GOSH to Assess or not to assess

[Malecowpooinabundance]

If anyone has experienced a neurodisability assessment at GOSH I would welcome your views about whether exposure to such an assessment is worth the potential meltdown it will cause. My ds is due one in a week but I don't know wether to take him, the last assessment there was a nightmare, really badly managed by the specialists there and we were left with the side effects including smearing and soiling for weeks afterwards. I really can't comprehend how specialists had no clue about his needs and the consequences if them forcing him to become distressed.

I am losing faith in the purpose of assessment and feel the agenda of the service may be quite different to mine and linked to resources.

That sounds really worrying, I have asked for a referral to GOSH neurodisability service to look at a specific issue and the referral has been made an I am awaiting the appointment. I was hoping the expertise and experience there would be really helpful to us.

No experience of GOSH but that does sound very worrying. I think I would be contacting the team to explain my reservations and seeking reassurance before going back.

I agree this is worrying.
However GOSH have an international reputation for their work.

Perhaps if you make contact with them and tell them what has happened during and after the last visit they might be able to come up with another way of carrying out the assessment?
Could you agree a list of things with GOSH that they would want to look at and then video your child at home doing those processes?
Could you get some photos of the staff that he would be working with to build a social story about going to the unit?

Mmm, my experience of GOSH was not positive at all despite their noted reputation. It was not the same department but my son was an in-patient for 2 weeks and the standards of general care and support for very young children far from their homes were awful. Really lacking in compassion. It makes him really mad now when he sees adverts for the hospital!

Is there anyone else you could see in another hospital? If there is one thing I have learnt, it is that you must trust your instincts as a parent.

Did you discuss this with them after the visit? Basic understanding of a child needs is essential. There are other neurodisability services.

I asked for the referral because there are some quite specialised speech therapists there with some specific expertise/experience I was looking for. A bit concerned now about the whole thing though....

PS anyone have any positive experiences of any other neurodisability services?

What sort of specialist input are you seeking? Is it APD? Or something else?

Assessment for AAC (Augmentative and alternative communication) possibly (my ABA consultant thinks this may be the way to go: DS with no speech and poor signing but coming on comparatively well with reading and spelling).

Thanks all, think I am going to postpone as we simply can't take the risk just now that they will make things worse as lots of the professionals we see seem to do!

Nigel they are really good suggestions and if I had been less stressed recently I might have even thought of them myself! It's too late for this scheduled appointment but if I postpone they may be possibilities, thank you, sometimes I find I lose sight of the obvious solutions in the haze of the everyday war we have with our LA! The constant battles seem to overshadow our lives at all times.

Our experience there was poor too. It must be 10years or so ago and we went for "genetic counselling" to determine the chances of having more children with ASD or similar, given our family background. They insisted we take DS with us although all they did was talk to us and measure his head, I could have done that at home! They kept us waiting and had no concept of his difficulties, indicating a pile of toys he could play with and looking surprised when I said"well he won't because he's autistic"! He then proceeded to play with the taps of the sink in the room, the light switches and door and they didn't know what to do and expected us to deal with it. Total waste of time. We weren't looking for a dx though so I can't say how they handle that and what they are like now. We found our local DeveLopmental Paediatrician far more helpful. Mind you, we had been lucky and got dx from Gilly Baird at Guy's. GOSH also had no better information than we could get on the internet about our chances if more ASD in our family

I suppose I am only going there looking for something/someone specific so will give it a try (if I don't feel I got what I wanted I will go privately to someone who specialises in that area).

I have to say our local developmental "paediatrician" was no help at all (an unqualified junior doctor who had never heard of ABA). I did later on insist on seeing a consultant but by then was not looking for advice or anything, was managing it myself, just wanted a rubber stamp on my requested referral to GOSH! (she did oblige)