I don't belieeeeve it!

[KarenT]

Background...

 

J was assessed at Child and Family throughout last year for AS, culminating in an outcome of 'insufficient evidence to diagnose' at the end of November. During January we had the CAHMS nurse advising us (I use the term loosely) on coping strategies, this resulting in the revelation at the end of Jan that she didn't believe J's problems resulted from ASD rather that he was manipulating us. She advised us that we were explaining too much to him and not being firm enough and introduced the Naughty Chair and told us to stop talking to him . In the meantime she would arrange the long-overdue professionals' meeting to take place asap (we'd been waiting since November) and would arrange an additional meeting for us with herself and the senior psychiatrist at Child and Family to explain the change of opinion. Apparently there had been 'developments' since the November meeting to account for this, though I'd not been told about them.

 

The meetings were arranged for 27th and 28th February (parents first, professionals second) but both were cancelled at the last minute due to sickness and so far we've had no contact with the department, despite it being two and a half weeks since they were due to take place. I can understand the complexity of getting all the professionals together on one day but can't see how it would be difficult to rearrange ours, a simple phone call would do it.

 

Today I rang J's SENCo to arrange a slot to speak with her on our parents' evening, 27th March. She told me that that wouldn't be necessary as the hospital had been in touch and there's a meeting arranged for 3rd April to incorporate IEP review, professionals meeting and feedback from Behaviour Support Service who are now involved. I was stunned - all this has gone on without my knowledge and without checking that we - HIS PARENTS! - would be available to attend. Apparently I'll get a letter in a few days informing me that it's to take place.

 

So... we still don't know what Child and Family thinks of J, we don't know if he has a paediatrician any more as her name was conspicuously missing from the list of invitees to the last meeting (despite asking specifically to attend when we last saw her in November), and we don't have a psychologist involved as the one who assessed him no longer works in the department. There have been background discussions going on since December/January about which we know nothing but which obviously have great bearing on how J is regarded by the department, but the general opinion seems to be that none of this has anything to do with us so they won't bother to tell us. I don't even know who's coordinating his case any more because it used to be the paediatrician and she doesn't seem to be involved any more - instead it appears to be this CAMHS nurse who thinks we're lousy parents and J is fine. No thank you.

 

I'm absolutely fuming.

 

My first instinct was to contact the department and ask what the hell they think they're playing at, but the bi*ch in me wants to leave it and go to the meeting, THEN ask what the hell they think they're playing at, in front of all the professionals, thus making it clear how much we're being mucked about. Is that just me being petty?

 

So, is it just me, or is this really beyond a joke?

 

Karen (with steam coming out of my ears)

x

[lsw146]

Unbelievable these professional get so caught up with their own self importance (and before Ioffend to many people I work for a community paeds team and there are brilliant people put there as well) and forget they are dealing with lives and families.

 

We have also had the "you explain too much" thrust at us and now I am not allowed to praise the good behaviour in case in draws too much attention too the bad behaviour

 

Good luck with your fight and follow your instincts

[Paula]

<'>

 

Thats why i said sod of to all the so called professionals years ago.They aint a clue about everyday life with an As child.I had the youre a bad parent thing also i also had some old cow comeing round my house saying all he needed was a good smack and i was far too soft.

 

These people make snap judgements based on limited time in an artificial enviroment.

 

What should happen is close circuit tv shoved in youre house to record the behaviour.Then theyd see what it was realy like.

[Jill]

Sadly we too usually just get a letter telling us when appointments are, without having been consulted in the first place about availability. We usually just go because otherwise it takes months to book another one & we STILL only get told once it is a fait accompli.

 

Go to the meeting, tell them what you think in a calm manner (I've dealt with so many professionals even in our short time since dx who start off so patronising but soon change their tune when they realise I DO know what I am talking about). Don't let them fob you off!

[KarenT]

Thanks guys, nice to know I'm not alone in being messed about, also that I'm not mad to expect a reasonable level of service.

 

Had a letter today about a rescheduled meeting to discuss the department's opinion on J, for next Tuesday - a bit short notice, not much time to prepare with a weekend in the middle, but there you are.

 

The letter also 'invites' us to the school meeting that's been arranged behind our backs. Nice to be included, eh?

 

Karen

x

[Jill]

Had a letter today about a rescheduled meeting to discuss the department's opinion on J, for next Tuesday - a bit short notice, not much time to prepare with a weekend in the middle, but there you are.

 

 

Must be something in the water at the moment, we've had a letter today inviting us to a review of The Boy's IEP next Tuesday morning - I can't possibly take any more time off work at such short notice.

[DaisyProudfoot]

The letter also 'invites' us to the school meeting that's been arranged behind our backs. Nice to be included, eh?

 

Karen

x

 

At least you get included! Last meeting we had with Martin's SENCO she said that the woman from SENTASS had been in to observe him in the school environment. We were supposed to know when that was happening but we weren't - sigh!

 

On the plus side CAMHS have been excellent so I can't fault them

[justamom]

<'>

 

What should happen is close circuit tv shoved in youre house to record the behaviour.Then theyd see what it was realy like.

 

 

I once said this to one of the people dealing with K - i'll put up a camera in the house and then you can see that i am not talking a lot of nonsense and you can see what a little monster he really is...

 

justamom

[phasmid]

I have got CCTV installed The way things are going I WILL be using it to show them what the behaviour we are getting is really like. I've told them I'll do it but in all honesty I don't think they believe me. Well, they will be in for a shock!

[KarenT]

I had considered installing cameras and looked around on the internet for minicams. I even suggested it to the CAMHS nurse last time she was here in January and she said they could set that up for us. I've changed my mind though, since they've messed us around so much and left us with the feeling that there's something sinister going on I don't want them in my home again, much less videoing us. Besides, J's doing so well lately there's little evidence of the behaviour we've been concerned about in the past. I have every confidence that it'll return (and indeedmuch of it is still there in small ways, under the surface) but I'm not having it recorded by anyone at Child and Family.

 

Anyway, they suggested sticking a dirty great tripod in the middle of the living room - I can see J behaving 'normally' in those circumstances, can't you?

 

Karen

x

[Mother in Need]

I too have had letters saying that they hoped I could attend on such and such a date...

 

As for using a camera, I did at one point, and it was vital in getting the help we needed (well, a little of it anyway). However, I was also attacked by SS for doing it, they said I was filming him against his will and this was against his human rights... (even though he had agreed beforehand, but you know what they're like in meltdown...). Maybe having the written agreement or suggestion or whatever by one of the 'professionals' might avoid this.