Sam and George - Charlotte Moore

[Jimjams]

Just finished reading this. Very interesting - I think something struck a chord with me on every page. Probably because ds1 is quite like Sam (both have/had washing machine, iron, tumble dryer, clock obsessions, both have constant verbal stims, both enjoy yelping in buildings like churches, both almost non-verbal but not quite, both gluten free (Sam is casein free as well). Quite a bit of George thrown in as well- perfect pitch, ridiculous memory). She also does part time ABA- so it was very like reading my life.

Also it has a VERY useful bit on advice to friends. What sort of help to offer etc.

Off to order a copy for my MIL. Unfortunately it doesn't say "dont disappear to bed for 2 hours in the afternoon when you visit", but maybe she'll realise that herself after reading the book

Jimjams, glad you posted this, would be interested to hear your opinion on this post from another MB:

jimjams, sounds very interesting - I'll have to go get a copy. My dd goes to nursery with quite a few little boys with autism and us parents always have a nice chat at home-time, it'll be good to get more of an insight.

I have started reading it and feel she had summed up my children to a tee!!! I loved how she describes how the babies developed and how people kept comenting on the 'brightness' ....how many of us with HFA put up with sleepless days and nights in the belief that 'we had a bright child'....she even mentions MY THEORY that i depended on for years which was THE REASON HE WAS SO BRIGHT WAS THAT HE WAS AWAKE SO MUCH HE WAS ABLE TO LEARN TWICE AS FAST.....also loved the bit about food....the tomato sauce is thomas ...and she even says what i do which is to try to convince myself that there is something 'healty' about what limited food our auties eat.....thomas i'm sure would live on Mars Bars....well lets see......there's Milk in chocolate (Hmmmm does that count?) and as she says crisps ARE made from potatoes!!!! On another thread i mentioned the '5 portions a day'....and i had not read her 'exact description' at that point....thats why i LOVE her's and Jaqui Jackson's work as people like them are able to write these books so that 'people like us' can feel 'on the inside' rather than 'outsiders' as we can feel when people observe our lifestyles.

Really tricky one Janh. Mainly because if he's already been seen by a paed etc then his parents would have to fight like hell to get him seen again (unless the school go through ed psych channels). I think its tricky to do anything much in this sort of situation. The only thing I could suggest would be that the SIL is "lent" George and Sam as an interesting read. Of course she may a) see straight through that and get very offended, or b) fail to notice the similarities.

I think there's almost nothing that can be done (what should be done is a different matter). The fight has to come from the parents (or the school).

Davros is probably a better person to ask about this- she's better at it that me.

Thanks for that, jimjams - will pass it on!

I want the book! I want the book! I've seen one of the extracts and really liked it. How much is it?

pricey because its still in hardback! Can't remember though 15 quidish?

£11.89 from amazon , coppertop.

Plus links to Multicoloured Mayhem etc.

Coppertop You should be able to borrow it from your local branch NAS.

Thanks everyone.

OOOOH! i paid £16.99 at the local bookshop!!!!!!

favourite bit i read today was a bit about the way her son 'became' known as the dwarf BASHFUL e (from snow white) and he insisted on being known as BASHFUL Moore at school....reminded me of how leigh would 'become' Gordon or Henry from Thomas the tank and how his teacher would not allow him to be called this at all...yet i'm pleased to say that i did 'play along' and could be heard calling my son different names most days.....or smoothing his fur.........or other such things!!! And charlotte even described how the child would not involve anyone else unless they knew the dialogue from the book/programme they were 'being'....mentioned ages ago on here somewhere how leigh used to come up to me and i'd be TOLD to say "Hello who are you"....and he'd say "I'm Gordon Who are you?" and then i'd say "I'm James" he'd then go on with things like "You are red i am blue...." or "you have a number 5 I have a number 4" etc!!!!!!!

Just intregues me that all over the world there must be all these children doing a similar thing!!!!

Leigh used to also ask me loads of questions....but not in the NT "WHY" way ...which for me she correctly says in her book that just does not happen....but in a way that i either 'had' to answer in his way...or he'd give me a list of possible answers - a bit like a multi choice question.....I get a variation of this now he plays the playstation...in that if he wants me to 'join in' he will offer me a choice of characters he will 'allow' me to be.....or he quiz me on facts and figures about the ghame but gets very irritated that i cannot remember all his scores or his 'fasted laps' in the latest track he's raced....i'm pretty certain that if i were to write down all these times he quotes and a week later say to him " what was the time you got on XYZ track when you were racing as XYZ character" that he'd answer to the 'milisecond' as!! feels a bit savant....but not quite rainman!!!

also loved the bit where she says about things they do which are "aspects of autism " that she loves....i feel like that too....it's not all bad....so for people just coming to tems with a diagnosis....there are plenty of 'lovely' bits too!

Also she mentions the fact that one son went mad when she moved a fire guard....so she put it back as it wasn't important to her....that's a good point as often we get imersed in all the autism and feel it's good to remember that "SOME TIMES IT DOES NOT MATTER" and we simply "Go with the flow!!!"

I read somewhere that you could put 100 people with autism in a room and it would be striking how different they all are (with autism being such a spectrum) but also amazing how similar they all are.

My DD2 age 4 has been dx with ASD and we are riding the rollercoaster. Some days have been great - like days when she 'gets' something or if she has a 'dry' day. Other days are not so great. Like her verbal/communication skills are very minimal. She was saying quite a few words - mostly nouns, sometimes 'ope' (open) or 'li ong' (light on) and you could see a little communication. Last week we started trying PECS with her - just to see if this could work as a stepping stone to more communciation. She has almost completely stopped talking but is not really using PECS to communicate either. We feel as though we are back at "Hello - is there anybody in there?" again. She is starting nursery in September and like all parents we want her to be as ready as possible. We wonder whether PECS is really the right thing for her considering they don't use it at school. Maybe we should focus on the SALT. Any advice/ideas?

Anyone know of someone who has written on a DD with autism? Most of the material I have found has been on DS's.

There's an American website called JaynaGirl , IG - just found it by googling. Haven't lokked at it yet, hope it's helpful.

looked, even!

Thanks Janh - I'll have a look.

IG- my SALT is really into PECS as it breaks down the language for ds1 and allows him to visualise. he has a speech disorder as well - but his langauge sounds a similar level to your dd's. Nouns, set phrases and not much else.

I have found PECS hard to implement at home because its much easier to let him take us by the hand or just say "da da deeedee dan" (turn the TV off). However the thing is that for him "turn the tv off" is just one phrase completely separate from say "turn the light off" iyswim. By using PECS he may learn the language structure "turn the x off"

I've signed myself and dh up for a 2 day course next month- as one problem is that I may use it sometimes but dh doesn't really use it at all. I really want to get going on PECS.

Is there no way they can use it at school? DS1's LSA does and they use visual timetables etc a lot as well (mainstream primary- for now!)

Jimjams - I had the feeling your ds was similar in communication ability to my dd. When I asked the mainstream nursery about PECS they said they don't really use it but do use a visual timetable. DD is getting used to the idea of a visual timetable as they use one at her current special needs nursery in London. I am thinking it might be wise to teach her the potty one because at home now she pretty much just takes herself but won't tell anyone if she has to go. We have at least one more visit to the school before she starts so might see if they will entertain the idea of using some PECS even.

We have thought about checking into the PECS courses on offer. Problem is I need to get DH on board as he is the main caregiver and he was into it but then reluctant when she stopped talking completely for several days. Just don't want to confuse the child when 6 months ago she had no words at all.

Yes I know what you mean about not wanting to lose what you have! That's always a cooncern

However I think there is a lot of research showing that PECS actually increases the amount of speech used. This has been the case for my son- it's all set phrases of course- but it does slow him down as well. So whereas without PECS we'll get "aiundutton" (I want button) with a PECS cue we'll get "dai dan dutton" - 3 seperate words.

HOWEVER my experience has been that it is very difficult to set up PECS without support. Initially we had a portage worker assigned who was meant to liase between home and nursery. But she didn't know anymore than the nursery manager (they'd been on the basic course together) and the manager ended up getting frustrated as she didn't really have someone more senior than her to ask questions. (We had a few problems initially such as ds1 couldn't walk and carry a PECS card (dyspraxia) !!!!)

For the last year since ds1 started school it has been much easier- the autism outreach team are all PECS trained, his private SALT is using PECS as a basis of teaching him language not just for communication (which he manages quite well without PECS really- using a combination of grabbing, shouting and his words). And I think by going on the course we will finally have the confidence to set it up properly and use it well.

I'll let you know what the course is like - everyone I know whose been on there says its pretty amazing when you get to the higher phases (we've been on the "I want x" phase for the last year)

It seems a shame that there isn't more professional support for PECS in your area. Do you see a PECS trained SALT? Or could you ask whether there's a PECS trained portage worker? What seems to happen down here is that the NHS SALTS who are meant to set it up don't quite get round to it, so the portage workers get frustrated and do it themselevves (I know that's happened in 3 cases!) If there was someone who could co-ordinate home and nursery it would make it an awful lot easier.

InternationalGirl my dd is 4 and has a global delay. We are using phase 1 of PECS and I find it quite difficult to fit into our daily routine tbh. My dd seems to use it more at nursery and tends to sign more and say words more at home. I suppose it works more for some children than others

I think PECS is quite fiddly to set up at home but I think for ds1 it would really pay off if we could get organsised with it at home. I'm just not a very organised person!

DS1 loves the George and Sam book! He keeps bringing it to me- he wants to look at the picture of Sam next to the washing machine.

Jimjams: I would be interested to know how you get on with the PECS course. DH has been working with the visitor/educational support who has supplied and showed him PECS. She'll be back next week and he can share some of his concerns. You are right Fio2 though - not everything works the same for everyone. My SIL has 12 year old ASD DS who talks really well and can talk you ragged on stuff he knows ALL about but can't figure out how to take a shower. They use the visual timetable and now showertime is not quite so difficult. I think one of the keys is finding out how it can work for you and your child. I really think we should try it a bit longer (giving it up after only a few days is not giving it a fair chance).

Only trouble is I work full-time so it is DH who is in charge!! We came across the same issues when it came to potty training. He is the one who is home - ultimately he has to put it in practice.

Will have to try Sam and George - sounds like a great book.

Have you got a copy of the PECS video for pyrammid? I think its good as it shows you how well it can work when set up properly. but support is DEFINITELY needed when setting it up.

I'll let you know how the course goes. OUr nursery manager (who is generally cynical) was talking about it yesterday and said it is excellent.

Thanks Jimjams. I don't have the PECS video but I'll see if I can find it online. I'm also going to see when the PECS courses are scheduled for my area and see about getting on one. I also have a friend at work who has a therapist who works with her non-verbal autistic child and is very familiar with PECS and we will be plugging into her for ideas. Thanks for your advice.

I read in the newspaper that Charlotte Moore is giving a couple of talks about her book at the Battle Festival (Battle in East Sussex) soon. Just thought I would mention it in case anyone lives around there...

For the video, info about workshops etc look at PECsUK . We have been using PECs for some years and I went on the 2 day course a few years ago. I strongly recommend the course although it is not cheap. PECs is very hard to get started and do PROPERLY at home. SO many people, us included, start of and it drifts into a sort of scheduling and choices resource rather than communication. We had to start all over again and be very vigilant about doing it properly and I think a lot of people have a false start and then go back to the beginning. Don't clutter up the book with things that might be useful sometimes or may have been asked for once or twice, keep it very clean and clear. We also use Makaton and I think the two systems work very well together although it would be a nightmare to introduce both at once. THe way it works for us is that DS has a big potential vocab in PECs as we can make a picture, use a wrapper, take a photo of anything and everything and it is still there once it has been "said". His Makaton though is more spontaneous and can be used whnever or wherever he wants but is gone in the ether and, if you're not looking, it has to be done again. His potential Makaton vocab is smaller as differentiating very clearly between many signs is just not something he will do. We accept reaonable attempts at signs and think that, as long as the people he's with most understand, that's OK. We can't worry about the "general public" being able to understand. DOing Makaton with him also indicates to other people (nosey parkers) that there is a communication problem without having to say anything so it helps my sanity! I think both are extremely useful and have had disagreements before with various professionals about using both, including the Senior EP for Camden! Many professionals don't see a problem though and if you just think that we all use more than one form of communication, then it makes sense (e.g. we all speak, write notes, send texts etc).