How much SALT involvement should I be expecting....

[hazeyjane]

ds is 18 months with low tone, swallowing and feeding issues (still on mash and bite+dissolve foods), severe reflux and the possibility that he is aspirating (we have been endlessly waiting for an appointment for a videofluroscopy). He has an over large tongue, and tongue thrust still present, he drools a lot. Speech wise he understands most of what we say, his hearing seems ok (has a test next week), but he has no speech, the only sounds he makes are squeaks and squeals and 'aa aa aa' sounds there is no babbling. He doesn't point but will occasionally reach out for something if he wants it. We have being teaching ourselves Makaton and he does a sort of sign for 'mummy' 'more' and a head slap that we haven't quite interpreted yet!

He goes to sn nursery (with me) twice a week, where he will occasionally see a SALT for 10-15 minutes. She always recommends the same thing, reading simple books, singing and makaton. And she has told us to use chewy tubes (we fail regularly to do this!) and play with his mouth. Ds is very clingy with me, even more so at nursery, so his keyworker is unable to follow any sort of a program with him.

I feel frustrated that all the salt input comes through nursery, which means that he gets intermittent input and they don't see ds in any other state but clinging to me crying.

In the past I have spent hours on the phone trying to find out where ds should be getting his salt from (boundary issues) and who his salt actually is.

I just wondered whether we should be getting more input than this? or if there are other things we should be doing?I feel it is the one area where we seem to be halting, I want to be doing more but am not sure where to start.

Any advice would be welcome!

Hi - Sorry you are being given the run around for access to SALT. We have had some issues ourselves but the long and short of it was that our SALT service has to be accessed in the area we live in, even though our GP and HV are in another NHS area, though only down the road. We live right on a borough border.

I don't know what age they will see this sort of case from but perhaps your paediatrician could give you some advice in this respect? With regard to speech therapy for speech production problems our DD was seen at around 2.5yrs old to be assessed but only started any therapy at 3yrs when they considered she was old enough to follow some instructions. We were however advised to do some of the motor co-ordination/strength building exercises before that - like sucking through straws, blowing ping pong balls through straws, blowing out birthday candles, licking jam/chocolate spread off lips etc. Your DS is obviously a little younger than mine was when we started this, but anything you can do is going to help and hard though it can be do try and get into a routine of spending time specifically every day just doing a little bit. 10 minutes a day means over an hour a week.

I'ld ask about whether the local SALT department run Hanen courses or Elklan courses or anything similar (i.e. SALT run courses to help you help your DS develop his communication).

useful websites:-
www.hanen.org
wwwteachmetotalk.com
www.afasic.org.uk

useful books:-

the parent's guide to speech and language problems by Debbie Feit
It Takes Two To Talk or You Make the Difference (shorted but cheaper) (both are hanen books)

hazeyjane who do you have helping you with the swallowing problems? In our PCT that is a SALT role as well. Can they give some help with exercise that will strengthen the mouth and tongue in preparation.
Our PCT also does not like to give SALT therapy sessions until 3 yrs for the same reasons as beautifulgirls said, but I'm sure they must have games without speech that you can do at home.
Re the food. We are hopefully seeing a food psychologist at GOSH to help with issues around food. Apparently there is a window where if your DC doesn't take to feeding, they could struggle if at any point they get to the physical readiness to eat. My DS3 is now 4.6 yr and still at the puree and dissolvable stage, but although delayed, his speech is now spot on developmentally.

It's crap isn't it? Accessing SALT through the NHS is a nightmare.

There are a mi,lion and one unemployed newly qualified SALTS around at the moment - because there are no jobs being advertised at their grade ( they have to do a sort of post qualification year - that's a bit simplistic but same idea). You might find someone willing to come and work/play with your child really cheaply or even for free just for the experience and the cv. It wouldn't be official SALT but ime a lot of the newly qualified SALTS are fab and full of enthusiasm. We have one who works with us (not in a SALT role) and she has sent herself on so many courses and is actually more up to date and has more hands on experience than many NHS SALTS we have seen in our time. If you are interested you could PM me your area and I could ask around and see whether she knows anyone from her year group looking for some further experience.

Thankyou for your replies - It is difficult with s+l because the paeds talk about ds having significant problems with feeding and say that it is a s+l area, but when i talk to the SALT she said she is limited in what she can advise. His swallowing issues are being looked at by the paeds, and as I say we have been waiting for a videofluroscopy for an age, and I am so confused as to whose sorting it out, that i am not sure who i am supposed to be on the phone badgering about getting it sorted. In some respects we have had so much support and input about ds that it is amazing, but on the other hand it is sometimes overwhelming, and I am not sure who i am supposed to talk to about specific problems.

As far as actual speech goes, I realise that he is probably too young for much official input, but i wish that the input that he had was focused more on the home environment (where he is comfortable!) and on teaching me to help him. When my dd2 saw a SALT for her stammer the whole programme was to help us be in charge of ways to deal with it, it was so helpful.

I have heard of the Hanen stuff on here before, and looked at the books on Amazon, but was put off by the price, however we would be willing to get the books if they would really help for the future - do people think it would be better to get the books, or pay for private SALT? I guess as ds gets older the SALT input may be more forthcoming.

Thankyou so much for all the suggestions. I think so far dh and I have been so concerned about the physical issues that i have told myself not to worry to much about s+l and that it will come in it's own time, but with all the physio and standing frame etc, ds is coming on really well physically. The one area where his tone seems to still be a real issue is with his swallow and upper airways. But I find myself getting increasingly down about the speech, because although I know 18 months isn't that late, I can really see very little progress.

Sorry, I on the other hand talk far too much!!!

I would be tempted to push the paed that you see more on this and if he still believes the slt should be doing more ask him/her to get on their case because the help is not forthcoming. You could also try the PALS service too and see if they can start making some enquiries and badgering people for you too. Good luck, sounds like your son has great proactive parents.

Swallowing definitely a salt area. If the salt he is seeing can't advise then really she should refer to someone who can.

Swallowing is definitely part of the SALT remit, however while all therapists cover the basics during qualification, in order to provide full swallowing assessment and therapy a specific post grad course in dysphagia (chewing and swallowing) is required.

If your SALT is saying there is a limit to what she can suggest I would suspect this means she isn't dysphagia trained (majority of SALTs aren't).

There is no harm in asking for a referral to the SALT swallowing specialist.

The only reason DS3 is at GOSH for his swallowing is that I noticed problems before he was 1 - was dismissed as over anxious - 6 or so months later, referred to paed. After being continuously knocked back for appropriate SALT -then discharged, we got referred from gastroenterology (IBS, gluten and dairy intolerant, possibly un-dx silent reflux) who referred to ENT - who dismissed everything as OK. I asked for a second opinion - was sent to GOSH.
GOSH has been all over him like a rash - so helpful I could hug them all.
Timescale from 1st request to being sent to GOSH - 3 and a half years.
Keep fighting for specialised help. It is out there, and it can help.

Hi hazeyjane, I'm a SLT and have worked with children with physical disabilities who have eating, drinking and swallowing difficulties. In my experience, the videofluoroscopy outpatient process is usually managed and run by hospital based SLT's in collaboration with a consultant radiographer - the results will be looked at by a SLT and they usually make any written recommendations following it (i.e. regarding change in diet or positioning at mealtimes) and pass those on to the child's SLT in the community. I know that these things change depending on area though so it may be managed slightly differently where you are. I'm sure that they would be able to help you/give you advice re: when the videofluoroscopy is likely to be if you called the SLT dept at the hospital where your son attends.

If the SLT that your DS sees in nursery is not dysphagia trained, then, as someone above pointed out, she could seek advice on this from an SLT who has that training and experience in that area - before I was dysphagia trained, I would either have asked for advice if it was something quite straightforward or maybe have done a joint home visit with the other SLT so that they could see the child and give advice to their family re: eating and drinking.

That brings me on to home visits! I work privately now and haven't worked in the NHS for a few years so I know that these things might have changed due to staffing difficulties etc., but children of your DS's age should really have had some home visits as well as being seen at a children's centre/nursery. As you have said, the home environment is so different and children are often more responsive/more settled there, which can make communication strategies and assessment easier and as a result, have more impact on daily life. It sounds like the SLT has given you good advice re: makaton etc. and that you are doing the right things.

A Hanen course would be a good next step - I would ask the SLT if her team runs Hanen courses (even if she herself isn't Hanen trained, there should be people on the SLT team who are) and ask if you could be put on the waiting list for the next 'It Takes Two To Talk' course that is being run in your area. I would really recommend them - I've worked with families with children of the same age and language stage as your son and they found it really helpful. It can really help families to feel that they are providing the best language learning environment for their child at home (even if to reassure you that you are doing the right things already). The books are well worth it too. Very practical.

Phew, that's a bit of an epic post! Hope it all makes sense.