MEETING today at 11.30am

[JenRose]

re our complaint of last month where the paed dx,d dd with an ASD and withdrew it 2 days later as he "hadnt read the file properly and the ed psych completely contradicts what you are telling me"

 

me and xdh are going, im very nervous, i dont know what they are going to say or do, on saturday i had a letter from dd,s new constultant at the hospital she is being transferred to saying she wants to see dd herself personally and not a member of her team so i dont think the old hospital are going to dx her today with anything as its clear the new one is taking over.

 

but i think i will kick off a bit (cos thats my nature!!) and demand at least an apology in writing if they refuse to dx, i dont know what else we can do really.

[annie]

Good luck at the meeting <'>

 

Annie

xx

[Karen A]

<'> <'> I really hope the meeting is helpful and that the professionals present are supportive.Karen.

[Tally]

GOOD LUCK!!!!!

 

It really does sound like they are taking you seriously.

 

Your daughter will be assessed by The Boss, and that can only be a good thing.

[loobylou2]

<'> Good luck!

[Flora]

Hi Jen

 

Good luck with your meeting

 

I found this article online earlier and while reading it I was thinking of your situation. The parents on here who went to educational tribunal, were also in the position where their child's dx was withdrawn. It's from July, and I'm not sure if you've already seen it (I don't remember it being posted on the board here), but here's the link as you might find it interesting. article link

 

flora

[Clare63]

Hope all went ok Jenrose

Clare x x x

[Suze]

<'> ............hope it went o.k. ......suzex

[JenRose]

well it went ok sort of, we didnt get a dx however.................

 

at first the meeting was very tense with the consultant talking over us and not letting us speak, she said there needed to be more evidence for a dx of ASD, i asked her how much more evidence did she want, and did she not believe what we were telling her, oh no no i do believe you but she appears to function well in nursery so i said yes well lots of children DO, my own son in particular appeared to function well in school but he still got a dx of AS when he wasnt it school for 2 years, she rambled on and on about there not being enough evidence so i opened up my file and pulled out the DSM-IV criteria and reeled off why dd SHOULD have a dx of an ASD, she went extremely quiet and i did all the talking for the next few minutes, she said

im not saying she ISNT ASD im saying that there are only SOME features, so i said ok well what about a PDD-NOS dx then?

she went very quiet again.

so i said to her WELL YOU TELL US WHAT OUR DAUGHTER HAS THEN.

she said (after flicking through dd,s notes) we could be talking pathalogical demand avoidance syndrome here because what you are telling me and the professionals are telling me is making me think of this,but we would have to go to sheffield, so i said do you mean Digby Tantum and she looked very shocked and said YES.

 

she asked me about mike, and who dx,d him and i said the NHS and also a private specialist and she said which school does he go to and i told her and she looked surprised and said "how did you get him in there? so i said "its called 3 tribunals and a lot of persistence" and she said oh very quietly.

 

so, we still havent got a dx, but i understand why she is reluctant, she is writing to the new consultant paed (and copying us in at our request) she has asked that there be an independent asessment done of dd (but she doesnt know if they will pay for Digby Tantum to do it) and she is also writing to the nursery to TELL THEM that they MUST address dd,s issues namely trouble with toileting etc etc and treat her according to her SN.

 

now the independent psych who will asess her is the one who refused to dx mike with an ASD until i discovered that she hadnt carried out the ADOS correctly and i wrote to her a year ago to ask her where was the copy of the video and could we see the notes, she bactracked immediately and dx,d him with PDD, so im hoping she will do a through job on dd and not try to fob us off.

[rainbow queen]

well i dont know what to say about this-

 

is there any legal advice available about it?

 

<'> <'> <'>

 

it looks like your doing all you can and trying your best....

[Suze]

............bet you neen a quiet sit down in a darkened room after that .......sound as though it was intense......best wishes suzex <'>

[Karen A]

............bet you neen a quiet sit down in a darkened room after that .......sound as though it was intense......best wishes suzex <'>

 

 

........... I think some other people at that meeting may also be looking for a darkened room to have a quiet sit down too.

[Nic m]

Well done for managing to get things this far and good luck with the next bit.

Nic

[JenRose]

karen-A

 

i know ONE person who will need a lie down in a darkened room when she received the letter asking her to asess DD, she will probably reach for a bottle of whisky!!!!!

 

she thought she gotten rid of us after the mike fiasco but no here we are again and she KNOWS she cannot fob us off cos she messed up big time over mike.

 

think it was the DSM-IV that changed the paeds tactics before then she was quite snotty and not listening to us, as soon as i pulled it out of the file she went very quiet and when i casually told her we fought 3 tribunals to get our son in the right education AND that the private psych liased with th eNHS she suddenly remembered that she "knows" the private psych who dx,d mike and thats when she started saying she would write letters.

 

she actually told me off for emailing her and said "i dont respond to emails from patients or their parents you should have put it in writing" so i fired back

"well you need to speak to your reception team who not only gave me your email address but told me to send it that way instead of by letter" and she said oh yes i will.

 

i feel quite sad/upset cos we have to go through it all again and are no nearer to knowing id dd is asd, well we know she is but we need an official dx.

[stressedmumto2]

Jenrose, sounds to me like you went in and done very well.

 

I hope you get your dx for your child, good lcuk and take care <'>

[BusyLizzie100]

Jenrose, sounds like you did a brilliant job on getting your point across. Well done you for hanging on in there

 

Do you want to use the same independent psych if he/she messed up with your son? Do you have an option to try someone else? Just a thought...

 

We have to fight so hard for our kids, don't we. Sounds like you're one h of a fighter. <'>

 

Hope you have a quiet evening!

 

Lizzie xx

[Flora]

Jen

 

I really admire you. You're one tough lady and you know you'll get there in the end.

 

flora X