My blind baby

linseyworgan
linseyworgan Community member Posts: 3 Connected
in Families and carers
Hello,

I have just joined this group today as I really do not know where to begin.

My 6 month old baby was involved in a care accident. He is now brain damaged (to what extent we have to wait and see) and he is blind. Are there other parents on here raising blind babies?

How can I best prepare for the future and equip myself with the knowledge, techniques and tools to help him in his life?

I feel so helpless, but there must be something I can do for him.

Any advice welcome.


Comments

  • Blue Frog
    Blue Frog Community member Posts: 352 Empowering
    Hi @linseyworgan welcome to the community  :)

    My little girl has CVI - there's nothing wrong with her eyes but her brain doesn't process the signals properly.  We had a lot of help from a charity called Sense. They have support workers you can chat to, and family days where you can meet up with others.  

    My daughter also has a teacher from sensory support (part of the local education authority) who visited her at home and gave lots of advice.  She now helps her at nursery. There may also be portage in your area which is similar.  Some children with special needs get special nursery places from 2 (but we didn't want this) 

    There are are several charities who could help with special toys - I think there are links from other parts of this community. Loads of very bright, tactile, light up things,  she loves the emergency foil blankets too!! The tactile books are good, our library gets them in - or the 'that's not my...' series are good.

    Our experience may may be totally different,  but I was told that she was blind and couldn't see very much at all.  But, over time, and through doing a lot of work with her, it's really come on and she can actually see quite a bit - though it seems to vary with how well she is, seizures etc.  She is starting school in September  <3
  • linseyworgan
    linseyworgan Community member Posts: 3 Connected
    Thanks so much. I sill get in touch with Sense.

    Really interesting that Dr's said that your daughter couldn't see anything and now she has some sight. What did you do to help encourage sight?
  • Blue Frog
    Blue Frog Community member Posts: 352 Empowering
    I'm not sure I really did anything special. Just a lot of 1:1 interacting, and giving her a range of nice things to look at and explore. She seemed  to respond best at first to red and yellow toys and things with black and white patterns on them. We got a lot of bits and pieces from a website called Sensory Toy Warehouse. 

    There are some really good ideas in this book, and the family who wrote it  have made an app for the ipad too 

    https://www.amazon.co.uk/gp/aw/d/1936214822/ref=mp_s_a_1_1?ie=UTF8&qid=1500278110&sr=8-1&pi=AC_SX236_SY340_QL65&keywords=little+bear+sees&dpPl=1&dpID=514aU9c4dXL&ref=plSrch


  • Nystagmite
    Nystagmite Community member Posts: 595 Empowering
    Hi,

    I'm a partially sighted adult; so things have probably changed a lot since I was diagnosed in the early 90s!

    RNIB do some toys from what I remember and there's a charity called Look, who I believe are a children's charity for children with sight impairments.

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