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Losing eyesight

Beedan Community member Posts: 1 Listener
edited March 2023 in Sensory impairments
Hello, my son is only 4 and his sight is rapidly deteriorating. We don't know why yet and are waiting for an appointment with the hospital after being referred by optician but we've been waiting 2 months already and still don't even have a date. I call them almost daily and am told I'm on the urgent list and just need to wait. 

Without knowing what's going on I'm really scared for his future and want to start preparing him so he's in the best position whatever they find, especially should he lose his sight entirely.

Does anyone with sight loss have any tips or advice for things we should be focussing on? What skills would be useful for him to be learning now that would be easier to while he still has some sight? 


  • Sandy_123
    Sandy_123 Scope Member Posts: 54,694 Disability Gamechanger
    Hi @Beedan welcome to the forum 
      That's sad that your son maybe loosing his site, also frustrating that you are having to wait for answers and tests. I'm hoping the appointments come very soon. 
    The specialists should be able to see what's going on and a plan on going faward. I don't have any useful information for you. Someone else might. I hope things move fast for you soon 
  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Hi there 

    I have sight loss blind in one eye and severe impaired in other 

    If he gets diagnosed with visual impairment you can contact your local council sensory team who will work with you and your son to help him adjust and introduce you to aids to make his daily life more manageable 

    There are lots of tools out there like apps , voice activated tech .

    Try and get him used to his environment through touch and hearing 

    Try not to worry you will get the support he needs 
  • Starlingbird
    Starlingbird Community member Posts: 169 Pioneering
    Hello @Beedan. I am so sorry to hear of your situatation.

    I don't have any advice regarding sight loss, but, if you are in a situation to go private, then maybe that might be an option? From my limited experience in the past, most initial appointments are under £200. It's possible that you could get an appointment within days (even with the consultant you are currently waiting to see, as many do both private and NHS treatment). You could then be transfered to the NHS after that first assessment. 

    Wishing you all the best with your little boy x
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,740 Disability Gamechanger
    Hello @Beedan and a warm welcome to our online community, how are you and your boy doing today?

    As a mum too, I completely understand your initial fear and wish to prepare him for life with partial sight as much as possible. I'm sorry you've come across the delays in accessing services and can imagine that is entirely frustrating to deal with.

    Although I don't have personal experience of this, I know the RNIB are a brilliant organisation for supporting families through this journey. I'd really encourage you to read their 'First steps - understanding your child's sight' webpage as it has ample information about the next steps you might wish to take, other services available and their own helpline. 

    Just to let you know, I've moved your thread to our 'Sensory impairments' category for others to find it more easily. I'd also recommend visiting our Children, parents and families category to read others stories that you might be able to relate to.

    Wishing your lovely little family all the best, please keep us posted with how you get on.
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  • durhamjaide2001
    durhamjaide2001 Community Co-Production Group, Scope Member Posts: 11,128 Disability Gamechanger
    I would look into getting a guide dog if he isn't scared of dogs.
  • blindmarcie
    blindmarcie Community member Posts: 3 Listener
    Oh I’m sorry to read this I was 4 when my teachers told my parents my sight was not good so I can relate. A guide dog would be a wonderful companion for your son as well as look out for him. Sending you both hugs 🤗
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