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8 month old with no diagnosis yet.

Hello my name is Louise. I had twin boys in June last year and one of them suffered from lack of oxygen during birth causing brain damage. We were told the most likely out come would be spastic CP but to what level we don’t know. His brain damage was severe but so far he is doing well. 
At the moment we can see he has a visual impairment of some sort so have been referred to a vision impairment service. We are just waiting for them to contact us. We also see a physio therapist every 6-8 weeks, speak to a speech and language therapist every month on the phone, and we also saw an occupational therapist for the first time this month.
 I just wondered if there is anything else I should be doing? Or anyone else I should be speaking to? We have seen an ophthalmologist in the past and he has told us our son isn’t blind but can’t tell us how much he can actually see. But he didn’t mention anything about a vision impairment service, luckily the OT did and referred us otherwise nothing would be getting done and I would be thinking it’s normal as he’s too young! 
I am planning on going back to work in June and have arranged for a nursery to take both of the boys and they know about Dylan’s history. They have a SENco there who will talk to us before he starts so should I be getting His therapists involved too so they can talk to the nursery? 
Sorry for all of the questions! 

Replies

  • janer1967janer1967 Community champion Posts: 8,413 Disability Gamechanger
    Hi and welcome 

    It seems like you are getting lots of support 

    From my understanding being visually impaired myself and waiting for impairment team to contact me they are there to do assessment on safety and home and recommend adaptions or aids 

    I dint think they are involved in the medical side of the issue but I may be wrong 

    Just a warning I was referred in July and still not heard anything as they are limited service during covid fingers crossed you are not waiting as long 
  • Tori_ScopeTori_Scope Scope community team Posts: 3,661 Disability Gamechanger
    Hello and welcome to the community @LouiseH2021 :)

    I agree that it sounds as though you're already getting a good level of support, which is great! If I think of any other services I'll let you know, but for now I thought I'd point you towards two services we have at Scope that might be of interest:

    Navigate

    Navigate is open to any parent or carer who:

    • lives in England or Wales 
    • has parental responsibility for a child under 18
    • this child is on a pathway to diagnosis or has received one in the last year 

    It's a programme of up to 6 sessions with a personal adviser, who will help you to talk about your feelings and concerns.

    The service will help you with:

    • organising your thoughts and feelings
    • practical advice and suggestions
    • coping strategies and insights
    • taking positive actions and helping you with emotional wellbeing
    Parents connect

    The service is free and for parents and carers who are:

    • aged 18 or over
    • the parent or carer of a young disabled person between the age of 0 and 18
    • living in England or Wales

    The online sessions will be in groups of up to 12 parents or carers. There will be 6 parent sessions, usually one each week. After you apply we will try to find a time and date that will work for you.

    Each session will:

    • encourage you to talk to others in the group
    • provide you with information about local and national services
    • last a couple of hours

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