Am I Mad?????

I have been battling since my 11 year old son was 2 with severe violence and agression amongst other things to get a diagnosis of some kind.  I have been pushed from pillar to post to get a diagnosis - including a multitude of parenting clasess!! - and finally this summer CAMHS diagnosed him with high functioning autism.

I have five children in all.  My fourth child was the first to get a diagnosis of ASD in December of last year.  He unlike my 11 year was quite clearly different from the day he was born I knew he was special and struggled for someone to listen.  When he was approaching two the Health Visitor finally took notice of his inability to talk and communicate and the fact that he used food to show how stressed he was.  He was seen by a paediatrician who thought he showed autistic traits.  Subsequently we moved 300 miles closer to family and he had to be referred to a new paediatrician who put him on a social and communication pathway.  A few months later he was given a place in a Child Development Centre.  A couple of months later he was diagnosed. (aged 4).

At the same time my 9 year old son (who was 8 at the time) was having counselling because he was depressive and was struggling to form any friends etc.  The therepist then brought it to my attention that she thought there was something underlying that had been missed (he had been given a diagnosis of dispraxia when he was 5), and recommended that I got him referred to a specialist.

My 11 year old and my 9 year old were both seen on the same day and both diagnosed on the same day by CAMHS, my 9 year old diagnosed with ASD with ADHD tendencies.

All of these problems had a knock on effect because during this process my new Health Visitor was seeing me for my youngest son who was 2 at the time for speech delay and more importantly Pica a poo smearing.  She thought he also needed to see a specialist because the Pica was quite severe.  I was seen and he too was put on the social communication pathway (because of the family link) with the same doctor that diagnosed my fourth child.  However I am still in denial that he too is on the spectrum, and he is yet to be seen (8 months waiting now).

During all of this I attended the Early Bird course which was a real eye opener it showed me that there were really strong autistic traits in all my children.

The doctor who diagnosed my fourth child and a couple of unamed professionals have now put in a complaint to CAMHS about my 9 and 11 year olds diagnosis'.  Some health professionals have also made comments about the possibility that I am manufacturing these conditions in my children.  Even though other people brought their conditions to my attention not the other way around.  It is incredibly frustrating and upsetting to be accused of this with the reason for these accusations being that I could not possibly have more than one child with difficulties.  I forgot to mention that my eldest daughter was diagnosed with Auditory Processing Disorder when she was 5, again an issue her school raised not me.

As a result CAMHS are absolutely adament that they are not retracting the diagnosis for my 9 year old son (the one I was totally oblivious too because I thought he was the way he was because of his dispraxia) but are being made to do an ADOS (tomorrow) to determine whether they were correct about my 11 year old even though they have put him on anit pyschotics!  The 11 year old is the one that I have always had the biggest struggles with because of the immense amount of violence and aggression. (Plus if all my children are different I would not know any different because thats all I have ever know in them)

The knock on effect of all this means that the children's school have withdrawn all support from all children including the one who has just started there after having attended a CDC.  The head teacher is acting appalingly towards us and to be quite honest, extremely rude and over stepping his professional postition.

Can anyone help?  How can I prove my sanity?  I am also going to be withdrawing them from their current school but when do I do it before or after confirmed diagnosis?

Parents
  • Hi Hoggle

    This is a shocking situation for you to be in. I know lots of families where some or all children have a difficulty one way or another. Jacqui Jackson being one of them, are you familiar with her? She has a son Luke Jackson on the spectrum, plus 3 other sons, 1 with autism, 1 with dyslexia, 1 with ADHD - I think. If you google her, you might be able to find a contact email for her, she lives in Blackpool, she might be able to help? She has written books, documentaries etc.

    As Sam suggested, I would also recommend ringing the NAS education line, together with IPSEA who are also specialised in SEN education issues.

    I'm not sure whether school are acting legally, depends on what documents your children have, eg statements, school action etc. What's your SENCO like, any better than the Head? Is there anyone at all professionally who will back you up? School Health Advisor any good?

    I would suggest that you fight them on this, it is not right that you should be attacked in this way. Could Parent Partnership help (attached to, but impartial from the LEA).

    I wish you lots of luck, don't let them grind you down, speak to the education lines first and they will surely point you in the right direction.

    x

Reply
  • Hi Hoggle

    This is a shocking situation for you to be in. I know lots of families where some or all children have a difficulty one way or another. Jacqui Jackson being one of them, are you familiar with her? She has a son Luke Jackson on the spectrum, plus 3 other sons, 1 with autism, 1 with dyslexia, 1 with ADHD - I think. If you google her, you might be able to find a contact email for her, she lives in Blackpool, she might be able to help? She has written books, documentaries etc.

    As Sam suggested, I would also recommend ringing the NAS education line, together with IPSEA who are also specialised in SEN education issues.

    I'm not sure whether school are acting legally, depends on what documents your children have, eg statements, school action etc. What's your SENCO like, any better than the Head? Is there anyone at all professionally who will back you up? School Health Advisor any good?

    I would suggest that you fight them on this, it is not right that you should be attacked in this way. Could Parent Partnership help (attached to, but impartial from the LEA).

    I wish you lots of luck, don't let them grind you down, speak to the education lines first and they will surely point you in the right direction.

    x

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