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Am I Mad?????

hoggle

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

  • Thanks for your reply annie.

    It has and still is a very difficult predicament to be in but now CAMHS have confirmed once again diagnosis of my 9 year old and nearly finished ADOS on my 11 year old and are pretty certain that their diagnosis was correct too with him.

    My other half has got more involved now with meetings (although this in itself is difficult for him as he suffers with chronic illness). The idea of this is that if these professionals are hearing his point of view too, then it gives more backing into what I am saying.

    My partner had a meeting with the head teacher and expressed our concerns and today I had a meeting with our SENCO for their IEP's.  Very frustrating!  Altough they quite clearly have had some autism training they don't seem to totally understand the condition and how every child is different and that you need to adapt to them.  For example my 5 year old's teacher said we are teaching him to learn people's emotions and to read facial expressions and we are making him look at us all the time instead of turning his head away!!!  This explains a lot of his stress levels.  They are pushing him the wrong way. They also have not even put the two older children on School Action.  Although as they have had a ticking off from someone about my 5 year old they have reistated his School Action Plus but told us they have staffing problems.  As for statementing I have been told the older boys have no hope in hell as they are too old to apply and they are achieving at school.  My younger one will have to get considerably behind before they will even consider a statement application although they are admitting he already is falling behind his peers and we are only a term and half in!

    All in all we have made the decision that although the teaching standards in the school are quite high, their parent school relationship is usuless and they really have missed the point with autism.  As far as they are concerned they do not see the 'bad' behaviours in school so it is not their concern. ( However, I will add that last week my son told CAMHS that he punched a teacher, the school have now admitted there was and altercation but still are being vague about the punch)  I put it forward to them that what they are saying is that as long as a child achieves in school they can go home and smash car windows and steal stereo's etc and it is not their concern (this obviously was an extreme example i was using and not fact).  This was met with silence.  That silence was my decision maker.  I will be pulling all three children from the school as soon as I have found an appropriate school for them all where the staff are equipped with the correct attitude.

    Oh and just as a footnote the school SENCO is my two elder boys' class teacher too and her idea of getting my 9 year old to settle is to make him sit still (he has ADHD tendencies so needs to move around alot). 

Reply

  • Thanks for your reply annie.

    It has and still is a very difficult predicament to be in but now CAMHS have confirmed once again diagnosis of my 9 year old and nearly finished ADOS on my 11 year old and are pretty certain that their diagnosis was correct too with him.

    My other half has got more involved now with meetings (although this in itself is difficult for him as he suffers with chronic illness). The idea of this is that if these professionals are hearing his point of view too, then it gives more backing into what I am saying.

    My partner had a meeting with the head teacher and expressed our concerns and today I had a meeting with our SENCO for their IEP's.  Very frustrating!  Altough they quite clearly have had some autism training they don't seem to totally understand the condition and how every child is different and that you need to adapt to them.  For example my 5 year old's teacher said we are teaching him to learn people's emotions and to read facial expressions and we are making him look at us all the time instead of turning his head away!!!  This explains a lot of his stress levels.  They are pushing him the wrong way. They also have not even put the two older children on School Action.  Although as they have had a ticking off from someone about my 5 year old they have reistated his School Action Plus but told us they have staffing problems.  As for statementing I have been told the older boys have no hope in hell as they are too old to apply and they are achieving at school.  My younger one will have to get considerably behind before they will even consider a statement application although they are admitting he already is falling behind his peers and we are only a term and half in!

    All in all we have made the decision that although the teaching standards in the school are quite high, their parent school relationship is usuless and they really have missed the point with autism.  As far as they are concerned they do not see the 'bad' behaviours in school so it is not their concern. ( However, I will add that last week my son told CAMHS that he punched a teacher, the school have now admitted there was and altercation but still are being vague about the punch)  I put it forward to them that what they are saying is that as long as a child achieves in school they can go home and smash car windows and steal stereo's etc and it is not their concern (this obviously was an extreme example i was using and not fact).  This was met with silence.  That silence was my decision maker.  I will be pulling all three children from the school as soon as I have found an appropriate school for them all where the staff are equipped with the correct attitude.

    Oh and just as a footnote the school SENCO is my two elder boys' class teacher too and her idea of getting my 9 year old to settle is to make him sit still (he has ADHD tendencies so needs to move around alot). 

Children
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