WARNING VERY VERY LONG POST!!!!!!!!
Right here goes....I will TRY to keep it short and sweet....and to the point.
I arrived to be greeted by the nurse asking where J was. I explained that he would not be joining me....she tottled off to go and tell Paed that J was not accompanying me. Left to wait for 25 mins.
Paed finally arrived off the ward and apologised for keeping me waiting because he had forgotten I was there and had just sat down to have a cup of tea when he remembered I was sat waiting in the out patients dept!!!!!!!!
Pead asked if I minded a team of students sitting in to observe our meeting. Of course I didn't.....more witnesses to this mans incompetance.
Paed asked why J was not attending....explained that I wanted to get a few things dealt with and that I didnt feel it appropriate that J should sit in on our meeting, as it was not good for a child to hear his mother talk about his weaknesses within earshot......to which the Paed replied....."Oh J wouldnt understand anyway would he". Blood pressure started to rise!!!!!
Paed explained that he had requested our appointment because at our last meeting he felt that we had achieved a lot and wanted to see how things were progressing. I sat very puzzeled because at the last meeting he basically accussed hubby and I of having MSBP and had said he felt we should be referred for psychtherapy, as there was nothing blatantly obviously wrong with J!!!!
I asked Paed why he felt the last meeting had been so productive.....we have not been referred to CAMHS, have not moved any further to having a diagnostic assessment, have had no intervention from any professional in the last 6 months and J was still not in school full time!!!!
Paed sat really staring at me with a look on his face that started to make me quiver.....but all I kept thinking is stay strong...remember Davros's words and dont make this man my enemy!!!!!
Paed waffled on about how J's behaviour at home is probably a direct result of him being anxious and over dependant upon me.....ummmmmm what about his behaviour being that of a child who is so frustrated because he cant play like his friends because he doesnt understand the underwritten social rules of life???????
Paed made some pretty cr&ppy comments like .....
Children with ASD have no ability to be affectionate.
ASD is not such a pervasive condition!!!!!
Do children with ASD really need routine or is it just something parents feel they need to do to keep the child happy????????
Wish there was a headbanging emotion here!!!!
Paed asked me what I wanted him to do, how could he offer me any help.
So thats when I went for it BIG STYLE.......
Asked to be referred to Guys to see Gilly Baird...why should he???? Errrr because my son is adopted and his birth family have a long history of szchophrenia and Autism...his oldest biological sibling is in a residential unit because he has psychological problems and has a tendency to commit arson....the next eldest sibling is in a secure unit because he caused a three month old baby to suffer severe brain damage because he beat it so badly when it wouldnt stop crying.....the next sibling has a dx of Autism and the next has a dx of Aspergers.
WE NEED TO KNOW WHAT WE ARE DEALING WITH!!!!!!
"Oh" replies Paed....."I didnt know J was adopted and I have no notes of his biological history"....ummmm YES you have....I supplied all details to the hospital when J was first referred at age 2yrs and 7 months and have kept information updated as and when we have been given any new details!!!!!!!!!!!!!!
Thats when I started to get somewhere!!!!!!
I took control because I just knew this man hadnt even bothered to read J's records!!!!
Pointed out that we expressed our concerns about J's behaviour from when he was age 2yrs and 6 months....why was our son non-verbal??? SALT had written a report then that J was not socially interacting as he should have been for his age.
Why were we not referred on at that stage for ASD assessment????
Got on a right roll.....it all flooded out...all my facts, figures, dates everything.....how school had reported that J was not folowing social rules at age 5....how they could not get him to interact at age 6....blah blah blah.....
Told Paed that we have been in contact with Simon Baron-Cohen and that after having a peep at J's independent reports he feels J should be assessed by either Lorna Wing or Gilly Baird asap.....
Paed then said and I quote.....
"How is a dx assessment going to make it any better for J. I just cant see the point."
I rabbitted on about how we need to discount ASD, that we need to know what is going on in my wee mans head so that we can ensure he will reach his full potential.
Paed replied " Well I just think its a waste of time and resources to do so."
All the time this backwards and forwards arguement was going on one of the students was sitting making notes.....he then interupted and asked if could say something......
Student then let rip.....he really went for it....explained how his own family are affeccted by ASD and that in his opinion early dx is essential to fully ensure the needs of the child are met......
Meeting wound up with Paed agreeing to refer J to CAMHS...so at least we will be getting some interaction and guidance....though when only the good Lord above knows!!!!!
Paed has peed me off because he has said that it would be unethical for him to refer J to Guys because "what about the other 40 children in our area who also need to be assessed?" He is of the opinion that if he referred J he would have to refer all te other children waiting to be assessed and he knows the PCT would not allow that......so I have to tackle the PCT...who had previously agreed to fund us to go to Elliott House....but that was stopped when a local Paed wrote his letter saying that J would not benefit from a dx!!!!!!!
I of course took great delight in mentioning this to the Paed....he asked who had written the letter stating J should not be assessed...."Ummmm YOU DID"!!!!!!!!
Circles and even more circles....but hey I'll get there eventually.
If you made it to the end without falling asleep....well done xxxxx