Communication disorder is NOT a delay!

[Skelosia]

I was recommended to come over here for support etc re: my DS, but thought, no, I'm okay. But, although I am okay, sometimes I get so frustrated with people not understanding that it is a disorder etc that I should come here just to vent.

To bring you up to speed:

My DS who is now 7 was finally diagnosed with a Communication Disorder last year. We always knew he was different. We checked for Autism and Deafness, before it got settled that it was a 'simple' SLI (For those who don't know, that means a Speech and Language Impairment). I think his official term is Auditory Processing Difficulties. He had an ABR, but his auditory nerves are responding effectively. But it is what happens after that is his issue. He hears the words, but he can forget them, or get confused by what is meant, and cannot express himself as he struggles with word finding. It sounds a lot worse than it is. He CAN speak, he CAN process instructions. But not always and not always effectively. It also takes a second or three for him to respond (hence the deafness suspicion). There are things which are found in children with ASD, such as an inability to get that 'Pull your socks up' does not mean literally, that others have a different view to him (he can get very agitated if you find something funny and he doesn't/doesnt get the joke) and a change in routine has to be planned in advance to prepare him. You won't have a conversation with him, unless he initiates it, and he will repeat the same information several times. His life is affected by it, albeit subtle-y(sp?), unless you are a care giver. He can come across as rude, as sometimes he will not reply to you at all.

So as you can see, there is a problem, and it isn't developmental, it is a disorder (why am I justifying myself here? You have all probably been there and got the T-Shirt).

Today, I was meeting up with a friend and got onto the subject of DS. She told me to not worry, that he will grow out of it! FFS Seriously???????????? I told her rather sharply that he will never grow out of it. Trust me, I would much prefer it if he did! All that can be done is SLT and giving him strategies and support to live a relatively normal life. Then I think that this is what all parents do, isn't it? But I know no different. He is so far my only child. I have no idea how I will cope if my new arrival is 'normal'. Life is never dull with a child who brings you a box of nuts when you asked for your boots! I just wish people would understand that it is a real thing, that has real effects.

Since DS has had the diagnosis and been on the SEN register at school, he has improved tenfold. But I still see the problems behind the bravado. He is just coping better now as he is not fighting everyone to be understood any more.

Sorry for the long post, but it gets my goat. Especially as his behaviour could never be put down to poor parenting - except perhaps the rudeness.

Anyway, hello

I ahve discharged ds2 from SALT as he was having 6 monthly assessments/reviews remained on their caseload but not getting nything in the way of intervention or support from them.
It was a waste of my time, theirs and causing ds2 anxiety in attending another appointment just to thicken his file.
He has asd, mild cp & learning difficulties. His language is i'm guessing always will be disordered and/or delayed but I can see he is making progress with maturity.
SALT like most services is in short supply accross the country & its not that I dont care its just for us its a battle I'm not choosing to have at the moment.

Hyper To be perfectly honestly, I have never met a SALT who was paid to work with my child either independently or NHS wise that has the slightest clue how to address his needs.

And b-f is a very common theme on this board if you care to read the archives or just stick around long enough to hear them as they present over and over.

Moondog You are very likely right about the Indi SALTs though I have only ever used them lately for recommendations to fight for provision from the NHS initially, but now to evaluate my own input iyswim. Not to provide therapy themselves.

I thought it was ASD who received the least input?

But Couthy I think the answer is in my reason d.

Where would I go to get a full CELF done, purely to get percentiles so that I know which areas to work with my DS2 on?

And how do I get direct SALT for my 2.3yo DS3? All he seems to get is observation once every 3 months. And how do I find a Makaton course that I can access? I'm even happy to travel as far as London, an hour away by train. I'm desperate!

I think with DS3 it is because he is waiting for ADOS assessment for Autism. The SALT here don't do direct SALT with DC's with Autism as 'it's not clinically effective', or some other guff.

Couthy,

Some ideas to try.

If you ds hasn't seen a SALT in 6 months you can apply to cereba for a grant to cover some therapy.

Also, if you contact Barnados, NAS and other children's charities you might find one of them somewhere running makaton course.

Often now with the whole voluntary/charity partnership, NHS and LA rund them in partnership with them, and this means that they are no longer tied to only provide them for residents and tax payers in that LA/PCT iyswim.

However, it isn't ideal at all, but I believe you can pick up quite a bit of makaton now from YouTube.

But you don't need a CELF for centiles.

VB-Mapp (a bit expensive sorry) is a very comprehensive assessment or all kinds of skills that you could do yourself. It will show you the areas to work on next.

TALC (Elkan) (Test of Abstract Language Comprehension) is also quite good and easy to administer, though the focus is just on language.

TALC

VB-Mapp

Cheaper than a SALT and very informative.

Actually moondog some areas of SLT are life and death such as neo natal feeding and swallow ax in children and adults. If not ax by a specialist SLT any of these groups are at risk of aspiration and pneumonia. Obviously other areas are quality of life. I didn't compare my job to a nurses I compared the fact that both roles were subject to extreme cuts by government. Clearly a nurse is more important in an acute care hospital than an SLT in community.

I don't think we're talking about swallowing here though. We're talking about communication and language development which is a lot more prevelant and yet seemingly dismissed.

Hyperhelpmum I am coming in late to this thread. Very interested in it because at 4yo my dd had the receptive language of a typical 18month old yet the expressive language of a 2;4year old. I agonised for literally a couple of years about the delay/disorder issue because I felt fundamentally her language was disordered. I was right, in the sense that her profile of receptive/expressive language showed atypical development. And nobody could explain to me why my dd2's language regressed during school holidays, when she wasn't using expressive language as much. But now it seems her problems are likely part of an ASD. And I don't much care any more about the delay/disorder thing, because help is at hand in the form of extremely effective private SaLT (who herself uses the word 'specific language difficulties' ? thus bypassing the whole delay/disorder conundrum!) and hopefully we will get an NHS diagnosis of ASD in a year and then the disordered element of her language will be easier for everyone to grasp.

What I really wanted to say, Hyperhelpmum although it seems to have blown over, that I am super-happy you have stuck it out on this thread. Your contributions have been generous and illuminating and I, for one, have heard everything you said loud and clear. You are obviously committed and effective (as well as unbelievably fortunate to work in a service that is still functioning relatively intact, many are just in tatters, like my local service, which is laughable) and it is great to have input from effective SaLTs on this board when there is so much un-met need out there.

I feel for everyone on here. It seems like you have all been majorly let down by the system. I can't say ive ever seen a child and thought I can't do anything to help. Sometimes children are not ready to access input if attention is a big issue or maturity but you can always offer something in terms of changing their environment to help or parental courses such as makaton. I think you have to realise SLT is a therapy discipline and as such we don't have cures or answers to everything. I have never done two bits of a celf unless child cannot attend or has been assessed in last 6 months with other bits. I would give standard scores, percebtiles immediately. It does not take long to score. Not sure why you have had some experiences you have but can see why some of you feel salt is 'as useful as a chocolate teapot' . That is a reflection of your experience, not the reality of what can be achieved with proper intervention.

Thank you handywoman. SLTs go into this wanting to help. I guess there will always be good and bad practitioners in any area but don't right us all off. I for one do anything I can to help and support. I am lucky in one sense that my service prioritizes my areas of interest but there are parents who feel let down in my county too. I think school age children get a raw deal as school are expected to fill the gap we can't meet. They can't of course. Early years are usually prioritised. Global delay not prioritised as its often felt their speech and language is in line with other skills ie they won't make progress as have reached a plateau level. That said we have SLTs in all the special schools in our county. Not enough but they are still there. We ALL feel disheartened and desperate about how little we can do due to the fact we have SO many children to see and not enough of us. What can we do? You tell us! No snipey unrealistic suggestions please. I'm trying to be honest and don't need insults. Let's hear what you think the few of us for all these children should do?

You are absolutely right, Hyperhelpmum. The private SaLT we uses is talented and very skilled. She makes a massive difference to my dd2. Yes it might be a 'therapy discipline' but my dd2's decent academic progress at school literally made possible in key stage 1 by effective SaLT in the year before YR and it's quite literally the best thing we have EVER done for dd2. Local NHS SaLT WAS, by comparison, toe-curling and utterly ineffective.

'What can we do? You tell us! No snipey unrealistic suggestions please. I'm trying to be honest and don't need insults. Let's hear what you think the few of us for all these children should do?'

Don't lie to parents. Give them the information to lobby the LA/Ed department and support them to do so.

Skill-up other professionals to share the love expertise, focusing on TAs especially. Then use these people, have high expectations of them, insist on data and evidence so they can demonstrate their own achievements to you but also their bosses and have the power and importantly the EVIDENCE to justify both their existance and the model. But you do have to train them and supervise as well as respect and praise them and rave about their professionalism and achievements to the class teacher, headteacher etc.

And parent. They can do LOADS if you signpost them. Don't give them a badly photocopied A4 sheet of badly drawn pictures and send them away with that, give them the internet link to where you got them so they can spend the time doing the admin/downloading/photocopying if they are motivated to and make a central website/resource that TAs can access but also Parents. You can then give specific signposting to particular pages with instructions/ideas.

Ahem. SLT are just as important as acute care nurses. actually more so. Their value isn't appreciated because the payoff is delayed and often diluted, so the nurses get all the chocolates.

Xray staff have the same problem:
no-one ever says their mums life was saved
because the technician wasn't happy with the film's quality,
took an extra shot,
and then her boss mentioned the a subtle abnormality,
patient's daughter asked about the xray result,
GP repeated it 8w later, abnormality still there,
had a scan,
had a bunch more tests done by lab staff,
TB diagnosed,
treated successfully by yet another team
and 20 more infections were prevented

Still no chocolates for the xray technician, who has no idea she's saved a lot of people from major illness and maybe death.

For example

I think most areas have a policy not to give centile scores cos 'parents won't understand' and will take them 'out of context'. In our area, that's true. In the neighbouring area, they won't give centiles to the GP or paediatricians either saying feedback showed that 'they don't want all that confusing detail'.

Given every sodding red book in the UK is full of centile charts, it's worrying that HV are so unprofessional and blindly trusting of parents, GPs, practice nurses and paediatricians. Surely it would be better to say 'Johnnys weight is within the normal range for his age' or 'His weight gain is delayed, intervention was unsuccessful, recommend discharge from baby clinic'

When I say in our area that's true I meant it's true that SLT say 'parents won't understand' not it's true that 'parents won't understand*

Tbh, if results aren't shared in full, and there's no resources to act on them anyway, I can't see any point in doing complex, time-consuming and expensive tests.

So hyper

PM moondog, she's a senior SLT with a child who has SN,

and she trains non-SLTs to deliver highly targetted, exceptional-quality, effective, high-intensity therapy at a fraction of the cost of direct provision. Her area has lots to teach the rest of us

What? Why PM moondog?

Couthy - the Makaton course I did was delivered by Cerebra.