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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

  • 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

     

      

Reply

  • 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

     

      

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