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,

     

    Most importantly no I dont think you are mad lol!! I have 4 children who all have difficulties in some way. My eldest 16 has AS and Dyspraxia, My 14 year old is nt but has mears irenene. My 13 year old  also nt had awful trouble with comunication issues as a toddler and was diagnoised with elective mutisum disorder and went to a comunication unit close by but it was then discovered a year later aged 4 that through something as simple as glue ear (that the health authorities missed) she had been born with it and meant she was actually deaf from birth as it was so servere, so a cupple of operations later she could hear and the long struggle with speach therapy (coinsidently 3 of my kids have had to go through speach therapy or as my youngest called it peach perapy! lol!!) she is now doing extremely well although she does still have a few comunication issues and OCD mildly. My youngest son 11 is hyperactive and very imature and is now going through ADOS assesment with  CAMHS.

     

    However I have been lucky and have not faced the doubters like you have. (professional ones anyway!!) I would strongly urge you to contact as many of the helplines through NAS for advice and support including the educational rights support line. If you can prove that the headteacher has overstepped his professional bounds and has withdrawn support when there is a diagnosis in place, whether they agree with the diagnosis or not they must be bound by law to give that support. You could complain to your LEA i would of thought. Im rambiling now!! lol! please get proper advice and let us know how things turn out.

     

    Sorry I couldnt be of any practicle help.

    Good luck with everything

    Sam

    x

Reply
  • Hi hoggle,

     

    Most importantly no I dont think you are mad lol!! I have 4 children who all have difficulties in some way. My eldest 16 has AS and Dyspraxia, My 14 year old is nt but has mears irenene. My 13 year old  also nt had awful trouble with comunication issues as a toddler and was diagnoised with elective mutisum disorder and went to a comunication unit close by but it was then discovered a year later aged 4 that through something as simple as glue ear (that the health authorities missed) she had been born with it and meant she was actually deaf from birth as it was so servere, so a cupple of operations later she could hear and the long struggle with speach therapy (coinsidently 3 of my kids have had to go through speach therapy or as my youngest called it peach perapy! lol!!) she is now doing extremely well although she does still have a few comunication issues and OCD mildly. My youngest son 11 is hyperactive and very imature and is now going through ADOS assesment with  CAMHS.

     

    However I have been lucky and have not faced the doubters like you have. (professional ones anyway!!) I would strongly urge you to contact as many of the helplines through NAS for advice and support including the educational rights support line. If you can prove that the headteacher has overstepped his professional bounds and has withdrawn support when there is a diagnosis in place, whether they agree with the diagnosis or not they must be bound by law to give that support. You could complain to your LEA i would of thought. Im rambiling now!! lol! please get proper advice and let us know how things turn out.

     

    Sorry I couldnt be of any practicle help.

    Good luck with everything

    Sam

    x

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