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Rant again!!!!

(26 Posts)
Jimjams Mon 01-Sep-03 22:48:21

Well after a wait of two and a half years we finally got the communication programme for ds1 - drawn up by the NHS autism specialist SALT.

Apparently we should do songs like "row your boat" and "round and roound the garden" with him (been doing that since he was born- he knows them off by heart).

We should be encouraging him to make animal noises (he's been doing that since he was 12 months).

We should be banging drums.

We should be pushing cars along the floor saying brrrmm.

We should be hiding clocks for him to find.

We should be making him blow (well you know all about the blowing business)

We should be taking a walk in the garden listening to sounds

When are these idiot people going to realise that there isn't anything wrong with his sounds discrimination- he can tell the difference between M and N and D, T, E and P for gods sake- and has been able to since he was 2- he just can't *make* the sounds.

Also when are they going to realise that we have been pushing cars saying brrrmm since the day he was born. Just like any other parent!

Agggghhhhhh I *wish* somone in the NHS would actually spend some time assessing him so they could draw up commincation programmes that were actually of some use.

Luckily a friend from Peterborough visited with her little this weekend. He's very similar to ds1 and she had a sensible communication programme so I photocopied that.

maryz Mon 01-Sep-03 23:28:10

Message withdrawn at poster's request.

Jimjams Tue 02-Sep-03 07:54:41

The problem really is that no-one has ever assessed him. It'll probably take about 6 weeks of 1 hour sessions to assess him and the NHS is totally incapable of providing that.

He falls between so many slats. He talks but its incomprehensible so he's effectively non-verbal. He's autistic, but he's keen to communicate. He really is the proverbial "complex case", but they're not willing put the time in to assess him properly and find out what his needs are.

If she continues to provide communication plans like this I'll have to pay for the private therapist to work with the school- at least she's assessing him. I don't see the point in the LSA working from that last plan.

Davros Tue 02-Sep-03 09:08:35

What? Haven't they suggested tree hugging It makes my blood boil when these idiots have NO practical ideas about how to engage a child with ASD, its different to others S&L disorders. I've been waiting for an opportunity for years to say to one of these SLTs, OTs, physios etc that give you a "program" to do at home, "did you train to do this? Did you take exams and get qualifications?" and when they say "oh, yes" then I want to say "well why the bloddy hell do you expect me to go home and just do it?" Don't know what to suggest Jimjams, I found SLT to be the least relevant of all the inputs for my son although communication is the most important issue. We just worked and worked on teaching other things as well as verbal imitation etc and his receptive language developed from that. LIke your though, he can make separate sounds but can't put them together. We work on his vocalisations but using PECs and/or Makaton at the same time. Signing definitely started him trying to make sounds like talking but it plateaud and he didn't develop a big vocabulary but it kick started him to his current level of vocalising but we stil use PECs as well as the potential vocabulary available to him is vast.

Boe Tue 02-Sep-03 09:45:58

There is an article about Autism in this weeks Newsweek - I have not read it yet but they are normally very clued up - nothing to do with your rant - just thought may be interesting to you guys with Autistic children.

Jimjams Tue 02-Sep-03 14:28:24

Thanks Boe- I'll get that.

The thing that *really* winds me up Davros is that they often seem to have no idea of the most basic problems faced by autism. For example "make a pretend candle out of toilet roll and tissue paper - pretend to blow it out" What?????!!!!!

Because ds1 isn't remotely interested in the same things as NT kids they say he has no motivators as well. When they wave a teddy in his face, or a dolly they translate his complete non-reponse as being a sign of him being "totally in his own world" rather than a complete lack of interest. I've just spent 15 mins sitting down with him flicking though ideal home magazine. He was fascinted and *pointed* at every washing machine, tv, computer and set of stairs he spotted (and because he won't point at the stuff on their stupid tests- which lets face it are normally toys becuase they're designed with the NT kid in mind) I get told he can't point.

I wish these idiots would realise that they are complete aliens, they are not motivated in the same way or by the same things as normal kids, but it doesn't mean they are stupid.

Ds1's vocab has gone crazy at the moment. Every few months he changes all his words and we have a very confusing couple of days. All the words with or and oo sounds have changed from mmmm to mmmba. Lots of words have lost the final "n" so mmdan (toilet) has become mmda, deedan (computer) has become deeda and words like crocodile have changed totally. He can't imitate sounds at all although he hears them correctly- so for example if we try to get him to say "p p p" he'll say "mam mam mam" or something completely irrelevant.

He's watching makaton dave at the moment- loves it- he can't sign though as his dyspraxia seems too bad (don't know what it is but he really can't copy gestures- he makes up his own appoximations which are nothing like the sign- like his langauge I guess!). PECS definitely helps him speak though.

Doe your son use "yes" and "no"? Ds1 never has but I thought it would be useful. I'm introducing it today (pecs cards).

Davros Tue 02-Sep-03 17:30:38

I think "yes" and "no" are very important but, of course, that doesn't mean that's all there is to it. At one time my son had a very clear and functional "no" but that has completely gone and he has a clear and functional "yes"!!! Its something we've worked on over a long time ongoing. I agree with you about the silly sods and their toys. We spend a great deal of our time working out what our son finds reinforcing and it is NOT what another person presumes it is. There's no point turning up with the latest "cool" toy if he just isn't interested. We use something called a "Reinforcer Profile". Its a list of potentially reinforcing items/actions etc with a preference range from "Very" to "Not At All" and it evolves. At the moment its got, for instance, tickles, juice, music etc. A few weeks ago it had squidgy eye, water, cuddles, mint aero! I'm 6 years down the line of running this thing so we're quite advanced and I'm NOT doing it all myself. How the hell do they expect you to make any progress without decent input and ideas and with real help to implement them? I forgot about your son's dyspraxia but he can still enjoy good ol' Dave, I think my son can take it or leave it like many things I wish he'd latch on to. Did you manage to get the S&P book BTW?

Jimjams Tue 02-Sep-03 18:48:16

I suspect I may get a yes and just a shout for no I use it a lot with ds2- found it really helpful that he can say yes so thought I'd try. I do feel as if I'm floundering in the dark though.

haven't bought the book yet- mainly becuase we found the private SALT and I've ordered a pile of stuff recently so it's on hold. I seem to be back to doing everything though so I think I should get it.

The NHS SALT really anoyed me (again) when she visited nursery- she spent some time trying to get him to repsond to animals etc and when he didn't pronounced it would be really hard to work with him as he doesn't have any interests or obsessions!!! Of course she could have asked me- he loves all the stuff I've mentioned before- I;ve found a great game for learning to use a mouse where he has to build washing machines and microwaves- he loves it!! TBH a good reinforcer for him is just praise anyway- a clap when he's doen something and he's more than happy to do it again. BUt of course she didn;t bother asking me about that.

oh well bath time.....

tigermoth Tue 02-Sep-03 19:14:53

can't add anything useful, but sorry that long awaited communication programme was so useless for you and you can't get a proper assessment on the NHS.

Jimjams and Davros, you seem far more clued up than the professionals about ASD speech development(surprise surprise I hear you say).

Do you know of any SALTs out there who have an ASD child of their own? I suppose not - their time would be so tied up working with their own child they wouldn't be working as a SALT in the first place

Davros Tue 02-Sep-03 19:26:40

Maybe you should write a short note for her about what he finds reinforcing. I know its more work but it would make a point too! When we first started out with our default 6 SLT sessions the NHS SLT was doing all that "uh oh!", "bubbles" in a big bright voice and not getting anywhere. Some years later she told me that she was embarrassed about her lack of understanding and ability with ASD and how she had greatly modified her methods. I'd like to think it was in part my doing... (there isn't a logo on the right for a pat on my own back so will do!). I do know of SLTs with more idea of how to interact and communicate with chldren with ASD but based in London. In fact, one ABA consultant who lives very near to me is also a qualified SLT, a good combo IMHO.
Know what you mean about ordering stuff Jimjams, it can go on and on and then half of it doesn't work out.......

Jimjams Tue 02-Sep-03 20:17:51

I have a meeting with her next week- a list of reinforcers would be a good idea. The trouble with the last visit she made to nursery was that she tried to do a formal assessment without building up any sort of relationship with him and without speaking to me at all.

I think another problem is although she is the autism specialist she probably doesn't have much experience with kids like ds1. If she's whizzing around assessing children and leaving communication programmes I can't see that she has that much hands on experience.

Good idea tigermoth, but I know having an ASD kid myself the absolute last thing I wouls want to do as a SALT is work with ASD kids! I think our private one should be quite good. She works at an ASD school- so it should be all fairly ingrained.

Jimjams Tue 02-Sep-03 20:18:45

oh davros I HATE that "uh oh bubbles" stuff!!

Jimjams Tue 02-Sep-03 20:20:09

or that "can you find the dolly" said in a stupid voice- I feel like saying "ask him to find the washing machine or the clock-not the bloody dolly"

Jimjams Thu 04-Sep-03 16:28:30

I've had another thought. As the SALTS don't seem to have the time to assess ds1 I thought I might put together a video of him- showing his speech problems and stuff he can do as well. Good idea? Or do you think that'll ge their backs up even more? I'm fed up of receiving communication programmes which are at the wrong level.....

doormat Thu 04-Sep-03 17:12:20

Jimjams the video idea is excellent. It will only show the professionals what your ds is capable and incapable of. Sometimes they just dont listen and they need to be shown.

Davros Thu 04-Sep-03 20:16:49

I think the video is an excellent idea, it might be a laugh to make too. Its not a bad idea anyway for future reference when wanting to review progress and, as its YOURS, you can choose whether to share it or not. Sometimes showing good progress may not get you what you want at any given time

SueW Thu 04-Sep-03 20:48:22

Really interesting reading all this. Jimjams, so you take along the magazines that you know your son will be interested in so that he can be properly assessed? I remember taking a banana and some bread into our first meeting with her consultant once becasue I knew DD would bring it straight back if she ate it.

Our local paper is advertising for two SALT assistants (admin, 'hands on' and resources help to therapists with a commitment to supporting work with children with communication difficulties) to work part-time at the moment. I'm looking for a part-time job but I'm not sure I'm tempted having read everything on here, even though communication is my baby, in any form

eidsvold Thu 04-Sep-03 20:50:29

Jim jams - I just caught the end of this thread - should be doing lesson prep for school - VIDEO is the way... a contact of mine had a lot of trouble getting consultants to believe her when dealing with her teenage daughter with down's syndrome so she would video whatever it was that needed discussing or was an issue and would take it along.

MABS Thu 04-Sep-03 21:20:39

My HV advised me to make a video of ds to show to the consultant. Good idea on your part i reckon.

Jimjams Thu 11-Sep-03 15:28:07

Rant over.

Met the NHS SALT this morning. She listened to me and ds1's keyworker and is changing the communication programme. She seemed pleased to get the video (alhtough it means she will see how untidy I am). have to say she was very good AND she's coming to see ds1 again in less than two weeks time (falls off chair backwards in surprise).

ThomCat Thu 11-Sep-03 15:46:49

I did the video thing with my therapists - DD just sits and stares at them and they dodn't get to se the 'real her' so I showed them some of the things that she is capable on on my camcorder.

Also re SALT - 'uh 0 oh - bubbles' - rang so true with me. Our SALT "talks" so loudly and everything is 'UH OHHHHHHH' - DD's bottom lip sticks out and she turns to me with arms outstretched to be picked up and carried away. Once she gets this commando crawling sussed properly she'll be out the room when the SALT screeched at her.

Anyway JimJams - glad you're getting somewhere.

fio2 Thu 11-Sep-03 18:34:38

Brill jimjams so being a nag works then

fio2 Thu 11-Sep-03 18:38:17

I have never heard uh - oh bubbles before, lucky me eh?

tamum Fri 12-Sep-03 10:21:43

I have to say I just love the idea of the SALT and all her colleagues looking at jimjams' video and gossiping "did you see that pile of washing?", "wait, there's a good bit coming up here, look at all the mess over in the corner", "does she ever do any dusting?" etc etc
That's great news though, jimjams, glad you're gettig somewhere at last!

Eulalia Fri 12-Sep-03 21:25:16

On the yes and no thing. Before ds became verbal (about 3 months ago) he would never say yes. "No" was confusing as it sometimes meant "no I don't want that" but other times it could mean yes I want that but I want you to ask me in a differenet way so he might say "no I want a biscuit" if asked, which sounds totally confusing unless you know him.

Anyway if that is the standard of SALT then I am not holding my breath. I don't think ds needs it but although he is talking it is still quite stilted and odd with bits of phrases echoed and often repetitions. Anyway good to hear that things are progressing jimjams. Good idea with the video. I just caught ds talking about 'glubs' on video (gloves) - can't work out if he has an physical problem here or if he just doesn't want to pronouce it properly. He has a few other speech diffiuclties too but its early days yet.

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