OH this is going to be a VERY LONG RANT.................

[jenk1]

Today we were with the clinical psych at CAMHS re DD,s toileting difficulties.

DD who is nearly 5 and dx,d PDD-NOS (privately) is undergoing assessment from CAMHS,but they are trying to sort her toileting difficulties out.

Last week she went on the potty,toilet but she has stopped now and refused to do it.

So the advice from the clinical psych today is

1, To play with her give her special mummy and special daddy time cos she has to wonder what DD is getting from the level of care she receives from us

2, DD is NOT anxious over the toilet she just doesnt like going on it

3, She isnt going to refer her to OT (as our request) cos she MAY have sensory issues ormay not- we dont know yet (she got very arsery when we asked her to refer)

4, DD does NOT have the same difficulties as DS (ASD) and she might as well have said repeat after me the amount of times she said it.

5, She is too sociable for ASD cos when she went to see her at school she was chatty and didnt show any difficulty at talking to her- my reply was well thats because you are an adult.

so i feel a bit deflated,its exactly the same scenario as DS was 4 years ago,i really didnt think they were as thick this time round, i was very calm though and kept my cool,but im very disappointed in her attitude and am thinking of writing to her.

[Blossomhill]

poor you did they mention at all the fact your dd has CP????

[jenk1]

no it wasnt mentioned at all,it is mild but they didnt mention it.

DD is ready to toilet train,she proved it last week and i really thought we,d cracked it but im really disgusted at the play with her attitude, she also said DD has so many positive things going for her and i think if we can just get this sorted she has a good outlook.

we know she has many positive things going for her,she is a happy girl when everything is going her way, but im not letting it get me down,i knew there would be a fight to get an NHS dx and ill carry on fighting for her just like i did with DS.

[Blossomhill]

good for you Jenk if anyone can do it you can xxx

[TotalChaos]

good luck with the battle, sorry the psych was so clueless.

[feelingbetter]

• who are these people?

She'll be fine with you in her corner

[jenk1]

Aw thanks for the supportive messages, its really nice
for a while this afternoon i was starting to think i was imagineing things and at parents evening tonight it was how sociable DD is etc etc,then i came home and re read the private dx assessment from last year and that made me feel stronger.

ive emailed the private psych who dx,d both DS and DD as he helped me fight the NHS last time for DS to ask for his advice,i dont want to go off on one,although i do feel like doing!!!

she must only be about 21,newly qualified,im probably old enough to be her mother haha and she sits there telling me to "play" with DD more oh and to let DD direct the play hahahaha, its so laughable!!!

[jenk1]

ive drafted a letter to send,which will be posted tomorrow.

it basically says how disappointed we are that she thinks our parenting skills may be to blame for DD,s toileting difficulties and that we also remind her our son is ASD,i have AS and that we know and recognise the triad of impairment,also that DD is dx,d privately with PDD-NOS.

we have also asked to have a look at DDs medical files which i know she wont like.

im feeling a bit tearful today,i cant believe the crap that some "professionals" will come out with, im also suffering from a lack of confidence and wondering if im doing the right thing in sending the letter,im feeling a little sorry for the psych,i dont know why perhaps because shes clueless!!!!

just feeling a little that after all that happened with DS we,ve got to go through all the same crap again.

[bullet123]

Well, it is possible to be sociable (or at least appear to be sociable) and still be on the spectrum. With Ds1, because he's verbal, what I've foudn helps when people question his diagnosis because he's speaking is to point out how his communication and his language differs from other people. For example, this was a conversation yesterday:

Me: "Did you have a nice day at school today?"

Ds1: "KK is a green alien." Long pause. "And we hope he not get out. The dragon is sneezing."

Now, that actually refers to two different days, a theatre production came to the school on Tuesday and yesterday I think they were reading a book about a dragon (but I'm not sure about that). Ds1 likes to talk about what he wants to, or if he is trying to reply his difficulties and differences with language mean you have to try and get into his thoughts and interpret them. So, with your dd, if you can give examples of how her communication differs from other children her age, then you can try and counter the arguments.

[jenk1]

hmm DD is complex because she "appears" to be very sociable at first glance,but when you spend time with her you realise that shes imitating other children and watching their every move,she prefers the company of adults to children as well.

she does say some funny things such as every morning

"mummy you,re 36 arent you,yes you,re 36"

today her teacher told me she went in this morning with a dress on (non uniform day) and its a pink dress with white spots but she said its white with pink all around it!!

when shes talking about other children she categorises them,for instance she doesnt want a certain girl to come to her party cos she doesnt like her hair which is curly and thats that for DD, but CAMHS already know all this they have the reports from the CDC and they dx,d DS as well.