People using PECS/sign with non-verbal children please read

[bakabat]

I'm thinking of looking into whether having an efficient alternative communication system at home reduces stress for families.

I'm guessing from my own experiences and that of friend's that it does.

However a lot of children use a system well at school but not at home, and I'm thinking of why this might be. My guesses are that it's

a)hard to set up
b)you get zero/v little support
c)often the only way to learn the system properly is to pay to train youself and it's expnsive
d) no attempt is made initially to match the system to the child. If your therapist uses makaton you get shown makaton and vice versa. Some children have a strong prefernce for one system over another.

I reckon locally it takes most parents a year to get going with an effective system at home- and then only if they do it themselves.

Just looking for comments and observations from other areas and other people's experiences.

the project will focus on autism (just for boring statistical reasons) but I'm interested in any disability where an alternative system is needed.

These questions are just to see whether there's a need for work in this sort of area (there's a meeting next week and I'd quitelike lots of opinions from round the country.

All confidential of course - and if I decide to do a project on this it will be for my msc- may or may not be funded - but I would want to use the results to look at ways to improve early intervention (ie provide some).

oh PS thanks

It turns out that DD is ASD: we weren't expecting this, but were expecting Oromotor Dyspraxia (which I guess she still may have as well as the ASD) so have been signing with her from 5 months.

We're not using Makaton. We use a simpified BSL. We hadn't heard of Makaton when we started. Tbh, there is no way of having "early intervention" with any of these systems (Makaton, PECs, whatever) because to access them you need a diagnosis, and diagnoses are WAAAAY too late.

Turns out that yes, Makaton is really expensive (book costs four times the equivalent BSL book), but also inaccessible. You can buy any number of BSL books on Amazon: do a search on Makaton and you come up BLANK. The whole thing is geared around distribution & training via govt bodies and govt bodies don't get involved until it's TOO LATE for your child.

So - here we are with a signing system which will not match whatever she is faced with at special school. We're discussing with her SALT therapist whether to switch to an alternate system and if so what - but it will all be so confusing for her.

very helpful- thanks. The parent distance training Makaton course is v pricey isn't it? And yet sure start areas run baby sign courses (often not in Makaton btw). Makaton arer producing their own version of baby signing next year- maybe sure start should be running those and then inviting "high risk" families as well.

Did you have any trouble with introducing sign (ie how to do it? Were you given any advice? Or let completely alone).

DS1's first SALT tried to get us using Makaton (we were given no resources- just told to do it). Age 6 - and having exposure to Makaton at school every day he still fails to use a single sign. He can't imitate motor actions so not surprising really- but it took about a year post dx before we were even introduced to people using PECS. Eventually we paid for PECS training ourselves (mega bucks of course).

I personally think at the earliest stage they should try to match the system with the child, then run regular parent workshops, then keep in regular contact with parents. Idealistic??? Perhaps. Definitely. But I thought showing that parents suffer stress currently as a result of support failings would be a start.

I remember we ere given the dx, given a leaflet on the NAS and sent home! That was it!

Think this sounds brilliant. Will definitely contribute! Will be back later

I have found with dd starting kindy at the Special Education Development Unit (part of the education system) - that a number of people working there are not that clued in to makaton.... strangely enough. I know more signs than a number of the teacher aides and the head of the unit. How that impacts on dd1 at kinder I don't know - she seems to be coping and using her words more I think.

We started on makaton as it was suggested to us by friends ( no salt whilst in the UK) only to discover that there are differences between australian makaton and UK makaton - if you can believe that. Poor dd1 had learnt one sign when we arrived here in AUs - the sign for more - only to learn it is different here.

With dd1 - the explosion in her communication when both dh and I were using makaton with her was and continues to surprise us... I htink once she realised that signing gave her a voice - she wanted to do it all the time. Even now we get a running commentary of what is happening.

Until dh ( particularly) and i attended the makaton workshop put on by our salt - we felt awkward signing and it seemed to be a pain to look up the sign remember it etc... I guess it took a while for it to become second nature. We certainly came away from the workshop feeling more confident and equipped with more signs...

HOWEVER - had our therapy team not offered that - I am not sure how we would have coped with that ( essentially learning a new language) added to everything else that needs to get done in a day iykwim.

Hanen has been amazing - even to prompt more signing, speech, vocalisation from the children whose parents are undertaking the training. It has been incredible to see their communication improve.

Is that what you wanted to know...... not sure if I have answered your questions...

anything else you want to ask - feel free to CAT me.

Bakabat - ha ha ha - we were given nothing. In fact, discouraged from using any system at all. We had no diagnosis at this stage so we were "hysterical parents" possibly harming our child's development with this nonsense. I did what research I could on the net (diff when you don't know what you are looking for) and bought a couple of books and taught myself & DH (& Nanny) completely from scratch. Didn't have time to do a course, but tbh I think we do fine without one.

Eidsvold - yes, I have also found I know more signs than the professionals involved in Helena's care. (fortunately Maketon and BSL are v similar for the common "baby" signs) Her SALT therapist knows very little sign and doesn't like us using it, although H clearly understands signed words better than just spoken ones. She also goes to an Opportunity Playgroup - staffed by volunteers. Most know no sign of any sort - I've photocopied the key "you must use these" signs to stick to their wall - but I suspect they don't use them as H's understanding of sign seems to have declined since going there. (They don't let us attend any sessions, so I can't help/intervene)

It makes me HUGELY angry because it's clear that an understanding of the concepts of communication is built at the earliest age - way before speech - and the clearer your communication is in ASD, the more chance they have of latching on to those concepts and making early progress. And a simple assessment/recommendation would cost virtually nothing - we're not necessarily talking about therapy or expensive courses or whatever. Just an early assessement and guidance how to proceed at home. But in fact, you're discouraged from doing anything off your own bat at all.

My ds is the same Bakabat, his sn nursery used Makaton all day long but he hasn't learnt a single sign. I did tell them that I didn't hold out much hope as he hadn't imitated so much as a bye bye wave in 2 yrs. I even tried to make him sit in front of 'something special' and used some of the signs from that at home on a daily basis but he's not interested. He's very resistant to PECS too. He knows what the symbols mean and he can read quite a bit but he won't touch the cards or point (well, gesture really). He has his VOCA and he knows how to use it but he doesn't like touching the buttons. He will just hover his fingers over them for ages or sometimes push them with his foot! It's all very strange because he is sooo fast on the computer/playstation/gameboy and will play for hours with remote controls. I think it is really the idea of having to communicate that he objects to rather than the method. He will use the voca a lot more at school than at home but never voluntarily. It's very disappointing because I expected that like Eidsvold's dd1, ds would suddenly WANT to communicate once he was shown how, and once he realised that he could get what he wanted straight away instead of waiting for us the guess.

Oh and about the help. Although the nursery used makaton there was no information available for us to learn it ourselves (we did ask) or even any indication of which particular signs they were using on a daily basis. He went to an ordinary church playgroup a couple of mornings a week as well. They were very good as he had a 1:1 and also someone from the sn nursery would come in every couple of weeks to make suggestions but even so, no-one ever mentioned signing so it was never used there. Looking back it must have been confusing for him but at the time I was too traumatised by the ordeal of leaving my hysterical child to be able to think about that myself.

I wish I'd had the voca then because ds could have taken it to both nurseries with him and it would have been very easy for friends and family to understand too. Even elderly or very young people can understand pressing a button that makes a voice say "drink" or whatever and it's even quite fun! I think he would have been more willing to communicate now if he had had a simple way of doing so with anybody when he was small, not just people who knew pecs or makaton.

wow thanks interesting. This is very helpful.

Pixel- slightly OT but do you think its because he doesn't want to communicate or hasn't yet realised that communicating gets him what he wants quicker? I',m interested as someone has said to me that if children can make sounds and say odd words then they should be able to speak- they just need to learn that speech will get them what they want faster- and she says once they realise that then speech just happens. I think that happened with ds1 for PECS. ONce he'd realised that it would meet his needs then he kind of got the whole point of it. I've been trying to teach him the same thing fpr speech now and I think it might kind of be working. It was just something I hadn't really thought of before (I kind of assumed he'd realise that- now I'm not so sure).

On a practical level who paid for the VOCA- was it hard to get funding? Is it easy to use? Aparently they are developing a kind of PDA system to use instead of velcro and laminated cards for PECS. Is your VOCA robust- I'm sure if we had one it would end up down the loo- everything else does

Ooooh,baka,one to get my juices flowing!
I'd be happy to contribute extensively.
Agree with all your points.
Also like to add that responsibilities of parents,education and salt need to be clearly set out before embarking on something like this (some sort of contract) because it all becomes a bit of a grey area with everyone expecting everyone else to do things. (I'm talking stuff like laminating,velcroing and so on.)

I have posted in the past at my frustration with spending hours cutting,gluing and so on,while classroom assistants sit back.
Not that I am too grand to do this stuff-on the contrary!I will pitch in with whatever needs doing,no matter what it is.
However it is such a waste of me as a rare resource.

Parents need to know how much is expected from them too. Sadly,I have met very few families who put in as much effort as I think they should. (Sorry if that sounds harsh,but as the parent of a comm. impaired child,I take on a huge amount of responsibility for her-as I should. She is my child after all.)

The Makaton issue is one I've tussled with for years.People seem to love or hate Margaret Walker's way of doing things. I understand the reason why the company want to maintain control for reasons of uniformity and consistency of standars but i am really unhappy with the idea of effectively patenting a method of communication.

I also run baby sing & sign groups and we use a generic system-probably Signalong really.

Eidsvold's comments re Hanen are interesting. Think stuff like this and signing generally seem to work best with kids with good pregmatic skills (just an informal observation.)
You do need someone skilled to match a system to a comm. method at an early age,also to monitor and if ness. switch.

I'm really bothered about R3's therapist discouraging the family's use of sign? Why R3? have you had a reason or is it because she doesn't know enough about it??

Salts are shaky on stuff they bare not trained in-like everyone. Went to see an old PECS sceptic salt colleague the other day. Happily she is more into it (done the course twice) but she still said
'Oh I can't be bothered with that 4 step error correction stuff. I figure they'll get it eventually.'

WTF??! It made me really angry.

So lesson is..question your salt on her area of expertise. Has she been trained in PECS (2 day course at least,not just flicking through amanual)?Makaton???

You deserve to know and actually you are doing the salt service a favour if you reject bad service.Maybe then we will have more money poured into it (in my dept.we often all have to chip in from our own pockets if someone wants to attend a course as there is no money left.)

Will watch this one with great interest.

Confusion also with what salt and school should be doing. My point is always that comm. is the responsibilty of everyone.

I refuse to work in the old way-remove child from class,'therap' him in a broom cupboard for 30 minsX1 aweek and return to class.

So...who buys the stuff,who keeps picture files up to date,maintains books,makes new pictures...
Such a lot to think about.
Getting PECS established in my area and being responsible for everything for two schools containnig about 100 kids nearly gave me a nervous breakdown.

mizmiz- this is off topic too- but what about SALTS who have been to the workshop but still insist on things like children ebing able to point before they'll teach PECS (wtf? bangs head on wall )

I'm not sure I agree about the family thing- wellI do- but I do think an awful lot of support is needed to get going- and that it is very difficult to do that without a training course. I found that I looked into PECS, read the old manual, watche dthe video. Tried it- tried to get dh to help and be the partner- he had no idea what he was doing, I didn;t understand it well enough to teach him. IN the end I insisted we both go on the workshop. BUT financially many families will not be able to afford that. We were ready and willing before, but unable to implement without further input. I think the case in autism is a little different than for some other disabilities because the child isn';t necessarily remotely interesting in anything you are doing. You kind of know the system but first you have to get the child to sit at a a table and maintain attention long enough to get through the first exchange. Incredibly difficult without seeing it done or having someone help you with that.

mizmiz- this is off topic too- but what about SALTS who have been to the workshop but still insist on things like children ebing able to point before they'll teach PECS (wtf? bangs head on wall )

I'm not sure I agree about the family thing- wellI do- but I do think an awful lot of support is needed to get going- and that it is very difficult to do that without a training course. I found that I looked into PECS, read the old manual, watche dthe video. Tried it- tried to get dh to help and be the partner- he had no idea what he was doing, I didn;t understand it well enough to teach him. IN the end I insisted we both go on the workshop. BUT financially many families will not be able to afford that. We were ready and willing before, but unable to implement without further input. I think the case in autism is a little different than for some other disabilities because the child isn';t necessarily remotely interesting in anything you are doing. You kind of know the system but first you have to get the child to sit at a a table and maintain attention long enough to get through the first exchange. Incredibly difficult without seeing it done or having someone help you with that.

That's so thick baka.
In bthis case,I would point out cooly 'You're wrong' although can well appreciate that not everyone would be able to do this.
What do you mean precisely about'family thing'?
I'm not really sure.

I'm trying to say that God yes,of course people need support (feel very sad thinking of you struggling alone initially with PECS and trying to get dh in on it) but they also need to know that it's hard work and requires commitment and organisation.
Hand on heart,I put 100% into everyone on my caseload initially, but if the families don't work with me,I just can't keep on doing so. My attention focusses on those who get on with things so that with each visit we move on instead of wasting time trying to reestablish csomething over and over.

Voca has been lent by the school. It's a very basic one and seems quite robust. It has a cover with a clear front (a bit like a mobile phone)so that it doesn't matter if things get spilt on it. I'm not sure what happens if ds gets the hang of it and needs something more complicated. Perhaps we would be expected to pay for that, I don't know.

It's very easy to use. Basically a voice recorder where you record a different word or phrase on each button and then slot in the appropriate symbol. If we want a new symbol the teacher sends one home and we record it ourselves.

pixel- thanks - that's helpful.

Mizmiz - I'm not sure what type of families you work with. The most we could have expected to see a SALT here before ds1 moved across to special school was one every 8 weeks and that's not anywhere near enough support to set up an AAC system at home- whether the family are on board or not. It[s not enough to do anything at all really is it?

Most of the people locally who have tried to set up PECS at home have done it with help from portage (often with the SALT specifially not on board because the pre-school specialist SALT is the one who insists on pointing before PECS- so she refuses to do anything and portage have to do it behind her back!). Portage visit an hour a week and have other activities to do as well- and I just don't think that's enough. Parents need workshops, to practice on each other and then to go home and use it, with someone they can ask for odd bits of advice when they need to.

I haven't read all of this, I'll just give you our experience. We were lucky becuase, having a home ABA program, we were introduced to PECs and visual cues/strategies very early. NOT by our local speech therapist I must say! We did the classic thing though, "introduced" PECs but didn't really do it properly and had to go back to basics some months later, I think a lot of people do that. I went on the 2 day training myself and our ABA supervisor was also on the same course. We then started to get it right. I also had a team of people so making the materials was the job of someone in the team plus me. At the time I didn't work, although running a home prog is like having a part-time job never mind the statementing, dx etc. It was a mixed blessing being able to make materials very quickly and easily as we ended up with FAR too many and it was risking becoming non-functional because DS could only see a load of clutter. I took the PECs book and got rid of everything that he didn't ask for regularly or even occasionally and anything that was for US to show HIM rather than for HIM to communicate with us. A year or so after starting PECs I took DS to a private SLT who used Makaton and I decided that we were going to do Makaton so organised a training session for my team which cost about £100. We then used to practise in team meetings etc but, again, it got out of hand and people were trying to get him to make the most complex signs and differentiate every little thing. I also put a stop to that and insisted that it must be functional. DS totally understands the concepts of signing and PECs and will make up signs or find a scrap of wrapping to ask for what he wants if a sign/PEC isn't available, I'm told that's really good as its generalised and shows he really understands what its all about. BUT, being autistic, there isn't that much he wants to ask for, even though he could!
I don't know what happens now with our SLT and the CDC but I think that the first thing they should do is introduce PECs so all children with learning disability and/or communication problems. I firmly believe that it is a good idea to use visual cues AND signing but not to introduce them together. We all use more than one form of communicaiton don't we? We don't just speak or write or gesture, we do all of those, and each type of communication has its weaknesses and strengths, one being better in certain situations than the other. I always shudder when people are anti PECs or anti signing and how many times have I heard parents say that their child doesn't need it because they can speak..... but functionally? I think a lot of kids with poor communication, even though they can say words (not speak as we know it) are missing out by being denied these supports to their commununcation.

oh god you are so right about having to prune the symbols every now and then

School have a good system. All the adult request symbols, or general request symbols (eg stop, help, wait) are in red on the front of the book. All the specific request symbols (bsicuit etc) are inside in black and white. Now why didn't I think of that?

We were pretty lucky. At three ds saw a SALT who always used makaton and symbols. At three and half, he signed listen back at me when I said it to him. SALT very excited and really gave a lot of support with signing. I went to a singing work shop and bought the first makaton package.(I agree that its wrong to have to pay so much for communication aids which are essential to a child).

Portage helped set up a crude version of PECs at home, which again worked well for my ds.

Earlybird course gave support via other parents.

Son got SEN placement at 3.6 where staff were in early stages of PECs and makaton training.

He has now reached a point where visual timetables are used and is verbal.

just something I found incredible is how easily dd2 (nt) picked up signing... I thought I would see if she could pick up a sign - well she signs more - using food - the great motivator in our house....

It is also interesting to see how dd1 has refined her signs eg More here in Aus is a cupped hand on the chest nad then move hand out from the chest. Dd1 started just with hitting her chest. She now does the sign correctly - as well as say the word. She is getting very good with signing and using the word - some signs have gone by the way as she uses more words

today she sat and watched an aussie makaton video and was madly copying all the signs - interesting to watch her.

Haven't had time to read all of these posts so sorry if I repeat anything.

Dd uses makaton, or her variations of signs, as she doesn't always have the fine motor control to do the signs accurately. This works fine at home as I know all her little nuances but makes it more difficult at school etc. In that respect I think PECS might have been a better system for her but she is now used to 'talking' with her hands.

We have had absolutely no help with teaching her. I asked the SALT who visited us in the first year about going on a makaton course and every time she would say "oh we've just had one, not sure when the next one is". So in the end I gave up and just bought some of the books (bleedin expensive) and watched Something Special. this is fine at the moment as mostly dd is just using a single sign but I have no real idea about how to combine signs and form sentences. she has a new SALT who I am hoping will help.

I also asked about Hanen and PECS but no real response or encouragement. Infact, discouraged from using PECS because "she might not get it and then it will put her off".

I actually think dd would do quite well with PECS as she is very visual, loves books and definitely seems to understand that pictures represent real things IYSWIM. We are starting to introduce a visual timetable for her.

She is doing well with signing but I am keen to keep options open and maybe introduce PECS too. One of the reasons I haven't so far is not having time to make all the resources (too expensive to buy).

Hmm, in short, I do feel I have had very little support in terms of finding a communication system for dd. It seems to me that unless you have a good SALT (like mizmiz ) then it is pretty much left to the parent to initiate and instigate most of it.

Oh and as for reducing stress, I have no doubt that being able to sign and communicate has empowered dd massively. I decided about a month ago that i was going to make a real effort to teach her the sign for yes, as well as the concept of it i.e she could use it to confirm my random guesses about what it was she wanted. Within a week she got it and her whole confidence and development suddenly made a little leap.

This makes incredibly depressing reading and merely reinforces my belief that the present model of delivery means that many SALTs are actually completely ineffectual.

You're dead right baka,the idea of trying to set up an intensive A/Ac system with input from a SALT every 8 weeks would be funny if it wasn't actually shameful.

I have long argued that we need to give a burst of intensive input to families with children who will need a long term augmentative system and that ultimately it wil be more economical to do so. Once the ball is rolling,I find most families just need an occasional visit or even phone support.

I work in a fairly rural area and have managed to sort out my workload to some extent in a way that reflects my views. The powers that be don't like it but frankly I don't care and frankly such is the half arsed ad hoc glue and paste nature of SALT provision that to be honest,as long as noone is complaining about me and my work,then I am allowed to get on with it quietly which suits me fine.

The message seems to be that unless you're a pretty confident,articulate motivated person then frankly you shouldn't expect very much at all. if the people posting here (who seem to fit into this category) are finding things a battle,then frankly what hope is there for everyone else??

Baka, I know it's not your intention but wouldn't a thesis outlining the shameful discrepancies in
resources available to children who need an A/A means of communication,liberally scattered weith lots of stories like these be a great idea?
Maybe that's what I should be thinking about..

I still feel outrage at the salt who insists on pointing before PECS implementation. Is this the bad one you mentioned months ago? Did you make a complaint about her?

Oh yes, the reducing stress issue is really important. In my many quests to learn more about "challenging behaviour" and SIB I have learnt that the biggest cause of anxiety, stress, SIB, CB is poor communication. It is the number one factor that is considered first. So if it reduces anxiety etc in the person with ASD and/or communication problems then it MUST reduce it for the family. BUT, implementing the system(s) is a stress in itself. I know my apples 'n' pears but I am sooooo aware that I must do more at home on communication with DS, I just find it very, very hard to find the time or opportunity when I'm not too knackered to even think about it.