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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?

  • Hello

    Its never too late for a statement for education. I was told the same at secondary for my son who was undiagnosed but was struggling so much. We had an assessment for a statement without diagnosis and was turned down. We had to apply for this - the school did not see any reason why he needed it. However when we finally got a diagnosis at 15, we applied again (not the school) and got him statemented. Too little help and far too late. He had very little formal education from 14, when he finaly could not cope and broke down. However he did get a few GCSEs after the statement and odd days attendance in his last year.

    I did make waves as was so angry and put complaints in to the main education services and for the headmaster - who had little understanding and wasn't interested in every childs achieving their full potential, only in building a outstanding school record of high achievers.

    Like you I found the SENCO and teachers unbelievably lacking in education on ASD. Even when they had many children as such in the school.

    Like many parents, we got the vibes that the teachers blamed us for lacking in parenting skills and the way we were bringing hm up. It is hard to stand by your convictions that something was very wrong at school. However we had another child who was doing well at primary school and it was that that got us through (hubby and I) That we were not doing so wrong or we would have both children with problems.

    Later when our other child was at the same school and the teachers had this sudden dawning that she was the sibling. We saw some change in attitude. Eventually one teacher took great pride in telling my daughter at one of her school reviews that she had just undergone training in autism disorders!

    So at least something of the letter writing and complaining may have achieved some help for other children. I like to think so.

    It was not too late for a statement and it enabled our child to get some education. It is something that we are glad that we applied for.

  • I feel for you. It is horrendous that you should have to experience such hostility and indifference on the part of teachers and other professionals. My parents had to go through similar experiences when I was growing up. The head-teacher always  sighed and frowned whenever my dad came to her for assistance, and my mum has told me that school blamed her for my difficulties. It is shocking that this indifference and lack of understanding still exists, and it shows how important raising awareness of autism is in order to challenge perceptions.

  • 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). 

  • Hi

    Thanks for your reply.

    My two boys were under CAMHS from February time and I had also been in and out of different organisations for them both so there was a lot of history and paperwork and studies had already been done on them.  They had also already seen many pcsychotherepists too so there was a lot of information for the doctor to use on the day of diagnosis.  The appointment went on for 2 -3 hours in total. (Quite in depth) and profiles had already been done by school and us.  Also video taping of my elder boy.  The last stage on that day was to go through developmental history etc.  He was very thorough and did some play tests with both boys.

    However, I do understand where you are coming from.  From the outside is appears to be quick but it was an acumulation of facts and studies and therepies over the years that led to the diagnosis.

     My 9 year old has now completed his OT sensory profile now and CAMHS have stated that 100% their original diagnosis is correct.  My 11 year old has done the majority of his ADOS assesment and just has (I believe if I am correct) 3 play assesments left - however the assesor has already said it is quite clear that he is on the higher functioning end of autism and confirmed that she believes his original diagnosis is also true of aspergers/high functioning autism.  All that was ever required of CAMHS was for them to 'cross the t's and dot the i's'.

  • Hiya, been recently diagnosed myself aged 17 and may I say, how the hell did they diagnose two kids in one day?

    I had to have one session meeting my psychologist while she identified key areas of my problems and behaviour, then a separate session with both the psychologist and a CAHMs ASD specialst, then I had to come back AGAIN for a one to one interview where my mother was interviewed in another room by the psychologist regarding my early behaviour in life while the ASD specialist talked to me while I went through the tests they had (personality selection thing, the pictures of peoples eyes etc.)

    I then came back for another session over a week later to be officially diagnosed with Aspergers Syndrome, all of this took 6-8 months.

    You're right to believe that your 9 and 11 year olds were diagnosed wrong, there's no way they could have assessed them both independantly and thoroughly in just one day.

  • 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

  • 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