* Author Topic: Anybody special needs after nicu brain bleeds?  (Read 6615 times)

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Offline Peacelilly

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Anybody special needs after nicu brain bleeds?
« Reply #10 on: 23/12/16, 18:23 »
Wow Blondie that Ed psych was quick with her intervention but I guess it's a case of the earlier the better. I am sure it was still a blow reading their report and recommendations. I am not looking forward to it, I find it upsetting on occasion reading observations on my child but we have to suck it up if it gets them the help they need. Still ignorance is bliss sometimes.
Your boys are getting the support they need but how about you? It can all feel so disappointing some days.  No matter how much we love them we still wish it was different sometimes.
Tincan my little boy has a bit of an issue with fluids nothing identified as such but coughs after thin fluids. He is awful with his food, food has been my biggest frustration despite everything else going on. He is small, tracks 0.4 centile in 18-24 clothes. He is meant to start school September 2017 not sure he will fit the uniform. I am going to request to delay school entry but not sure it will be approved. Going to take advice from Ed Psych when I meet her.
Why are you worried about Chunks behaviour?


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    Offline Peacelilly

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    Anybody special needs after nicu brain bleeds?
    « Reply #11 on: 23/12/16, 18:24 »
    Blondie meant to add netmums special needs advice thread can be useful if you are not already familiar with it

    Offline RB76

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    Anybody special needs after nicu brain bleeds?
    « Reply #12 on: 23/12/16, 20:30 »
    Hi ladies

    Blondie71 we have chatted before of course, sorry to hear you are still facing challenges with your boys.

    Peace Lilly, we have a similar background with twins born at 24 weeks and one surviving. Our little girl has done remarkably well but she is developmentally delayed. Like your son she has SALT and one to one at pre school. Physically she has been delayed with her motor skills (walked age two and a half and only very recently aged three adjusted can walk well) and she has very little speech although her understanding is very good - she is coping well in her mainstream pre school and should go to a mainstream school in September 2018. She's like a little ray of sunshine, so happy all the time, i honestly thank my lucky stars that we have her.

    I just wondered with school application, when your LOs birthday is? We've had to apply to start a year later than she 'should' as she was born on 30th August. So I know quite a bit about the process for children born between 1st April and 31st August. Also, have you both applied for DLA etc? As this has helped us so much.

    Oh and also just to answer your original question Blondie - DD had a grade two brain bleed which resolved, but is having an MRI next year, so we may find out more then about long term impacts of it.

    Offline Peacelilly

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    « Reply #13 on: 24/12/16, 10:42 »
    RB76,
    Lovely to hear your little girl is doing well and getting the support she needs.
    With regards to delaying school entry my little man would still have been in the same year group of born on actual due date. However he would have been summer born had he born in his due date and so I am applying on this basis and his disability and development delay.
    I think I have a strong case and it is out of the normal and been told so by the LAKE.  However it is in his best interest and if it's not approved hopefully he will have his EHCP plan in place anyhow.
    I would just like to give him time to catch up with his peers and access the curriculum as inclusively as possible. He is currently in mainstream nursery and I am applying for mainstream schools unless I am guided in another direction by the professionals. He has coped well but the delay is obvious in comparison to his peers.
    I hope your little girl continues to do well and I may be in touch for some advice

    Offline Tincancat

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    « Reply #14 on: 24/12/16, 13:04 »
    Hi Everyone
    We have all bumped into one another on different threads and it's nice to be able to discuss the way forwards if our premies are delayed. .
    Thank you for the suggestion of indoor trampoline Blondie.  I plan to get one in the sales after Christmas. Titch is forever getting knocked over and he struggles to get up again from the floor. . Amazingly tho he's a good climber.
    Peacelilly yes it's nothing specific with Titch for fluids other than his coordination is not brilliant so it makes it hard work so he's reluctant to drink.  Titch still tracks well below 0.4th centiles. I'm concerned about Chunk's behaviour because he's having crazy meltdowns at everything and has done since he was around 6 months old. . I know he's in terrible 2s but he's got awful temper and insanely jealous of any attention given his brother. I've introduced the 1-2-3 magic and it seems to be working. . This morning he started up twice I counted 1 and he shut up without getting to 2 on two occasions. . He later had a massive meltdown over his bunny having to go in the wash and would not accept an alternative. My fear is he's showing some ADHD traits. . He never stops moving and moaning at the loudest volume possible. He's showing some signs of learning so perhaps he will learn to take himself off to calm down.
    RB can they get an EHC plan in nursery? I didn't know they could. . I've already got 2 year funding for both from January which should help so I'm not sure an EHC plan would add to this. .

    Titch had subependymal bleed which isn't supposed to be a problem as some full term babies get this and no one ever knows.  I however do wonder is this could contribute to his swallowing difficulties or is that just an essential development phase he's missed by being 100 % fed at one point last year. He's not got a clue what to do with a straw as he can't get the hang of sucking. 
    TCCx

    Offline RB76

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    Anybody special needs after nicu brain bleeds?
    « Reply #15 on: 24/12/16, 14:01 »
    Hi ladies

    Peace Lilly that is good to hear you are applying to start a year later as I strongly believe it will help. We have excellent support from an early years teaching team in Leicestershire where we live and our daughter's teacher just cannot decide whether or not she needs an EHCP because whilst she has very limited speech, she is very good in other areas of comprehension etc so we are waiting to see. My preference is for an EHCP if possible due to the legal rights it gives you. In your situation if you can get year of entry to reception stated in it, that would be very difficult for the council to argue against or change. I'm from a secondary teaching background myself although not currently working. So that helps when it comes to sorting these things out.

    TCC that's interesting about Titch as DD has always been a great climber. She was climbing well for ages and ages before she walked. I feel like I have lived in soft play places for the last couple of years. I am not sure what funding you refer to? Perhaps it varies between areas. We have got the usual fifteen hours free Pre School funding and got it from age 2 1/2 plus she has one to one support in pre school? We get DLA and carers allowance separately to this?


    Offline Tincancat

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    « Reply #16 on: 24/12/16, 16:23 »
    Yes I meant the 2 year old 15 hours,  eligible because of Titch getting DLA,  which will help me financially and allow me to put them in longer so they can benefit more. I don't get carers as I work 3 days a week.
    TCCx

    Offline Peacelilly

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    « Reply #17 on: 24/12/16, 18:27 »
    Tincan we have started EHCP process in pre school nursery. We had 2 year funding due to disability and inclusion support teacher during this time which also continues now. I have some behavioural worries too, but preemie's are known to have attention difficulties which is my main one and I will be interested in Ed Psych report.
    RB EHCP is important for my little man due to his physical disability and safety issues.
    Sounds like we all have climbers on our hands my little one uses a frame to walk but will happily climb.

    Hope you all have a lovely xmas

    Offline Blondie71

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    « Reply #18 on: 28/12/16, 17:40 »
    Hi All ☺ hope you all had a brilliant Christmas? We certainly did, the boys were in such a chilled and great mood which made things so much easier plus I had a lot of help from all their cousins and our extended family and was able to get a few nights out to myself so I hardly saw them 😂 they got thoroughly spoilt rotten!!

    TCC have you given sensory issues a thought with chunk?? Have a look at proprioceptive input things to try with him as that can lessen the behaviour stuff as their system regulates itself well through that.

    Hi RB good to see you here too (obviously wish a different outcome couwould have happened but hey we've got our kids luckily ☺) my boys both get dla too and it helps with private therapy stuff hydrotherapy etc 👍

    Peacelilly I do get physical support from my family but i've joined a few disability support groups locally, one I go to more as we meet in a hall they hire which has tonnes of activities for the kids plus sensory room, bouncy castle, gym, craft tables, jo jingles etc and I pay 10 a year and the parents all make tea and chat about issues so they have become my best resource so far! If you can find a local group like that take full advantage as we do day trips and all sorts plus they can be heavily subsidised into some really expensive places, we're all going as a big group to euro Disney in the spring so it's worth joining ☺

    Offline Peacelilly

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    « Reply #19 on: 28/12/16, 18:30 »
    Blondie, nice to hear you have had a bit of time to yourself and been able to enjoy xmas. It sounds like the boys have had a lovely time. I am drowning in plastic toys!
    I don't go to any regular disability  groups now that my little man is in nursery. However, I mentioned we have just started conductive education at a charity called Rainbow House and it is already a source of support and I am sure as a family we will be getting much more involved with the charity including parents. It's so nice to speak to others who know what you are on about. A parent of a typical child including close friends find it hard to comprehend how many professionals we have to deal with week to week.