If you have any childrens centres near you they sometimes run support groups for parents and/or children with additional needs. There's also the premature birth topic on here that may help.

here PLAY TALKS.
This is from the Scope website. Scope is mainly for cerebral palsy but many children with CP have visual problems and there is a brilliant section on stumulating the visual cortex in babies with visual problems. Its also useful for stimulating babies in many ways, hope you find it useful.
ps lots of good advice on MN SN site!

PS. Take with a pinch of salt what the doctors say, they alway put a worse case scenario on everything! I assume the MRI scan shows damage in the visual processing area as DD obviously cant read off a chart yet!!!
Babies brains have neuroplasticity which means their brains can rewire round the damaged area (hence Indigos type of story).
I saw a program on TV recently about a woman whose brain was so damaged in the visual area that the docs wouldnt believe her when she said she could see fairly well. When they MRId her the brain had rewired in an amazing way around all the (substantial) damage! Never underestimate your baby!

Hi there, thanks for all your input really appreciated.

We are on the waiting list for portage and I have sent emails to NBCS .. never heard of Look or Victa though, or a sensory impairment service, or Scope (this might be useful as well ? I didn?t specifically mention it but we are also expecting some form of cerebral palsy following an early bleed which ?leaked? into some of the brain tissue) .

Some really good stuff here so thanks a million, pretty sure I/we will be back on here :-)

Adam

good luck Adam to you and your partner with DD is she home yet? hope so

Hope all goes well for you all. We are in the cerebral palsy boat and bobbing along quite nicely most of the time! Luckily visually no problems but if I were you I would look at the PLAY TALKS (above linked) section on providing a visually stimulating environment for your DD.

Hi all, I'm also keeping an eye on this thread as DS (5 months) was diagnosed today with tumours in each eye, which means that he will be partially sighted (at best) and will quite possibly lose one or both eyes. Still getting to grips with the news and just trying to stay positive! Thanks especially to Ninja for the links - I hadn't really heard of any of those organisations, but it looks as if they will be very relevant to us!

sorry to hear that mackerella, sending positive vibes your way.

Thanks Ninja, I really appreciate it :)