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Constant barriers wearing me down! Please read and support

NAS79117

Hi All,

I'm totally new to this discussion board. I don't even know where to begin....so my 7 year old has shown traits of ASD since he was 2 - he was late to talk, had delay in language and speech development, has always been needing support in school and since he started Nursery I raised concerns and asked for their support to seek a referral to Neuro for ASD/ADHD assessment. I was told by numerous staff "you don't want to label him", "he's too young to diagnose" and this has been an ongoing battle for 4 years now. He has been under the ALNCO for the whole of his foundation phase and is due to go to Juniors in September. He has progressively gotten worse and I feel the school have lacked support of a referral due to the long CAMHs waiting list and said it's a 'hefty' process to go through and that all of the things I told him he does at home he does not do in school. I told them he can 'mask' but they just keep saying they don't see it. The school said I can seek a referral myself via my GP but the school were not eager to do from their side. My son is now under CAMHs early years and is doing the 'Fun Friends' programme (that he is already meant to be doing in school). He is having 8 weeks of therapy sessions with a trainee psychologist and I have just done a self referral to Neuro myself and asked the school to support - they are not forthcoming in letting me see their input and when I've spoken to CAMHs they insist the school do not see what I do. My whole family see his quirks and behaviours. It is not about labelling him. It's about getting him (and us as a family) the support he needs and we need. His behaviour is worsening and it's causing a huge rift in the family as his older sibling has no patience and gets very upset and worked up when my son is going through really bad phases. He has OCD and anxiety behaviours and will repeat, flap toys (as a form of stimming) and will have sensory issues to foods and clothes and these occur on a daily basis. He has no awareness of inappropriate/appropriate and I have real concerns and just feel very upset and angry that the school are not supporting us as a family. He is told off for his behaviour in school but I know there are underlying concerns that are affecting him. I am sure he must mask a lot of behaviours and feel shocked that the school cannot see this as it's very common in ASD. Can anyone shed any light on what to do or experiences they've had with schools and diagnosis? The referral has gone over today and the school will not show me their input as they said they will send direct and also they said it will have to wait until September now as they have no staff in to do this. On the referral form it specifically says 'if no input from schools, the referral will be rejected'. I feel so drained by all of this and don't know where to turn. TIA, Tracey

  • in reply to Sarah

    Thanks for the support. I've been really upset and frustrated today but feel a lot more positive and determined now to keep fighting. X

  • in reply to NAS79117

    It helps to chat with parents who are experiencing similar issues. There is a light!! Keep going, as exhausting as it is! Your son shouldn't be getting told off all the time. These children are NOT naughty and are unable to control their behaviours most of the time. I just think some teachers just don't understand and get frustrated. SEND children have an equal right to an education. 

  • in reply to Sarah

    That's a great help and also reassurance that there may be light at the end of this tunnel. It's emotionally and mentally draining isn't it. I really feel for everyone having to push and persevere.  I'm not giving up! He is now under early years CAMHs but only to help with anxiety and OCD behaviour but I'm hoping they can see his traits and support my referral to neuro for assessment. I'm willing to wait. I just want to get on the waiting list and do all I can to find out. It breaks my heart that he's told off all the time and people lose patience with him. They're all just kids at the end of the day. Thank you for the reply. I wasn't sure whether to post but so glad I did and will ensure to be a part of this forum to get advice and support others X

  • in reply to Homebird

    That's great and reassuring to hear. Just frustrating that there seems to be ridiculous waiting times nationally! Hope all is going well.

  • Hi  I'm new to these forums too. My son is 10. I started this process off when he was in year 1. We have only just got a diagnosis of ASD in the past 2 years. He also has DCD and we are having to get a private assessment for dyslexia.  I, too, was fobbed off. You know you're child better than anyone. You just have to keep being pushy I'm afraid.  We've managed to get an EHCP now, but things have deteriorated in school since January.  I feel that his school are at a loss as how to manage my son's behaviour now. Are early help involved? They are useful. We have a SEND advice service (part of our local county council)  called SENDIASS , not sure if every area has this. I know it is exhausting! Everything seems to take so long and involves lots of phone calls/emails/meetings etc.  Hope this helps. X

  • We had similar from school who did not see what I saw on occasional visits to school. They did complete a report which delayed things, but with our persistence and having moved up to the next school we finally got a diagnosis 4 years after we originally mentioned our concern.