Is your child deemed 'unassessable' ?

[smallworld]

Hi,

Apologies for the late hour posting, I'm last in the queue for the pc !

 

I'm just wondering if anyone else has been told by any agency that they are unable to formally assess your child ( in our case OT, who could not get him to sit down for long enough to complete their standard assessment ) so he is left with no assessment and a limited involvement with school in delivering an OT programme.

 

This seems to be a regular occurence with the usual comment of 'we feel that **** may know far more than he is willing to demonstrate and as such is difficult to assess'.........

 

Our Paed, actually discharged him last year because he couldn't cope with a yearly visit to her office ( trashed the place ) and she felt she couldn't accurately assess his progress there.

 

Am I right in feeling totally let down by all this ? and more importantly, that no-one is involved anymore because of his inability to cope with 'their' enviroment

 

wac

Edited October 30, 2006 by waccoe

[OPooh]

<'> I did have a stage of the assessment programme "ignored" when he was 3 because he wouldn't "behave" enough for them to assess his behaviour. Dam stupid if you ask me.

[Flora]

Waccoe... you must feel extremely frustrated to say the least! <'>

 

Luke (aka Ben) has had many ed psych assessments and there have always been areas of the tests where he was unable to be assessed..... It seems that when this happens the assessers err on the up side rather than down...ie they suggest that the capability is more rather than less with a statement at the end of the report saying something like.... 'Luke's overall IQ is probably higher than his score from this test because he was unable to complete such and such and therefore this part of the assessment could not be taken into account'... It is extremely frustrating and for this reason I have had Luke assessed privately every year since he was 5 and I must say his overall IQ has gone from 72 to 86! Ho hum.

 

Flora XX

[butterfingersbimbo]

omg thats terrible!!! you must be really doing your nut, surely they need to find a way to help your son if he is this problematic when they are trying to assess him? it sounds to me like they are going about it all wrong for him....hope they sort themselves out rather than just writing him off......

[pim]

Hi,

 

That is awful that they won't help. DS, 5, is similar in that it is difficult to get him to comply. At his latest OT appointment to assess him after an hour the therapist was worn out. She asked if ds was always like this, that it is hard work trying to get him to do what she wanted. I replied that as he goes there so irregular he doesn't know what is expected of him and she gives him far too much leeway. In the end she decided it was best to go into school as he more compliant there. I felt that she was blaming me that he wouldn't do as he was told, that in some ways I spoil him. I felt like shouting at her but he is ASD that is why it's difficult.

 

I still put ds shoes on and help him get dressed in the morning and she thought that was wrong as he can do this himself. But she doesn't realise that if I didn't it would take forever to get him ready and I have 3 to get ready in a short space of time. He wouldn't put his scholl uniform on willingly as he doesn't really want to go to school.

 

So all appointments SALT and OT are done in school.

 

pim

[smallworld]

Sneaked in a visit whilst 'The Simpsons' are on and OH is cooking dinner,

Thanks for the replies, I did wonder if this had happened to anyone else and the more I think about it, the more ridiculous it seems to expect a child with asd to comply with any assessment that takes place in a strange enviroment

OT did come into school and observe my son, and offered school advice with handwriting/exercises, but still no formal assessment as such.

 

As for the paed, is **** to only remain on her list if he can behave himself in her office ? She says there's nothing she can do for us, but we would like someone from the medical side of things to see him every year at least and record his progress, or lack of it.

This is crucial when annual reviews/ dla renewals/ transition etc. start to appear, we will have no reports to back up our view.

Better go, my slot's now over,

Cheers,

 

wac

[Karen A]

Hi I would have thought that an inability to sit at a table and complete a standard assessment in a strange place would be a qualifying factor in an assessment for ASD or ADHD come to that matter-not an excuse for not doing it.No wonder you are not happy.Karen

[LizC]

Hi I cannot believe they wouldn't assess him, I agree why didn't they diagnose adhd?

 

My son has problems with behaviour too and also lack of concentraton so basically when they assessed my son they just gave him more time, it took a little longer to assess to get out of him what they required.

 

That is just awful that they have left you like ths with no help and no diagnosis, how is that goning to help you or your son?

[carrieq]

Ds won't be assessed by ed psych here because she says he is unassessable and any findings would be misleading and couldn't be replicated as he is so unpredictable. In some ways I can sort of see her point but at the same time we really have no idea of his potential and as such don't know if he is achieving it. She is very reluctant to accept maybe she doesn't have the expertise to assess him and should pass him on to someone who does.......the fight goes on!!!

Carrie

[smallworld]

Errr, apologies for not making much sense in original post, will try harder.....

My main gripe was about OT being unable to formally assess ****, but he does have a dx of asd at 4yrs from our CDC, since then we have seen the paed. twice and every time I query anything, eg. his hyperactivity/ hypermobility/sleep problems, I get the same stock answer....

'it's all part of his autism'

Grrrr

Now, we're not even getting any answers, I feel we've abandoned

Paed has agreed to try and attend next review and has asked for everyone else's reports beforehand, but she hasn't actually seen **** for over a year ( and that was a disaster )

This is only going to happen because I rang and asked her to attend, I was getting fobbed off by secretaries who told me basically '**** has been discharged, end of...'

More Grrrrr

As for an EP, we haven't seen one for 3 years

How are we as 'mere' parents, supposed to decide what junior school to name for sept. 2007 without any back-up ?

Sorry for ranting, but big thanks to all replies, at least I know that we're not alone in this madness....

 

wac

[LizK]

The SALT tried that line on us when Adam was three years old. I'd begged for some direct work which she reluctantly agreed to, he played up quite a bit which is how he is until he settles down and she suggested we stop the sessions as he wasn't getting anything out of it. Fortunately we were having weekly input from the Early Years Service then and out preschool teacher intimated this wasn't acceptable and the SALT had to find ways to work with DS or get advice from someone with more experience.

 

It was the same with his OT assessment. He had a brief observation in school about to be discharged when I requested a proper sensory assessment. He would do so little that they wanted, really played up and was completely overwhelmed by the experience. They didn't structure the session or pitch their language properly either so it's no wonder he woulnd't cooperate. It did prove to them that he had several areas of hyposensitiviety and is a sensory seeker. They were only going to do 1 or 2 more sesssions but the EP has got involved and he is now having 6 sessions in school where they hope he'll be more compliant. I read Pims post and know exactly where she is coming from!

 

Lx

[smallworld]

Thanks Liz,

your post has given me a few ideas, the EP's involvement might be the best place to start,

ta,

wac

[BusyLizzie100]

Waccoe, I totally understand that feeling of being abandoned - 'here's your diagnosis, now get on with it'. Aaaaaaaaagh! There's precious little info about HOW to actually get on with it, apart from what we piece together ourselves. I've now read hundreds of books on ASDs and I've even started a postgraduate course in special education so that I'm better informed (and hopefully more credible to those people who say: 'Oh, they're fine - nothing wrong').

 

Sorry to whinge, but why do we have to fight for everything, whether it's assessment or educational support or support at home in the 'real' world? Hey ho.

 

Waccoe, LizK's story sounds similar to ours with DS2 - he was actually discharged by the OT at three I asked him to look again with sensory issues in mind. It turned out he had severe sensory integration dysfunction and from there we went on to a dx of ASD. I know it's not dx that you seek, but keep at them because if they can't do anything re assessment etc, then they need to refer to a specialist who can. DS2 was referred to Guy's because the unit there includes both OT and ASD specialists, and they diagnosed him within hours when everyone else had sat on the hedge.

 

Go for it - if people are discharging because THEY can't deal with it, then they should refer on to someone who can. Just my opinion, of course!

 

Lizzie x

[loulou]

Hi waccoe,

 

I know how you feel because Kai is hard to assess. Every appointment we go to (well, apart from 1), he kicks off, runs off, hides under a table and basically is totally uncooperative.

 

He has only once ever had a good assessment by a SALT, who luckily was very experienced in ASDs and managed to find out quite a bit.

 

I have now resorted to going to see the paed by myself, taking my diary of "events" with me for her to read. She has suggested me recording his behaviour, but as he's so unpredicatable i'll have to have the camcorder permanently on stand-by!

 

The clinical psychologist tried to assess him, but he ended up going into complete meltdown, so now she is going to try to visit his school, where he feels more settled.

 

Loulou xx

[pumpkinpie]

Its good to read that its not just us this hsppens to!

Infact in about half an hour I have a meeting at school with the psych about little p and behaviour!!!!!!!

Worried sick!!

 

BEEN READING UP TO TRY ABD STOP MYSELF SOUNDING LIKE A TOTAL PLONK!

 

I have had this happen with ot and speech therapist PHYSIO. In fact the best thing I ever did was to get a private assessment for sppech from a specialist and keep going and seeing her. I managed to talk the salts manager into letting her go wiht me to a meeting and she was gobsmacked to see what little p could do with the right approach!!!!!!!

Its still far from perfect but it is gradually improving.

 

If oly school would stop thinking of her as a naughty child rather than one who uses avoidance strategies to get out of theings because she is very insecure!!!!!!!!!!!

[smallworld]

Hiya,

Glad to hear it's not just us that has happened to, too

The more I think about this the more angry I get, if your examining/assessing children with known behavioural problems than how can you dump them because they can't 'behave' in a certain ( or indeed, any ) environment. It's madness !

Ideally, I would like both my sons to have the same paed. so that there is some family background to their appts., and a bit a flexibility over where any appointments are held would be the best thing for us right now.

here's hoping, or dreaming

 

wac