BIBIC visit

[Jimjams]

Well that went well- exhausting but well. We spent 3 days there - 2 days were spent on assessment and 1 day teaching us the programme. DS1 basically has huge sensory problems. I knew he did have -but didn't realise the extent of them. Apparently he has good gross and fine motor skills (!) but these are hampered by sensory problems. So for example the reason he can't hold a pencil properly is becuase it feels like holding a red hot poker!

We also saw an autism specialist SALT. He had his first ever proper official language assessment and he is way behind, Basically he understands nouns (and knows lots and lots of them) but nothing else. They said he was extremely good at hiding his language problems. The SALT also said he isn;t like most autistic children becuase he wants to communicate and tries desperately to, just can't (I have been saying this for 2 years and been told I'm kidding myslef- how nice to hear it from a professional). She said the diagnosis may be appropriate as he does have an impariment in communication, imagination and social interaction- (and the word autism gets you help at school) but I got the impression she thinks that really he has a severe language disorder and some sensory problems. Personally I don't care what they call it- but she's also going to provide a report for the LEA recommending
1 hour of SALT a day (!!)
while this is being set up with the LSA a SALT should be visiting once a week
then a SALT should be visiting twice a term.

She said seeing a SALT ever 3 or 4 months was totally inadequate. She aslo wants to extend PECS so it is being used to provide a visual structure for language ie I want ball, I want red ball, I want red furry ball iyswim. What a pity his SALT isn't PECS trained!

SALT also said she's a bit concerned by his own language as he's getting rather good at it. We've been sent home with a SALT programme as well.

Cognitively he's at age 5-6 for non-language stuff- which wasgood to know- I had a very wooly answer when I tried asking the Ed Psych a few weeks ago whether she suspected any learning difficulties (I didn't but I wanted to see what she said).

We also saw a physio and nutritionist.

We've come home with a structured programme and a whole host of ideas- it really was a positive and amazing experience- so many things make sense now. I am now even more peed off with the NHS though (bet you didn't think that was possible). Why on earth hasn't someone done a formal language assessment before now (it took 20 mins)?

Wish I'd gone to BIBIC 2 years ago. They have experience of a wide range of conditions from severe brain damage to dyslexia with behavioural problems. I know they're very experienced with children with CP and Down's. If anyone ver flet they needed more advice and help I'd recommend BIBIC highly.

That sounds like a great trip Jimjams, so pleased for you. What sort of experience do they have with CP? I know ds is getting very good facilities but it might be worth investigating.

Oh, that sounds like every minute was worthwhile and helpful. So pleased it went well for you Jimjams.

Lou- I don't have the cp leaflet. Basically they would do the same as they did with ds1. So they would do a full developmental assessment and then aim to fill in any "gaps". So after assessment you get sent home with a programme of activities. Their approach is holistic and different children would be sent home with different activities (eg whilst we were there one Mum was there with her son, having visited with her daughter a couple of weeks ago- she said they had used a different apporach with each child- she also said her children were very different!)

This is their webpage www.bibic.org.uk/

I know they run free seminars every now and again as well- that might be worth enquiring about- it's not too far from Surrey I guess.

Glad ot hear it was a very productive time for you. More importantly glad to hear your suspicions were validated and you now have something in writing from a fellow professional to hand to those you are dealing with.

We have the info from BIBC - I wrote to them a while ago asking about it. We have decided to put it on hold to take it up when we get back to Australia.

Thanks Jimjams I shall check it out.

Do they have a BIBIC type place in Aus Eidsvold? For a child with any sensory issues it's great (this is why I wish I'd known about it when ds1 had just turned 1 as that's when his sensory problems really escalated- and they're at the root of a lot of his problems). I know they do different programmes depending on a childs needs though- so for example some children may come away with a big physical programme and only some sensory exercises.

Anyway must dash- I'm off to teach Mum and Dad the programme. They're going to do it once a week.

Jimjams, glad your visit was such a success, good luck with doing the program. Will have a look at the web site, it might well be helpful.

That's great news jimjams, a lot of work ahead of you, but how good to get a proper assessment and validation of what you knew at last. Very good news about his cognitive abilities, too. Hope the program works really really well.

great Jimjams - progress at last !! I shall look into the CP element too. Did ds 'enjoy' it , if that's the right word?

I'm so glad that everything was so positive, and that you are now begining to get the help for your ds that he needs. THe SALT provision sound as if it will be excellent.

He did Mabs although he was exhausted by day 3. It's done at the child's pace though- so if they are getting hungry/upset you can just have a break (or a session in the sensory room )

there is an equivalent as my uncle was brain damaged through an accident and was told he would never walk, be independent etc. Well my grandmother spent a lot of time doing physical therapy/ot/salt etc and he now lives by himself and is independent/self sufficient. She now works with a charity called Friends of brain injured children and they do amazing things in terms of support, fundraising and using the same sort of prgramming that my uncle used.

sorry forgot to add that they went to somewhere similar to you - very progressive and alternative in that time - over 20 years ago. Learnt the program and then spent ages doing it at home... he had all sorts of things to do.

Sounds similar Eidsvold- BIBIC was set up 30 years ago- and was very progressive and alternative then-I think it's still seen a bit like that now.

I was very impressed by the therapists as they have to come in befriend a child and start working with them straight away. It must be an exhausting job.

The thing that saddens me is that it wouldn't be that expensive to set up on the NHS. The therapists who do the develpmental assessment are BIBIC trained, specialists such as physio, dr and SALt visit for half a day and see the childen, but otherwise it's all done by the therapists. It would be relatively quick and cost effective to train people. Therapy is then carried out by parents and volunteers- and hey presto you actually get children to reach their potential! Such a shame the dept of health doesn't share the vision!

The only thing is that there is quite a lot to do. I'm lucky because the nursery will be doing some of the therapy (in fact 2 people from his nursery came on the visit as well- the owner and his key worker), also my mum and dad will help out. It would be a bit daunting to be responsible for all of it every day- especially having ds2 as well.

Jimjams - great to hear you had such a successful visit. Out of interest, is it bibick, or bibitch?
Also, do you by any chance have handy the contact details for the place you can send urine off to in Sunderland? I had a look on some websites but couldn't find anything concrete. Thanks..

BIBIC jmb- british institute for brain injured children.....

The Sunderland link is osiris.sunderland.ac.uk/autism/

They have contact details there- and more about the testing. Basically you get in touch- they send a questionnaire you fill in- you send it back with 60 quid (I think used to be 50- although they do do it for free for those on low incomes I think)then they send you the kits. Collect first urine of the day, freeze for 24 hours then send off. Our results came back within 2 weeks.

The nutritionist at BIBIC was talking about gluten and casein free diets in autism. It's edging towards mainstream these days I think

Thanks Jimjams - I will get onto Sunderland tomorrow!
BIBIC - I just wondered how people said it, as it sounds sort of Central European, but obviously isn't at all! BibitCH, perhaps, if it's CHildren?

well ds1 says ee-ee- but we just say bibic

have a printer cartridge if you need it - just let me know where to send it...

ooh thanks eidsvold. You can ring them on 01278 684060 and they'll send you a special envelope for free post. I know they only take some types (as some can't be recycled or something- they don't take mine unfortunately).

Alternativey email them on [email protected]

Thanks again superstar!

Dear JimJams
How many hours a day/week is the therapy/programme? Presumably only 1-2 hrs a day? You could look into Direct Payments from Social Svs which you could use to pay for people other than yourselves and your family to deliver the therapy/programme (new booklet out available from [email protected], quote 31213). Any local charities offering "befriending" (or NAS)? You could get a befriender at least aware of the basic principles of the therapy and possibly able to deliver it. If you have enough room to set aside a room in your home for therapy (sole use of disabled person) then you can get your Council Tax reduced by one band and I've always used my DLA to pay for people to work with my son. A few ideas that I've found help with funding even if no dice from LEA (is it enough hours and can you describe it in educatinoal terms to try for funding from LEA?). Presumably you will get ongoing support and monitoring from BIBIC or someone else? This would help with funding application.

Thanks for that Davros- yes I am going to turn one room into a therapy room so I will enquire about the council tax reduction- that's brilliant. Our SS are not keen on direct payments unfortunately. I don't think I'll have much joy with the LEA as he'll be going to school from September anyway. However I will se if his LSA can spend some time doing some of the therapy.

Thanks for those tips I will follow them up!

Hi JimJams, good that you can have a separate room, just make sure it doesn't have a bed in it or anything that could make it look like multi-use. Also emphasise that it is for therapy, not doubling as playroom for both kids. The provision is really aimed at equipment for physical disability but those of us living with learning disability are now getting more access to these provisions as they should not discriminate within the disabled community (e.g. disabled parking permits, Freedom Pass etc). I don't think any social svs are keen on DPs but info from PACE newsletter is that they are "mandatory" from 1st April. The reality of course means being a pest and hounding them non-stop (so what's new?!). Good luck.

Hi Jimjams! If you need people to help, would it be worth looking into whether there are any students (psychology or similar) who might be interested? One of our babysitters is a psychology student, hoping to do educational or clinical psychology, and she helps several times a week with a boy with autism who is doing an intensive program. She does it for nothing because it will help her CV (she's not as cynical as I've just made her sound). Maybe Exeter or Plymouth have relevant departments?