Advice about speech therapy please

[LizLocket]

DS, 4yrs old with HFA has a receptive and expressive speech delay. He's been assessed as having a 12mths delay but I don't think this is accurate as his speech development in disordered and some areas are more delayed than others. I think his receptive issues give him greater problems, he has 2 keywords understanding (told he should have 4 keywords at his age) and issues with processing and retaining information. Not understanding properly seems to cause him a lot of frustration and affects his learning and ability to socialise. His spoken speech is fairly typical of ASD, immature language and disordered sentence structure, pronoun reversal and fairly one sided conversations. Although his speech continues to improve he's never caught up and I would say the rate if improval is slowing down whilst his communication delay is causing more difficulties over time

The amount of speech therapy we've had has always been a concern for me but I don't know if I'm being a pushy mum and have unrealistic expectations of how much SALT is effective and what it can achieve. His ST is a lovely lady, gets on well with DS and was very supportive when we were having difficulty with other professionals over an ASD diagnosis. However she's not an ASD-specialist ST. She seems more keen on doing assessments with DS or observing him in nursery rather than doing actual therapy. We had a block of 4 session therapy over last summer, a review before Christmas and 2 further sessions after Christmas. She is seeing us again for a further review in 3 weeks time. This doesn't seem like a lot of speech therapy input really, what does everyone else get? I know the SALT service her is chronically underfunded and short staffed and wonder how much of a factor that is though when I directly challenged the ST about that last time she said DS was getting the amount of ST based upon his needs not based upon her workload

My other concern is the fact she's a general ST not with any particular training in ASD. She just seems to want to focus on doing work on DSs processing problems which I agree need working on but there are other aspects of his speech development too which need help. For the last 18mths I'd been asking her about things I could do at home and just kept getting told to talk to him and comment on what he does. She never mentioned the More Than Words book, I discovered it from another website and I've found it immenslet helpful. However I feel quite angry because I wish I'd known about it a year earlier as it would ahve realy helped then and when I mentioned the book to her last time and the availability of any related resources I got a blank expression back and she didn't seem to have heard of it let alone read it!!!! That shocked me and made me wonder what other things she's not doing that she ought to. After reading the post below about verbal dyspraxia wonder if DS has some of that too but she's never mentioned it

We're doing Earlybird currently and the ASD trained ST is helping run the course. I'm going to speak to her about our concerns and see if she has any suggestions. Find it all awkward as in effect I will be criticising her colleague which never tends to go down well and I do like our ST and think she's fine within her limits. I just don't feel DS is getting the degree of input he ought to. I'd love the Earlybird ST to work with DS but know that would be highly unlikely as she works in a different locality in the city and tends to see the ASDs which much severe speech problems.

For the last year we have had weekly visits from a specialist autism preschool teacher who has been doing play based communication work with DS so SALT hasn't been a massive priority becasue of this. However once he starts school there will no longer be an ASD specialist as closely involved and I feel the need for proper ST will be greater.

I've looked into private ST but am unsure. None of the local ones seem particularly specialised in ASD. Also think it could be confusing for DS having two STs. The Private ones won't have input into school whereas his NHS one will, is well known in the school and works closely with the school SENCo and good at liasing with the other professionals involved in DS's care. Am also a bit worried about offending her too if we go privately though obviously DSs needs come first and foremost

Sorry for the ramble. It's something that has been worrying me increasingly and I don't know what to do. I'd love to hear about others experiences of SALT and ASD. How much ST you get? Is the ST trianed in ASD? What sort of activities do you do in ST? Any experiences of working with a private ST? Any suggestions for things we can do at home to help DS?

Many thanks for reading this ramble

Liz x

Hi.
Our SALT is based at our CDC and so far as I know is ASD specialised.
Elijah normally has weekly sessions, at home, whichlast about an hour, and she leaves us an activity to do every day as part of iour structured play, to reinforce whats been done from week to week, she introduced us to the hanen method, and from there I bought 'more then words' [it is a godsend!] she has taught me all the makaton I know! and has given a lot of advise on PECS...

Honestly I think it was a fluke that we got SUCH a good SALT, theres someone I know who'ss on see's one of the ohers basedat cdc and she won't do home visits, refused ot introduce makton or pecs, because teh bioy has demonstrted understanding and vocalises via echolia..

does your son have a statement of SN/ you can requets SALT on those

take care

emma x

"he seems more keen on doing assessments with DS or observing him in nursery rather than doing actual therapy."

Welcome to NHS speech therapy- if you criticise it you will be given a pile of justifications (which are crap basically). TBH you sound like you are getting quite a bit. For comparison until ds1 started a special school aged 5 1/2 we had only received the look and observe yoe therapy and had had an average of 4 sessions a year - for a non-verbal child with suspected verbal dyspraxia.

ASD trained NHS therapists aren't always the bees knees because of this problem of not having enough hands on experience. Ours was very nice, but fairly useless tbh, ds1 didn't really play ball and she had no ideas what to suggest to get round that.

We ended up emplying a private ASD specialist SALT. She was fab, came weekly and used to liase with his NHS therapist. She also did go into school (especially when the NHS therapist went on maternity leave and no cover was provided- the LEA paid).

To give you an illusatration of the difference. She went into school to see ds1 when his NHS therapist was there. DS1 grinned at her, got up and went and sat on her lap and gave her a cuddle. The NHS therapist was stunned as she didn't even know ds1 was capable of that (she was banging on about it for weeks). In fact its not even particualrly strange behaviuor for ds1 if he has a relationship with someone. The NHS therapist was fine with us getting a private SALT in0- she was as frustrated with the system as anyone.

Our SALT did a lot of work on receptive language, helping us set up PECS and using it for requesting and commenting. She also worked on building up ds1's ability to follow instructions etc.

I hate say it but it doesn't sound that bad to me.
My 4 year old has no dx other than complex/severe language difficulties. He is very disordered but in langauge is about two to two and a half years behind. In the two years that he has been in the system we have had two six week blocks of therapy. We have paid for private SALT and for her to train pre school staff as he has been on the waiting list for 1:1 support since he started but their has always been childrn with greater need so therefore he has had no support.
We are currently going through statutory assessment but I really feel he has been let down by the system.

My DS is also 4 and has an ASD. Our story is pretty much the same as Maddie's, except that DS has been in the system for 1 year and has so far received 1 block of 6 group sessions.

I have no idea whether the SALT's (he's seen 4 different one's during asmt's, therapy and reviews) are ASD trained but on the whole they've all been very good. I understand that other people have had different experiences so we must have been lucky. My gripe is that although our area (SW London) is one of the best area's for getting NHS SALT, DS has been let down because the therapy has not been suitable for him and there hasn't been enough of it.

We are going to look into private SALT as I think DS would benefit more from one to one therapy, but I can't see him getting this for a very long time on the NHS if at all. The most frustrating thing for me is the children who are offered therapy and who's parents fail to bring them to the sessions. We were told at the 'Parent Information' session that currently 25% of therapy time is wasted on no-shows

We do a lot of amateur SALT stuff at home, but you're probably already doing this. Repeating back correctly, commentating on his activity, clapping out sounds, colour and size sorting, etc.

DS2 has had two NHS SALT sessions since last summer! When the SALT was put under pressure at our Family Services meeting she agreed that he should be seen three monthly rather than six monthly, which is apparently the norm for pre-school non-verbal children with ASD. The BIBIC SALT recommended weekly sessions. She brought up verbal dyspraxia within two minutes of us waking in the door - our NHS SALT has never mentioned it. I could go on...
We are intending to use our DLA/Carers Allowance to fund a private specialist SLT, but it's proved very difficult as they've all got full case loads round here.

Walking in the door - obviously my lack of sleep is getting to me...(see omega oils thread)

I don't know if our SALT is specifically trained in ASD but she's very good IMHO. Ds1 (5.5yrs) used to see her once a month until he started school. We were also given activities and resources to use inbetween sessions to reinforce whichever area ds1 was working on. Ds2 (3yrs) now sees her under a similar arrangement.

Sessions are at the local health centre and last for about 45 minutes. The SALT starts off by doing a very quick assessment to see whereabouts ds2 is up to. He (like his brother did) tends to stay at the same level for a while but then out of nowhere makes sudden progress, so the SALT has to do a quick assessment to find out if he's ready to move on.

After that the SALT goes along with ds2's particular mood. If he's happy to look at cards she will do that with him. If he becomes obsessive about a particular toy or object in her room she will incorporate it into the session. At the same time she also manages to write individual notes about the phrases and structure ds2 uses. At the end she goes through her findings and gives me materials to take home and/or suggestions of games to try out with ds2.

I also find it very useful that she is somehow able to 'see through' ds2's coping mechanisms.
She is an NHS SALT.

Coppertop - that sounds ideal. Whereabouts are you, if you don't mind me asking?

I'm in Cambridgeshire. :)

Thanks everyone :)

I know SALT is in dire straits nationally and don't expect our service to be any different but the thought that the lack of proper input coiuld have a long term effect on DS really alarms me. Especially as he's approaching five yrs old and everything I read says the first five years are vital in terms of catching up.

We had a paed appt yesterday and he brought up the issue of SALT. He wasn't impressed either and thinks DS should have some input at least with one of the two ASD specialist ST in our area. He's writing a lterr and phoning someone up so am keeping fingers crossed we'llget somewhere. I expect though that even the ASD-specialist ones will be working under the same constraints but at least if we can get some better guidane it will be a start.

Am also going to look into private ST again maybe for when the sessions with our Early Years teacher finish. Jimjams where did you find your ST? Was it from the ASLTIP directory?

Coppertop, your ST sounds wonderful :) One of the issues we have during the sessions is that the ST sets the agenda and DS doesn't always engage. She has hinted that because of this it might not be worth pursuing ST and maybe just wait and see as his speech development is progressing !!!!! Our Early Yrs teacher takes an approach very much like your SALT bringing toys and games she knows he will find interesting and he tends to cooperate with her well. Am so sad she will not be involved for much longer :(

Liz x

Proper SLT is not just 1:1 SLT. There's certainly a place for 1:1 work, but it's not always the best solution.

Unfortunately, unless a child is being seen 1:1, poeple assume they are not receiving our help, which can be very frustrating when we are working in a different way.

I spent 3 hours writing a report yesterday morning about a child who's mother is insisting he is not receiving my support, yet I am constantly writing and updating programmes which are delivered effectively by his learning support assistant. I feel quite cross that I had to spend three hours writing a report, TBH, but I actually had to spell out what type of support is appropriate.

Of course private SLTs see children on an individual basis! At £60 per hour, they would be fools not to, but I'm yet to be convinced that it's always the most appropriate thing. It's such an unnatural environment to learn language.

And yes, the NHS therapy services are stretched. I see about forty children over four different counties on three days a week. There's no way they can all be seen individually, and it took four years to recruit someone to my post, so there's not much chance of finding someone to help me. Not sure what the answer is really, though I am also considering private work now, as sick and tired of NHS problems! So perhaps before too long everyone will be paying anyway!

Good luck with whatever you do, hope it works out for you and you get the help you need

Mogwai

I have no idea what kind of therapy is most appropriate for other children but I do know that my DS got very little from group therapy. The other children were far more advanced than him and could actually speak in sentances - and this was in one of the most basic groups. The kids were impatient with DS as he didn't understand the group games, never knew when it was his turn and took so long to do what he was asked. It was really painful for me to watch.

At his last review his therapist admitted that she struggles to fit DS into any groups as she doesn't have any other children waiting for therapy with similar needs.

I don't know what the solution is either - I'm not sure there is one. BTW do you know why the NHS has such a shortage of SALT's? Are they all working privately or is SALT generally an unappealing career?

Thanks Mogwai, that's interesting.

I think like Lillypond my son wouldn't do well in group speech therapy due to his social difficulties. I believe the ST will have some input into what his LSA does when he's at school though she has not really suggested anything to the staff at his private nursery where he has 3 hours funded support a day. The ST seem to do a lot of 'consultation work' but there comes a point too where someone has to actually see the child! My concerns haven't just been about the quantity but also the quality of the speech therapy we've received. I was amazed she hadn't seemed to have heard of More Than Words and had never suggested any of those approaches for us to try at home when I've previously asked her about what we can do to help.

I don't mean my post to be bashing STs, I do like our ST and understand the local constraints the SALT service is under. One of my H's colleagues gave up ST as she was so disgusted with the local provision and the way they were expecting her to work. Just don't want my son to suffer as a result as it will affect him for the rest of his life.

Lx

Yep ASLTIP- the thing that made her good was her experience- she was also a SALT in an ASD specialist school so she had years of experience of actually working with children with ASDs and wasn't at all fazed when the usual methods didn't work with my son. (The NHS therapist told my son's nursery she couldn't leave a communication programme because there was "nothing" my son was interested in- the private SALT went off and cut out pictures of clothes, made a pretend washing machine and was able to practice one key word then eventually 2 key word phrases).

I think most parents have made it perfectly clear on here that except in rare cases where its deserved (pre-school specialist SALT in our area=crap) they have no truck with individual NHS therapists- but they do with the system. I think most of us can sympathise that NHS therapists are working in a terrible system and its not their fault that they have so little hands on experience- but it is our children who suffer. And they only have one chance. Ds1's first therapist assigned to him after dx was lovely, but told us she was completey out of her depth. It wasn't her fault, but she was about the 4th therapist we'd seen who had absolutely no idea how to work with ds1 and couldn;t actually make any suggestions. One more bloody feed the monster suggestion to a child who doesn't know what a monster is or another "ooh look at the bubbles" and I would have exploded. We took the sensible option and employed someone who knew what she was doing. She moved from "pointless" unnatural games onto real life situations sich as beinggiven tasks to do. Aged just short of 7 I can now give ds1 something in the kitchen and tell him to take it to ds2's room, or his room, or the living room and he can do that. That is a huge achievment for him. He had to learn that language in a structured 1:1 setting though.

Ds1's school have just started pairing ds1 with another child for SALT- but that is with a SALT and assistant, and highly structured. Anything else would be ajoke as he wouldn't stay sitting down and requires 1:1 to even begin to stay on task.

Liz Locket- is your SALT a general community SALT- I'd be sightly concerned if a SALT working with my son hadn't heard of more than words as well. If I had any choice I wouldn't want someone who hasn't heard of more than words working with my child as it would suggest minimal training in a specialised area.

I agree, there can be an issue with quality of SLT not just quantity. I little bit of help from a good SLT can be excellent, but I agree with Jimjams sentiments that a generalist SLT is not really appropriate after a diagnosis of ASD has been made.

The other issues are more complex, but if you're interested...

Re the "More Than Words" book. This is published by the Canadian Hanen association and accompanies their Hanen course for SLTs, which I've attended. This course is very expensive to attend and can only be attended by qualified SLTs. To give you an idea, the (residential) course costs about £300 and the last department I worked in had a training budget of £30 per head per annum!

Most trusts will not fund their SLTs to go on the Hanen course unless they need to run Hanen courses as part of their job. In practice, a generalist SLT working in a community clinic will not need to be Hanen trained and may not know that the "More Than Words" book exists, particularly if she hasn't been qualified very long (it's not something that's covered on degree courses). So that might explain why the SLT you mentioned didn't know about the book.

Re recruitment/retention of staff. One of the main problems is that not enough training places exist on the degree courses currently running. Another issue is that we are a small profession and we are overwhelmingly female, so we have babies and go part-time afterwards (although many take a few years out altogether).

Then there are the other issues that get us down...far too many meetings paperwork, being spread too thinly and having unrealistic caseloads. We really, genuinely do our best, but it never seems good enough for the parents, who constantly misunderstand what we are doing and think we are "doing nothing" for their children - aargh! soul destroying.

If I can be TOTALLY honest....(this won't be popular), the main barrier to my effectiveness is totally crap staff in schools. Some of the teachers are excellent but some of them are truly abysmal, and the support staff recruited by schools are often woefully underqualified (in every sense) to help special needs children.

Working like this can be really soul destroying and our attention naturally turns to working privately, where we can pick and choose our caseloads, charge our own fees and devote oodles of time to each child (and get lots of praise from the parents, who would think we were truly wonderful). It's tempting, as you can imagine

The pay's not bad really!

Completely agree with you about crap staff in schools (although not their fault considering the pay an LSA receives), but that;s why I have such a bee in my bonnet about communication programmes. Children like my son are incredibly difficult to provide effective therapy for- really really hard- that';s why it needs to be delivered by someone qualified AND experienced.

Ha! Bet you never thought I'd agree with you on a SALT thread :o

I've employed 3 private SALTs- 2 were good, 1 was wonderful :o

lol Jimjams

It's never acknowledged though. Even some of my colleagues don't seem to be able to see it, they have been well and truly hoodwinked.

It does seem to affect some groups of children more than others, and yes, ASD kids seem to get a raw deal because the whole issue is so complicated (as you and I understand fully) that you really need to take lots of time to understand ASD children, and I'm not sure many teachers/LSAs have the motivation (or indeed, the time) to really devote any thought to what ASD entails.

School programmes work very well in some schools, but badly in others. Where children are statemented to receive extra help, including SLT programmes delivered by an LSA, I usually find that the programmes are not done/ not done properly. In some cases, school staff have totally lost the child's programme and used another child's programme instead, because they don't want to ring me up and admit they've lost the original

Now THIS subject is my "bee in bonnet" !

(went into a mainstream primary last week to find that a child's daily SLT programme was not being carried out because the SENCO told the LSA not to withdraw the child as it looks bad when OFSTED visit..................)

The example I could list would raise a few eyebrows

When ds1 was in mainstream the school tried to draw up an IEP incorporating PECS. oh dear. I had to ring the SALT and say "um, this is what the IEP says, can you sort it out for me", and she said something along the lines of "oh dear, well I can see what they are trying to do, but yes I'd better go in there asap and sort that out".

They just don't have the training, or resources or skills to cope with some children in mainstream. They think that PECS = visual timetables.

I really can't fault the SALT my son recieves now. Hands on sessions with SALT + assistant, at least weekly. PECS used throughout the day at school- he communicates really well with PECS now and will spontaneously exchange left right and centre. And he's learning to read via PECS (pictures being faded).

Sounds fab

I used PECS with a lovely 15 year old boy in a special school a few years ago. He really took to it, but the school objected to him missing french so he didn't get 1:1 again after that (I was only there one day a week).

French!