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George and Sam - brilliant

97 replies

heartinthecountry · 18/10/2004 09:40

I'm sure there have been past threads about this but I just wanted to say that I have just finished reading George and Sam and I would recommend it as compulsory reading for everyone, let alone anyone who has a connection with autism or SN.

I think Charlotte Moore is inspirational. It was clear that she has accepted the 'otherness' of her sons absolutely, and that any interventions are used to make it easier for them to 'be' rather than to 'cure' them or change them. I think we all have a lot to learn from that.

OP posts:
jakbrown · 20/10/2004 21:31

Oh Good!

jakbrown · 20/10/2004 21:31

ps That should be WRITE, not RIGHT!

Davros · 20/10/2004 21:37

There definitely are children who are considered "recovered" which means indistinguishable from their peers when observed in a group by psychologists who don't know which ones had an ASD dx. There's a website site somewhere called something like Recoveredkids.com! I think its more common (or has only happened so far) in America partly because its a much bigger population but, as Jimjams says, more of them may get intensive intervention much earlier. BUT it still depends on any given child's underlying ability, imo nothing is going to make a child speak/socialise/play etc if they don't have that within them and the job is to bring it out and teach them its there....... long, sorry!
So far I have enjoyed the intro to George & Sam, sums me up exactly.

jakbrown · 20/10/2004 21:40

Oh my God, Recoveredkids.com sounds scary. Glad you are enjoying George and Sam. Totally agree that ABA brings out inner ability and teaches them it's there.

Jimjams · 20/10/2004 21:46

Agree completely about the ability limit. Remember getting very cross with a Radio 4 interveiw where someone seemed to be suggesting that if you provide early intervention (as she had done off her own bat- and her son had done well) then you WILL end up with a talking independent living adult. If only it WAS that simple.

Davros · 20/10/2004 21:51

Yes, my DS should be a genius by now! I still think he is now the best he can be and our relationshp with him and acceptance is the best it can be... but the little bugger still can't talk! or play!

pixel · 21/10/2004 00:32

I enjoyed George and Sam but I must admit the bit about Sam's crash sent a chill through me. It just hadn't occurred to me that all the little gains made over time may not be permanent. I'd been coping by reminding myself how far ds has come in the last couple of years and thinking that if he could only carry on improving at the same rate he would be ok. Now it's at the back of my mind that it may not be the case.

It's the part of the book that has really stuck in my mind.

mrsforgetful · 21/10/2004 14:10

pixel...know exactly what you mean.....having tom with as and adhd...and he has progressed/improved....just made me assume that 'things just do get better'....an dthen with leigh...though not 'terribly so' i do think over the past year or so he has 'gone backwards' on an emotional level....so when i read her description of sam's crash it scared me.

however with leigh i thuink what has happened with him (still scarey....but definitely not a 'crash') is that it's not so much he has gone backwards....but more that emotionally/behaviourly he 'simply' hasn't 'moved forwards'....so my fear is that maybe his last teacher hit the nail on the head when she said he was 'like a 4/5 yr old' in many ways....but is 7......which certainly explains the tantrums etc....but i cannot help panicking about in say 5 years time when he is 12/13....and still behjaves as a 4/5 year old.

My hope however is that now his needs are FINALLY being addressed that perhaps we can 'close the gap'....i don't expect him to suddenly be 'age appropriate' ....but maybe when he's 12 he may be emotionally/behaviourly as a 9/10 year old.....and that i can deal with.

however as wwe all know....unless the changes are sudden...we all 'grow' with our kids and accept them for what they are....so to sit here now imagining 'what may happen' is the complete extreme of how we'll actually feel if our worst fears are true....as we will have gradually reached that point.

hope that makes sense...and is relevent to this thread!!!!!!!

heartinthecountry · 21/10/2004 20:44

Totally makes sense Mrs F - I was about to to post something similar on bumblelion's thread. Because I do feel that looking too far ahead and trying to surmise what will be, is really scary. We all do it I am sure. But you are right, we grow with our kids. So when they aren't doing something at 2 or 3 that you thought/hoped they would be, it is kind of okay by the time you get there. Hope that makes sense too.

OP posts:
mrsforgetful · 21/10/2004 21:33

YES!!

I've just read bumblelion's thread and hope she reads this thread too....again 'different' syndromes....SAME feelings.

pixel · 21/10/2004 22:35

I do know what you mean about growing with them. I've learnt a lot in the past four years and I have to say it's done me good. I have more confidence in everyday life because I don't worry myself silly over the 'little things' so much. I've coped with ds's problems because I've had to but it's made me more able to cope with other problems in life too. I could never have imagined that having a disabled child could feel so 'normal' but it does because he's mine and I love him whoever he is.

Before you have children you can't imagine how you would cope with a disabled baby but when it happens you do. I suppose you just have to trust that you will do the same with a disabled teenager!

Sorry, has this gone off the 'George and Sam' thread?

mrsforgetful · 21/10/2004 22:42

threads on mumsnet always seem to 'wander'....but no one seems to mind!!

Davros · 22/10/2004 12:26

Oh dear, have got as far as the Diagnosis chapter and have told DH to take the book and bury it or hide it somewhere I won't find it. I am freaked out about DD (19 months) who doesn't seem able to do half the things all three of Charlotte Moore's kids could do well before her age Also worried about a crash or whether she's doing what she should at all. I could have read this book before she was born or will have to wait a couple of years before trying again.

heartinthecountry · 22/10/2004 13:24

Shit - sorry Davros . Have to say I really hadn't considered it from the 'f**k, my child is/isn't doing that, are they autistic?' point of view because only having dd, and knowing she has a learning disability, I'm not worried about autism IYSWIM. But after beccaboo pointed that out, I have to say I think it might be terrifying for most parents in that respect. Because George and Sam do sound so 'normal' when young.

Hmm - not sure that will help but wanted to apologise for being in any way responsible for any freaking out...

OP posts:
jakbrown · 22/10/2004 18:38

Oh no, Davros. Sorry to hear that. You're not worried about your dd are you? Bloody nightmare once you've got one SN child, you're paranoid about your others.

Jimjams · 22/10/2004 18:48

Davros the thing about George though is that he was way way way advanced as a baby/young child- and that was actually a symptom of his autism. I remember reading an article about him a few years ago (before we knew ds1 was autistic- actually just when I was waiting in the hopsital pharmacy to collect his eczema herpeticum drugs). In it she described herself and her husband as terribly smug as they thought they had a genius child as he was so advanced.

DS2 was a bit of a slow developer, and I know ds3 will be....... And I'll be paranoid about ds3 I guess

Davros · 22/10/2004 19:08

HITC don't worry! I've gone back to Mma Ramotswe which has taken my mind off the book. Of course I'm worried about DD but she's prob OK, everyone seems to think so inc friends with NT and ASD kids and they would say. I,ve seen a few Georges who seem so bright but are not quite right, oh and passive ASD babies, seen it all me!!!

jakbrown · 22/10/2004 19:16

Tis a constant worry, though. My ds seems fine (drank a bottle of champagne the day he pointed at something and showed it to me) but don't think I'll ever stop worrying. He's quite an active little boy which makes me think, oh, too active? My specialist health visitor (whom I have nicknamed Voice Of Doom) said, helpfully, 'you'll worry about him until he's 15'. Oh, thanks. And another health visitor (Voice Of Doom 2) is desperate to come and do his 18month check but I'm too nervous to let her in the house!

beccaboo · 25/10/2004 09:52

Uneven skill levels seem to be a key indicator - Charlotte Moore talks about George not being able to pedal a bike, something you'd expect a child of his age to do. But Sam could - they were never worried about Sam because he was so completely different from his big brother, yet they turned out to have the same diagnosis.

I think one of the things I found scary is that as a first-time parent I really didn't know what I was supposed to be looking for. I always felt DS wasn't as 'engaged' as I would have expected, and wasn't very interested in toys, but I didn't know that could be a red flag. Likewise wandering off, pointing, sensory issues etc.

I liked Let Me Hear Your Voice, if only because it offers a little bit of hope that maybe things can improve. We've only known about DS's problems for a few months, but I've been shocked by the lack of help that's coming from the state system. Like Jimjams says, early intervention seems to be much more available in the States - and I am finding it hard to understand why it isn't available here. But if ABA can help certain children to overcome some of their difficulties, I want to give it a go - even if we have to bankrupt ourselves in the process.

Incidentally, I spoke to a woman last week whose son has just been de-diagnosed at GOSH. After four years of GF/CF and ABA (since age 3) he no longer fits a diagnosis of ASD. But he was high-functioning to start with - i'm sure, like Davros says, it has to be within the child to start with, any therapies build on what's already there.

jakbrown · 25/10/2004 11:07

beccaboo, any advice you want about setting aba up, just shout! Sorry, how old is your ds? And what intervention is he currently having?

beccaboo · 25/10/2004 11:28

Thanks jakbrown - this site is such a lifeline, I've had so much help and info here.

DS is nearly 3. We have tentative dx of ASD (probably more at HFA end) but full dx happening in January. He's currently getting SALT - well, after a fashion, we see her once a month for half an hour and she gives me exercises to do with him at home. He also has someone from Early Education going into his nursery for a couple of hours once a week, although this seems to be more for observation than input at this stage.

He's been GF/CF for 4 months, and we've seen big improvement with this. He's pretty verbal - talking in 3-4 word sentences, although at times they're fairly muddled or veer off into repeated dialogue from TV etc. Generally he seems to be making good progress - he plays and relates well to us, but eye contact/interaction with strangers isn't good.

I've had some great information from Jimjams and Davros on ABA, and having digested all that we've decided to go for it. What we're thinking is that we'll start off with something like 2 hours every afternoon and see how it goes.

We've joined peach, but not sure what next step should be. Is it better to recruit own therapists or use people already working in local area? And what's the average hourly rate? Have you been doing aba for long? With good results hopefully?

Also, I suppose there's a slim possibility that dx will be something else, like dyspraxia or ADD, although I doubt it. But I'm guessing that if this turns out to be the case, aba still won't do any harm? Just a flicker of doubt in my mind that we should be spending our money on eg.private SALT instead.

jakbrown · 25/10/2004 11:50

We've been doing ABA for a year. My dd is at the severe end of the spectrum and we have seen an amazing change in her. A year ago, my dd was totally in a sensory world of her own with no playskills, no communication at all and virtually no attempt to interact at all (head down, she spent all her time tapping things). She has learnt to manipulate cause and effect toys (I seriously thought she may never get any playskills at all), exchange pictures to request, several makaton signs (but needs help with most) and, above all, is such an interactive little girl. Her eye contact has improved beyond belief. The programme has given her life purpose and helped her understand what the world is all about. Now this is a little girl with very complex difficulties- ABA will bring out your DS's full potential. Our lead therapist was working with a local family, we have another whom we met through her and we've trained one up. We pay between £8.50 and £12 an hour. More for supervision (£18 an hour) and oura consultant costs around £450 a day. IMO it doesn't matter if your DS is diagnosed with something different, ABA will help him learn. We are very luck and get full funding and, to be honest, my dd would be hard pushed to learn anything at nursery.

beccaboo · 25/10/2004 12:09

That's fantastic to hear, it sounds like it's made a wonderful difference already . How old is your dd?

£450 a day, eek! How often do you think you need to see the consultant? It's great to hear that it IS possible to get funding too - did you have a big fight on your hands to get it?

Have you read Karyn Seroussi's book? I thought it had a lot in common with 'Let Me Hear Your Voice' but it's a bit more balanced - her child is also 'recovered' but she does point out that it's only a possibility in a small number of cases - and she started intervention before he was 2 years old, both diet and ABA.

jakbrown · 25/10/2004 12:26

She is 3. Funding was really hard to get but I virtually threatened to take my clothes off and attach myself to the LEA gates... But we were very committed to it and would have sold our house etc to do it. We funded ourselves for about three months before we got funding.

beccaboo · 25/10/2004 12:30

Maybe I should try that. I reckon they'd definitely pay me to keep my clothes on .