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

But Hyper, you asked me a question about how things could work better, and I responded with a whole list of things.

But you haven't even commented on that.

By the way, I am really pleased that you are making a difference to some children. However, I would also be interested to know if regularly assess how much of a difference you are making, and whether or not you could make MORE of a difference.

The SALTs working with my ds reported all the time that he was achieving things, and to be fair I think they believed it. The trouble is he could either already do those things or I had taught them to him myself.

Sorry star lots of responses and I'm only one person, out of time! currently looking after two kids and puking every few hours with hypermesis. Will take a look in a minute but I was asking to hear others ideas not for me to comment, discuss, provide suggestions. I'm not really in position to debate this much longer but it has been interesting if a little depressing to hear your experiences.

Well I'm sorry to hear about the sickness.

If I can make one sweeping generalisations about SALTs it is that they tend to be an extremely fertile profession

(I have 3 kids btw and I love it).

Yes I review child's progress every single time I see them in order to plan next session. That's how it works as far as I know. Why waste time working on a skill a child already has? Yes I see that they are progressing because then we move on to next target/ strategies to achieve it. Not sure what you mean by how much of a difference? Surely any positive change is enough to be worth it? Sorry gotta go but will catch up when I can!

V true! It's my third! Oh god another slating as I begin to show and am abused for being about to go on mat leave! How dare I have a life! ;)

'I am not convinced SALT works as a concept or produces the returns people expect.'

I'm pretty much with you there Zzzz. I think the knowledge that an s/lt has about how language works is exceptionally useful and no one else comes close to really understanding that (eg receptive versus expressive, components and how they fit together-prosody, pragmatics, syntax, semantics, morphology, the list goes on and on and they are all, to steal an ELKLAN metaphor, beads on a string. Some parents or teachers only see one bead. We see them all and how they relate to each other.

I'm sick of hearing s/lts moan about how little time/money/resources/understanding/awareness (God how I loathe the word 'awareness') there is. There's more than enough! If you fell your model would only really work within another Platonic ideal of a system, it's pointless. Change the way you work to fit the restrictions within which you operate.

I haven't done 1:1 work with a child for years. I'd love to but my caseload doesn't allow it. Instead of bemoaning the fact, I have to ensure those that work with the child have an explicit evidence based data driven 'programme' (hate that word too but I thin k we understand what is meant by it) to follow, one that either demonstrates progress or doesn't.
If progress is made, they carry on with minimal interference form me.
If it isn't, I come back and we tweak and/or redesign.

The clinic based model is on its w ay out than God, and can no longer be justified in light of horrific level of DNAs whereby s/lts left twiddling their thumbs because the middle class kid with a slight language delay or backing issues double booked with Beavers

.

I think hyper almost certainly does make a big difference to the actual S&L abilities of the dc she works with. I bet there are commonly used interventions which she has been taught, and has discarded because it's obvious they are hopeless.

And I would lay bets she is unconsciously setting them smart targets, and evaluating whether they are met. I wouldn't be surprised if she has an internal frequency counter, with a reasonably accurate estimate of the dc's fluency in what she is teaching them. To me, most excellent practitioners do this, whether they recognise it or not.

I'm trying to tempt her into making these mindsets explicit

And I'm a bit worried she thinks that her service might be safer than others, and that SLT in general can maximise its value without carefully scrutinising itself (and proving that value to those holding the purse strings).

Some SLT offered is rubbish, some is good but irrelevant, and some is inaccessible. If tge powers that be want to dump a service, they tend not to address the underlying factors leading to high DNA rates.
Hyper, do you think the parents are getting the appointment notifications?

I've posted this before and I'll post it again for Hyper to think about. Doubtless, she has seen it before.
'Research evidence can only be constructed as a threat because it forces the scientist in us to engage, confronts lazy and easy practice, and demands each clinician brings thinking to the process. If we accept that science is a way of thinking more than it is a body of facts (Sagan 1996), research evidence can be seen as a facilitator
enabling the profession to grow.

Embracing it indicates the profession?s commitment to best practice and keeps us bound to the scientific tradition. Plante (2004) argues that the increasing emphasis on evidence rather than intuition for guiding SLT practice signals disciplinary maturation. The use of non-scientific and pseudoscientific practices in our midst is surely sufficient reason to view research evidence as a valuable tool for a scientifically based profession. Ignoring the research literature keeps therapy, as Hubble et al. (1999) say ?trapped in a ?mythological world?.'

Link to paper in RCSLT's peer reviewed journal

What Mareeya said about "parents not understanding", and "taking the scores put of context" were the reasons given to me for not giving me centiles.

Which mean I'm still no clearer on 9.6yo DS2's remaining areas of weakness - school say comprehension is an issue, SALT says his comprehension is age appropriate...

Hypetemesis is a bitch. Had it in all my pregnanxies. Metaclopramide is great, but omneprazole is brilliant...

Will look into that resource mentioned upthread in a bit. Anything!

As for Cerebra - the Cerebra lady locally who was running the courses stepped down due to 'personal issues' just before I was referred to her...

The ONLY Makaton course locally now is the one at the SN Nursery - but only parents of pupils can access it due to lack of spaces.

He isn't going to start there for another 8 months, and the worksheets are effing useless for me - I need to SEE someone physically DO the sign a couple of times before I pick it up.

And I can only youtube a small amount each month, as I'm on a dongle and have a tiny download limit (lack of funds...)

I'm typing on the ad, now - it is hard. Plus the keyboard is crap and cant be customised like an android one.

County I understand the poor download limit. We have landline broadband and a decent limit, but are limited Ito a 1mb download speed and many video downloads hang my browser. If it's Vimeo, I don't even bother any more.

Ad = iPad. It' s really shit! And hates swearing!

If a parent asked me to give them centiles and all the other information that comes out of a standardised assessment then that is exactly what I WOULD DO. I have some sympathy with the comments about results been taken out of context and it is true that an s/lt would not necessarily supply all the info straight off but when asked to...yes! Ask to see the file. It will (should all be in there)

Another thing to remember is that anyone can be trained to administer an assessment The skilful part is building a measurable data driven programme focussing on not only improving areas of need but ensuring that can happen when the s/lt is not present (as obviously s/he won't be 99% of the time)

I did a CELF the other day and although it was interesting to do it all, I'm not sure how useful it was ultimately

Yes, I use a care plan with SMART targets for every child I see. Yes, research evidence is essential, oro motor exercises for speech sound issues, pah! No evidence, no good. Metrachlopromide, hospital with a severe dystonic reaction, ondansetron = anti sickness for chemo drug fairly new, the business!

I realise I've gone for it a bit on this thread, but one of the things that wound me up to crazy levels was DS's SALTS reporting extremely dubious contact time as therapy.

I was almost scared to bump into his SALT down the market in case that was put down as one o his 10 sessions.

When I got his case notes (eventually, what a palaver that was?) I was shocked to see that according to them he's had about 5 times the therapy I thought he'd had.

Just being in the chikdren's centre building when we were signed in (despite never seeing them) got a therapeutic tick by his name.

And then the details were too. A SALT accompanied on a farm trip and Ds screamed through the whole thing so I went off on my own with him. Apparently, the SALT had done therapy with him on animal noises.

I'm no massive SLT champion actually, bits work, bits don't. My husband and son are both significantly dysfluent, no intervention from my own team has done a thing for my son. It just does not touch it. That's one area where I feel SLT let's people down big time. I'm an SLT so know I'm doing everything suggested for him. Nadda, stammer comes and goes regardless. It's pretty debilitating for him and painful to watch. Not great to feel like the one person who should be able to help him, can't. I'm under NO illusions about SLT.

Then there was the ASD specialist SALT who visited us every week at home and did have a few useful things to add, who a week before the tribunal did a surprise unasked for assessment on Ds and the next day we got a note from the tribunal adding her as a witness against us.

Oh Star that's frigging shameful

Star, s/lts are under obligation to log literally every second of the day against an activity as no doubt other health workers are. It riled me when my daughter was half dead a year ago in hospital to be changing her urine soaked sheets myself having been coolly directed to the linen cupboard by a nurse with her head in a file. No doubt she was doing something deemed important but what could be more important than helping a distressed parent clean up a barely conscious child?

It is a profession (lie any other) where there are myriad administrative tasks. Some people slip into it painlessly and I suspect quite enjoy the fact they don't have to spend every minute of the day doing actual hands on stuff. Some like me, loather it despite of course acknowledging that administration is essential. You just work out quicker and more effective ways of getting it done so you can get back out to get on with the fun bits, which for me, are being in the classroom.

Handy Yes shocking, but at least for me was exactly as I expected (except the surprise assessment).

Actually, she didn't do it completely without of consent. She started it, and half way through turned to me and said 'I'm doing an assessment like you wanted didn't you?' and I nodded.

The poor woman was shaking the whole time she was there, in my house giving the Judas Kiss. I'm sure she knew that I knew she would be attending the tribunal (as they had left it unamed). Can you imagine being put in that position by your bosses?

My sympathy dried up though because she was a bitch at tribunal. Probably blamed me rather than her boss for her predicament.