Do you eventually get a 'diagnosis' from your SALT?

[MommyUpNorth]

We have a diagnosis already for our ds (a rare genetic condition), however each of the therapists he sees has given us a more precise reason for the things he struggles with (eg PT hypermobile, hypotonia - OT Sensory issues (too many to list!)) But with our SALT, we've never had any actual reason for his delay.

I realise that his 'severe learning disability' sort of covers the fact that he can't speak or understand what we're saying. But I keep reading other posts here where people are talking about specific language processing issues and wondered how you came to find this out? Our DS is now 3yrs 2mo old and has been seeing a SALT since about 5 months old. Do I need to specifically push for this info (I have asked for an assessment of his cognitive age across the board, but no one ever does it... just passes on to someone else).

However, we keep going from one SALT program to another and aren't really achieving very much at all and wondered if part of this is because no one knows what's actually the 'problem' and therefore we can't work on a specific thing to help him??

Sorry this is a bit rambly, but dh & I are meeting with our SALT's supervisor on Monday and I'm sorting out all the things I need to talk about!

I think things are a bit more complicated when there are multiple issues. We are in a similar boat - we got a diagnosis v early on but it doesn't really mean a fat lot, so rare it hasn't any clear prognosis, highly variable etc

with the SALT stuff, I would be focussing on what are the best things you can be doing right now for yr child that will help to lay the foundations for communication. Does he understand cause and effect with simple baby type toys (ie press this button, it makes a sound)? what about attempts at turn taking (you roll a ball, will he attempt to do it back)?

This is the sort of stuff I'm working on with my dd who's a couple of years older than yr ds. Yet we were trying to introduce pecs at the age of 2 when she simply had no comprehension that one action related to another. And didn't care enough about any of the motivators. We tried signing but that was also a problem - further complicated by the fact she lacks the physical co-ordination / fine motor skills to do the signs

We took it right back to the basics (which admittedly I felt at times was v tedious and frustrating) and am noticing some improvements now. It is a v v slow and gradual progress though but I am far more accepting of that now

Thanks for that herjazz. Yes, we've been at the cause & effect stage for a good long time now! He understands very simple ones. Things we are trying at the minute are just getting him to use both hands while playing, more body awareness, etc... He does do turn taking with a ball... rolling it back and forth.

We've been using Objects of Reference for a while now, and formally started it in his nursery in October, but he just doesn't understand it.

Now he's copying actions for songs and will copy signs... BUT with no actual understanding as to what they're for. Everytime we start a new 'system' the SALT tells me that understanding will come later... but the later never comes.

DS basically likes to eat the laminated cards or flap them by his ears! Now they're about to train the nursery staff in Makaton, but I'm just wondering if this is yet another idea that they can say they tried but it isn't going to work. I can totally see why we're going down this route and am happy to do the Makaton (and have been doing it at home for ages) but he simply has no idea what we're doing except a more fun deviation of copying clapping hands!

I'm not even sure if any of this makes sense as it's so hard to explain, but if someone just said 'no' he isn't understanding this, let's do this instead as he 'gets' it, then that would be much more productive for everyone!

no useful advice on the Makaton, but just thought I would post to say that IME you don't tend to get a diagnosis or reason for the language delay from SALT. as herjazz says, the SALT approach is more to plan out what to do next to help the child progress.

he sounds like he's doing well.

I'd be working on more cause / effect stuff as you are doing. Could you get hold of a switch and usb connector for yr pc? We bought one last christmas and some software called Happy Duck. Dd is now getting on great with this - switch is a big single button and when she presses it it colours in the pictures of animals / objects and has noises accompanying it. It feels like we are getting somewhere with this, and it is a move away from baby toys. Kind of going down the lines of objects of reference too as it is introducing visual representations of things

You say he's copying / imitating which is very good. I'd be doing everything I could to encourage / develop this. I think the fact you say this is emerging is a good sign for makaton

I guess you have a song bag already? That's another way of pulling all of these ideas together (objects of reference / signing / singing and repetition / imitation)

You sound like you are doing lots with him in respect to SALT. You should be proud of that. It sounds like he is 'getting' a lot of what yr doing - even if it might seem a bit too slow / unclear to you

I think I felt as though dd would need to talk or have some other means of communication in place around the same time kids typically communicate. She hasn't. Its only now I accept how important these early stages are - this precommunication stuff which really is still communication after all but often overlooked - and that speech is just the tip of the iceberg

However, am also in a different place now where I accept my dd is highly unlikely to speak (not saying this applies at all to yr ds - for one my dd's throat and vocal chords are malformed) I'm hoping now that I can build on her switch skills so that she can use communication aid. But that's quite far of yet as well.

Thanks TotalChaos. That basically answers the question and I can put that out of my mind for the meeting. I was thinking that eventually they would give me more to the why things are how they are rather than just a plan for the future.

Herjazz, thanks again for all of that. Yes, we do a lot at home for him mainly because it just doesn't happen anywhere else. I spend a lot of time making our own 'song bags' and 'story sacs' out of simple things to help with understanding. The way in to ds is through music and noises so we spend ages doing anything that can incorporate that into the activity!

We have a switch for the pc, but he's not very interested in it. Nursery said he likes to play on the pc there with 'big bang' which I've watched him play and he's pounding away on the switch but not even looking at the screen!? Might look at the Happy Duck though as if it does animal noises then he might get excited about it. He's liking the Tap It for the Wii which he taps a box and then fireworks/water/balls bouncing are on the screen. It's taken a while, but he's finally glancing at the tv when he's hitting to see what's happening!

The idea of him doing Makaton at some point would be fab. I've recorded loads of the Something Special shows and he's very interested. We're all doing lots of signs around him which he copies the ones he's able to (fine motor isn't his strongest area).

I think I have already accepted that talking isn't in his near future and quite possibly not at all... I'm not too bothered by that, but some communication back to me that could be understood by anyone other than me would be quite handy!

Since you seem quite knowledgeable about these early stages of communication, could I ask if you've worked on choice making with your dd? It's one of the things that we've been working on for absolutely ages (since the SALT started!) and basically he's not fussed about any choices. Food, toys, sweets, etc just aren't motivating and we've not yet come across a good way of making him choose something. He usually reaches for both, or takes both and throws them. Getting something just doesn't seem very exciting to him!

my dd is exactly the same with choice making Her school have reported that recently she's shown some sign of consistent choice making but its still quite hit and miss. I now recognise there are a few things she is really interested in but this has taken a long time. For aaages given the choice out of two toys she'd never show a preference, or cared for them at all. She'd be just as happy chewing her bib

I think she loses interest really quickly so you have to be in there really quickly with the killer rainmaker!

I must have posted loads about this on here years ago. Every salt would remark how passive she was and I didn't really get why that was significant. Thought she just a bit chilled / nonplussed like her dad!

And there we were holding laminate cards for her to choose from (haha - combining object of reference and choices, neither of which she understood at the time) and getting cross that she would just mouth any / both

She's mouthing stuff a lot less now (still does - but it was like things were only there to mouth) That's been the most notible improvemnt the last few months

I found SALT frustrating for the reasons mentioned. For instance we had a Makaton trained SALT so ds1 was signed to - never mind that at the time he couldn't imitate so wasn't going to pick up any signs.

I find most SALTs these days have limited hands on experience (there are exceptions) and so can't cope with more complex children.

It's frustrating.

Very interesting to hear about another child with a similar choice making pattern! My ds has always had a special interest in taking off his sock and just playing with that, or stuffing random things into his mouth... but those things are not really in our selection of choices!

Passive is the word of choice from most of the people who have assessed ds. I also used to think that this wasn't a bad thing as he tended to be quite happy playing with his sock, rubbing his tongue on the couch or whatever else took his fancy that week. I now realise how frustrating it is when I want him to just pick something!

Mouthing is still a very big part of life here. I can't see that going any time soon. We have a huge amount of things that he is allowed to chew up, and then the rest we try to actually play with. Trouble now is that if he gets fed up with the playing, he bites himself...

Thanks very much for taking the time to answer with so much info. I really appreciate it.

MrsT, you're right. We find the SALT at the CE centre we attend far more knowledgeable about various deviations of the popular methods and how to reach children who don't have the obvious signs of participating. Trouble is that we only get there 3 times a year, but we have used so much from them at home to build up the 'system' we are using. We only have 2 SALTs up by us, so it's not like we're going to be seen by anyone who has had lots of experience with a child like ds.

yes saintly. Also its really tricky to understand what the cognition of a complex child is. A salt doesn't really have enough time to properly assess this so will largly go from what you say / other reports and assessments.

In our case, dd had done a couple of near age appropriate things - like pull something out of her reach towards her and blow rasberries (she did for about a week and then never again) - so when we first saw the salt for 1 to 1 (was about 18mths), she took all this info and then was giving us the activities mentioned that were completely beyond her cognition.

Think sometimes children with sld can learn things out of the normal sequence of development. It wasn't until she started school and they started with the very basic stuff that I realised this

x posted mommyupnorth (well started then got interupted by dd's pump)

yes we had years of mouthing - when she was 1 it was like that's really good, she's exploring.. when she was 4 it was like - er have you tried a dummy. She would also try to bite herself if nothing else was to hand / mouth

It really ramped up last year as well. omg the sock thing - yesssss. dd would be gnawing hers whilst it was still on her foot

we have got a dx of sort from salt ds has verbal and oral dyspraxia

and confirmed by ican which has been the most usefull for idears

Something I find can help is video. Show the professionals who barely see your child what they are doing.

When we first entered the system I was very trusting. I told people what ds1 was doing and assumed I would be believed. A few years later I found out that a SALT I had never met, who had never met ds1 told the school he was about to attend that I was 'well known for being a mother in denial'. . Luckily the school rang the nursery manager to ask her opinion and she told them that was very unfair and I was well aware of ds1's difficulties.

I know exactly where that comment came from and it's from the most useless SALT I have ever had the misfortune to expose my poor child to, but still it was damaging.

However, it did me some good as well as I now just video and take it along and then the professionals say 'wow I didn't know he could do that' and provide appropriate help rather than saying 'oh mother in denial' and providing nothing.,

Oh I said to above useless SALT when ds1 was 3 that I thought he had verbal dyspraxia (on top of everything else) she told me I was imagining him trying to talk (ffs) and refused to believe it. He was eventually diagnosed with verbal dyspraxia on top of everything else aged 7.

Totally agree about the video. I was sitting through CDT meetings listening to nursery staff tell me how 'happy' ds was doing various things, and then they added in 'excited'. When I asked them to explain how he showed this... it was by a smile or odd hand movements and being vocal. I then brought a video of him 'happy' at home which was him in fits of laughter watching his sister do something and no one could believe it was the same child! They had never heard him laugh (and still haven't 6 months on!).

The thing that worries me is that the SALT who recommends things for him to be doing at nursery is the same one who stood at the door one day in shock watching him sort of copying a good bye wave, and then told the staff to slow down when they got him to copy the wind the bobbin up movements too! He did both, and had been doing them for some time and even though she claims to see him every week... she missed this!!

The IEP meeting I was at last month, I described in detail his copying of makaton signs at our CE placement and she basically didn't believe me... wouldn't recommend makaton to go on the IEP and continued to go for OoR (which I wouldn't vote for because both nurseries are doing 2 different things with it and she doesn't help with it). After that meeting and the IEP went through, she rang the CE staff who confirmed everything I said and is now running a makaton training for the nursery staff!?!

Just getting more and more fed up with her attitute and general lack of care for what we're all supposed to be doing... so seeing her boss on Monday to hopefully sort something out.