* Author Topic: Anybody special needs after nicu brain bleeds?  (Read 6609 times)

0 Members

Offline Blondie71

  • Gold Member
  • *****
modify
Anybody special needs after nicu brain bleeds?
« Reply #20 on: 28/12/16, 21:24 »
Tbh Peacelilly I'm finding it harder to relate to parents with typical children and I find myself almost resentful and frustrated (secretly disappointed in my kids maybe?? :-[) that my kids aren't living up to expectations, whatever it is I know I need to come to terms with it so yes the groups are where myself and the boys more importantly can be themselves.

You're not alone in struggling to accept this at all.

FertilityFriends

  • Advertisement
  • ***

    Offline Blondie71

    • Gold Member
    • *****
    modify
    Anybody special needs after nicu brain bleeds?
    « Reply #21 on: 28/12/16, 21:29 »
    Ps what does conductive education involve?? I'm on a waiting list for home education lessons on top of their nursery hours is this similar?

    Offline Tincancat

    • Gold Member
    • *****
    modify
    Anybody special needs after nicu brain bleeds?
    « Reply #22 on: 28/12/16, 21:37 »
    I think perhaps all we long to have is the normal life most people have with full term healthy babies.  My two aren't so severely affected as some ex-prems and still have lots of appointments to attend. .
    Peacelilly and Blondie  you are quite right those with regular children don't understand.
    RB funny how they can be unsteady on feet but climb so well. . Titch will quite happily climb open steps to a slide which Chunk won't go near.
    Blondie I don't think he's got sensory issues but saying that he's taking great delight in stomping around on the laminate flooring listening to echo in the room.
    TCCx

    Offline Blondie71

    • Gold Member
    • *****
    modify
    Anybody special needs after nicu brain bleeds?
    « Reply #23 on: 28/12/16, 21:50 »
     🙉 I can just imagine him TCC they sound just adorable the pair of them 😂 funny how we're all parents of twins on this thread too, maybe that leaves it's own issues on a child too, we can't know what effect twinning has I guess 😕

    Offline Peacelilly

    • Full Member
    • ***
    modify
    Anybody special needs after nicu brain bleeds?
    « Reply #24 on: 30/12/16, 22:24 »
    Blondie, I think your feelings are normal given your situation. I don't think you are disappointed in your children, just maybe that life was a little more straight forward.
    I had a really hard time accepting my son was going to have a disability. It felt just so unfair after loosing my babies that life would throw another challenge at me. However I am mostly at peace and accepting of the situation. Don't get me wrong when I see other babies young children walking and running I feel sad for my little man. I feel ashamed of myself looking back that I was so scared of what might be and is.

    Conductive education  is a type of education for motor difficulties.
    http://www.conductive-ed.org.uk/coned.htm

    We are still in trial phase but sessions have been positive so far and my little one seems to be settling with the group and his conductor (therapist).

    Happy 2017. Face whatever it throws at us head on!


    /links

    Offline Peacelilly

    • Full Member
    • ***
    modify
    Anybody special needs after nicu brain bleeds?
    « Reply #25 on: 30/12/16, 22:29 »
    Blondie just checked out your boys on the photo, super cute. They are only about 2 weeks younger than my little man but I think if corrected would have been born before him. He was due 8th July


    Offline Peacelilly

    • Full Member
    • ***
    modify
    Anybody special needs after nicu brain bleeds?
    « Reply #26 on: 30/12/16, 22:30 »
    Tincan, are you in the Liverpool area?

    Offline Peacelilly

    • Full Member
    • ***
    modify
    Anybody special needs after nicu brain bleeds?
    « Reply #27 on: 30/12/16, 22:32 »
    Sorry meant to ask any of your little ones have ROP surgery?

    Offline Tincancat

    • Gold Member
    • *****
    modify
    Anybody special needs after nicu brain bleeds?
    « Reply #28 on: 30/12/16, 23:30 »
    Hi Peacelilly
    We exchanged PM sometime last year when I was really stressed out with Titch in hospital.  I think our boys attend the same specialist Children's Hospital. I'll PM you

    Blondie, as Peacelilly, says I too don't think it is a disappointment in your children more a disappointment with the situation your find yourself.  Someone told me it is like going on holiday expecting you were really looking forward to, had read up on it and learned a bit of the language only to find yourself in a completely different country which is still an enjoyable holiday just very different place/environment you had planned so you find yourself doing things differently and adapting.   

    Just had to break off in the middle of typing this reply because Chunk, who has been asleep since 8pm, was throwing an OTT strop in his cot bashing himself against the bars.  Now its not  unknown him to wake up and having brief screaming episodes up until I go to bed but this was an almighty angry session this evening so I needed to go see what he was doing.  Poor Titch got woken up.  I really don't get Chunk sometimes.
    TCCx

    Offline Surfergirl

    • Gold Member
    • *****
    modify
    Anybody special needs after nicu brain bleeds?
    « Reply #29 on: 31/12/16, 08:50 »
    Hi ladies,

    I have been reading through your comments and wanted to join if that's ok? I've seen lots of you on other threads before!

    My ex 26 weeker will be 4 in Feb and is accessing mainstream nursery 3 X per week. She was diagnosed with global developmental delay. She struggles with a poor swallow and needs fluids thickening and close monitoring when eating. She had laser surgery for rop and has been left with very poor vision in her left eye, plus impaired visual processing and visual field loss. Her speech has come on in leaps and bounds in the last 6 months. She has one to one support in nursery through the Early Years Access to Learning Grant. We have applied for an EHCP but it has been refused as the LA say that she is making progress and shows determination (!) The Ed Psych shtrongly recommended a plan but to no avail. She had an MRI last year which was abnormal and showed global cerebral insult, among other things, although she had no major brain bleeds in the NICU.

    I plan to fight the LA to get the support that I feel she needs. She struggles socially and has been diagnosed with SPD. We are awaiting her first session with the OT. The LA's want to save money and going to appeal for EHCP applications is sadly becoming the norm. I am a Careers Adviser so see it regularly with the young people I work with.

    It's a difficult situation to be in that's for sure!