* Author Topic: Anybody special needs after nicu brain bleeds?  (Read 6608 times)

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Offline Peacelilly

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Anybody special needs after nicu brain bleeds?
« Reply #50 on: 18/01/17, 21:18 »
I am left feeling slightly deflated tbh.
Ed Psych will be recommending EHCP which is a positive but given Leons need I expected that, she seemed to suggest it would get approved. Watch this space. She will be recommending VI team also a plus.
I asked if she could make a recommendation to delay school entry and she said she is able to do this.
She did say it's worth taking a look at the local special school which I am very opened minded about.
What gets me is the professionals tell you your observations, subtle comments and then you read between the lines. Observations I think we're suggesting ASD, such as doesn't change facial expressions, specific interests etc and lack of language or gestures. Her words he seems to have missed pieces of the puzzle can do more complex tasks like matching, problem solving etc.
It has been at the back of my mind for ages but with a preemie it's difficult to know what's delay or if there is actually a spectrum disorder too.
Report pending anyway.
What disappointed me the most is that if we go mainstream the nursery may not have the funding to support him as the budget reduced and ECH money doesn't go to nursery. Bonkers!
So I am going to view the special school. Wait for the report still pursue delaying school entry and see what is the best option.
I just want guidance in what is best for Leon if a special school is the best option and allows him to reach his full potential let's do it. If it was special school he could go from September and at least he would get support needed. Our local one happens to be rated outstanding. It's all about early intervention after all.
It frustrates the hell out of me that professionals can be wooly, I prefer direct but I know they can't give diagnosis without further assessment. It was the same with the CP it was obvious but no one would bloody say it.
Slightly different with learning I know but feels like I am on the same wheel again.
Few tears the last few days, understandably.
Ramble and vent over.



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    Offline Peacelilly

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    Anybody special needs after nicu brain bleeds?
    « Reply #51 on: 18/01/17, 21:19 »
    It should read she isn't able to recommend delaying school entry

    Offline Tincancat

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    Anybody special needs after nicu brain bleeds?
    « Reply #52 on: 19/01/17, 06:36 »
    Awh Peacelilly you are indeed right its like climbing back on that grinding wheel with assessments to lead to a diagnosis particularly when it's difficult to be clear if problems are due to prematurity or have another cause.
    CP diagnosis should be relatively straight forwards diagnosis  with the correct professional such as a neurologist at specialist children's hospital.  Has he been seen by a neurologist?

    Autism spectrum diagnosis normally via  multidisciplinary team which in the region I live can be hit and miss. . Due to cuts even when it's recognised there might be a problem before school there just doesn't seem enough staff to carry out assessments so families whose children have subtle difficulties left in limbo with no diagnosis for years.  Once at school the diagnosis is lead by the school who have to be able to recognise there is an issue in the first place then often they don't have the resources to get an Educational Psychology review to provide enough evidence to go on the social communication pathway towards a diagnosis. 
    Take heart he's in the system now for he's seen the Ed Psych: it's a long journey and you will get the best for him because you are a premie mum! . Premie mums are fighters too just like the little warriors we look after.

    Surfer I can't believe EHCP has been refused. . Perhaps not enough health evidence  has been supplied to support the application?
    TCCx

    Offline Peacelilly

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    Anybody special needs after nicu brain bleeds?
    « Reply #53 on: 19/01/17, 15:52 »
    Didn't explain myself well. Everyone knew he had CP but no one would say it. We didn't see a neurologist and require assessment as Leon was under Neuro surgeons for shunt and had MRI because of hydro so no further MRI and reason no official CP diagnosis by neuro but PAED confirmed it.

    Yes it's a real positive that he is the system but doesn't help with school choices. Not knowing what is prematurity and what's not is the issue now

    Offline Tincancat

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    Anybody special needs after nicu brain bleeds?
    « Reply #54 on: 19/01/17, 20:04 »
    Ah I see. . Neurosurgeons are surgeons they are not comfortable making a medical diagnosis so that's what was probably happening when no one wanted to say anything.
    TCCx y

    Offline Peacelilly

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    Anybody special needs after nicu brain bleeds?
    « Reply #55 on: 19/01/17, 20:23 »
    Exactly not neurologists and unnecessary as the ivh, hydro more than explained the CP.

    Offline Blondie71

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    Anybody special needs after nicu brain bleeds?
    « Reply #56 on: 20/01/17, 22:01 »
    Mine are also due autism assessment (we've reached the top of a 15 month wait yayyyyyyy 😃 so i've done my interview just before xmas and boys will be seen by a panel of 4 professionals to decide in March) unfortunately prematurity is a risk factor, older father is another and genetic of course.

    Just seems like the worry never ends  ^hugme^

    Offline Blondie71

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    Anybody special needs after nicu brain bleeds?
    « Reply #57 on: 20/01/17, 22:11 »
    It was the hearing test people who landed the asd bit on me btw and very unsympathetically as well, didn't even occur to me tbh in spite of loads of autism in the family  ::) i've never bawled my eyes out as much as I did in their office, they really blindsided me that day ^bigbad^  and a part of me felt like something died even though I know that's not true at all.

    Offline Peacelilly

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    Anybody special needs after nicu brain bleeds?
    « Reply #58 on: 21/01/17, 18:48 »
    I shed tears at the subtle suggestion to look around a special school so I can completely empathise. It's hard with a preemie knowing what is delay as a result of prematurity or if there is a learning disability. My boys is definitely social and communication however he has good understanding and can follows inatruction so I am really confused. It will all come out in the wash once I have had a machine full of tears.
    I hope you are having a nice weekend x x

    Offline Blondie71

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    Anybody special needs after nicu brain bleeds?
    « Reply #59 on: 21/01/17, 20:22 »
    I know the mere thought of special school makes you want to run for the hills when it's put to you by them but I can only tell you it has been an absolute godsend because the amount of funding means more teachers to less pupils, free access to therapies you'd pay a fortune for in mainstream, chance to catch up faster etc and he may move to mainstream very quickly, I see loads of parents wishing they had this chance earlier as their child is only getting help by the time he/she is 8 or 9, grab the opportunity for sure as special school is brilliant x