Back to see pead about DS1 tomorrow. Don't feel we have got many answers yet through assessments, but he so needs help. :-(

[Pinkchampagne]

And so do I! I am really finding him frustrating at home & don't know how best to deal with him. Everything is a struggle from getting him to sit up properly while eating to just getting his clothes on. School don't know what to do with him & I was told yesterday that he has been highlighted as one of the children who hasn't made progress this year. They thought they should warn me before I get his report.
Apparently even when working in a small group with the (IMO scary) headmistress, she still has to constantly get on at him to keep him on task.

He has seen a child psychologist, OT (once) and speech therapist, and the reports came back saying they didn't think there was much evidence of ASD. I know something is wrong though & it is becoming more obvious the older he gets.(he is 9 in Sept)

The thought of my little boy getting a dx used to upset me so much, but now the not knowing seems just as bad.

oh, god, PC - I'm so sorry.

It is heartreaking to have no pointers towards hlp and meanwhile he 'has made no progress' during a school year.

I have absolutely no knowldge or experince about any of this...so don't know what you should be asking the paed tomorrow...but maybe a specialist and urgent referral?

What is it that people go to BIBIC for? I wonder if that would be apropriate?

Anyway - I do send my love and hope you get someexplanation and way forward....

pinkchampagne, i started over 2 years ago trying to get a DX for DS and am still trying to get one. Have you been referred to CAMHS?

Sorry it's been such a frustrating time for you. Has your boy had any of the formal ASD screening tests, like ADOS, as if not that might be something to explore with the paed.

Some info about the different types of ASD screening tools from a US website

www.health.state.ny.us/community/infants_children/early_intervention/autism/screenin.htm

Blu - never been to bibic, but when others have discussed it, it's very very good at thoroughly testing all sorts of possible issues and giving you programmes to help with them but I don't think they diagnose

Oh goodness, I have no idea about BIBIC or CAHMS! I am fairly in the dark about a lot of all this still.

I think I still have your mail address somewhere in the depths of my inbox, Fio, so will mail you if I find it.

I didn't know our area where known for being a bit on the useless side, Fio. I just don't feel the one to one assessments (especially the one off OT & speech ones) were enough to get a true picture of DS's difficulties. Feel we're getting nowhere fast, yet his problems are not going away. I worry so much for what the future holds for him.

my son has just got his dates through for an ADOS test to assess fully for asd, We have had to really fight for this test though and go through Child and Mental Health Services to get this.

Thing is, the professionals don't seem to be looking for anything other than ASD. He ticks loads of boxes for dyspraxia, yet they say the school should look into that & don't investigate it further. School seem to be in the dark as to what to do, so we are getting nowhere fast.

I will see how this meeting goes tomorrow, but I don't feel from what I have got so far, that we will be any further along.

The ADOS was mentioned by the child psychologist as a possibility. Just had a look at the paperwork. It says "Recommended for a formal advance assessment of ASD, which could include ADOS. However this recommendation to be reconsidered with discussion with the referral."

My DS is not 'atypical' ASD and i think he is high functioning ASD or aspergers BUt he has been diagnosed with ODD so far and we have really had to push hard for the ADOS. We are also being assessed using the ADI-R test too. I think the more intelligent the child and the older the child the harder it is to get a DX. Push for the ADOS.

Has your DS had all the other assessments, bonkerz? (phsychologist, speech therapy etc)

I really feel at a loss atm. I think hearing about his lack of progress yesterday, really made it all hit home hard.

Sorry you are having such a frustrating time, Tclanger.

How is this ADOS test done, bonkerz?

Ds went for a 3 day assessment in a CAMHS setting which came up with no DX, he has not been assessed any other way although has had involvement from ed psych and pead and psychiatrist.

Oh PC, I am so sorry you are finding this so hard. I really don't know what to say as I have no experience, but if you ever feel like having a rant, please ring and I will just listen!

Oh dear, she is now on her 4th one today! The last one was because she coughed!

Whoops, sorry PC, wrong thread - so sorry!

Thank you. Don't apologise, Tclanger - I know how frustrating it is.

Got on ok today I guess. DS really didn't want another hospital appointment, and as I knew this would just a case of him being discussed while sitting there taking it all in, I was tempted not to even take him, but then thought I had better have him with me.

The pead was the 3rd one we have seen in as many appointments! He didn't have any of the notes from the psychologist & thought they may have been sent to original pead, who now works in another town!
I explained what I could of the outcome to those sessions & explained how his difficulties are not improving & how he has now come to a complete standstill at school.

We are no nearer a dx, but I mentioned the ADOS test, which he said was a possibility. He also said he needs to be seen at school by an educational psychologist & was going to write to school SENCO. I also talked to SENCO about this after the appt. He realised that he really needs extra support in school, but it may not be easy to get this.

I have to go back & see him in 4 months time.

It is frustrating, Tclanger. I hope the ed psych can get something in place for my DS, or he will slip further & further behind. It is good that your DS gets 15 hours one to one. My DS could really do with something like that.

I saw DS in the playground today (I work in the school, but in KS1), and he was just sitting alone on the bank, trapped in his own little world, while all the other children were playing around him. It is heartbreaking to see.

Pinkchampagne I am so sorry that you and your DS are being messed around like this .

And Tclanger too .