SALT report just in- quite shocked

[PeachyHasAFiggyPudInTheOven]

It confirms hima s ASD, we new that. But we thought his speech was moving onwards- and rapidly so. however, it puts him as less than 1st percentile for both receptive and expressive language () and worse- it actually says

'If X makes only limited progress in the next few weeks all SALT support will be withdrawn'

So- hurry up or eff off?

Surely if heis now using some snetences and has moved forwards as theya dmit, just dumping him is bizarre???????

DH said alst time they spoke to him they said something about 'we can offer therapy atm even if he is ASD' but tbh I thought he misheard?

I know some poeple on ehre don't get SALT for their kids who are non-verbal and always thought that was shite but assumed DS3 would get some guaranteed as he was progressing . privtae isn't an option as I won't be able to work for a year after baby comes.

Didn't relaise he was quite so severe either . Know we've had to give in and buy a car harness and agreeed today to order older child reins but its all a bit- . he's never going to talk properly is he? he is quite bright in so many ways but if you can't talk- what then? They've written off PEC's / sigining in the past but sure if thats what he needs after all?

[deeeja]

At my local child development centre, they not only know my name, they also recognise my voice when I phone.
They know that if they don't talk to me, then I will be holding the line, and/or calling them back expecting answers and/or an appointment.
I have made such a nuisance of myself, something I have never done before!
I have to say, I am shocked at how effective it is. I still can't believe that resources are allocated on the basis of who shouts the loudest and the most often! But ......well the system is crap!
I have managed to get salt and ot for my ds, even though I was told that waiting lists for both are at least a year long.
Phone them, and if that doesn't work go down there, make an appointment to see the manager, ask to see your son's notes, insist on it.
They will soon find space for your ds.
Sorry to hear about your situation!

[mamadadawahwah]

absolutely agree about the shouting. Unfortunately a lot of parents dont shout loud enough so its the ones who know how, who get.

the system has always worked that way cause its corrupt to begin with. Use what you know and work it.

I had a meeting with 7 people involved with my son, after not receiving salt for over 10 months for my boy. They too wanted to write him off.

its shocking how little they care and dont ever think they do. I know 3 salts who have now left to go and work privately because their hands were so tied by the system.

Most of speech therapy however, can be done by you. I cant count the number of ridiculous "suggestions" made by my son's various salts over the last 2 years. We dont care now if we get speech therapy or not, because it has been wholly ineffective. It has been me and my family who have helped my boy to speak and communicate, and of course a lot of hard work from him.

further the appaling arrogance of many salts, particularly the ones who do not have children, much less children on the spectrum, is mind boggling. I suppose its easier to be arrogant, than it is to truly learn how our children communicate. Each one of them is going to learn differently and this takes time and money.

[yurt1]

Actually further to my comments on ttr about the lask of provision and the new thing about the likelihood for recovery becoming part of the assessment- I would agree with MMDDWW. I stopped pushing for SALT bwecause the vast majority of SALTS do not have the faintest idea what to do with a severely autistic child. Our last NHS SALT told us he was unteachable. Well bollocks, he;s not- she just didn't have the skills to teach him. He does get SALT now at school (SLD- not really before then) but the most useful stuff we've done at home. Learned PECS ourselves, used ABA to teach imitation, ABA to then work on oral motor activities. Now teaching letterboard pointing. a SALT would struggle with any one of those things (perhaps not PECS now but at the time they certainly did).

[daisy5678]

Is he statemented? (Sorry, lose track of everyone's dc's statements etc.) If he is, it can be written into the Statement how much he needs - Part 3 is usually accepted by Tribunals and most LEAs as being the right place for it - and then it's guaranteed until the Statement's amended. Otherwise the pushy parent thing sounds like the only option. Poor you - not a nice thing to learn BUT surely the severity warrants the therapy?

[yurt1]

no- the more severe the less likely you are to get therapy. If your condition can be fixed in 6 weeks you're very likely to receive it, if not forget it. DS1 was refused SALT because he couldn't speak (er right that makes sense). That's been the case for years - and is now apparently official (at least it is down here and is the reason that a friend of mine gave up SALT training- she said when she found out likelihood of being 'fixed' was being included in decisions whether to 'treart' (which lets face it is usually nothing more than a communication programme anyway) she decided it wasn't waht she signed up for and left.

We had SALT in parts 2 and 3 of the statement when ds1 was in ms. It was invaluable when his SALT went on maternity leave (meant the LEA had to pay a private SALT to go into school- although we needed to threaten local govt ombudsmen before they did that) otherwise ds1 would have had no SALT at all for the duration of maternity leave.

REally I agree with mmddww. There are lots of really useful things you can learn for ASD (especially severe ASD) that will help far more than SALT. I'm not remotely fussed whether ds1 gets SALT now or not- he has terms when he gets it, terms when he doesn't, but we do more on communication with him after school at home.

Why did they write off PECS/signing? If he can't talk he needs some sort of AAC system. Can he imitate? If so why not learn some signs yourself and introduce them, you don't need a SALT to do that. If he can't imitate you'll need PECS (unless you do signs hand over hand which isn't easy). The only sensible way to learn PECS if you want to use it at home is to get trained yourself. oh one other time when signing isn't always that successful (has been the case for us) is when there's a significant degree of dyspraxia in which case PECS will be better.

Personally I now see PECS as being most useful in children who are going to develop speech & I think that's what it was designed for. It sounds as if he is going to get quite good at talking so I'd really look into PECS in your situation. I wouldn't do it via SALTS though - just do it yourself, you'll get a lot further a lot quicker and with far less frustration. The caudwell trust/local rotary clubs etc may well fund the 2 day PECS workshop. That's all you need and they're run regularly. I know you have number 4 on the way but would be worth trying to book onto one even if only one of you can go.

[PeachyHasAFiggyPudInTheOven]

Thanks all- he does have a statement it says (how almost great a cop out is this?) 'he is entitled tor eceive SALT at a level determined by the SALT team at the time . That was after pushing for salt inclusion.

His imitation is stunning- he sings (and very well), just intonates rather than uses the lyrics iyswim. But I do think his speech will develop fairly well- I know its unlikely to be at the same level as the others but It's aprtly there already after all. So maybe PEC's is the way to go- will look inbot that ASAP, DH is willing to do the course if I can't. He's talking about learning ABA himself as well after reading a few articles in the paper about it- was he interested when I told him? LOL

I am going to kick up though, composing a ltter in my head overnight, I only have until january 4th (they posted on christmas Eve- how wonderful) to complain.

Re-reading it it seems our SALT's have al left now and the lady who wrote the report absed it on his file rather than meeting him, there's a lot of stuff his SALT promised like inter school stuff missing, and also the parent clases we were promised have been replaced by a photocopied sheet of vowel sounds.

I have to take DS3 shopping for school uniform tomorrow, but when school see this I reckon he gets 6 weeks there before transfer! I hope they'll take him at SN school in the other uniform, i'm not buying twice

[mamadadawahwah]

gosh its so frustrating reading this thread. Our boy was forgotten about because he wasnt making progress. In the 10 months they "forgot" about him, he developed thousands of words, but still no interest from the SLT until i called a meeting. They praised how well he was doing from the report i submitted (they didnt take the time to see him personally to figure it out)

So now, because he has words they have started up the slt again.

but for what? the latest idea for him from the new slt is to get him to sit with a sand timer at an activity. Right, my son cant sit for more than 30 seconds so they are going to make him hate learning by having to sit until the blasted timer is over? what value of the task will he learn from a timer? Its like the worst ABA DTT, he will just work to get away from it.

another idea was from the SLT is to do an activity, then give him a "wait" card. So, he gets interested in an activity, then they want to deliberately mess him up by giving him a wait card and make him wait?

for what ? COMPLIANCE. Their only concern is that he learns to sit, stand up, line up, put his coat on or off, etc. Its not about learning to communicate, its about learning what THEY want him to do.

I cant wait till our next meeting with these idiots. I am going to tell them to shove their salt. we go private now. Its expensive but we only go once a month.

A great book is the ABBLS and its workbook companion.

I so wish parents in my area could address these salts and their ridiculous ideas. But as it stands parents are generally trusting that salts know what they are doing and maybe parents dont know any better, or are so inundated with the day to running of their families.

I dont want my child to be another statistic of lousy, uncommitted and dispassionate services offered by salts or anyone else for that matter.

really, to help your child its UP TO YOU. And you cannot do that, unless you get informed. Ask questions about the science behind what these people are doing. Ask them for the outcomes of what they have done, with other children. Ask them how they determine an approach for your child and what they expect will happen, when it will happen and how you will recognise it will happen. Otherwise, its all smoke and mirrors from these people and they will simply "dazzle" you with their gobbledeegook, if you let them.

my two cents, from a mum like so many others, who has been there and done that.

I always take my cue from parents, cause parents know best.

[daisy5678]

I would go to SENDIST - I've spent probably months of my life reading Tribunal decisions and there are many many cases like your son with severe S&L needs and the Tribunal normally orders the LEAs to provide about an hour a week PLUS school having to do their own in-school S&L work. So I would appeal against that wording of the statement as I think getting it legally guaranteed sounds like the only way you're going to be sure of getting it.

Here's the link for searching previous Tribunal decisions www.sendist.gov.uk/public/search_decisions.aspx and it may be that appealing with put a rocket up someone's backside and realise that they need to be providing what your son needs.

[PeachyHasAFiggyPudInTheOven]

OK thanks, will look at that )school insisting on a statement review after 6 weeks so will wait for that to see what happens).

TBH I think the minute the school sees the report they'll be on phone to ASD unit (the unit under threat of closure though) but it's bollocks (sorry) that he doesn't understand that much- he does. And his language might need me to interpret but its better than they reckon.

[aquariusmum]

I agree with all on here - the system is a joke! I also found that SALTs had absolutely no idea how to teach autistic kids. They were,fine for my NF DD when she couldn't say "d" and "g" but made absolutely no impact in the 8 months I paid for an NHS SALT to do an hour a week with my DS (the waiting list for free SALT was 3 years). Portage was better, and that was free. I think they claim to know about ASD, but what they actually know about is NF kids, and maybe they had some success with a HF ASD kid, or Aspergers, so they bung it on their CV. Let's all keep shouting!!

[aquariusmum]

I agree with all on here - the system is a joke! I also found that SALTs had absolutely no idea how to teach autistic kids. They were,fine for my NF DD when she couldn't say "d" and "g" but made absolutely no impact in the 8 months I paid for an NHS SALT to do an hour a week with my DS (the waiting list for free SALT was 3 years). Portage was better, and that was free. I think they claim to know about ASD, but what they actually know about is NF kids, and maybe they had some success with a HF ASD kid, or Aspergers, so they bung it on their CV. Let's all keep shouting!!

[lorisparkle]

I'm horrified with what the SALT report says. If the stuff about ASD / progress was true then none of the children I work with would get any SALT. I agree that you really need to push for anything (a sad state of affairs when life is not simple for families with children with SN anyway and then they have to work twice as hard to get any decent support). I'm not saying that PECS is a miracle cure or that it works for all but I have seen children make good progress with it even when other people have written it off for them. I know SN schools are not the answer for all but you may find that with the right kind of support / SALT / teaching etc in a SN school then your DS will make the progress needed to move back into mainstream successfully or will flourish in that environment.

Good luck with everything

[sphil]

Peachy - have you tried getting him to fill in a word at the end of the line of a song? I only ask because this is the very first 'talking' that DS2 did - and at the beginning it was only the initial sound of the word. It might work if he loves music and singing. It sounds to me as if he's getting on very well with language - DS2 must be into minus figures if your DS3 is below the first centile!

Other than that, I would agree with using PECS - that kickstarted DS2's ability to request verbally. And now we just give him as many opportunites as possible during the day to request stuff he wants. Ie. we rarely give him anything without making him ask for it. I really go along with the ABA/VB line that requesting is the foundation of speech.
Though we haven't really moved on from that yet!

[yurt1]

Peachy I have a video link of ds1 being taught signs via ABA that I can send to you if you want.

DS1 does that as well sphil (fills in the blanks) but everything is 'an'. He has the intonation as well Peachy. Can say whole sentence intonation only. He was shouting his head off earlier and I shouted 'ds1 what's the matter' and he replied "ay yee yee an an'. Useful! (someone had stopped their car in the street and opened their car doo- a mortal sin don't you know).

[PeachyHasAFiggyPudInTheOven]

I'd appreciate that being e-mailed Yurt, thanks.

I think a lot of what DS3 says is intonation but I can trnaslate much now- saying that 9and this was amazing) earlier he found a new flannel I had bought (he's only used to sponges) and brought it over saying quite clearly 'baby towel' before popping on my stomach LOL! - Far more going on there than the professionals give him credit for!

[yurt1]

I'm sure- that's what this PhD is about partly- competence in the real world vs 'incompetence' (and therefore no access to things like SALT) in testing situations.

Will email later - I have 2 addresses for you, is either OK?

[PeachyHasAFiggyPudInTheOven]

Don'yt use the hotmail one if you have that- far too lazy to remember to check it! The peachesand one works though

[moondog]

This is such depressing reading.
As many of you know,I am a salt working mostly with non verbal adults and children.
It is a fucking disgrace peachy that you are basically being told to eff off, it really is.

The problem is indeed with the SALT department and not your child ('baby towel' is incredibly creative and clever btw).A lot of very good points here. It's truel that many salts have no idea what to do with people with complex needs and it is ridiculous as there are tonnes and tonnes of useful things to work with-visual aids,PECS,signing, musical interaction, ABA.

I suggest (if you have the strength0 that you lodge a formal complaint with the Health Trust and/or approach the Children's Commision.

MN is so uselful for linking parents up and helping them learn what options there are for their children, although in an ideal world, a dedicated salt team would help you do that.

Honestly, I am so ashamed of my profession sometimes and so sorry that you have been let down. This has depressed me beyond belief.

[sphil]

Moondog - I think I speak for many of us on here when I say that if we had you for a SALT then we'd have no need of threads like this.

[moondog]

Very kind of yuo to say so Sphil.
It's not rocket science though, it really isn't.
And what these idiots service providers can't get into their thick heads, is that by sorting communication issues out at an early age,they save themselves millions as if a person with SN isn't able to express themselves properly, the chances of them developing challenging behaviour are extremely high.

And, challenging behaviour costs a lot of money, as I see on a daily basis.

It makes me sooooooooo bloody angry.

Still, in the depths of my despair, I have to remind myself that good things are happening. in my area, noone had heard of PECS six years ago and now it is used everywhere.Not always accurately ( I emphasise like Yurt the importance of the 2 day course) but it is there.

[moondog]

Forgot to mention objects of reference which are brilliant.Adam Ockelford has used them a lot with deaf/blind children but i have also found them invaluable for people with PMLD. (Adam also works with people with autism and is at present the guardian of an autistic savant (young brilliant boy pianist).

He is mentioned in this link.

I have heard him speak and he is brilliant-inspiring in a very lowkey and matter of fact way.

[PeachyHasAFiggyPudInTheOven]

Thanks MD

I have e-mailed the NAS to ask for details of where to look for PECs courses, we are definitely going to take that route. I have been making up signs for things like eatg etc which seem to help him understand my meaning, so I do think it will help to have a reinforcement strategy in palce- and I think PECs is the way to go.

I agree about the frustration; he's started hitting recently which is a shame as he's naturally sweet natured. And i think its part of ds1's issues as well- he's so verballya dvanced to listen to (semantic pragmatic), but when you delve deper he understands so little of the processes behind what he says- cause and effect, reasoning etc. I'm going toa sk the ASD chap at BIBIC in a fortnight for tips with ds1, he has some way out but remarkably ds1-suitable ideas.

[moondog]

I'll link you up for PECS training now...

[moondog]

All of these are suitable.
Have a look around the site.
Terrific terrific people. I endorse them and their methods 100%.

Here