BIBIC ladies - how are you?

[debs40]

Hi

How did you BIBIC ladies get on? Was it useful? Did you get home ok?

It was a busier couple of days than I imagined but we got some really useful stuff out of it.

Sorry to barge in before anyone has even answered. We are going in Jan - Any tips on where to stay?

Glad you got some use from it debs

Oh yes hope you all enjoyed and got alot out of visit - have just booked in my 2 ds's to go in February - any tips on where to stay be very useful. thanks

Hi, we didn't get much out of the program - we're already doing ABA and although some of the sensory stuff made sense DH is a stickler for evidence and not sure the sound therapy recommended has any evidence behind it and doubt we'll pursue this. We enjoyed the break but DS refused to go in most of the fun looking rooms so I didn't get to play with the music therapy or sensory stuff and we didn't know the pool was open again so didn't make use of that either. DS was also too young to do the testing which I had not realised although they did the developmental questionnaire / sensory profile they didn't do the CARS/GARS (not sure which they use). I had hoped we'd get an independent assessment as a baseline - we have this via ABA but wanted an independent view to back this up. So we did not learn anything new - except DS loves to roll on a therapy ball!

Everything they said made sense but we sort of already have this covered via ABA.

What was good was it made us realise how DS freaks out at new places - he isn't normally anxious but the dark rooms really freaked him. He was also much more responsive to the therapist than we expected. When we started ABA 2 months ago he would not have answered any questions and he answered all of the questions (even if he didn't get them all right). When we were answering our questions we were surprised by how often we were saying oh and thats new etc etc. It made us realise how far he has come in a short space of time so that was worth it in itself we had time to sit back and just concentrate on the past few months without life, work and the LEA hovering over us.

We were out by 2.30 on the first day and by lunchtime on day 2 as DS would not really make use of the facilities! We did get to enjoy a nice cream tea in Glastonbury and DS got a new pair of shoes at the Clarks factory shop though.

We stayed here:
www.holidayinsomerset.co.uk/cottages.html
It was lovely - I still have the homemade jam and free pot of clotted cream in the fridge. But its only suitable if you can get your DC in a travel cot and even then its a squeeze to get it in the room. It was about 15 mins drive from BIBIC but ideal for us as we could eat what we liked (and cater for DS picky tastes) and watch TV when he went to bed rather than having to sit in a hotel room with the light off.

That's a shame grumpy. I got the feeling that you weren't getting as much out of it. I don't know how but I did.

I think, given DS's age, they were able to do some of the testing to identify underlying abilities and deficits. This is what we were after more than the sensory stuff really as we have just started OT for that. The testing was really useful and will be helpful with school.

DS was also much more communicative with the therapist than I expected. I think it was the promise of the pool and because we sold it to him as two 'family days' off school.

I agree with you on the sound therapy stuff. I would need to see something firm on its effectiveness before throwing money at that.

They did the GADS test for DS but I had raised this in advance after mysonben's experience. That indicated a 'likely' result for Asperger's but the therapist did open our eyes to other possible diagnoses or reasons for the problems which was useful.

We stayed here www.yewtreebnb.co.uk/ which was LOVELY. A lovely woman and her husband run the cottages on their land as a B&B and you get breakfast in their gorgeous house. They are friendly and helpful but not at all intrusive and they now know all about BIBIC! It is about a 20 min drive from BIBIC - a straight run and 5 mins from Street (outlet village!) and 10 from Glasto.

Grumpy - I meant to add that they will do the CARS test I think if you ask. They won't undertake diagnostic testing (although they can arrange for you to see someone who can do that at your expense obviously) but they will screen.

I found the standardised GADS/CARS screening tests fairly useless to be honest as they're ased solely on your own comments so you could underestimate/overstimate the problem leading to an entirely different score. You may as well just ask the parent if you think your child has whatever!

Thanks - we have our diagnosis so don't really need testing he is pretty much full marks on all areas for autism - it just would have been useful to have an independent view from which to measure progress - we have to show the LEA approach isn't leading to progress. But actually we got our Ed Psych report yesterday and he's put a recommendation for ABA - doesn't mean we'll get it but so happy we have some support for our viewpoint. Just a vague hope we might get our statement - although we'll argue over what it says - will mean we would be down to just the one tribunal! I'm glad you got some useful stuff out of it.

I'm glad you got a useful report. That is good news. It makes all the difference to have someone on your side. The statementing stuff sounds like a nightmare. So unnecessarily stressful. These things are stressful enough without the added crap of having to fight over everything.

We didnt find the 6hr journey back particularly useful, or helpful.

They have offered for graham to come up to us. The ed psych we saw was nice.

Hi everyone, i found the sensory diet very useful and will definitely be giving this a try.

The CARS test was silly, as it is based solely on your observations, you self diagnose, not very helpful at all.

Misscutandstick, i heard that you came all that way and your therapist was sick, how awful. I bet you were furious.

Yes, you poor thing. That was awful. I'm glad someone will come and see you but I know there is alot of anticipation/anxiety that goes with appointments so it must have been gutting at the time.

Oh that'sa shame Claw, Graham is great though so I hope he does go up and see you.

we found it useful in aprticular with ds3- I credit them with his peech- but he was at a point where he'd been effectively abandoned by PCT until a Dx (it took a further few years before we got one) and as such they were esential to us.

I think the sound therapy was still very much in development when we went, however all that side of things was aprticualorly useful to us as DS3 is somewhat unusually sensory hyposensitive- most ASD kids are hypersensitive. They let off a klaxon next to him and he didn't respond,forexample. As such mainstream type things didn't really fit him.

We'relooking at ABA next though I am having to train to do it myselfas there's no way we can afford to hire someone (being covered at Uni next term). But in order to work out where we needed to address the ABA we had to use the BIBIC stuff I think- otherwise I amfairly certain ds3 would now be completely closed off to us and unable to speak, whereas right now he's talking alebit in his own way, and was even selceted as one of two in his SNU yesterday able to aprticipate in the play- and he had a few words (couldn't understand them LOL, but thats far from the point)

Virginpeachy, Graham has offered to visit Misscutandstick, youve got the names in a muddle!

I always get names muddled up on here, but sorry