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Getting a Diagnosis

squidgy

Hi all - bit new to this... My daughter is four and a half and we are waiting on a diagnosis from out local Child Development Centre as to what her funny behaviours and general delays could be. She was diagnosed with Epilepsy in August 2011 and started mainstream school in September. Since starting school they feel there is a two year learning, socialising, communication and developmental delay (all of which I have been trying to make people aware of since she was about 18 months old). Her school will not take her full time until we get a diagnosis and until her epilepsy is under control (could take up to two years to get that bit sorted). Various things have been suggested over the years by the different professionals involved such as Autism, Aspergers, ADHD, Global Developmental Delay, Auditory Processing Disorder but up until now no one has committed to anything and has always said'she will catch up, she will grow out of it or we need to see more.' To cut a long story short we are at the stage now where we have all the agencies and professionals involved that need to be, they have all submitted their reports and observations from the past two years and our appt with CDC is on 28th Feb for a diagnosis. My question is really is will they actually give us a diagnosis this time or am I getting my hopes up for nothing? I want to just know what it is so I can start getting the right support and people involved - everyone is willing to help - Social Services, statmenting, Autism Bedfordshire, playschemes, the local special school etc etc - but only once we have a diagnosis. We have had questionnaires sent to us and the school, we have numerous reports ranging from the past two years from the school, her pre school, the Ed Psych, our Epilepsy peadiatrician, the Speech Therapist, the Early Years Advisory Teacher, blood smear results, GP reports and ourselves all being sent to the Community Peadiatrician before our appt but my husband still thinks they will still not commit to anything specific. I have told him I am not leaving the room until we get a diagnosis on paper but he thinks I expecting too much. Am I getting my hopes up or should I expect them to be able to tell us something by now? Anyone any similar experiences/can offer any advice? Thx 

Parents

  • It sounds so frustrating. We've had little issues ourselves but not much in relation to you. My daughter has Autism. I believe her actual diagnosis should be severe Autism with dysphasia and dyspraxia but we'll have to wait and see. We took her to be assessed when she was around 3 because I thought she presented strongly with Autism. We went through a very lengthy process where the educational psychologist told me that she had issues but only because i'd given her a dummy and let her drink from a baby cup. The ASD team said that yes, she had some symptoms of Autism but was too imaginative to be diagnosed. As time has gone on she is presenting completely classically and I knew I'd have to go through it all again. So this time I tackled it from a more professional approach and started to document. At the moment my daughter is an ongoing project. I photograph her at play, keep a behaviour log, IEPs, detailed notes from every appointment. I'm not taking no for an answer this time.

    I wanted to say, you don't have to wait for a diagnosis to get a statement of special educational needs. I have a very excellent text book on the policies for a special needs education and there's an excellent article in it about a woman who fought for a statement even though there was non specific information with regard to her daughters sen. I'll sort it out later and msg back. It might help.

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  • It sounds so frustrating. We've had little issues ourselves but not much in relation to you. My daughter has Autism. I believe her actual diagnosis should be severe Autism with dysphasia and dyspraxia but we'll have to wait and see. We took her to be assessed when she was around 3 because I thought she presented strongly with Autism. We went through a very lengthy process where the educational psychologist told me that she had issues but only because i'd given her a dummy and let her drink from a baby cup. The ASD team said that yes, she had some symptoms of Autism but was too imaginative to be diagnosed. As time has gone on she is presenting completely classically and I knew I'd have to go through it all again. So this time I tackled it from a more professional approach and started to document. At the moment my daughter is an ongoing project. I photograph her at play, keep a behaviour log, IEPs, detailed notes from every appointment. I'm not taking no for an answer this time.

    I wanted to say, you don't have to wait for a diagnosis to get a statement of special educational needs. I have a very excellent text book on the policies for a special needs education and there's an excellent article in it about a woman who fought for a statement even though there was non specific information with regard to her daughters sen. I'll sort it out later and msg back. It might help.

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