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????????

That reference to "waste of time & resources" is just wicked - just shows which he thinks is more important, children's needs or budget targets. And to put you through the mill like that! Brilliantly well done for standing up to him. His inviting an audience to show off to backfired nicely, didn't it!

Jayzmummy . What a nightmare. I assume this paediatrician did take the hippocratic oath? How can it possible be 'unethical' to refer you ffs? It seems like he's more interested in earning himself some brownie points with the PCT funding department. Three cheers for the medical student though.

Well done JM, sounds like you did really well and that student was dynamite! How does he think not referring ANY children makes it OK? He could start with just one couldn't he? Any other way to get a referral to GB or LW? Via the NAS or phone Guys direct? I did it by phoning direct but that was a long time ago and it was a private appt. Can GP refer direct? At least you tripped the silly old fool up good and proper Bet you feel like shit though

I contacted Gilly Bairds secretary and it has to be a comm.Paed referral....as we only have one Commpaed that makes it difficult!!!!
GP contacted NAS and they sent her all the info. She applied to PCT for funding which they intially agrre to on the proviso that 1. the assessment could not be expidited locally and 2. that the time scale was not acceptable. The GP contacted the Paed to find out how long it would be for assessment. We already know it can not be completed by anyone in our area and that all ASD assessments are carried out by a visiting CP. She travel up from JimJams neck of the woods once a month for one day. Each child she sees for 5 sessions before making her dx.
The Paed replied to GP's letter stateing that in his opinion it would not be in J's best interest to have adx assessment....what would it achieve???
GP forwarded the letter to PCT....so we were basically buggered!!!!!!

Went through all of this with Paed today after he agreed that given J's biological families history it would be beneficial for an assessment to be performed.....he asked who had replied to the letter from the PCT.....HE DID!!!!!!!

He went bright red....apologised and muttered something about going round in circles!!!!!!

Sorry for the very badly written last post....its been a long day!!!!

JM, you're amazing! I would have fallen at the first fence and I'm in awe of how you handled that man. Well done for beating him down, and Praise Be to the fates and whatever for ensuring such an astute student was present at the same time!

Just a thought - what's a man with no knowledge of ASD working as a paediatrician?! Have you made a complaint to the health authority about him? I mean, it makes as much sense to me as having a hospital porter doing open heart surgery - he shouldn't be in the job.

Just caught up with this and I am gobsmacked. Sitting here with my chin on the floor. The student sounds a star- so they are training a dr who really understands autism- wow. Wherever he ends up working I'm sure he will make many families happy (I still feel relief on the occasions we come ascross a dr who "gets it")

Wish I could introoduce you to my friend (maybe I can- I'll talk to her when she gets back from holiday). She has 2 adopted dd's and their family history is incredibly similar to Jays. She had a terrible time getting her dd's autism recognised as everythng was put down to emotional troubles. She found an ally in a senior psychologist who has been a great help to her.

Just picking my chin up off the floor now.....

Jayzmummy, what about writing the Paed a letter setting out the situation and copying the Health Authority, Gilly Baird etc? You could just put the facts, e.g. the adoption, the need for proper ASD assessment which he does not have the knowledge of ASD to do, the offer of assessment with GB or Elliot House and how that has been prevented (by mistake?) and that you need his help with a referral. I don't suppose you've got anything to lose. I'm not saying write a letter of complaint, just a simple and clear letter stating the issues and how they can be resolved. Then you've got that letter in case you do need to take it further.

Well done Jayzmummy. Read this thread yesterday before you went and just caught up now. You must have been drained after all that but did really well to hold it together like that. Hope you get some positive outcome from it now.

Davros, My Hubby said exactly the same thing last night. I will write a letter to the Paed thanking him for seeing me and then clarifying all the points that were discussed. I will add our reasons for wanting to have the assessment done so we can be better geared up to dealing with J's difficulties, then at least something will be documented on J's medical file from us and hopefully the Paed will respond.

I feel a bit devious in doing this when we have had a DISCO assessment done and the dx is Autism, but I just know that the Paed will say that the assessment has been carried out by someone unknown to the area and will discount it. The dx was for us more than anything.....hubby and I wanted to know that we were not barking up the wrong tree. Does that make sense????

It does make sense. But, as far as I can see, you DO have a dx, whatever he thinks about it, and a bloody good one at that. I think the letter is worth writing and agree with the thanking him etc, its worth setting it out in writing anyway and may be useful in the future. Is J definitely going to the special school in Sept? Is he still doing a few sessions there now and how is it going?

I have not told anyone about the CP visiting us...apart from everyone here!!!!
I thought it best to wait until we had the dx in writing, which should be any day now.

I have grave concerns because when we have forwarded copies of any other independent assessments the Paed had discredited them.....even though the writers of these reports are highly respected professionals who know more about and understand ASD better than anyone in our locality.

I just have a feeling that if and when I send a copy of the CP's report to the Paed it will just add more fuel to his fire.....he wrote to us a few months back sating that in his opinion we were wasting our time and money by having independent assessments done and all it was doing was making J's medical file embarrassingly thick!!!!!

J is still attending the special school on Friday afternoons for 2 hours....J appears to be very happy and content there but his teacher has reported that he does not acknowledge any of the other children and he constantly is asking her what the time is and how long til he can go home with Mummy. I have had a meeting with his class teacher and she feels that the placement might not be the right place for him. He is higher functioning than the rest of the children in the class.....however she has not formally assessed him educationally and has stated that he needs constant supervision for all table top activities.

The class teacher has informed us of a school about 20 miles away that has a ASD unit and she feels that this may be the better choice for J. He has a secure starting date at the special school for Sept 05....and in the meantime the LEA have now agreed link education at home for 5 hours a week...starting after the Easter holidays have finished.

The class teacher knows we were thinking about having a private assessment done....she knows the CP who performed it and spoke very highly of him.
Her last words to me were if you go ahead with a private dx lets just wait and see what it throws up.

Still in a quandrey what to do about the special school.....I know J is happy there and for the first time since he started school he is in an environment where he can shine. However I am not truely convinced that it is the right place for J and in an ideal world I would prefer for him to go to a specialised ASD unit. The CP mentioned a school in Taunton which he thought would be ideal for J....but Taunton is 50 miles away...so J would have to go there as a residential student.

My ds1 won a sportmans scholarship and is starting boarding school in Sept....which is also in Taunton....so the thought of having both my boys away from me just breaks my heart....hubby has suggested selling up and moving to Taunton.....but the house we live in has been in his family for 400+ years and I would feel awful if I had to end the history of his family living in our village.

Too much to think about....my head hurts!!!