Following on from doing the 2-day PECS course - I went into DS3's nursery today to do some PECS work with him and his LSA. It was a little bit depressing, and I don't know what to do now...

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Moondog, Jimjams, anyone who has been in a similar situation - would really value your thoughts and advice.

Just to recap - I did the 2-day PECS course on Monday and Tuesday this week. DS3 has been "doing" PECS for months at nursery and a little bit at home.

I went into his nursery today with the intention of doing some PECS with him and his LSA - because as far as I could tell, he's definitely only on Phase II and therefore needs two people to do PECS with him, one to be communication partner and one to do physical prompting if necessary.

Anyway - he did some good work PECS-ing for his favourite snack, for a toy car and another toy.

BUT his LSA is definitely Doing It Wrong! She seems to think that the point of the PECS symbols is to teach him to talk - whereas surely the point is that the PECS is communication in itself?

I won't go into the details of the many different ways in which she is doing it wrong, but in particular:

1. She doesn't always have him take the symbol off the front of the PECs book - Ithink she just lets him be lazy and pick it up off the table.

1. She was completely unfamiliar with the idea that in order to complete Phase II he should be able to travel with his PECS book.

1. When I mentioned going on to Phase III, she basically said that she was hoping he would learn to talk before that, so it wouldn't be needed .

Now I really like this lady - she's done lots of other good work with him, getting him to use the toilet, wash his hands, sit with the other children etc - and DS3 really likes her too.

So I need to keep her on-side.

BUT after just three evenings of doing PECs at home properly - DS3 is so much better - tonight he PECs for four items, we did about 15 exchanges in total, both with me and with DS2, and in the end he was doing them without any physical prompt. I really think he could do very well with PECs - he can already point to quite a few pictures and say what they are - but I don't see how we can do it if nursery aren't also doing it "properly".

So - any suggestions? Would it be worth paying the money to get someone from Pyramid to come and do a short sharp intensive course with him (and her)? Should we just soldier on at home, and try and find someone else at school (e.g. head of Autistm Resource Base, autism specialist teacher) to try and give LSA a refresher course in PECs (she has according to her done the two day course but I am a bit )? Ring up the SALT (who we have never seen) and plead with her?

Any thoughts/answers very welcome. I keep veering between optimism (because I really think he could make progress) and depression (because of all the missed opportunities to do it properly).

Is she trained? Oh hang on just seen yes supposedly.
Is this a mainstream setting? This was exactly the sort of problem I had in mainstream and never really managed to resolve. The relief of going to a total communication environment was immense.

Wouldn't ring up SALT - a lot have no idea about PECS anyway.

If you want to continue with this LSA for a length of time then the best bet is hands on work from pyramid tbh. They have the authority and that may make her listen.

How much longer is ds3 there?

You sum up PECS situation so well.
It's so great but only if people do it right.
Most don't.
I can't understand why this is so.It is very prescriptive so it is a case of simply following the manual if you get stuck.

The teacher I first worked with and I had it permanently open in the class for about 6 months.

She may well have done the 2 day PECS course.Maybe it just didn't sink in (I know plenty like that.)

I think it is unacceptable for a parent to have to take on the strain of teaching people who are paid to work with their children how to do it. Pyramid can do consultancy visits. We had them. If I were you i would kick off nicely about crap PECS. Write a letter of 'concern' to Education Officer and copy in SNAP. Phnoe Pyramid and discuss it. Are there other PECS users about? I t may be feasible to pay for a few days consultancy and have the persopn deal with various kids.

SALT should support you but even many of them don't understand importance of doing it properly (to remind you why it is important. PECS is based on ABA. ABA is about applying scientifically proven rules of learning and reinforcement. We know how to help people to do so, therefore the message is JUST BLOODY DO IT as it is supposed to be done!!!

(NB I have a handout on useful PECS ideas for the home and school.Could send it to you if you like. If you want it, let me konw your e mail address.)

Jimjams, he is with her for at least the next two terms.

And we are really pleased about that - he is moving up to Reception in Jan and I think she will be invaluable.

At the same time, teaching him communication skills is just so bloody vital (I don't know why I'm telling you that I can hear you going, No shit, sherlock ).

I will contact Pyramid and ask how much it would cost.

Yes, it's ALL about communication.
Mess that up and everythin g else is stuffed.
Be frank and polite but firm. Don't put maybe hurting someone's feelings higher than your child's needs.
Get it sorted now and it will save sooooo much future hassle.

I agree - get Pyramid in if you can. I've seen so many different interpretations of PECS from different SALTS and in different schools that it's mind-boggling. I did the course quite a long time ago, and sometimes now I wonder if I'm wrong.

It's so frustrating when school aren't getting the hang of things isn't it? We had this a lot at first, though now they've got to know DS2 it's got much better (and they're much less defensive about listening to me about what works with him).

Thanks Moondog - cross-posted with you as replying to Jimjams.

I think I will have a word with the head of the Austism Resource Base at the school, and also have a chat with the Autism Specialist Teacher who worked with him until recently. Will also contact Pyramid to get some kind of idea about costs.

If perhaps school and I could split the cost and Pyramid could work with several LSAs and not just DS3's, maybe that could work.

I think part of the problem is needing two people at Phases I and II - I think that the LSA has been both acting as the communicationn partner and physically prompting him to hand over the symbol - no wonder he's a bit mixed up.

And when I suggested he should be PECsing to go to the loo - she looked at me as if I'd taken leave of my senses .

Classic and v common mistakes.

Don't pay for her to have this specialist input.It's the LEA's responsibility, not yours.

Get tough.

thanks sphil. I actually think that in many ways she's better at working with him than me - e.g. today after he'd worked for about half an hour, he decided that me being there = time to go home, and he was very hard to deflect from that! But I think she thinks he will "pick up" speech and tbh there is just no evidence that that is happening. yes, he says more words now - but they are not addressed to anyone in particular, they are not "communication". Dancing around going "No more monkeys jumping on the bed" is very cute but doesn't butter many parsnips, does it?

I get that if I go into school - DS2 just goes to get his coat, whatever time it is. I think it's a common misconception that autistic children will 'pick up' speech - almost every word DS2 has he has been explicitly taught - though I accept not every child is like this.

I do agree with moondog that you shouldn't have to pay for input. I do agree with Moondog that you should get the LEA to do it etc etc. I just know from years of fighting that if you can afford it it is easier to do it yourself so you ensure your child gets the help they need it now (not in 2 or 3 years time after the LEA has stalled at every step). Doesn't mean you shouldn't be battling away with the LEA in the background - but it makes that slightly less panicked and less stressful. Life actually became 100 times easier once we started paying for the stuff we really wanted done our way.

We still have problems with Archie trying to rush onto the next thing by the way. countdown clocks/timers/wait buttons and of course the old visual timetables really helpful. I was in school yesterday talking about the same thing. For ds1 the thing he responds best to is the time timer - it does wham on his brakes up to a point.

Can you explain to the LSA that out of context echolalia is not communication? Maybe she is reading too much into the phrases and is assuming it must be based on normal language? I think this is probably quite hard for an autism outsider to pick up.

Yes JJ. I agree with you too.
It's just that I can't bring myself to publicly endorse parents spending their own money, while privately reconciling myself to this often being the case.

I do it myself all the time.

You can however be cheeky and invoice the Education Authority at a later date. Recent case against Lambeth EA where parents did that with £25 000 spent on ABA. They got it back.

Also for future statements or reviews, get all this stuff written in.

I do know what you mean. When ds1's NHS SALT went on maternity leave and wasn't replaced when he was in mainstream I first tried (via MP's, councillors, head of SALT to get her post covered) would have benefitted everyone. I had to give up and insist the LEA paid for ds1's private SALT to go in (SALT being in part 2 of his statement). Didn't help anyone else though

I got massively side-tracked from all this today but am going to pick up the cudgels next week.

I need to really think about whether mainstream is still the right place for him as well.

I think that because he doesn't (at the moment) have any behavioural issues at nursery, they underestimate how autistic he is.

That's a very good point SSB. Often the 'good' ones get the least attention of all.

Yes, that was my experience with DS at his duff private nursery - that because he was pretty placid they both underestimated and overestimated him iyswim - that they didn't realise what he might be capable of so didn't do enough work with him languagewise, and overestimated in the sense of giving me guff about him not having SN "just" developmental problems, and hinting at selective mutism . Their main interest in DS seemed to be to cuddle him

I think that a lot of inexperienced people underestimate how all pervasive autism can be anyway. Often our kids can be very good at giving an impression of understanding. It's weird but in many ways the problems become more apparent as they become more able.

For example aged 2-4 ds1 was extremely passive. This made him seem very laid back, he sort of waited until told what to do then did it. All looked quite normal. In actual fact this was because he understood literally nothing. He had no idea he even had a choice about anything. He had no idea really that he didn't have to do what he was told (or placed in position more realistically). Within a flexible nursery this was fine. In a mainstream school with lots of lining up lot of boxes to be ticked, things needing to be done in a certain way it all began to fall apart. ,

It's really essential that the people working with your child understand autism. That's more important than anything else. And that they understand your child's bit of the spectrum. DS1 had 2 LSA's who had experience with AS. That didn't give them the faintest idea how to deal with ds1.