Paed Appt tomorrow and.......

[Jayzmummy]

I dont know if I should bother going!!!!!

Thats sounds bad but to be honest the man is a complete moron and he knows nothing about Autism. All that will happen is he will sit there and tell me that there is nothing wrong with my son????? Oh purleeeeaaaasssseee!!!!!

How many times do I have to bundle my wee man and family into the car to go off on another independent assessment???? All of these assessments highlight J's ASD and all say he has it......so why wont the Paed accept it?????

I saw our MP a few weeks back and explained our situation to him. I know he has been in contact with the LEA and we have had a response from them.....I also know the MP was writing to the LHA and asking for a referal to Elliott House or Guys.....so maybe the Paed is going to agree tomorrow to send us there....but somehow I dont think so....he is anti label.

So what do I do....


Go by myself and have a rather heated discussion with the moron....I still havent responded to the awful letter he had written about us and cc'd to everyone....and tell him we have had a private assessment done which again throws up ASD, so will no longer be needing his services.

Go along on my own and be spoken to like a doormat and be told to naff off because there is nothing wrong with my son so he will not send us for a dx assessment. and not tell him we have had CP to assess.

Take J with me...he hates going there....sit very quietly and just answer his questions and say nothing. Listen to him wittering on about his favourite words....funding and lack of resources...thank him for his time and walk out of the consultation room having achieved nothing.

Oh bugger I just dont know what to do.....dh cant come with me....he has a meeting....first appointment in two years that I'll be going it alone......

Just dont know what to do????????

[Tiggiwinkle]

Hi Jayzmummy-Its a tough one isnt it?
I think If I were you I would go on my own and get my feelings "off my chest" as it were.(if it does not upset you too much, that is.) From what you have posted, I cannot understand how he can continue to say that J does not have problems. What is his agenda I wonder?
Is there any way your GP could refer you to Guys? I thought we were always entitled to a second opinion if we were not happy with a doctor in the NHS?

[Davros]

I think you should go, just to show that you are a co-operative person, but I wouldn't take DS with you, far too much stress. Can you leave J somewhere? If not, postpone it but don't cancel. To be honest I would resist the temptation to get things off my chest if you can, it never helps you to piss these people off. Just make it as short as possible.

[KarenThirl]

I think I'd go too, but without J if possible. Mention the recent CP visit and diagnosis, stay calm as possible and then leave if he isn't convinced. You'll have made your point that J continues to have a genuine problem, and you will have demonstrate your willingness to cooperate with 'the system'. And take a bottle of Bach's Recovery Remedy before you go.

Good luck.

[Jayzmummy]

Had a very log natter this afternoon with my pal.....she works for NAS...together I think we have sorted out what I am going to do.....

Play ball. Sit quietly and answer his questions....you never know now MP has written to trust and PCT, the Paed may have decided to refer us on. I am not going to mention anything about the CP dx....that is private and as yet we do not have a copy of his report.
Im not going to take J with me....it will cause him far too much stress...he hates going to the hospital.

If he starts giving me a bashing....as he has done previously then I will gently point out that his opinions are based on ill informed information...I will not let rip...but I will not take his critism lieing down anymore..this is a man who has admitted to not knowing anything about ASD, yet he can quiet blatantly tell us that in his opinion J is just "slow" and has learning difficulties!!!!

Thanks for your opinions....they do help a lot.

[KarenThirl]

Attagirl. Looking forward to hearing how you get on. Stay cool!

[Tiggiwinkle]

How did it go Jayzmummy?

[Jayzmummy]

Appt. isnt until 3pm.......getting very anxious about what he is going to say to me.....also about the fact that I am not taking J along.

I just know we will go over the same ground....him saying "dx is not important"...me saying !yes it is"!!!!

Was going to post earlier today to ask for all your opinion as to why a dx is so important....but didnt get around to it.

Will post back later what happened.

[coppertop]

Good luck for this afternoon.

[Davros]

I've been waiting to hear so disappointed that you haven't been yet. What can you say about why dx is important that he will accept/understand? Imo, if someone IS something or HAS something I don't see what's wrong in that being acknowledged. You could also say that it helps you make sense of his behaviour and make better decisions about how to help him. I expect he just thinks everyone is after DLA and a statement, oooh lucky us!

[Easy]

JM

"I want to give my child as much help and support to deal with his needs as I can. Without a dx I can't get any support from the educational and support services who have the knowledge, experience and services to help me do that. For that reason I need a dx from you. Please help me to help my son."

Do you think this will be any help?

[Jayzmummy]

It would help....if only we didnt have the very badly worded and put together Statement....and a placement at a special school in Sept....
That s what he throws back at me.....silly me I shouldnt have had the staement finalised until I got a dx.......

[Tiggiwinkle]

Good luck!
Since the whole system seems to be geared up for just giving help to those with a dx, perhaps you could esplain that you are simply unable to get the help your DS needs without it.
From my own experience with my DS, I know just how reluctant his school are to provide any support without a dx; it is always "if" he get a dx we will do this or that. Without it, they are quite happy to just label a child as "naughty" or disobedient.

[Davros]

If he doesn't think a dx will do anything, what has he got AGAINST it then?

[Jayzmummy]

He thinks that j will live his life being known as the kid with ASD......ummmmmm he is now known as the freaky boy who collects pocket watches and kicks cr@p out of his mom!!!!!!

[Tiggiwinkle]

He certainly has a very strange attitude for a "professional"...
Where is he based-in a cdc or hospital?

[Jayzmummy]

He is based at the hospital.....but also at the local CDC....he is the Comm Paed for this area.....and by his own admission he knows NOTHING about ASD!!!!!!

[Jayzmummy]

Better go and get myself prepared for clenching my bottom cheeks and stopping my self from biting the little man.......

Hubby thinks it will be a frosty appointment....I've made sure I have a sweater just in case!!!!!

[Fio2]

we had a totally crap paed aswell, based at a CDC. So crap infact he didnt send my daughters CT scan onto a "proper" specialist to be looked at. he decided himself that it was fine

ggggrgrrr hope it goes well jayzmum

We got o Guys now and they are amazing! i would reccomend them. There is some way you can get referred isnt there? i know I did when i was pregnant with my 2nd child and no-one objected (except me)

[Jayzmummy]

Thats what we are hoping for, to get to see Gilly Baird at Guys. I asked paed to refer us....he refused. It has to be a pead who refers to guys. GP tried but it got returned saying it must be a Paed referral.
I have spoken with our MP and he was chasing it up for us.....so fingers crossed we can get a referral to Guys. NOT holding my breath though!!!!!!

[Davros]

Well my diagnosis is that he's an arse! In the current climate maybe he ought to consider learning a bit about autism? Or is that too much to expect? Good luck!

[Jayzmummy]

OMG!!!!!!!!!!!!!!!!!!!!!!!

Will post later what happened......but let me give you a little taster.....

a student sitting in on the consultation dared to speak up and tell the moron HE WAS WRONG!!!!!!!

2 very long hours later.....and I was still sat in the room listening to the silly little blighter!!!!!!

Must go and get supper.....but I will be back!!!!!

[Tiggiwinkle]

I look forward with interest....hope it was not too bad for you.

[Jayzmummy]

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

[Tiggiwinkle]

Jayzmummy-Are you still there-you must be absolutely exhausted after that session this afternoon!
Cogratulations on at least getting the referral to CAMHS. Lets hope you dont have to wait too long.

I cannot believe the things the paed said to you. ASD children cant be affectionate? No-one could be more loving with me than our DS. As for it being the parents that like the routines-he has got to be joking! What is he on?!!!
It is obviously very poor practice on his part to not even have read Js notes. I am really glad the student stood up to him and supported you.
As for his reason not to refer you to Guys "because of the other 40 children that need assessing"-why is he happy for them to be given a label and not J?? Seems like double standards to me!
Anyway, hope you have a relaxing evening after your ordeal. xx

[Merlot]

!

I'm speechless (for once!)

Well done you for getting everything across so well - Well done the student for standing up to the Paed (I hope it wont damage his prospects) and what a F*cking useless Paed! Sorry, but with a biological history like J's, how can anyone not take your concerns seriously!

It does look like it was worth your while going, doesn't it - at least you've now got a referral (God knows what the students made of your meeting, I bet that Paed has got a reputation as being a right p1llock!)