Here some suggested organisations that offer expert advice on SN.

another S&L question

(38 Posts)
lougle Thu 17-Jan-13 07:10:30

Is it normal for a child to substitute something completely random in place of a word they can't remember?

I said to DD2, "You've got a big curl in your hair." when she'd got out of bed. She asked to feel it, then said "Is it 'cuplax'? then shook her head and said 'cutlox....you know that thing where DD3 gets really big hair."

She was thinking of bed-head.

I, of course, don't know what's normal for a 5 year old.

lougle Thu 17-Jan-13 16:25:21

Bump for the evening crowd.

porridgeLover Thu 17-Jan-13 16:33:02

Lougle, while it doesnt ring any bells, DS would use an 'odd' word, in the right context.
So for example, he might say, 'I feel fatigued' instead of saying he was tired IYSWIM?

Ineedmorepatience Thu 17-Jan-13 16:42:44

Dd3 didnt really make up words but she would give a round about discription of what the word was, iyswim eg, when she was once shown a picture of some cutlery she said "urm, you eat with them"

Slightly different I know but it still sounds like word finding, if your dd cant think of the word she just says something. I could be talking c..p though grin

lougle Thu 17-Jan-13 17:16:24

Yes, DD1 does this still. She's better than she was - she used to say 'it pink and weeeeeee' and we had to work out she was talking about a slide!

I wonder if you're right. Perhaps she knew it wasn't the right word, but doesn't realise that she can just describe it, so she gives a made up word (or even what she genuinely thinks is the word) until I say 'wait a minute.....'?

Handywoman Thu 17-Jan-13 17:20:31

My dd2 did that only very occasionally though, it was like she would skip the 'what is that word?' Stage. As I say, this was not a frequent occurrence. She would also go for similar words e.g. Sandpit for beach, mostly for less common vocab.

Not sure if that helps, as dd2 has had (and still has some language issues) hmm

zzzzz Thu 17-Jan-13 17:37:10

It sounds like the kind of word muddling you might get post stroke, but I don't know if that happens developmentally/what it's called. Ds does this occasionally. I will try and have a look in "the book" this evening but everyone is ill so life is a little difficult.

lougle Thu 17-Jan-13 17:39:23

Sorry to hear you have a poorly house, zzzzz sad

zzzzz Fri 18-Jan-13 00:15:33

Only just sitting down for the evening, sorry! Will post tomorrow. I am shattered and can't even think of looking stuff up tonight.

PolterGoose Fri 18-Jan-13 08:37:37

Wondering if zzzzz is thinking of Aphasia? It might be worth looking at Speakability

zzzzz Fri 18-Jan-13 09:46:46

Sorry yesterday was very....hmmmmm

The book I was talking about is "Language Disorders from Infancy through Adolesence" (it's a huge text book and costs a fortune, but I thought I'd seen something in passing when I read large chunks of it last year. Sadly I can't find the bit I was thinking of and it was really only to give you a start IYKWIM

Sometimes it helps to familiarise yourself with terminology and ideas.

So some guys called Rapin and Allen produced a list called Clinical language subtypes in 1987, you may be able to google to read the whole thing but the parts that seem pertinent to me are Lexical-syntactic deficit and Semantic-pragmatic deficit. But that is only a guess from what youve said on here. Remember this is only a description of language not any other problems (so not instead of for exampl an ASD dx, more a supplementary description of language issues).

The positive is that here are tons of resources on line from helpful SALT for activities to practice etc and if that isn't the issue most exercises would help the average primary school child anyway.

Sorry if that is a bit of a damp squib, I used to have pretty perfect recall for what I read but it is one of the casualties of dd's epilepsy as so many totally sleepless nights seems to have taken that from me. As a result I am having to learn to write notes, but am rubbish at it.

zzzzz Fri 18-Jan-13 09:49:08

I think what I read was about the difference between acquired aphasia and developmental aphasia.

Warning the word aphasia is used in a very sloppy way in lots of text so be careful to find out exactly who they are describing.

lougle Fri 18-Jan-13 10:28:48

Ooh thanks! I don't think that aphasia would fit, because that's an absence of words, isn't it...but dysphasia might be worth a look.

It just seemed a really odd set of phonemes to combine. I'd understand if she'd said 'bidbed' or 'bidmid' or something vaguely comparable, but to use a word like 'cuplax' which you'd never hear in normal use...it was just odd.

I'll probably still be posting when she's 16 when everyone else says she's fine.

moondog Fri 18-Jan-13 10:33:21

Phonologically it isn't an odd set of phonemes to combine
(think of words like Complan, complex) but semantically it is curious because there is no such word, or more precised no arrangement of phonemes of this sort to convey a recognised meaning.

My advice would be to worry less about spurious labels which will end up being a 'How many angels can dance on a pinhead' sort of discussion and more on how to address such issues.

zzzzz Fri 18-Jan-13 10:37:05

That's exactly the wooly use of terminology that makes things difficult. Yes you are correct, but in lots of texts this is more applicable

www.aphasiahelp.org/information/aphasia/11_aphasiadysphasia/index.php

As a one off it's fine as part of a picture it might help focus therapy I guess.

I think you need to focus on helping the issues as you see them. Don't wait for permission/dx to address the problem.

moondog Fri 18-Jan-13 10:44:25

And I don't mean to sound dismissive of your very helpful and informed contributions either Zzzz.
It is just that obsessive discussion of what label to use is endemic in the 'helping' professions and it does nothing ultimately to help families and children.

I remember a psych once triumphanlty announcing to me that she was going to diagnose a child with PDA. I asked her how this would be of practical help to this family and she looked absolutely stunned.

I can't help but think what is the purpose of obsessing over labels (and even the so called experts can't agree-what I call one thing might be considered differently by a colleague) because these things are not black and white like measles or chicken pox.

What is far more helpful is to define the key issues causing concern in clear jargon free language and then devise an intervention that is described in clear jargon free language and designed to be able to measure progress.

As a parent of a child with communication issues I would be very angry indeed and utterly reject any effort by any professional to label her issues. (As an aside, I don't let anyone near her-I don't trust anyone enough apart from her teaching staff and the handpicked few that I choose to wrok with.)

lougle Fri 18-Jan-13 10:44:31

You're both right...I suppose I'm concerned that if I try and address it before it's even been recognised, then I could be doing things incorrectly and I'll be only trying to address a small part of the bigger picture.

Perhaps I just need to be more patient. I don't care what label could be attributed, but I'd like to know why she is doing those things. Although that in itself is confusing, because often the labels children get relate to their presentation and little is known about the 'cause' grin

I realise I used the wrong terminology, too - I knew what I was trying to get at, just got it muddled up. 'Odd' is so much more useful as a term wink

lougle Fri 18-Jan-13 10:49:30

I suppose, Moondog, that as a parent without professional training in the area of difficulty, we seek 'labels' simply because (it should be) label=recognition of an area that needs support=techniques which address need=improvement in child.

At the moment, I'm in a no-man's-land of teacher saying she's fine, paed saying that there's something wrong, but she may prove sub-diagnostic in each area that is not quite right, although overall there is a combined issue, etc.

I have no idea how you fix this sort of thing, and nobody to tell me. I'm also scared that if I wade in and try and fix some bits, then the rest won't be recognised and I'll have failed her when she crashes.

moondog Fri 18-Jan-13 10:53:57

Yes, I realize that I am in a unique position to sift through what is on offer and accept/reject (90% I reject). it isn't at all the same for a parent who does not work in this field and I recognise that.

As you say quite rightly
'we seek 'labels' simply because (it should be) label=recognition of an area that needs support=techniques which address need=improvement in child.'

Yes, of course! And in a same world, that would be the case.
But such is the insanity of the huge SEN industry that ultimately appears to seek little more than its continued existence, that this os much harder thasn it seems.

And all due respect to paedaitricians but language and learning issues are not their forte.

moondog Fri 18-Jan-13 10:54:20

sane world

lougle Fri 18-Jan-13 10:55:17

Perhaps I should train as a SALT - I'd be able to sort DD2 and bring some Moondog sanity to the South grin

moondog Fri 18-Jan-13 10:58:13

Well, the world of ABA is full of professionals who started out as parents of kids with SEN and found the provision on offer a total joke.
As Gandhi said, sometimes you have to be the change you want to see in the world.
At the risk of sounding like an utterly patronising smug caring carrot, my own child's difficulties have turned me into a much better person in my work. Every child I work with is, in many ways, my child.

zzzzz Fri 18-Jan-13 11:02:15

On one level I agree regarding the "search for a label" and I have a rigorously ring fenced child with no dx but unarguabley severely disordered language. But as I recieve extraordinarily unfocused "advice" from professionals and lay persons alike, I find at least a rudimentary understanding of their take on conditions, cause, therapy, outcome is necessary. I both laugh and cry in turn at the extraordinary interpretation of behaviour presented as fact.

From a Salt point of view there are lots of resources on line, that may help or at least help you undertand her difficulties. The terminology helps you find things.

I didn't find you dismissive moondog. Your experience is entirely pertinent and I personally find your posts great.

lougle Fri 18-Jan-13 11:03:31

"utterly patronising smug caring carrot"

grin you don't sound like one on here. I don't mind caring carrots as long as they are conscientious and effective.

I'll never forget a SALT session with DD1 where the SALT was trying to get some joint attention. She was saying 'look at this book with me DD1.' DD1 was saying 'loook - up there...' and desperately motioning to a toy on a high shelf. Silly SALT didn't seem to join the dots. She wanted to 'share' a book. DD1 wanted to 'share' a toy. Surely the same session could have been achieved using the toy instead of the book. I eventually suggested that they did one thing DD1 wanted followed by one thing the SALT wanted.

zzzzz Fri 18-Jan-13 11:11:15

Could lax=locks, like goldilocks but in this case cup-locks, even more sensible if they have a "cup" of something at bedtime, but I think that's probably just me wishing to be a super-language-interpreter extraordinaire! grin

lougle Fri 18-Jan-13 11:13:33

interesting....perhaps she has 'small girl in a forest eating porridge' syndrome grin Right...off to find the book that deals specifically with that.

moondog Fri 18-Jan-13 11:31:14

Glad to hear I have not offended. grin
I try to hold back on the rage I feel at the utter failure of the SEN industry at large because it will, at least on here, only make posters feel more anxious but if I really let rip I would never stop.
I feel personally betrayed on so many levels but we shall put that to one side.

Lougle, a person with behavioural training would never have done that. He/she would have taken your child's interest in the toy as a way in and worked from there. Without harnessing the child's interests, you are lost.

One of the (many) issues is the tedious bureaucracy and admin, surrounding any efforts to see a professional. By the time you have filled in the forms, gone through the case history and so on, you have used up a huge chunk of time and energy.

Unfair as it is, you are often better off helping yourself, which is where MN is so valuable.

I'd like to take this opportunity to big up the wonderful company Taskmaster whose catalogue is a treasure trove of valuable resources and one of my favourites. Get onto them and ask for a copy. There are so many fantastic resources out there.

lougle Fri 18-Jan-13 11:44:19

Exciting - I love catalogues! I'll give them a call.

I genuinely do want to help DD2. I'm not just after a label. I worry though that she's meant to be learning at school, and they aren't picking up that she doesn't always understand.

The example of last week, when she came home and said 'Mum we have two guns in our bodies!' After a few careful questions, I established that the teacher had been talking to them about 'lungs'. Unfortunately, DD2's literal thinking linked with the fact that she misheard the teacher, led to her thinking that she had two physical guns in her body to help her breathe!

used2bthin Fri 18-Jan-13 12:04:13

lougl e I don' t know what it meaning as you know,my dd 1 has similar stuff going on to your dd 1 and she describes or substitutes words or acts things out when she can.t find the word.
last week during her psych assessments she was looking through a book and naming the pictures in it as part of the Bacs test. she got to a triangle and said er, a heart? to which the . psych said no but it is a shape. dd looked like she was really trying and said, sand castle? I can' t remember. the psych said have a think to which dd shrugged and said no,can.t remember we' 'll call it a heart!

lougle Fri 18-Jan-13 12:19:52

It's that link between the label and the concept, isn't it. Do you think she knows what a triangle 'is'? In other words, does she know that all shapes with 3 sides are the same shape that we call a triangle? DD1 new her shapes, numbers to 10 and colours (including some secondary and tertiary colours) quite early. However, knowing them and knowing what they are called are sometimes different things.

used2bthin Fri 18-Jan-13 13:18:07

exactly and yes I know she does know about triangles as maths stuff is generally a strong point. the stakeholders last time with the word giraffe she knew it but couldn't find the word as it isn't one she needs to use every day.

used2bthin Fri 18-Jan-13 13:19:59

argh same hhappened not stakeholders! I think it shows resilience to keep trying that hard to say what they want to say.

Handywoman Fri 18-Jan-13 14:12:05

"Lougle, a person with behavioural training would never have done that. He/she would have taken your child's interest in the toy as a way in and worked from there. Without harnessing the child's interests, you are lost."

We have a private SALT on board who 4 years ago never failed to amaze me in her talents for following my 4 year old severely language-impaired dd2's interest, going off with dd2 on her little tangents and working, working, working with her all the time to move her language on at every opportunity. She kept dd2 engaged and on-task 100% week in and week out for 9 months. People this talented are not that easy to find.....

Before the speech and language therapy, I stressed so much wondering ?is my dd2's language delayed or disordered? I only stopped stressing about this when our amazing SALT came on board (I found her by chance, she lives near me) and she listened and saw what we saw and showed us a way forward and embraced the uncertainty with me. I would sometimes ask 'why does dd2 do that?' and the SALT might sometimes say "i'm not sure" and that would be OK, it's more about having somebody to lean on and keep you signposted. Looking for a label is what parents do when they are looking for 'what to do next'.

I am back to stressing about labels again as sit it out on the long-winded and incredibly tedious pathway to ASD assessment. If I clap eyes on another questionnaire I will explode with rage!!! It is so stressful being in the dark. Once again it is not the label I am just waiting for, more a person who can see what I see, whose knowledge I can draw on, to embrace the uncertainty and walk with me on the onward road...........

I think the search for a label is a many-layered process for parents. Honkhonkhonk for us all!

Oh and thanks for the link, Moondog, that catalogue looks excellent.

zzzzz Fri 18-Jan-13 14:34:36

moondog lovely catalog, thank you.

Ds says thank you too, because he has been allowed to do a puzzle for an hour 20 mins while I browse. grin

lougle Fri 18-Jan-13 14:42:40

Thank you handywoman, for expressing much more clearly than I was able to, what I am searching for.

That catalogue is certainly a recipe for child neglect grin

moondog Fri 18-Jan-13 18:50:13

There's a copy by my bed. grin
Not exactly the most seductive sight for my dh but still.....

zzzzz Fri 18-Jan-13 20:16:23

I keep all my sn related books by my bed. I was looking at our room yesterday and laughing at the thought of just how wierd my bedtime reading is......it is also making it rather difficult to move on my side!

Sputnik Fri 18-Jan-13 23:09:58

I know the thread has moved on a bit, but my DS also does this occasionally. He's 5 too. He started quite recently and never did it before. I take it as a desire to fill in a gap when he can't find the right word, so in that sense positive.

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