Passing the buck!

[claw3]

Thought i was finally getting somewhere. Ds is finally nearing a dx of autism. Obviously a dx of autism is of no use to anyone, unless this results in getting some help and support especially in school.

Had our 3rd visit to CAMHS yesterday and after discussing his difficulties in school, was told they cannot help with school I will just have to accept that the self harming behaviour is just something that ASD children do.

Emailed OT about aches and pains in his legs (suspect due to hyper mobility, as has severe hyper mobility in his arms) and was told to contact my GP and hyper mobility is common in ASD children.

ASD dx team, have told me after dx, ds will be discharged from their service.

Dietitian has referred ds onto feeding clinic. But stated as eating is a long standing problem, i will just have to accept that this is as good as it gets.

Now we have a label, professionals seem to be using this as an excuse, now there is no need to find the cause of ds's difficulties. What is the point of getting a dx?

So fucking sick of hearing 'his problems are not THAT severe' and he is 'such a happy child'

He cant eat, he is scared of others peoples food, he pulls out his eyelashes, scratches and picks the skin off of his face, struggles to dress/undress, struggles to write, refuses to eat in school etc, etc, etc. But he is doing fine academically and is advanced in some areas.

Im the negative one because i am not jumping for fucking joy.

We are having similar problems with dd1, although she has a dx of Aspergers she has been discharged and now (like your ds) has pains in her legs, week arms (which she has always had but no one will listen), she struggles to run and open doors but the school doesn't see a problem , i took her to the GP and he didn't see a problem. Dd1 is getting more upset and anxious as other children are noticing how week she is .

I did manage to get hold of the community school nurse (through dd2's HV) and dd1 now does a movement class with a 1:1 at school (when they can be bothered) but this seems to be useless.

Her GP wont refer her to OT and says its up to the school nurse to refer her .

I have also been trying to get OT for dd2 (ASD) and have been refused twice .

Dd1's dx is useless really as she gets no extra help at school (apart from the movement class) and now she has a DX they don't seem too bothered about any other problems she may have.

oh bloody hell, claw3!

agree with Starlight - you need to put this in black and white to them - sometimes having it spelled out (and put down as a matter of record) makes people sit up and take notice.

I don't know what else to suggest. we were told we had to accept that dd1 would never talk at school, and quite possibly would never learn (she has major control issues, and is unable to accept being in a classroom with other children without a 1-to-1 helper)

we moved schools, and hey presto, she is happy, settled, chatting away, and learning. LEA ed psych visited last week - I can't wait to see how he is going ot spin this one, when he writes his report.

set out everything that our ds can't do age-appropriately (I know this is depressing), and ask why he isn't receiving help to address these areas, eg dressing skill, toiletting etc.

the dietician advice is really too. I really can't believe the shite soem so-called professionals come out with

dd1 was discharged from ASD clinic and Paeds too, after diagnosis. she was 3 the last time she saw a paed/other developmental person. and she is severely ASD.

the whole system is a complete joke.

Have applied for Statutory assessment, going to panel next week.

All this fighting for referrals, then referrals turn out to be as good as useless.

I feel like telling them all to piss off, stick the dx up their arses and doing my own thing.

Really am feeling like its me and ds against the rest of the world at the moment.

Education system sucks, even with recommendations from professionals its a fight to get them put into place. Even with a Statement, it will be complaint, after complaint to make them do what they are suppose to be doing by Law.

Professionals, schools etc all stick together, like it is some kind of elite club and wont speak out against each other.

I need to get out and do some shopping, before i explode.

Thanks everyone.

Thanks Starlight, can you give me a slap and a kick up the arse and tell me to stop feeling sorry for myself, i think that is what is needed here

Right food shop to take my mind off of it, a cream cake and service will resume as normal in a few hours!

head meet desk

Been shopping, have a sugar doughnut and a coffee, have calmed down a bit now.

CAMHS told me they can see no signs of a social and communication disorder (despite ds hugging her legs 5 minutes after meeting her for the 1st time. Didnt say a word all session apart from NO NO NO, then upon leaving asked if he could tell her something, then went on a rambling, muddled one talking about a place called Tismary and his brothers being his cousins and his dad George (George is his imaginary friend, not his dad) and made no sense whatsoever)

and perhaps all these different experts i am taking ds to see is what is making ds feel different.

Got home and wrote her an email, stating perhaps if its the different experts he is seeing that is making him feel different, then perhaps ds should not go to see them anymore, as they are experts and perhaps a second opinion from their ASD team might be more appropriate as obviously i wouldnt want ds to be wrongly dxed.

They didnt reply, but second appointment went well and i felt i was finally getting somewhere as ds goes off to speak to someone about the 'worries in his head'.

Seen as most of the 'worries in his head' seem to be about school, i thought we were making progress.

3rd appointment they tell me that cant help with school, just sleeping issue and 'worries in his head'

'worries in his head' are about school, yes Ouryve pass me that desk!

Oh and OT went into school on 3rd March as they are having to reassess, after i made a complaint and got previous OT report withdrawn from circulation, as it was from December 2008 and extreme inaccurate.

Since starting school for over a year ds had been complaining of children hitting him several times every day. OT attended a meeting and explained that because of his sensory issues, it could 'feel' like that to ds, hence given an overwhelmed card. Made no comment about this in her report, just about 'how well he was doing and having NO problems'

Anyhow new OT that went in on 3rd, asked me what problems were, i told her lunchtime, playtime, PE. No problems in the class room.

She said she would observe one of these sessions and then write her report. Phoned me to say she didnt notice any problems in school.

Great i say, when did you observe him......in the class room.

Oh and CAMHS watched ds rock back and forth and jump to his feet and throw himself onto all the seats in the waiting area.

and she asked ds in her squeaky little children show presenter voice 'are you trying out all the different seats'

NO YOU KNOB HEAD, THAT IS ASD BEHAVIOUR i felt like shouting!