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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 

  • Honestly its a nightmare! We visited the SN school yesterday and it has hit me hard tbh - I came out thinking she wasn't that severe but my husband and her current school's SENCO came out thinking it was ideal for her!! Guess I was just being over protective mummy then. We had a frank talk with her SENCO afterwards and she told me a few things I didn't know about her behaviour at school and I could then see whay the SN school would be better for her. However the process for getting her there is gonna take about a year. Grrr.... We need the evidence gathered, the statement and then a referral to the school. And in the meantime what happens, she stays at two hours a day in a school where she isn't making friends, isn't learning anything, is a drain on their resources and is just there so we get other professionals to see what she is like. Such stupid system. I spoke to a lady from the borough today who talked me through the whole process and said we could prob expect her to move schools in about October all being well. So what does she do in September because the school won't take her up to Year 1, she will have to stay in Reception, still part time, with children a year younger than her all doing better than her - hmm...that's good for her self esteem?! 

    And to top it off my toddler starts Nursery next week and it was supposed to be so I got time for myself, but I won't have cos my daughter will still be at home...!

    I have started videoing her behaviour now when she acts up to show CDC at the end of the month - I use my phone and she doesn't know I am doing it cos I am always texting people and she just thinks I am doing that!

    I am really down about it all at the moment and have got to the stage where I just can't listen or see my other mummy friends I made when H was born becuase all their kids are doing 'so great' at school and they keep on about it either to my face or on say facebook. Does my head in and I am not mixing H with them anymore cos they are just horrible to her, and although she doesn't realise it, it still breaks my heart.

    xx

     

      

  • Honestly its a nightmare! We visited the SN school yesterday and it has hit me hard tbh - I came out thinking she wasn't that severe but my husband and her current school's SENCO came out thinking it was ideal for her!! Guess I was just being over protective mummy then. We had a frank talk with her SENCO afterwards and she told me a few things I didn't know about her behaviour at school and I could then see whay the SN school would be better for her. However the process for getting her there is gonna take about a year. Grrr.... We need the evidence gathered, the statement and then a referral to the school. And in the meantime what happens, she stays at two hours a day in a school where she isn't making friends, isn't learning anything, is a drain on their resources and is just there so we get other professionals to see what she is like. Such stupid system. I spoke to a lady from the borough today who talked me through the whole process and said we could prob expect her to move schools in about October all being well. So what does she do in September because the school won't take her up to Year 1, she will have to stay in Reception, still part time, with children a year younger than her all doing better than her - hmm...that's good for her self esteem?! 

    And to top it off my toddler starts Nursery next week and it was supposed to be so I got time for myself, but I won't have cos my daughter will still be at home...!

    I have started videoing her behaviour now when she acts up to show CDC at the end of the month - I use my phone and she doesn't know I am doing it cos I am always texting people and she just thinks I am doing that!

    I am really down about it all at the moment and have got to the stage where I just can't listen or see my other mummy friends I made when H was born becuase all their kids are doing 'so great' at school and they keep on about it either to my face or on say facebook. Does my head in and I am not mixing H with them anymore cos they are just horrible to her, and although she doesn't realise it, it still breaks my heart.

    xx

     

      

  • 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!

  • Thaks for your reply! I had read somewhere the other day I should take notes, like keep a diary from now until we our appt to give them a snapshot of daily life at home now. Might try videoing some of it too - like her tiptoe walking which is getting mroe and more obvious. I too have a folder with every report, IEP, appt and results since she was 18 months old and will be taking that with me too ; ). Her school have put in for her statement (she is on School Action Plus with an IEP) and on the basis of her epilepsy not being controlled at the moment we are looking into SN schooling. The SN school have said they would take her without a statement (based on the epilepsy) and would continue the process.

    We tried to get her diagnosed at 3yrs too but they simply told us she would 'catch up or grow out of it' and we were sent away, we went private and paid and they said the same - wait 6 months, wait a year....well here we are a year later and she is presenting more, and is further behind. The school have written in their reports that something should have been done earlier (not by me, by the professionals I was nagging) so she could have had a statement on entering school in September. I read on here people saying thier 2 or 3 year old has just been diagnosed and it really annoys me that we were fobbed off every time. Our Early Years Advisory Teacher even rang me before meeting me or my daughter to say she didn't feel the need to be involved as she didn't sound problematic enough. I really put my foot down on the phone to her and told she had to come and see her before making this judgement (and have since put in a formal complaint against her...)

    Anyways thanks again for your reply and glad we are not the only ones finding this so difficult. I will not be fobbed off this time and am definately keeping a diary now!

    xx 

  • 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.