* Author Topic: Anybody special needs after nicu brain bleeds?  (Read 6611 times)

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Offline Peacelilly

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Anybody special needs after nicu brain bleeds?
« Reply #60 on: 21/01/17, 21:06 »
Yes there is so many positives and it would take away some of the worry about him being in mainstream. We have an appointment now to have a look around in a couple of weeks time but I like what I see on their site. It's also reassuring that the staff understand the child's needs and the parents too. The member of staff was so emphatic. They also do rebound therapy as a firm of exercise. The school has been rated outstanding too.
I just have to wait and see what the professionals say now. I am guessing it would be an option though if the Ed Psyche suggested it.
I have also been in touch with one of the impartial information advisors to support me through EHCP process just in case.


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    Offline Blondie71

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    Anybody special needs after nicu brain bleeds?
    « Reply #61 on: 22/01/17, 11:16 »
    Brilliant Peacelilly that all sounds fantastic and parent support is so important too in a school as the last thing you want is pressure in mainstream that your child isn't keeping up and THEN having to transition to a special as that would be further disheartening 😢 much better to iron it out at early years level as most kids around Europe don't start education until 8+ anyway so they still have a chance to catch up ^hugme^ I know it's a terrible sickening shock to face this but I don't think you'll reget it as facilities are amazing!! Ps I did the tacpac training course yesterday and highly recommend if you can get on a course locally or arrange enough other parents/teachers in your area for them to send a trainer to you it's very beneficial x

    Offline Peacelilly

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    Anybody special needs after nicu brain bleeds?
    « Reply #62 on: 20/02/17, 23:29 »
    Hi,
    How is everyone and your little ones?
    We are still waiting for Ed Psyche report. It was promised before half term and didn't materialise. Chased it up and had some lame excuse that it didn't save to LA server when worked on from home. We put the TAF back a few weeks on the back of it and that's now next week and haven't been allocated the SENDI as a result who I hoped would be able to attend too. Frustrating.
    We had a look around the special school and liked what we saw but I would like to view a couple more. The one we visited is a shared with a mainstream. Really liked the way the teacher seemed to really know the children and they don't spend all day with a TAF so more teacher led learning.
    Watch this space it could swing another way.
    I hope you are all OK.
    Surfer how are you getting on with the appeal?
    Blondie what is the tapac course?
    Peace lilly x

    Offline Surfergirl

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    Anybody special needs after nicu brain bleeds?
    « Reply #63 on: 22/02/17, 02:38 »
    Hi everyone,

    Not much change here. The nursery are gathering evidence for the EHCP application still. Ed Pysch has assessed my daughter and we are awaiting the report. The VI teacher visited yesterday to check on what the TA is doing with her. We are waiting for our appointment with the Consultant now. SALT is coming today as nursery feel that my daughter's understanding may not be as great as everyone thinks. She repeatedly asks the same questions and we don't know if that's understanding or because she's seeking reassurance. She's staring to become more confident at nursery and has some lovely friends. She was 4 on Sunday. I can't believe how quickly the time goes!!

    Hope everyone is ok? xx

    Offline Blondie71

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    Anybody special needs after nicu brain bleeds?
    « Reply #64 on: 22/02/17, 20:24 »
    Hi all ☺ big changes for us here too as got called into teacher yesterday as ASD team were out to visit boys prior to their formal assessment and boys were determined as having information retention problems so they are more confident a learning disability that directly relates to their bleeds is present, asd will still formally assess them but the management is going in a different direction with more support in place.

    I went to talk to a brain injury consultant just to get a feel for the longterm and he was very informative about possible prognosis and the very real limitations of recovery after any brain injury but to be optimistic as they are young yet.

    Offline Blondie71

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    Anybody special needs after nicu brain bleeds?
    « Reply #65 on: 22/02/17, 20:37 »
    Ps Peacelilly tacpac is touch/massage done to special music with perfect beats to promote sensory & social interaction etc x

    Offline Peacelilly

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    Anybody special needs after nicu brain bleeds?
    « Reply #66 on: 22/02/17, 22:00 »
    Surfer, has the EP given you a timescale when you will receive the report?
    We got our boys today and it makes interesting reading. Mostly on point but some underestimation of his ability which is an ongoing worry for me. I know he understands more than she has given him credit for he just can't verbalise it so this needs to be a priority, giving him a voice.
    It does state he will need a lot of support and without directly saying it suggests a specialist setting which I now think is the right option.
    It's lovely to hear she has nice friends and is becoming more confident. She is obviously making lots of progress.

    Blondie what extra support/ management are they suggesting putting in place for the boys? Will they be staying in the same setting from this September?



    Offline RB76

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    Anybody special needs after nicu brain bleeds?
    « Reply #67 on: 23/02/17, 20:03 »
    Interesting to read everyone's updates, Surfer I hope you have some progress soon with the ECHP. Peace Lilly any more decisions on schools? Blondie any idea which school your boys will go to yet?

    We are progressing slowly but surely, going from three mornings to four at pre school next month, and working on the SEND support plan. DD starts school in September 2018 and we are eligible for the thirty hours free child care, but I'm not sure if the pre school will offer this as not sure they will have the capacity space or staff wise. How many hours do your little ones do? Early years teacher is very pushy for wanting her to do more hours but I'm not keen on introducing another setting, she loves the one she is in so much! Plus I am fortunate to not currently have to work, I'd rather have her with me if the pre school can't do more than fifteen hours. Yes they need the pre school support but they are in full time education soon enough!

    Speech wise we are getting quite a few more words now including a very cute 'yes please mummy' bless her, so hopefully that will continue to come on over the next few months as that really is her biggest delay.

    Offline Blondie71

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    Anybody special needs after nicu brain bleeds?
    « Reply #68 on: 23/02/17, 22:37 »
    Hi Peacelilly not sure exactly what it will entail but teacher highlighted regular respite, access to certain facilities (multisensory etc) home support and that sort of thing, ASD rang me earlier and they assured they will ensure the boys get the very best for their needs, daunting all the same!

    Hi RB 😊 my boys are already in special needs school and it goes up to age 19 so they will start next class up in September, they are so happy there too 👍 excellent you're getting some words, few here and there for mine but as they are supposed to have 3000 by now 😂 not sure I can brag lol

    Offline Blondie71

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    Anybody special needs after nicu brain bleeds?
    « Reply #69 on: 23/02/17, 22:41 »
    Oh yeah learning disabilities is yet another team that I suppose I have to go through the whole story again with yawn 😩 and then they will come up with all the extra help promised!