Documentary on Growing Minds on Al Jazeera now

[moondog]

Very interesting.

oh, missed this - was it any good?

will see if I can catch it online.

I thought of you straight away Silverfrog.
I was telling my dh about you as we watched.

Are there a lot of them or is it the (married?) couple I saw that you saw. Him, big, jolly, bear, her being thin with long dark hair.

They seemed like very nice people.It followed a family taking their child from the UK and then doing a home programme. What came across very clearly was thier realisation that they were reinforcing a lot of their child's challenging behaviour and that they had her on an ethereal special magical autistic pedestal.

beard
(Althgouh obv. a Freudian slip as he was somewhat ursine.)

It is them only - big jolly bear, his wife (a counsellor/psychotherapist) and small ish thin woman (behaviourist/therapist/tutor).

they are very nice (didn't meet his wife, but am sure she is lovely )

the accidental reinforcement/autism pedestal is so very easy to fall into, and was a lot of our issues too - sometimes, no matter how hard you try, you feed into it unconciously, which then becomes a negative behaviour spiral... and sometimes, your mind can be so focussed on not creating/feeding into reinforcing undesirable behaviour on one front, that you unwittingly reinforce something else entirely without meaning too...

- didn't even occur to me that you might mean anything else

Yes, they really did seem great.
I can imagine as you said, that it was a healing process for you as a family after all the shit you have been through.

Just seen this - could you get it online SF? I think ' big jolly bear' is a perfect description btw!

I did look online, and it was there -have spent most of the weekend with chronic toothache (again! - need ot get my wisdom teeth sorted out...) so didn't watch it. will check later whether it is still up (have decent drugs now, so temporary relief)

we had an absolutely fab time when we were out there sphil, really amazing.

we have all benefitted enormously from it.

So jealous - we just can't afford it ( grrrrr at the stupid stupid people who made DH redundant as we had planned to go before that). We did have SW for a weekends consultancy back in Nov which was very helpful - but Ds2 has changed hugely since then and I could do with more input!

Ouch at wisdom teeth - I had similar problem just before Christmas and it was horrible.

oh - I am sorry, didn't realise your dh had been made redundant. what a blow

dh in particular was blown away - he found it really useful. he isn't as read up on things as me (he works stupid hours), and doesn't get as much hands on experience as me. he found it really eye opening, and came away with renewed positivity at his own abilities with both girls.

dd2 is a changed child! really, really fab (she always was ) - doubly happy, considerate, polite, helpful - listens when we explain stuff, really marvellous.

dd1 has a few new things to work on, and is really taking htem on board.

have you got ongoing distance consultancy as part of your Nov weekend?

No - we did two years with them when DS was between 4 and 6 and it was the best thing we ever did for him - he improved so much. but like most things, after a while we just felt we knew enough to do it ourselves. Then ground to a halt a bit, which is why we got Stephen back last year ( courtesy of lovely inlaws). he gave us some very good advice, particularly about the need to make Ds's speech clearer ( we thought he was fairly clear but apparently not!) The problem is, with DS, you have to keep things up ALL the time, or he loses them. So, for example, we worked on getting him to say
' tickle' instead of ' ticker' using prompting most to least, then least to most. It worked really well but as soon as we moved onto something else, he went back to saying 'ticker' again. and this happens all the time with all sorts of things. So you have to be so on top of things all the time, and tbh, I'm not always!!

Don't be sorry about DH's redundancy - he has now gone back into teaching and is loving it! Everything about our lifestyle now is better - apart from the money!!

oh glad you are all happy re: redundancy. I sometimes wonder (as does dh) what it would be like if dh had a "proper hours" job (do NOT mean anything by that wrt teaching btw - I trained as a teacher myself and know what lesson planning can involve! but dh is up at 5.30am, out at 6.15, back home 8pm earliest and more often 10.30/11pm - stupid, crazy bloody City hours), but yes, we would miss the money (and irony of that statement is that we wouldn't miss it for the luxuries in life, but for things like Growing Minds - "standard" therapy for dd1...)

know exactly what you mean re: keeping on top of it all - we are just the same. which is why we wanted htis week in the first place, really - kind of a top-up for us as a family. since dd1 is in ABA school, most of her educaitonal stuff is taken care of (although always interesting to hear another perspective), but we jsut needed an overview of what we were doing as a family, in "downtime", so that that time could be used properly, iyswim - not necessarily in a structured way, but in a relaxed, still keeping and eye on things way

We are coming down your way this weekend - are you about at all? we could finally manage that long-threatened coffee, if you are?

Yes we are - Dhs parents are here to babysit as we're going to a party on Sat night, but that will make it easier for me to get away if anything. Or you could come here. Where will you be?

Have just watched the documentary and found it immensely reassuring tbh - seeing parents learning ABA approaches for the first time makes me realise how far we've come and how much we do, in fact, know, despite my continual self doubt. DS2 was at a similar level to Rosie in the film at 4, except that he had a few words and was very calm and placid - but he would NOT accept adult direction for cognitive stuff at all and was very hard to reach through play as well, just like her. The Growing Minds programme taught him that it was OK - and eventually fun - to do trials and follow instructions, and the fact that he learned to imitate has been the foundation of all his progress since. Like her, his language progress has not been as rapid as we'd hoped - and I found that reassuring too, very very selfishly. I was kind of dreading that the end of the programme would show that the 1000s of hours they spent (they're doing a full time home programme) had had miraculous results and I would then spiral back into the old ' My-God-I dont-do-enough-and-if-I-did-he'd-have-recovered' guilt trip.

Lovely to see Stephen and Stefanie again though. They do make so much sense. We are really trying the 'unphased' approach to tantrums atm - and I think its working.

I know just what you mean about missing the money for autism stuff - when Dh was earning 20K more we didnt buy any more clothes or go on any more holidays - but it did mean that we could do stuff for DS2 without worrying. We are VERY lucky that parents (and some dear dear friends) have stepped in to fund some of the things we can no longer afford.

Would be lovely to see you! Saw SaintlyDame at the weekend for first time for about three years - was great to catch up with her and her DS1.

Your comments are interesting,ladies.
In the battle for proper educational provision,I can understand how some important stuff can get pushed on the back burner which needs to be dealt with as yuo say here Silver.

'kind of a top-up for us as a family. since dd1 is in ABA school, most of her educaitonal stuff is taken care of (although always interesting to hear another perspective), but we jsut needed an overview of what we were doing as a family, in "downtime", so that that time could be used properly, iyswim - not necessarily in a structured way, but in a relaxed, still keeping and eye on things way'

we will be not a million miles form you - dh is attending a reunion at his old school (Boarding school just down the road - big Abbey), and we are staying near there (not being mysterious - just didn't know if you wanted oyur location broadcast )

Saturday morning/lunch/early afternoon would suit me best, if ok (not necessarily all of that itme ) - don't mind what/where - open to suggestions. I will, of course, have 2 small hopefully non-whingey girls with me.

Will try to watch that documentary now - toothache has subsided a little as the drugs have kicked in. have initial consult on Friday as to what is going ot happen (err, take wisdom teeth out? not rocket science really!)

moondog: the overall support for any family going through any kind of dx is shocking, as you know. and yes, you tend ot come out fighting for the "standard" services. but just as I expect a proper education for dd1 - as in I expect that her school will set appropriate educational targets and help her achieve them - I expect us to have a "proper" family life too. too often, though, I have been looked at in amazement when I ask how to address "normal" family issues like sibling rivalry etc - things that arise in every family, but which, due to SN we cannot deal with in the "typical" way. like just about every other aspect in the SN world, the approach seems to be "oh, you're doing really well even thinking about it - carry on, you're doing a good job" along with a nice pat ont he head and a leaflet saying not much at all.

meanwhile we struggled on - both fighting for dd1's rights, and then, after her school place was sorted, struggling with the fact there was nothing to fight for anymore, whilst there was still quite clearly some huge gaps in our lives - so many htings we still could not do.

and I refuse to accept that this is right.

and so we went ot Growing Minds - as much to help us (as in dh and I) get through this next stage of not having every aspect of dd1's curriculum under my complete control, of not having several legal battles going, of not haivng to plot and plan every last little step/lesson/skill. to learn how to be a family again, because somewhere along the way, that bit got lost - overtaken by the strains, and the stress. downtrodden by the fight, and overlooked by just about everyone we met along the way - we were just names on a bit of paper ot everyone, not real people.

That's a great post SF. We are almost the other way around. We got the family life bit sorted quite quickly - really from when DS2 was 4 we've been able to do most things as a family. And I think the reason we decided against doing a full time home programme for DS2 was exactly for that reason - to protect our family life. However I continually question that decision - was it selfish, would it have been better to give him a more intense programme, rather than the 10 ish hours a week max we've ever done?

The academic side has always been a struggle - no ABA schools anywhere around here and so I've concentrated on worming as much ABA-lite stuff into the school curriculum as I possibly can. Luckily the school is fairly receptive and we've got great TAs now - in fact I would say we work as a team. But it's taken a long time to get to this stage and the softly softly approach required has been exhausting at times. I never mention ' ABA' - I just talk about prompting and rewards and all the behaviour stuff, and they take it on board. Still I would say that academically DS2 is way behind where he is socially and interactively, if that makes sense.

Do you mean you will be somewhere beginning with S? That's not far at all - 30 mins? I'd better just check that DH hasn't made any plans with his parents, and I know we're having a tumble drier delivered - but it would be lovely if you could come here, if you can put up with the inlaws! will get back to you later when DH in from work...

DH has no plans, so please come! Early afternoon? shall we continue this conversation on FB?