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Very worried and would appreciate some advice!

Discussion in 'Special educational needs' started by Beth_Bee, Mar 29, 2012.

  1. I was wondering if any of you could help me. This is going to be a long ramble I'm afraid, but if you do have the time and the inclination I will be sincerely grateful for any advice you can give. I'm writing this post as a very worred mum, but I am also a teacher. (At the moment I am onmaternity leave from my job at an LA where I write statements) The reason I'm telling you this because although I have knowledge of SEN from my teaching days and from my job now, this is me as a mum writing.
    The reason I'm posting here is that I really need advice about how to get school on board without alienating them.

    I have a nearly eight year old DD1 and a four month old DD2. I've always worried about DD1, but having DD2 has begun to confirm a few things for me and I would really appreciate your views on this.

    As a baby she never really engaged. Being my first I didn't really know what was normal and what wasn't but DD2 is just so different. She makes eye contact and smiles and laughs and I just don't remember DD1 being like that at all.

    As a toddler she didn't really play with toys, and even now has loads of things like Barbies and Sylvanian Families she has never touched. She spends ALL her time either playing the piano, just making up tunes, (she's very good) or dancing to music (again, she's very good). She was a very late talker - she was well past her third birthday when she would speak in short sentences. However she sounds very articulate now. This is great until you listen to the content of what she says, and then you realise it's very muddled. (Or at least, I do). She is in Year 3 now, and last term they were looking at the Egyptians. She wanted to take in the piece of volcanic rock we have, and eventually established that they were doing pyramids that week - she was confused between the two. She often makes up words for things, and does things like call lorries "trollies" and on the rare occasion she plays "schools" in her bedroom I hear her using lots of made up words, so much so that it sounds like babbling. She has no real friends at school, but seems to spend all her time falling out with the other girls. She frequently tells me she hates school because no-one likes her. However if you ask her who her best friends are she will name three girls at our church who are in their early teens and who are really not interested in her, but she follows them round obsesively, compeletly ignoring children of her own age.
    She has real problems empathising with anyone, has real trouble falling asleep and despite having a really solid bedtime routine is frequently still awake in bed at 10.30, worrying about things. I have often wondered about her being on the spectrum but I'm not to bothered about a label. However I do feel that the older she gets the more difficult she finds life. In 18 months she will be off to Middle School, which is the system we have round here. I'm already worried as the middle school she would go to is like a mini secondary school.
    So, that gives you some back ground. My school problem is that I have always felt that they massively inflate her grades, particuluarly with writing. Her school is in avery affluent village is small and has had an outstanding ofsted three times in a row. But I cannot get them to see why I am worried. The thing I really hate is I can just imagine how the staff must talk about me... I've been there! They probably just see an overly protective mum who, as a teacher, thinks she could do a better job than them. (Which is not the case. They are a lovely staff). When I've tried to explain how little of what we talk about she seems to understand they respond with "but we don't see it in school", even though they must see that, with careful (TBH it doesn't even have to be that careful) questioning she really doesn't understand much of what is explained to her. The perfect example was the end of term concert, when they did "The Selfish Giant". She was in the front row of the choir, sang beautifully, and looked word perfect. At tea time we were talking about the story and I mentioned the little boy who played "Jesus" She looked at me like I was daft and said "He wasn't in it!" So I said, "yes, the little boy at the end, who came to take the Giant to paradise, he was meant to be Jesus, that's why he had wounds on his hands" "Wounds?" she said "What are wounds?" so I explained. "Oh!" she said, "I've been wondering what wounds were". One of the songs she sang had a line repeated over and over "These are the wounds of love". She had sung this beautifully, and had not actually understood a word. It turned out, after me asking some more questions, that she did not actually understand the story at all. I know for a fact that they made quite a big thing of reading the story to the children as part of the preparations. So I can understand why at school they may not always have picked up on when she doesn't understand - she's not naughty and has good coping strategies. But they just will not listen to my worries. My husband and I are going to pay for her to have a private speech and language report done as we are convinced her language is quite disordered, and also that she will probably have quite a spikey profile, which is why it's not that easy to pick up on. However it's expenisive and we just can't afford it at the moment. So in the meantime how do I get them to listen to me? And what kind of intervetion should I be asking for? Please help if you can.
  2. I would personally suggest that you have a private Ed Psych assessment done before you have a S&LT report - that way they will be looking at all sorts of different things and assessing the developmental learning levels in most areas - that way you will have a much clearer/ professional picture to support or put to rest your concerns.
  3. I agree with mackmoo, If you are this worried then for heaven's sake go private.
  4. I would advise going to your GP first. If you're thinking she may be on the autistic spectrum, that should be your first appointment, and ask to be referred to a paediatrician. I've been told that the latest NICE guidelines for diagnosing ASDs are that it has to be multi-disciplinary, so would have to involve a doctor, paediatrician, S &LT, OT , possibly Ed Psych etc.
    Although there may be a longer waiting list, doing it this way round would (a) save money and (b) hopefully make the school take your concerns more seriously, as they would be contacted by the paediatrician to fill in questionnaires etc.
  5. Wotton

    Wotton Lead commenter

    I to would recommend going to your GP, this is what we did. They will then refer you to the different specialists. For us and another family I know this was CAMHS. From there we saw the EP and the pediatrician. The other family, more recent referral, are seeing the clinical psychologist.
    It is diffficult for the school to start interventions if they to have no guidance on the difficulties and what may be the underlying difficulty/disability.
  6. Thank you all for taking the time to reply.
    If it was just up to me I would be seeking a diagnosis. However my husband has extremely strong feelings on this and will not consider it for a moment - he got really angry when I suggested it.
    It frustrates me enourmously that I can't get school to try and help her without a diagnosis - surely it should not matter. I have taught children who had ASD type needs with no diagnosis, but that did not stop us as a school from putting things in place to help those children. You hear of proffessionals questioning a parent's motives around getting a diagnosis for their child, and yet it appears that unless this is the path we go down I will get no help for my daughter.
    Her school seems to suffer from the curse of the Outstanding ofsted - they have set the bar so high that they now can't admit she has not made the progress they say she has becuase it is not going to be good for their results. (And after a converstion with the recently resigned SEN govenor I susupect this is true for other children with mild SEN) And as they finish in year 4, by the time my DD goes through her SATs in year 6 Lower school is but a distant memory - very convienent for the school.
    It makes me so cross and also very upset because I feel like I'm banging my head against a brick wall.
    But thank you for your replies.
  7. Wotton

    Wotton Lead commenter

    You don't need a diagnosis to get a differentiated curriculum but having something to base your differentiation on is helpful. more problems could be created if they put in place the wrong support.Her lack of progress will show in their results unless they are "fixing" results. If it is such a high achieving school it may well be that her progress is in line with the expected national average.As the HT for an appoint ment with the head, the class teacher and the SENCo if necessary explain your worries and ask how they can help. Sorry if you have already done this, it's Friday and the end of term.Feel free to pm if you want.
  8. grrmummy

    grrmummy New commenter

    Have you thought about asking the LA direct for a statutory assessment? You do have the right to request this (even if they refuse) and sometimes desperate times call for desperate measures. Your request for assessment will have to be responded to and in order to reach its decision the LA will want to know what measures the school already has in place for your child.
    I do think an Educational Psychology assessment sounds a good idea - preferably as part of the statutory assessment process but as others have said you can get one done privately if the LA refuse to do a statutory assessment.In my opinion this is money well worth spending. Remember it is not the label that is important - it is the professional understanding she will get at school afterwards if she is found to have SEN.
    From what you have said it sounds to me as though you feel that your daughter is not fully accessing the curriculum and her inability to form meaningful friendships with her peers is affecting her developmentally. Your GP may be very supportive but you could go round in circles if a medical diagnosis is expected before support is provided at school (this shouldn't happen but in some schools it does). Remember that 'adequate progress' is not just about academic results it is about emotional wellbeing and giving a child the chance to really thrive at school - not simply coast along. I am sure your husband will come to terms with this once he realises that very inteligent children do have SEN.
    I hope it goes well for you.[​IMG]
  9. grrmummy

    grrmummy New commenter

    Sorry I missed this part of your post. Some areas have a self referral system for SALT - others will accept referrals from any medical professional (GP/school nurse etc). I would definately ask for this and make sure that they know to assess both her expressive and her receptive language skills. This is really important but I know in some regions it is not always done unless you ask for it! You really should not have to pay for this because it is a health service not a LA one and if yo get this done you may be able to arrange a private EP assessment
    Good luck! [​IMG]
  10. lovely.lady

    lovely.lady Occasional commenter

    I'm in a very similar position! My husband has just come round to accepting that our son has mild ASD. His school have just suspended him as a result of this. I'm desparately trying to seek a private Ed Psych assessment. My son has had a paediatrician assessment and SALT assessment but that was when he was 5 yo. Since then we have had no major issues until now however he is being bullied and he has lost control!
    Good luck
  11. wrldtrvlr123

    wrldtrvlr123 Occasional commenter

    Why does it always seem to be the fathers that are resistant (or in outright denial) to seeking out help/diagnoses? I run a special needs international school and with virtually every family that comes to us after their child has struggled at (or been asked to leave) a mainstream international school, it is the father that resists assessments, therapies and/or their child attending an SEN school.
  12. Not all fathers are resistant to this - my husband certainly wasn't. It could be that the fathers in question are also on the autistic spectrum themselves and so are more resistant to change!!

    OP it sounds like your daughter needs proper help and your GP ought to extract a digit and get on with it. You shouldn't need to pay for any of it - you may need a multi-disciplinary team to conduct a thorough assessment, no strings attached. You may, however, need to get tough and insist ( via complaining to local Health Trust, if necessary) that your daughter is seen pronto. Sounds like you've been ignored for long enough - the sooner you get planned support and advice the better for your daughter ( and you).

    Does she have music lessons? She may have a real talent there which would boost her self esteem if it could be sympathetically harnessed.
  13. wrldtrvlr123

    wrldtrvlr123 Occasional commenter

    I didn't say (or at least didn't intend to say) that all fathers are resistant. I was simply stating that in my experience, if there is a resistant parent, it seems to be the father in many cases (virtually all in my experience as an SEN teacher). Although I too am the father of a child with Autism and I don't recall being particularly resistant.


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