Visual and hearing impairments
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My son is blind and hates groups of people

yvonneliamyvonneliam Member Posts: 3
I'm the mother of an 11 year old blind child. My son hates groups of people, children and is over noise sensitive. Medication not helping, I'm 7 months pregnant and literally feel at breaking point.....

Replies

  • Chris_ScopeChris_Scope Member Posts: 695 Pioneering
    Hi @yvonneliam, welcome to the community. @ParentingAdvisor may be able to give you some advice.
  • OlliHannahOlliHannah Member Posts: 30 Connected

    Hi yvonneliam

    I'm really sorry to hear that both you and your son are struggling - it must be a really difficult situation. Have you spoken to your son's  doctor to explain that medication isn't helping and that they need to review what support he is being given. Also, does your son have a social worker supporting him that you can talk to to explain how the situation is affecting you? If not, it may be worth speaking to your gp to see whether they can suggest any local support for you

     Good luck with everything and let us know how you get on

  • yvonneliamyvonneliam Member Posts: 3
    Hi, just seen your reply my son's under cahms and already has been through the four meds available to him, none help and already has a social worker and I get some hours respite a week were a carer comes in....but still feel isolated, stuck, and I believe his quality of life is poor,school is one of the few times he gets out and tolerates as its a controlled environment...Thanks for reply........
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Hi @yvonneliam

    How are you going on with your child? Have things improved at all? From the dates, I am thinking you have had your newest baby? Hope things are going well.

    Sam
    Scope
    Senior online community officer
  • Kathy_BramleyKathy_Bramley Member Posts: 132 Courageous
    Hi YvonneLiam

    We tend to go to things like railways and castles and walks, but not as often as we could. My daughter, 12, has a cortical visual impairment as part of a brain injury from neonatal sepsis, she can see to read but still struggles with moving around in particular,  when her vision was worse or less habilitation had developed, and still now a bit, she really struggled with crowds. Just completely flip out, when anybody came near her. She's developed quite a bit more confidence, but it's partly her confidence in a place, her mood, how familiar she is, other sensory stimuli. It can quite naturally demand a lot of nerve and concentration, but that's not to say it's impossible. Things like woodland walking where it's calmer and there's fewer people might be good. Stabilize and you might work up to kayaking or archery. Seriously, although it might seem like a strange dream at the moment. There's a range of other clubs that are specialist. Your local council should have information in terms of accessible free time sports and leisure activities but here's the RNIB page.  http://www.rnib.org.uk/young-people/free-time

    What habilitation support have you been able to access? There's separate health and educational professionals we've had contact with, I barely register who. It's been a very complicated thing not knowing how much of her needs and distress and difficulty is about the visual impairment and what to do about it. I haven't really chased it. But whether we push ourselves and end up burned out or end up in rut is a fine art of judgment and balance. I had to handle too many meltdowns in our local community and on days out, at coop or in lifts, or at train stations, with my daughter and my son who is diagnosed with high functioning autism. My husband takes them out places and we go occasionally to coffee shops or run local errands. But I have to keep it short and positive before we're both too tired. The specialist inclusion project youth club we tried before didn't work as too long in the bus and a change of school to a special secondary and earlier school bus all came together. But that sort of service might work for your child. Or as I say, other sports, leisure and organized free time activities. She's just been referred to cahms. I was discharged after 9 years under my community mental health trust care this time last year. 

    I don't think my body likes estrogen. I spent both my pregnancies playing Everybody Hurts on loop.  Kind of got through the shock of my daughter's illness and then my dad dying as I was just pregnant again, and the depression really kicked in after my second. That's when I referred myself. Social support of friends and family for you as a parent also is really really important but hard to maintain. Find a range of things. It might be that finding time for you and letting him have a safe space is good overall. Time with friends and new friends, other parents and carers.  School social groups, or perhaps the Actionaires might be useful. There's a group near us, but they're described as lively. Which isnt always our daughters best environment so I haven't tried, with the special school support being there as well. The RNIB also has a support service for family. Notes on blindness is an interesting film. But a long way away from a child's experience in some ways. Me and dyspraxic/ASD/SpLDs/MH difficulties all my life had an interesting range of comparisons and contrasts. 
    http://www.rnib.org.uk/information-everyday-living-family-friends-and-carers/resources-parents-blind-or-partially-sighted

    Henshaws YouTube channel is quite interesting. All kinds of resources. 

    Sorry this is rambling all over the place and a bit patronising. Enthusiastic wave of the branch in solidarity,  from another part of the tree! 
    All the best 
    Kathy x 
    Lucky unlucky
    Guess my diagnosis,
    It may help, but
    Don't guess my kids's
  • Kathy_BramleyKathy_Bramley Member Posts: 132 Courageous
    @yvonneliam - I'll tag you like a polite girl! 
    Lucky unlucky
    Guess my diagnosis,
    It may help, but
    Don't guess my kids's
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