hi, im diane — Scope | Disability forum
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hi, im diane

diane86 Member Posts: 3
hi, I have 2 children my daughter keira-louise is 5 and my son Lloyd is 9 months, Lloyd had complications at birth and as a result was diagnosed with hypoxic ischemic encathanopothy and more recently diagnosed with cerebral palsy. he has no swallow so has a gastro-jejanostomy poor sight and not had his hearing tested yet. lloyd has only been home since the end of may but has been back in hospital twice since, I do find it all difficult trying to juggle all his appointments and excercises around and trying to spend time with keira-louise. im quite new to all this stuff so any advice would be helpful :D


  • Blue Frog
    Blue Frog Member Posts: 358 Pioneering
    Hi Diane, welcome to the forum. The kids look so chilled and happy in your photo! I hope you find it useful here, it's a great way to meet families in similar situations and get info and advice.

    Have you seen these? http://www.tubiefriends.com/ - Lloyd might be a bit little to understand yet, but Keira-Louise might like to play with it :)
  • diane86
    diane86 Member Posts: 3
    thank you I have just done a request form so hopefully I will get one.
    people keep telling me to go to bliss and places like that but I find that most of the people that go there are prem babies born with problems that have overcome them which doesn't really help me. im finding it difficult everytime someone close has a baby I feel like I need to stay away initially because I haven't coped with it. im due to see a councillor just to try and over come the feelings and talk things through
  • Blue Frog
    Blue Frog Member Posts: 358 Pioneering
    Counselling sounds like a good idea. Not many people are brave enough to ask for help, so you have already done the hardest bit, I hope it all goes well.

    I can see why people suggest groups like Bliss, but understand exactly what you mean. No two families stories are ever the same, but you need to find someone who is or was in similar situation, and ideally, who you would get on with anyway!

    When Lloyd is a little bit older, you will start meeting other families at nursery etc, but that's not much good now I know!! Contact a Family are good http://www.cafamily.org.uk, and I know there are several groups on Facebook. Blogs can be useful as well.

    Hopefully more and more parents will join here too :)
  • Alex
    Alex Scope Posts: 1,305 Pioneering
    edited July 2014
    Hi Diane,

    You might want to look into Scope's Face 2 Face service. They are groups around the country which connect parents with disabled children for emotional and practical support. Lots more about it here:


    If there's not one near you, there's also an email/phone version.
  • diane86
    diane86 Member Posts: 3
    it has taken me a while to ask for help but through the support of my health visitor I very much think its needed. not looking forward to the school holidays trying to juggle getting out and about with keira but also trying to make sure Lloyd isn't to stressed he doesn't seem to like his pushchair or car seat :(
    thanks alex will look into that would be nice to chat to people who have been in my place and have experienced similar situations
  • Natasha Brown
    Natasha Brown Member Posts: 108 Courageous
    Hi Diane you could also try http://specialkidsintheuk.org or the special needs boards on mums net or net mums . You might find someone local to you. In September sign up for any local under fives special needs drop in play groups. Meanwhile have you claimed dla etc ?


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