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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 like the initial steps that are happening are ok. For example, you're protecting your daughter via her epilepsy by sn schooling and statementing etc and having the support of her current school is excellent. We don't have the support of the school. They're are doing their bit with a classroom helper but they don't listen to what I say and they don't tell me anything! This whole thing is one uphill battle and you only have to spend 2 mins with my girl to experience the obvious.

    I took photos of mols' play. She lines things up a lot so I stand and photograph it and then print them off and stick them into her folder. I've sat and taught myself from texts books with regard to autism, sensory issues and visual perception issues (all of which mol suffers from terribly). We can't go out shopping with her because she can't walk on tiled floors, I had to get a radar key because she can't tolerate the noise of hand dryers. It's so classic I don't know why no one else has the time to see it! We've been waiting for about 4 months now to see a peadiatrician and I had a phonecall from the school nurse about two weeks ago. She said she'd been asked to phone by the community peadiatrician and he wanted to know if I was sure I felt I needed an appointment for Mol to be assessed! I would be so easy sometimes to say "I give up" and to just leave it at that but Mol can't cope. She's always loved school because it was full of routine but now she tells me she doesn't like school anymore because the work is too hard and no one will help. It breaks my heart. Why do they make it so difficult!

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  • It sounds like the initial steps that are happening are ok. For example, you're protecting your daughter via her epilepsy by sn schooling and statementing etc and having the support of her current school is excellent. We don't have the support of the school. They're are doing their bit with a classroom helper but they don't listen to what I say and they don't tell me anything! This whole thing is one uphill battle and you only have to spend 2 mins with my girl to experience the obvious.

    I took photos of mols' play. She lines things up a lot so I stand and photograph it and then print them off and stick them into her folder. I've sat and taught myself from texts books with regard to autism, sensory issues and visual perception issues (all of which mol suffers from terribly). We can't go out shopping with her because she can't walk on tiled floors, I had to get a radar key because she can't tolerate the noise of hand dryers. It's so classic I don't know why no one else has the time to see it! We've been waiting for about 4 months now to see a peadiatrician and I had a phonecall from the school nurse about two weeks ago. She said she'd been asked to phone by the community peadiatrician and he wanted to know if I was sure I felt I needed an appointment for Mol to be assessed! I would be so easy sometimes to say "I give up" and to just leave it at that but Mol can't cope. She's always loved school because it was full of routine but now she tells me she doesn't like school anymore because the work is too hard and no one will help. It breaks my heart. Why do they make it so difficult!

Children
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