Here some suggested organisations that offer expert advice on SN.

Communication disorder is NOT a delay!

(207 Posts)
Skelosia Tue 07-May-13 14:09:12

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. angry Especially as his behaviour could never be put down to poor parenting - except perhaps the rudeness.

Anyway, hello smile

Ineedmorepatience Tue 07-May-13 14:39:59

Hi skelosia I have a Dd who is 10 and has a dx of Asd. Communication is a big problem for her, she can talk the back legs of a donkey but actual communication is a different matter, so I know what you are talking about.

She often has word finding difficulties although probably not to the extent that your Ds does. Yesterday for instance she was trying to clean something sticky off her drink bottle, she was standing by the sink flapping as she does and she said "I need a wipey thing". I asked her what the name of the wipey thing was but she really struggled to think of the word.

She has big problems with sounding rude as her language is abrupt and if someone asks her a question she will answer it. I have learnt never to say things like, "would you like to get your coat on?" as she will answer "No"

I find it hard when people say they dont see a problem with the way she is but then will look down their noses at me when she is having a moment.

You have definitely come to the right place smile

Skelosia Tue 07-May-13 14:50:24

Hi Ineedmorepatience thanks for the reply smile

Yes, that word finding comment is apparently common in children with ASD and communication difficulties. My DS doesn't do that - though I wish he would! Instead he just stops. Then it is an investigation. Sometimes I can help him if I have a good idea of what he was going to say, but sometimes I can't!

I am a better person though, for having to deal with DS. Not just since the dx, but before too. I have more understanding, more patience (some of the time). DS has taught me so much, but most importantly that mum knows best!

zzzzz Tue 07-May-13 14:55:55

You sound very cross. Why does it matter so much that she is disordered or delayed? I disagree that disordered children don't "grow out of it", because they do of course develop just not in the same "order" as the more nt child. Delayed children also develop over time, they follow a more typical route though.

Many of the issues you've raised are things that children on the autistic spectrum struggle with, in fact ASD is often described as a social communication disorder.

For me none of that is particularly useful, as I am more focused on finding ways to help. My ds has a severe language disorder and many other issues that I see reflected in the ASD community. He has developed hugely over the last 8 years and while I doubt very much whether he will ever stop struggling with language, I am sure he will struggle less as he grows.

Asheth Tue 07-May-13 15:07:47

Hi Skelosia! How long did it take you/S&LT to recognise it as a disorder rather than a delay? My DS is 4 and sounds very like yours. We're about to start S&L therapy. And I must admit I'm clinging to the hope that it is a delay and he will 'grow out of it'!

I tend to lurk on the SN boards, particularly on threads to do with ASD as I'm aware that I can't 100% rule it out at the moment.

kalpamum Tue 07-May-13 15:54:56

Hi skelosia. I have a 12yr old with complex difficulties, she under S&L but much support at school for difficulties that a very similar to your DS. I was told and though myself that she would grow out of difficulties but has not! Can I ask what support your DS is provided with, I have an appointment next week with school and S&L and would like some ideas. Thanks

babiki Tue 07-May-13 16:23:47

Asheth, the word 'delay' does not automatically mean that children will 'grow out of it'. It is a rather unfortunate term tbh.
For example, my son's label is global development delay - many people thus assume it is temporary... I don't even use it anymore, I just say learning disability as that is what it get changed to once children are bigger.

Skelosia Tue 07-May-13 16:24:49

Asheth that is rather a bone of contention. It was picked up early on, at about 18 months, but we moved out the area. When I told the new doctors he had been referred for assessment, we went to see a new HV who also said there were issues. He was 3. Then we moved again, not totally out of the area, but to the other end of the city. As we were under the same PCT I didn't bring it up again until he started school and we still hadn't heard anything about an assessment. Then his teacher said that as his hearing was fine he was just naughty. It wasn't until a chance conversation was had, that I pursued it through the GP. And although I was a bit off with what I thought it was, I was right in that he was different. So, I guess you could say it was noticed when he was young. But last year we finally had all the right assessments, and it was a case of finding the cause. And it wasn't the SLT who diagnosed it as a disorder, but the paediatrician. She told me that the difference is that a delay would mean he would grow out of it, a disorder makes that unlikely.

kalpamum He sits facing the teacher, and has been given strategies by his SLT to ask for things to be repeated. He has a TA that he sees once a week and I think the classroom TA spends a lot of time with him to get him started. He has an IEP which focusses on his SAL targets, and his teacher has been fab in bringing him to his potential. It is a lot to do with understanding him. When we had behaviour problems the teacher brought in a behaviour book. TBH I don't think much is done in the classroom setting other than encouraging him to ask for help when he doesn't understand an instruction. I think they also reinforce instructions with pictures - very useful for any memory problem!

zzzzz It is not the issue of him being disordered, but the fact that my friend is so flippant about it. I have been told that he probably won't just 'grow out of it' so I don't need people around me treating it as if it is nothing! I don't want my hopes built, no matter how well intended. And considering his comprehension is that of a 4/5 year old, it isn't as if he is a couple of months behind. It is a significant issue in our lives, regardless of how well we deal with it on a day-to-day basis. Many with SN children will agree that it is hard going, and just because they have SN doesn't mean we are fabulously perfect parents. I have off days, more so now I'm pregnant, where I just can't deal with the repetition. And it is. Every day, when in his presence I have to be so alert to how we are both behaving. I am worn out every day regardless. I have looked after 'normal' children in the past, and although I know they are different when they are someone elses, but I have been so shocked at how easy they were! I ask if they want a drink, I get an answer! My friends 2 year old responds better than my 7 year old! Yes, he does sound like an ASD child, but his paediatrician assured me he isn't. The support he has right now seems to be doing the trick, and if it isn't a problem, then it isn't a problem and I won't pester for it. I am just cross that people that are supposed to support me just ignore the fact that it is more than a delay. At least with a delay, you know they will grow out of it!

And I would love for someone to tell an ASD parent not to worry, their child will grow out of it, because, after all, that too is a disorder. I don't believe they ever do. They just need a different set of skills to function in society.

zzzzz Tue 07-May-13 17:45:05

Sorry I probably didn't explain myself clearly. I wasn't saying your ds (or mine) had ASD. What I was saying is my ds and from your description above your ds, share many of the behavioural problems that children with ASD display. Many of the techniques used to help are common.

Your ds is only a year younger than mine and sounds similar it's interesting to hear your take on things. Its hard to place ds's level of language, here it is more usual to describe severe, moderate or mild. I have other children so, yes, I agree it can be harder work (understatement!) helping a language disordered child.

I think your paediatrician is being a little disingenuous with his dismissal of "delay" as something you grow out of, because of course many make slow progress but will never get there. Disordered children make progress too (at least in my experience). Do you feel your child's development is static?

Your "friend" sounds like she is trying to be up beat, but is actually belittling your problems sad. Would it be worth explaining things to her?

School sound half hearted?? I think if he is happy and making academic progress it's probably good. You could get an ed psych to observe or talk to your local language unit or ICAN, if you want to explore what other options are out there.

Younger siblings are a huge boost to language, so you are going o have homegrown therapy in place soon.

Skelosia Tue 07-May-13 21:53:44

No, he is definitely not static. He had improved a little, and at home w are coping. It us hard with the schoolas I obviously don't know what happens in the class room, but have seen improvement in last year where the teacher was adamant it was me, not ds who had the problem. A for my friend, i'm probably not going to have much to do with her from now on anyway, not just because of her flippancy on this matter but so many other things too. Yes,I agree, ds does display autistic traits, but pretty sure it isn't that! I do how the new arrival will help. He has been wanting a sibling for so long! Some one else one mentioned Ed psych. Maybe I'll look into that. I have been in touch with I can, and think they are fabulous! Definitely makes this journey less lonely. smile

zzzzz Tue 07-May-13 22:09:08

In some ways it is easier for us because ds's language is SO poor no one could possibley think it is my parenting (and I guess the fact he has a nt twin brother helps too).

I don't really think of ds's behaviour as autistic traits, I see them as a manifestation of the stress he is under coping with the world through his language disorder. I feel those behaviours that people describe as "autistic" are, even in autistic children, the expression of the destress of experienceing the world with sensory/gut/social communication difficulties.

I like the look of the ICAN schools and would love to snoop round them or a day.

Hi Skelosia, I think it might have been me that recommended this section on your other thread.

I struggle with this too, in that DS2 (Asperger's, ADHD) is not going to 'catch up' when it comes to social communication. He is making brilliant progress, but the gap between him and his peers continues to widen. I can see that his difficulties would seem like a delay, but it's a lifelong condition, and no amount of time is going to make his brain into a neurotypical brain.

CouthySaysEatChoccyEggs Tue 07-May-13 22:37:24

Ah, the 'Global Development Delay' that in my DD's case has suddenly changed at 15yo to 'Moderate Learning Difficulties'.

Her development wasn't done in the same 'order' as an NT DC's just slower, rather her development has been rather unusual - crawling before she could roll over, for example. Able to cook a full meal from scratch before she could tie her own shoelaces. Able to shave her armpits before she was dry at night...

No, in my DD's case, it's not something she has 'grown out of', more that one set of issues gets replaced by another.

OK, she can talk now, perfectly well, albeit with a few mispronunciations, but that doesn't mean the people she speaks to at school actually socialise with her outside of school, unless they can't find anyone else to socialise with.

I've lost many people that I thought were my friends over the years - but after 15 years of it, with 3/4 DC's with dxd difficulties, I have come to realise that they aren't the right friends for me!

Skelosia Wed 08-May-13 11:12:51

There is no valid reason for anyone to think it is our parenting either. We aren't overly strict, but not lenient either. One of DS's problems is listening and attention. We ruled out ADD, and we now understand that it is overloading of auditory information. He cannot cope where there is a lot of noise. And it was only the one teacher, who refused to support us, that had problems. He fell behind drastically in her class, but thankfully his Y3 teacher has brought him up to speed, and pushed him a bit harder.

In fact, I think he spent most of Y2 bored! He was sat with children of a lower capability than him, simply because they wouldn't support him. They assumed he was naughty and didn't listen. But in actual fact, with someone sitting there after the class instruction has been given, and making sure he knows what he is doing, and he is as capable as anyone else. He comes home now happy with school, because his brain is being challenged and he is learning. Since he has been challenged and pushed his behaviour has improved greatly. Coincidence?

It is the same at home. I have to keep an eye on him, and know when he is getting bored, before encouraging something new, or removing him from a situation for a break etc. He does not control his behaviour. I think this is partly because he does not know how to express his feelings (such as 'I want something new' or 'I find this too easy').

I don't see him as anything except my DS. It is how he has always been. Looking back, I can see where the communication difficulties started. I did everything the 'experts' suggested from the moment he could babble. He is 7 now and still does not understand the meaning of pointing. He will not follow your finger to the exact spot, but he does now look in the general area. He told me he loved me for the first time at 6. He would never wave as a toddler, despite being encouraged to. Before the dx, it broke my heart. All the other children roughly his age were waving, saying bye bye, telling their parents they loved them. I was lucky to get any response from him of any sort. But now, it all makes sense.

I also have to remember, I am extremely new on this journey, despite having known for about a year now. I am still learning about it, trying to figure out how it affects my son and how best to help him. The worst bit of it? Finding out how it affects my son is being learnt through books and research, and asking him if a certain scenario is true for him, because he cannot express it to me! I get fewer despairing looks in public now though, because I have been given better strategies of dealing with him in public.

beautifulgirls Wed 08-May-13 11:30:12

Hi Skelosia

Are you yourself comfortable with the paeds view that he does not have ASD? My daughter has both APD and ASD, and many of the difficulties you mention she has. I may of course be entirely wrong, but things like not getting finger pointing and not understanding phrases such as "pull your socks up" sound more like ASD related issues then APD. Traits of ASD are of course a possibility without ticking every box needed for a diagnosis. I guess what I am saying is trust your instinct here if you are not truly comfortable with the advice you have had.

Sorry to hear about your friends. Some people get it with help to understand, others just simply don't believe you and will not listen to reason. The media has a lot to answer to as well in all of this with sweeping statements about naughty children being over diagnosed etc. If a friend is a good friend you will find they will learn how to understand, otherwise sadly time to move on. There are plenty of good people out there too.

zzzzz Wed 08-May-13 12:32:38

I agree much of what you describe doesn't ring bells for me as auditory processing issues, more social communication. Possibly this is why you are finding ABA so useful.

Skelosia Wed 08-May-13 12:43:14

I can't really say how I feel about the Paed's view. She did say he displayed ASD and ADD tendencies, just not enough to justify further investigation.

I have learned through all this that I know him best though. It took me 4 attempts to get the GP to take me seriously for referral. In the end I had to take loads of paperwork to prove my point, that it was a bit more than normal childhood behaviour!

We do wonder if he has SPD though. We despair with him at times. He will sit tightly wrapped in a blanket when the temperature is boiling, and we think that is because he likes the feel of it being wrapped around him. There are only a few foods he will eat, and he can tell the difference if you buy a different brand. We think a lot is to do with texture as well as taste. Then there is the excessive movement and spinning around. He goes crazy, literally bouncing off walls. There are things that do make us question whether he does just have a communication disorder, but at the moment, we are just waiting to see if he grows out of it, if it causes a problem, how serious it might get. Not wanting to create a problem if there isn't one, and feel that he has been through enough the past twelve months. Obviously a lot of life changes happening with the new arrival, moving house in the next few years, and September 2014 he will be going up to the Middle School. He has calmed down a lot since the dx. Time will tell if it is more though. His self esteem was probably crushed before. I remember I would go crazy at him because he 'wasn't listening', and I saw him crumble behind those gorgeous brown eyes. He genuinely had no idea why I was getting so cross, what he had done wrong. He had that from me for years. Now, his self esteem is being built back up, so maybe other issues will fade.

As for my friend, I was warned about her from another friend. But I am not one to listen to idle gossip. But in this instance, they were right. Everything I have heard has turned out to be true. And I totally agree about the media thing. My mum had a similar view. I was a statistic, someone trying to blame bad parenting on something else. But there isn't anyone with a bad word to say about DS, as he is a loving, caring and thoughtful boy. I was ineffective in parenting pre-dx, but never was it my fault. In fact, I even asked his SLT what it was I could have done differently. I was told that it is just the way it is sometimes. Just got to move on, get on with it, try and ignore the skeptics among us smile

Hyperhelpmum Thu 09-May-13 17:27:19

Really feel for you. Just wanted to clarify, paediatricians and SLTs use 'delay' to describe a child with normally developing skills that are behind for their age. Some may catch up and reach age appropriate levels, done may not ie if a child has limited language but language is being acquired in the typical pattern or if child has poor social skills for their age, more like social skills of a younger child, they are delayed. Of a child is developing in a non typical way e.g language is acquired in an unusual way such as using made up words or getting words in the wrong order e.g instead of I want apple, apple I want for instance or if social skills are not typical eg no eye contact or lack of joint attention (interest in a shared object/ moment eg child looks at dog then at mum and smiles then back at dog to say look, I like that dog, do you see me liking it?! Do you like it?!) that would be disordered. The child's development may be behind for their age but it is also not typical of normal development. Neither things are necessarily things children grow out of its just delays are slightly more predictable as you know where the child will go next. Disorder means the child will need help specific to them. A dx of either is heart breaking and not to be trivialised or compared. I think people have NO experience so say stupid things like they will be five or grow out of it. Try not to be hurt. It is lack of knowledge rather than lack of sympathy I think. Hope this helps a bit. I'm a Paed SLT with a 5 yr old DS with potential ADD but I still worry there is more to it-he doesn't answer me, is on his ow topic alot and struggles to follow instructions. Even those of us I the 'job' don't have all the answers and feel like we are blindfolded with our arms tied behind our backs with these little people who are different but not clearly why or how. It's exhausting.

Skelosia Thu 09-May-13 21:25:50

Thank you Hyperhelpmum for clarifying the terminology used!

Next time she says that he will grow out of it, I will as her how she knows that. She has never really known what it is that is going on, because she never asked. I would tell her, but she just seems to go on that he will grow out of it.

Yes, I can see how a delay would be predictable. And how it doesn't necessarily mean they will grow out of it. If I did have a choice, I would choose the delay though!

I think that some of DS's problems are my fault. But I now know that the communication thing isn't. So relieved to be in good company though. It doesn't feel so lonely now.

Hyperhelpmum Thu 09-May-13 21:49:09

It is not your fault. In my msc they told us a child could be locked in a cupboard and only exposed to language a few hours a day and they would learn to communicate. Human beings are sociable and driven to communicate if and when they can. It's no more your fault than it would be if he was not a fast runner because he was born with short legs. He was born that way. A mic of generations of genes, not even yours and his dads alone. It's no ones fault. He is lucky to be born to patents who want the best. He could be the child of someone ill equipped to cope or care.

Hyperhelpmum Thu 09-May-13 21:52:26

Ps delay is used in the place of the very un pc phrase retarded. You would not wish that on your son. They are both disabilities. Try to forget terminology and labels. I don't think they change who the child is or what they need from us. Just my opinion.

zzzzz Thu 09-May-13 22:10:47

When words like "retarded" were used I doubt very much whether they would have seperately disorder from delay at all. Personally I don't think you would wish either on anyone. hmm

Children starved of human interaction do show conciderable on going problems with communication.

There are many many individuals who are delayed, disordered or even totally non verbal who have normal or superior IQ.

Hyperhelpmum Thu 09-May-13 23:00:34

Very true zzzz. They would show ongoing problems of course. It's not a real scenario just an indication of how normally developing children are hungry to communicate. Obviously any child subjected to such neglect would suffer long term issues. And also true that people can have normal IQ and no verbal communication. That's why I don't think labels are always helpful. Imagine if Stephen Hawkins had been born in another time. You can't always predict a child's outcome from a label given by medical professionals in early childhood. You would be shocked how recently that awful term I won't repeat was used. In our lifetimes (if you were born before end of 70's)

zzzzz Fri 10-May-13 00:23:02

Not just "can" but "do". Dx is helpful if you understand what that dx means. Labels are for luguage and groceries.

I'm aware obviously of changes in terminology over time, but felt your post implied that "delayed language" was a consequence of deeper issues.

There are plenty of examples of children who have been subjected to neglect on the scale you describe, the Romanian Orphans spring to mind.

CouthySaysEatChoccyEggs Fri 10-May-13 00:33:23

Hyperhelpmum - that has explained PERFECTLY to me why I always disagreed that my DS2 had a speech DELAY. Because he spoke like bloody Yoda for years. It wasn't JUST that he didn't say his first word until he was over 3 and a half, but the way he made his sentences - I is hungry, I is, things like that.

Nobody would listen to me. Even now, he says things in such a way that I know what he means, but the sentence isn't quite constructed the way it should be.

That makes it far clearer. DD was the same too.

So I would hazard a guess that DS3 will be too, when he gets past using single words.

Thing is, with 3 DC's with disordered speech, it would be easy to say that it is my fault. But if that's the case, why has DS1 never had that issue? Why was he able to hold a full, almost adult conversation with preschool staff at just 2.5yo about the definition of omnivores, herbivores and carnivores?!

I KNOW it's not me - and all who have come into contact with DS1 over the years know that too.

But disordered rather than delayed explains DD and DS2's speech far better.

Hyperhelpmum Fri 10-May-13 08:22:43

Yes zzzz i guess that word is wholly unhelpful as many children with difficulties understanding and using language have normal IQ and normal development in all other areas. I still think in the past any delay was described with that word, even though we now understand it is not an accurate description of the whole child. Glad it helped Couthy. The sentences you gave weren't actually disordered as most if not all children use 'i' is or 'me' is. Is it your children's speech as in the sounds they produce or way they produce a word or their language the words they are using? I only ask as we do see lots of families where more than one child struggles with their speech sound production. It's not as common but we do see families with language difficulties too. Again, not your fault at all as you see from your first child.

Hyperhelpmum Fri 10-May-13 08:30:58

Just in addition, SLT's will term speech difficulties delay if the sounds or errors are typical of what most children do but grow out of e.g. Using /t/ instead of /k/ as in cat becomes tat. Most children will start with tat, tar, tee for cat,car,key and then correct it quickly as they gain experience. They also miss off /s/ so snail is nail, snow is no etc. if you have a lot of these delayed elements together in a 3 year old they can be impossible to understand if speaking out of context. If they are making errors we would not normally see in typical development e.g. Using a /g/ which is a relatively difficult sound for a small child at the start of every word, or errors in vowels, that would be described as unusual or disordered speech sound development. I think it should be explained at appointments, I always try to as it is confusing and worrying.

zzzzz Fri 10-May-13 09:08:53

I'm having a lot of difficulty with some of the views being expressed on this thread, and am finding it hard to express why.

A huge variety of Mums post on this board and this shuffling about between dx as though some dx are intrinsically "more" or "less" makes me feel a bit sad.

Language disordered children are not intrinsically better off than delayed children or vice versa.

Language disorder/delay is not a better dx than ASD, in fact outcomes can be considerably poorer.

Speech and Language difficulties are very different issues, one with the production of sound and one with the structure and meaning of language.

Neglect as a cause of profound language difficulties is relatively unusual, because most infants pick up language with very little effort.

zzzzz Fri 10-May-13 09:09:40

HyperHelp do you practice in the UK?

'Ps delay is used in the place of the very un pc phrase retarded.'

No it isn't. Not any more than calling someone 'black' is, as they were often also called retarded, - not all that long ago.

'Imagine if Stephen Hawkins had been born in another time. You can't always predict a child's outcome from a label given by medical professionals in early childhood.'

I think it is naive at best to suggest that Stephen Hawkin's development and achievements, whilst no doubt hard work, weren't available to him because his family had considerable resources.

'You can't always predict a child's outcome from a label given by medical professionals in early childhood.'

No you can't. But no-one tells you just HOW MUCH of the prognosis is dependent on the family and their resources. And in order to use the resources you have in the most effient and outcome-driven way, you have to have a clear understanding of what exactly the issues are, and use shared terminology so that other people who come into contact with your child can understand too.

You would not refuse a 'label' of epilepsy, or diabetes.

PolterGoose Fri 10-May-13 09:40:41

I don't know enough to comment on the speech and language stuff being discussed here but am somewhat aghast that a professional would use the R word here.

Skelosia what you've described in your posts really does sound like an ASD assessment is warranted. At our first paed assessment my concerns were dismissed and the paed registrar started off adamant that ds did not have an ASD. Because I knew the various diagnostic criteria and had done a lot of reading, because it was glaringly obvious even to my inexperienced eye that ds had an ASD, I pushed for assessment. And, unsurprisingly, yes he does have an ASD. Also ha sensory processing disorder which I would say is more debilitating than his ASD in many ways. Have you seen an OT? Ours have been fab with the sensory stuff.

Whilst an ASD dx won't result in miracles, people will take you more seriously and your ds may benefit. It is common for developmental differences in children with ASDs to be increasingly apparent as they get older, sometimes it won't be until adulthood that problems come (eg if you're lucky enough to have decent schools who support based on need etc), but it is very hard to get a dx as an adult and the risk of anxiety and mental health problems in adults without a dx is high.

Sorry that sounds a bit evangelical, obviously it is your choice, am just trying to point out some advantages.

CouthySaysEatChoccyEggs Fri 10-May-13 10:38:46

They don't tend to talk like that at 7/8yo though, do they?

And it's not just that - it's hard to explain, but he uses phrases in the wrong context now he's 9 and a half, his sentence construction is still 'not right' IYSWIM.

I can't think of specific examples, but 'disordered' describes it far better than 'delayed' does.

Things like "help you shall I" instead of "Shall I help you". Or "dinner what is it" instead of "what's for dinner".

There are many examples I have that describe it far better, but I don't know how to explain them! Maybe I should try to think about that.

CouthySaysEatChoccyEggs Fri 10-May-13 10:49:17

The 3/4 that have had speech difficulties, two of them have dxd dyspraxia and 'Autistic traits'. My DS2's HT describes him as 'quirky'...

The best way to describe what has happened with all 3 of them is to use 2yo DS3 as an example - At 21mo, he had NO speech, not even babble. At 27mo, he had just 10 single words. now three weeks later, his speech has suddenly increased, still only single words, but I have to teach him each new word reeeaaaaalllllyyy slowly.

Like saying "sssssssssssnnnnnnnaaaaaaaakkkkkkke". He now pronounces it as "snay". All 3 of them with delayed speech missed out middle bits of words but got the beginning and end, or they missed off the end of the word. They always got the first letter sound right, once they did start talking.

It's VERY slow going though, and I have to slow the speech down to around one word per minute!

In three weeks of doing that, he has gone from saying just 10 words to having 40 words that me and his dad can understand, but nobody else can understand more than around 5!

But it's a start. grin

My DC2, my DS1, who is 11yo, never had any issues like this, could speak in full sentences at 14mo, no missing bits of words etc.

I didn't talk any less to DD, DS2 and DS3 than I did to DS1, and conversely I didn't talk any more to DS1 than I did to the others.

It wasn't my first DC that had excellent speech, it was my second of four.

CouthySaysEatChoccyEggs Fri 10-May-13 10:52:48

"Heart" is "hut", "nine" is "Niy", "ten" is "teh", "milk" he says "Mik", "Tree" is "tee".

It's all really odd, like he can only hear 'bits' of the word at a normal speech speed, and even at a slow speech speed. It's like he only hears the whole word at an incredibly slow speech speed.

God knows what that is, but DD and DS2 are/were the same.

confused

Skelosia Fri 10-May-13 13:56:01

I am taking on board ask the advice about d perhaps being asd. Perhaps I will investigate further. I don't see his SLT often anymore, a she us happy that we are coping and dshas the right support in place. But I do agree with zzzzz that it depends a whole lot on parents and resources. I ask his TA fir additional exercises, and she us usually compliant. We are doing well on that front to be fair.
It is a Shane you are upset by some of the views expressed*zzzzz*. That is either an issue you have, our our views aren't expressed effectively. My views are my way of trying to work through my own feelings about being a mother of a child with SN. You will see that they will undoubtedly change.

ouryve Fri 10-May-13 16:00:07

That sounds like phonological disorder, couthy - which, of course, is a manifestation of auditory discrimination difficulties.

zzzzz Fri 10-May-13 16:14:01

Anyone who comes on a support board for children with sn and says words to the effect "oh you wouldn't want him to be called that, that means "retard" and you wouldn't want that for anyone" is unlikely not to upset others reading the thread. hmm. I don think it is an issue I have with dx or that you haven't expressed your thoughts well. It is that I don't agree.

skel it sounds like you are happy with the support you boy is getting which is great.

zzzzz Fri 10-May-13 16:16:28

couthy if you are interested in auditory processing a poster called dolfrog used to post lots of research papers and information on it. It might be worth a search??

Yeah. I kinda miss dolfrog. Hope he's doing okay.

Hyperhelpmum Fri 10-May-13 17:48:31

People please read the posts I did not use the 'r' word but referred to it being used in the past and referred to how awful it was. I mentioned it as felt the OP did not fully understand the term 'delay' and somehow thought it was preferable to disorder. In the past doctors would say a child had 'retarded language development' that is a fact, I have read old reports etc. I do not condone the use of the word and would never use it as I made clear. I also did not say you wouldn't want him labelled that, I'm saying the same as you zzzzz, that no diagnosis is better or worse. Read the posts. I said labels are not always helpful as have seen dozens of parents chase a diagnosis and in the end find it does not change the realities of their child's difficulties. This is my personal experience with my son too. His dx has not changed the difficulties we have with him at all. The OP was saying delay is not disorder and I'm making the point that one is not worse and parents input is more important than a dx. Of course a ex can help target input but actually a lot of parents learn organically how to manage their child so the dx is not the be all and end all. I strongly resent people misreading and misquoting me. Zzzz I never said oh you wouldn't want him called that means retard. You are misreading my post and if I was unclear I apologise. This is my life and my job. I would hardly be posting such things!

Hyperhelpmum Fri 10-May-13 17:52:17

Just re read my post which was in response to OP saying she would choose delay over disorder, I said you would not wish delay on your son as in why think one is better or worse than the other. You have to read all the posts in context or they can be misconstrued.

Hyperhelpmum Fri 10-May-13 18:02:08

Zzzz I knew mentioning that word would get people's back up, I feel exactly the same and said it was very un pc. It is not something anyone involved with SN children would ever say or feel comfortable hearing to describe children. I used it to illustrate to OP that 'delay' is no better than 'disorder' as I felt she was misinformed. Anyone who says they would pick one dx over another does not fully understand the dx being discussed. I do. I was trying to use layman's terms as even after my first post where I described the difference between delay and disorder, OP still said she would choose delay over disorder.

Hyperhelpmum Fri 10-May-13 18:04:54

Sorry my pc keeps posting before I finish! Clearly the 'r' word is not laymans terms but I felt OP might get the gist of how seriously a 'delay' can impact on a child's life. It is not the better choice for any child. No one wants their child to have difficulties but you cannot choose a better one to have. That's all.

'I said labels are not always helpful as have seen dozens of parents chase a diagnosis and in the end find it does not change the realities of their child's difficulties'

How so? I have found the opposite, in that having a Dx changes the realities for the child in the parents ability to advocate for them. Without Dx, resources and support are usually denied.

You woukd not give insulin injections to a child regardless of how adamant the parent might be that it is needed unless you saw a Dx of diabetes, even if fir the majority if the time the parent is expected to and can manage the condition with diet.

zzzzz Fri 10-May-13 18:23:45

Clearly you were aware of how offensive retarded is but chose to use it anyway to make a point. The reason I asked where you practice is I have never heard any professional use that sort of tactic. I am however aware that there are cultural differences and wondered if that was coming in to play.

I think if you use this approach with clients it may not build the kind of relationship you would need to be of use.

PolterGoose Fri 10-May-13 18:28:16

FFS yet again, can I please remind people that it is not a label, it is a diagnosis

It is really insulting to suggest that my child's medical diagnoses of conditions that disable him considerably are just labels angry

MareeyaDolores Fri 10-May-13 18:31:39

Whether diagnostic terms become insults depends on society. In the last 100 years, pretty much every term used to describe a person with a cognitive disability has evolved into a 'loaded' term carrying some negative connotations. Words which started off neutral (and re-tard-ed is from the Latin for 'late') are transformed into weapons. There's a bit more detail here

No different from 'gay', 'queer' etc... except that as society changed, brave individuals decided to reclaim that vocabulary.

What's all this 'people'?

People, I am opening a bottle of wine - oh yes! It's after 6!!!

zzzzz Fri 10-May-13 18:37:24

I get all that mareeya but we are where we are.

They used to describe children with sn as "Defective" too. I wouldn't expect to hear it used by a SALT on a sn board.

Hyperhelpmum Fri 10-May-13 18:37:57

They desperately wanted a label as felt it would mean, oh we know what's wrong now you can cure him/her, do something more than you and we are already doing. That is often not the case. Yes a diagnosis allows you to understand the child's needs and the parents to make informed choices. I work with many children with significant social communication difficulties. We offer exactly the same interventions before and after a diagnosis of ASD regardless of dx. It is all behavioural in nature, helping the child develop positive communicative attempts and reducing their anxiety and frustration in certain situations. I suppose that is what I mean by dx is not the be all and end all. The children I work with have to wait a long time for a dx and so it is not overly relevant to the way we work. We know their difficulties, dx or not. We inform and support their parents without using the dx but describing the child's difficulties and needs and how we can work together to address these needs. Diabetes is a condition that of course needs correct dx in order to provide relevant medical treatment and save the child's life. Conditions such as ADHD can be managed with medication but the dx we are discussing on this thread e.g.speech and language delay/disorder cannot be treated with medication. They are not comparable to something like diabetes.

Hyperhelpmum Fri 10-May-13 18:39:07

Oh FFS zzzzz I didn't use that word to describe a child. I said it had been used in the past which everyone knows it has and was.

'I work with many children with significant social communication difficulties. We offer exactly the same interventions before and after a diagnosis of ASD regardless of dx'

REALLY? That's extremely rare in this country. Are you in the UK?

Usually it is generic stuff delivered at huge intervals by a SALT hi has no clue how to engage with a child with ASD and then followed up with a discharge upon Dx and child handed over to Autism Outreach.

PolterGoose Fri 10-May-13 18:41:02

Star, I'm just getting increasingly hacked off that all over the boards diagnoses get reduced to being called labels, it is offensive and undermining and I would expect more from a so-called professional than to speak in such terms. I should have directed it to hyperhelp but my general rage just came out.

ADHD and Diabetes don't always need medication and I don't agree that medication treats ADHD, but keeps some of the symptoms at bay.

ASD does have good evidence-based interventions that are difficult to access WITH a Dx but almost impossible without.

I agree with you completely PG. I suppose I just don't give a flying fig whether people called Ds labelled or Dx, but I suspect that is what comes from having a YOUNG child. I think it might bother me more in the future.

I can only pray the world has moved on a bit and support you in effecting that I guess.

PolterGoose Fri 10-May-13 18:49:04

It is all behavioural in nature

Would you mind explaining what you mean?

Hyperhelpmum Fri 10-May-13 18:50:02

OMG please stop pulling apart my posts! Sorry you live in an area where provision for ASD children is minimal! Complain to your local MP! Many SALT teams have had massive funding cuts and therefore lack of provision is Government cuts not their choice or clinical decision. PGoose, you have no comprehension of how professionals work clearly. Saying a child is being given a label is not offensive or undermining. 'Your child meets criteria for a diagnosis of autism' is a diagnosis but that child is also labelled in society as a child with autism. General society e.g. people gossiping in playground (i have heard this said) will not say x has a diagnosis of autism, they will say x is autistic. That is a label and not always a helpful one.

Hyperhelpmum Fri 10-May-13 18:52:23

No I won't clarify. If you do not have a child with ASD and have not worked with an SALT to support that child I'm not going to clarify. You will probably tell me the work we do is ineffective. I see it is daily.

PG IS a profession iirc, and I'm Ds' executive secretary and advocate.

Lol.

Complain to your MP?

You have no idea.............

'If you do not have a child with ASD and have not worked with an SALT to support that child I'm not going to clarify.'

I am both of these, so will you clarify. Not sure why you're getting at PG.

'You will probably tell me the work we do is ineffective. I see it is daily.'

That it is effective or ineffective? If the latter, what can be done in your opinion.

PolterGoose Fri 10-May-13 19:02:04

I do have a child with an ASD and I have experienced ineffectual SALT provision, am I qualified enough for you to respond or shall I put my letters after my name?

I don't give a flying fig what the playground parents say about my ds. I do care a lot what professionals say.

Again, my ds has a diagnosis of ASD. Not a label, as others have said recently, luggage and baked bean tins need labels, children do not.

Hyperhelpmum Fri 10-May-13 19:02:13

Not engaging. I'm not here to defend SLT or the NHS. Very happy that my Team and I do best we can with resources we are given and love my job because I have job satisfaction daily and can see we make a massive difference. Sorry you have been let down. The fact you need an explanation as to what behavioural intervention is illustrates you are not as in the know as you think. What is PECS if not behavioural? It supports child by introducing a behaviour, a communicative one.

Hyperhelpmum Fri 10-May-13 19:04:37

Ps the mum who overheard people saying her son was totally disruptive and shouldn't be in the school because he was 'so autistic' did care. They labelled him. Not us the professionals.

I know what behaviour interventions are ffs. I'm starting a MSc in that very topic in Sept.

I was asking you what YOU meant by it.

Honestly, stop being so defensive. I am TRYING to engage with you to reach a common area of understanding ( hence why I asked) as I'm sure there is lots you can add to this section (as well as learn from), but you have to tone down a bit to get the best out of people.

zzzzz Fri 10-May-13 19:08:49

You are extraordinarily defensive. Why do you feel so threatened by your statements being challenged?

I can assure you I have the experience and intellect to understand what you are saying. I can also assure you I will challenge in aches keys but am in no way looking for a fight.

But they would 'label' him anyway hyp, Dx or not, and it woukd probably be derogatory, Dx or not. It is not a reason IMO to deny a Dx. In fact I rather think a Dx in those circumstances then becomes essential.

PolterGoose Fri 10-May-13 19:09:27

Nobody is asking you to defend your profession, but if you post as a professional, presenting yourself as having greater knowledge than the rest of us* then you leave yourself open to challenge. If you use terms that we find insulting then we will call you on it.

*many of us are professionals in all sorts of fields, some related to SNs, some in related fields, some not, but we all share a desire for the best interventions for our children and we get out there and research, so we are not ignorant

zzzzz Fri 10-May-13 19:10:27

Challenge things I disagree with.... Sorry I'm a full timer!

PolterGoose Fri 10-May-13 19:11:10

And if you write something ambiguous we will ask you to clarify confused

And in that vein, zzzzz, wtf is 'aches keys'?

CouthySaysEatChoccyEggs Fri 10-May-13 19:12:56

The sum total of SALT provision for my non-verbal till 3.7yo DS2 - whose speech is still 'not quite right' at 9.6yo was ONE session with a SALT when he was 4y11mo, who said that I had done more with him than she ever could have, and discharged him 'so she could help children whose parents weren't as able to help their DC as I was'.

The sum total of my DS3's SALT consists of a 30 min session once every 3 months, he was non-verbal at the first, and had just 10 single words at the second, no dx, just handed a few Makaton worksheets and pushed out the door. They can't even offer me a Makaton course as there aren't any being run for the foreseeable future by the NHS, and I can't access the ones at the SN school unless DS3 becomes a pupil there, which he is too young for until next January.

So forgive me for feeling like NHS SALT does practically nothing. I've got more help by watching Mr Tumble than I have from the fecking NHS.

It was all so different 13 years ago with my DD - she got twice weekly SALT sessions, over a full year's worth. Then weekly sessions, fortnightly sessions, then monthly, 3 monthly, six monthly, and discharged at 7yo.

Funnily enough, out of all 3 DC's that have had speech problems, her speech was most 'normal' by 7/8yo.

You might have job satisfaction, but when I don't even have a dx for DS2's SALT issues when he's 9yo, don't have a dx for DS3 either, despite being under them for 6 months, I certainly don't have satisfaction with the service received when compared to what my DD got!!

MareeyaDolores Fri 10-May-13 19:17:35

Aha! Common ground! Let's have a consensus about the usefulness of appropriate behavioural interventions in general, and the substantial benefits of well-taught PECS for the right dc.

Hyperhelp, I believe that your area might well still have atypically good SLT services. Stick around and make friends here, because the axe will fall soon, as it has nearly everywhere else. And at that point you'll remember your comments about MPs etc with a hollow laugh sad.

On that day, what might help you and the dc / families you obviously care about, is this board's extensive knowledge of the 'system' and how to ameliorate the worst effects of discrimination against SN dc (and by association, against those who work with them).

Wrt to the 'offensive term' in question, was your pre-SLT field linguistics? Cos lots of folk here (and even more in RL, I suspect) simply can't get post that term, it's a bit like using a bad word starting with n in America's Deep South. Might I suggest a simple apology, and an assurance that you didn't intend to hurt.

And, by the way, welcome grin. It's a feisty board, and we all get pulled up when we put our foot in it, but (believe it or not) despite many posters' experience of shocking services, there is plenty of goodwill left for those putting in far more effort than the job spec says.

Hyperhelpmum Fri 10-May-13 19:23:38

I'm defensive because I am also the mother of a child with SN, the sister of a brother with aspergers and the cousin of two very very austistic boys. I resent being made out to be the 'baddies' who uses negative words to describe children I live with, work with, am related to! Again, the NHS has faced massive cuts and unfortunately SALT is not seen as important as tackling obesity/smoking/heart disease which cost the Government more to treat so they want it prevented and spend a large chunk in advertising etc. I am we'll aware that provision for children with SN is appalling in most counties. When I qualified all 28 on my course were offered multiple positions. Newly Qualified SALT's are now taking roles as teaching assistants as there are NO jobs. I just think people are so ready to slate the people at the front line e.g. Nurses and my profession (we are often verbally abused and have yearly training in conflict resolution now because people feel so let down, rightly so, that they take it out on us) if we had a choice, believe me, we would do all we could. Most of us work overtime you would not believe and have taken pay cuts to continue to work in the profession when higher band posts are cut due to funding. That is why I'm defensive.

Can I just mention that writing to your MP will have NO effect whilst SALTs base clinical decisions on available resources rather than the individual child.

zzzzz Fri 10-May-13 19:30:04

It sounds shit. Imagine being on the receiving end.

I'm sorry about the typos Friday evening is hectic and dh has yet to turn up. Things ease up after hordes go to bed.

Hyperhelpmum Fri 10-May-13 19:32:36

Ps I stated over and over again that the 'r' word was awful and did not use it to describe a child or children merely as an example of what 'delay' might have meant to some in the past. OP clearly had no understanding and ignored my explanation so used it to show her delay is not better than disorder. Can't keep saying this! I won't apologise for something I didn't do! If I'd said your son is not a retard be happy, yes slate me. I didn't! I said retarded was a word they used to use and they did! I can't apologise for stating a fact! I apologise if you read the word and felt insulted/ angered. I too find it totally unacceptable. I referred to its use in the past, it was used in the place of the term 'delayed'.

hazeyjane Fri 10-May-13 19:40:59

I am just cross that people that are supposed to support me just ignore the fact that it is more than a delay. At least with a delay, you know they will grow out of it!

I know the thread has moved on a bit, but ^^ this jumped out at me in the op, and as others have said - this is not necessarily so. Many of the children that have the syndrome that ds is suspected to have, have severe speech delays, to the extent that they are often non verbal, and almost always severely limited with their speech into adulthood.

Hyperhelpmum, I am curious about this that you said in one of your posts -
Neither things are necessarily things children grow out of its just delays are slightly more predictable as you know where the child will go next. Disorder means the child will need help specific to them. In what ways are delays predictable, if some people never grow out of them. Also, surely all children need help that is specific to them.

Wrt labels/diagnosis - even ds's genetics nurse came out with something about how 'we don't want mini hazey to be labelled as.....' but since having even a possible diagnosis, his therapies have become so much more focused.

If I did have a choice,I would choose the delay though!

Really! It puzzles me that there seems to be the idea that somehow a delay is preferable to a disorder. Ds (nearly 3) is described as speech delayed (no speech or babbling at all) and there is the likelihood of him being completely non verbal, or with severely limited speech. I don't get that that is somehow preferable to having a speech disorder (not that I think that a speech disorder is somehow preferable - all communication difficulties have a huge impact, and take huge amounts of work to access everyday life)

If I did have a choice,I would choose the delay though!

Hyperhelpmum Fri 10-May-13 19:42:16

We can't base decisions on individual children because our area managers have told us who we can and can't see, because they have been told they have x amount of money (very little) for a massive amount of children, because because because, you get my drift, we have no choice or control. We are on your side, want the same things you do but we can't deliver! I personally worked loads of overtime to offer 1:1 therapy to a child with verbal dyspraxia who had no words at all by 3, not even a sound. This meant other children went without my input but I made a choice. I felt bad but I had to help him. In that case I mad a clinical decision to help a child I felt desperately needed support NOW. We can't do that for every child. We would LOVE to. In terms of ASD dx, as you all know SLT 's alone cannot dx it. We rely on one Paed in the area to do a bi monthly joint clinic with us to ax child. There are so many children waiting there is a 9 month w/l for even a basic SALT assessment to get them on the Joint Ax W/L. Can you imaging being the one who has to tell parents, often in floods of tears?

hazeyjane Fri 10-May-13 19:43:54

oops, don't know where that double quote came from at the end, typing in the dark and seeing double with tiredness! Sorry!

hazeyjane Fri 10-May-13 19:48:50

Hyperhelpmum - sorry to hijack, what sort of 1-1 therapy did you do with the little boy who had no speech (also did he literally make no sounds - I am curious because ds does make an 'uh' sound, and screams - boy can he scream!)

We have had quite a struggle with accessing SALT, both for speech and feeding issues, hence my asking!

Hyperhelpmum Fri 10-May-13 19:52:59

Hazeyjane . I was referring to speech and language development ; delay is more predictable solely because child is developing as a child would, but is delayed. There is no characteristic that you would not see in a younger child. The child can be helped to develop a /s/ sound as their error is not that difficult to unpick. . A child with a disorder is not developing like a younger child, they are unusual and therefore you cannot be sure what will work for them and what skill they may acquire next. Obviously all children need intervention specific to them.

Hyperhelpmum Fri 10-May-13 20:00:36

He could screech but had no speech sounds not even animal noises. He could not imitate sounds either. He was very aware and extremely reluctant to try anything as everyone around him had been trying to get him to talk when he physically could not articulate sounds. I cant really go into too much detail due to confidentiality and could be 'identified' thus identifying him. It would be common practice to take focus off production and work on listening skills e.g. Child identifies sounds adults say. Also using sounds in play to take stress off child e.g. Weeeeee down slide, uuuuuuuup steps, b,b,b,b,b bouncy ball.

Asheth Fri 10-May-13 20:13:21

Hyperhelpmum, I would like to thank you for your posts because I have found them very helpful, being right at the start of my journey into speech and language therapy with my DS!

I am someone who has stated that I would find it much easier if he had a speech delay rather than a disorder. I am sorry if this has caused any offence. It was certainly not intended. Perhaps it is my own language at issue! If I am on a train that is delayed I know what that means - I will get there in the end, but it might take a while! So a speech delay, rightly or wrongly (and it may well be wrongly) is a more reassuring term. A disorder is a step into the unknown and so frightens me (again rightly or wrongly I have no idea!) But sorry if this attitude offends anyone. I certainly don't mean to imply that anyone else's DC is better or worse than mine, anymore than I consider my DC3 to be any better or worse than my other two DC. I think anyone who who has a DC with SN has to find their own way through the terms, diagnosis and treatments - there is no one right way!

But if I were to write to my MP about lack of SALT and he/she investigated he'd/she'd find that the SALTs professional opinion was that my Ds didn't need SALT and he'd subsequently be powerless to do anything.

Regardless of what your boss does or doesn't do/say, you still have to follow your own professional code, and that empowers you to either challenge your boss or at the very least be honest with parents.

Hazey I 'think' delay means that with an infinate number of years the child will follow the usual pattern of development and eventually get there.

However, they don't always live long enough, and brain plasticity becomes less flexible.

That's how I understand it.

hazeyjane Fri 10-May-13 21:01:20

Ok, I am tired, so I am probably not understanding. If ds has no speech, nothing, never spoken a word or made a sound that resembles a word, never made any ga, da, ma, sounds, has poor oro motor skills (drools continuously, always has tongue out, has difficulty eating and swallowing, and makes unusual tongue movements. Doesn't imitate any sounds, let alone an animal sound. But has good understanding, still delayed,but far exceeding his expressive speech. And most likely has a genetic syndrome in which many children and adults are completely non verbal or have severely limited speech.

Does he have a speech delay or speech disorder? (You can tell we have crap SALT provision, can't you - I could ring ds's SALT, but it would take a month before she got back to me)

MareeyaDolores Fri 10-May-13 21:25:16

It is hard though. People working in services can't offer what their criteria forbid. Even if those criteria are stupid, or illegal, the individual worker often doesn't have the power to bypass them. And when budgets are tight, there's plenty of incentive for rationing by thousands of mini-cuts.

For example, ds1's consultant might write '8 weeks' on the return-to-out patients form. This doesn't create an empty clinic slot for 8w hence. So the follow-up slot is actually booked for 16w.

Or ds1's consultant could recommend melatonin liquid via the GP, but the GP gets warned by the prescribing advisers (who look at quality, safety, and <drum-roll> budget) that it's an unlicensed medicine. So the doctor signing the prescription is personally liable for every adverse event. Outcome: refusal to prescribe on clinical grounds (true, but the underlying trigger was finance). Consultant's hands are tied.

I understand that. I don't understand lack of transparancy and honesty.

That is going to disempower parents and service users.

DD had an ENT appointment. The consultant showed me the criteria for grommet referal. He told me she would benefit but wouldn't meet the referal criteria. That is not the same thing as telling me she didn't need it.

So, I can live with the decision, pay privately, lobby the NHS/MP, keep an eye on her and ensure that should any evidence for the criteria appear it is properly documented and try again.

I have choices and I am empowered despite not liking the decision.

MareeyaDolores Fri 10-May-13 21:37:44

See, barring some high profile restrictions on IVF etc, the NHS till recently said it can give everything to everyone 'providing they need it'. Which meant staff always had to be fairly robust in telling borderline cases to go away. As people's 'wants' increased, they argued harder, and staff got better at rebutting the arguments for avoiding bunion operations etc. Not quite good enough to fight off the rising adult demand for expensive physical tests though.

And now, the culture of saying "yes-but-no-but" is so firmly entrenched that it's hard to bring in a more honest 'i think you you need it but you can't have it' and 'you're on the borderline and it's expensive, try again after April' and 'i'm sure you don't really need it but you'll probably get it'.

The answer? Cut services used by those least likely to fight effectively... Hmm, dc, those with SN, the poor, disadvantaged minority groups, families in crisis... Oh and cut SLT, those with communication difficulties won't be able to speak out too convincingly.

MrsFrederickWentworth Fri 10-May-13 21:47:07

Op

I have a friend whose dd has this. If someone says " we should exchange phone numbers," she says yes but doesn't make the connection to do so.

She is a beautiful and popular teenager.

Her parents have done a lot with her and with training including from. V top hospital I think she has made lots of progress. She is doing a full range if as levels. But transition to secondary was hard as they had only just diagnosed this.
And most teachers haven't heard of it.

Keep going and is there a support network from your hospital?

zzzzz Fri 10-May-13 21:48:03

If SLT could show themselves to be effective the situation would be very different. I don't think it can or has.

ouryve Fri 10-May-13 22:41:43

Star: "ADHD and Diabetes don't always need medication and I don't agree that medication treats ADHD, but keeps some of the symptoms at bay."

Exactly - DS1 is medicated for ADHD. He still has ADHD. He simply pinballs less and is less impulsive (and loody annoying!) with medication than without.

I've actually stuck out that coursera ADHD course and that is saying the same thing.

ouryve Fri 10-May-13 22:54:42

Delay vs disorder: DS1's speech is disordered. DS2's is delayed. We don't even know if it's doing to be disordered, yet. At 7, his typical utterances are along the lines of "I hitting!"

DS1, OTOH, argues the toss about almost everything. It often comes out a bit bass ackwards, but he's doing alright, really.

I would live it if DS2's speech was simply disordered.

It's such a pointless comparison.

Hyperhelpmum Fri 10-May-13 23:01:52

Star why would SLT say your child doesn't need it?

I'm sure you must know.

a) haven't a clue how to help
b) don't believe the child can make as much progress with your limited resources as other children.
c) haven't had the opportunity to do a full assessment and have chosen a bit of one that the child is able to do well at.
d) rather use the schools contract to deliver 40 hours a week to 40 children instead of just 3.
e) LA is pressurising to write a vague and unspecified report.
f) aren't enough SALTs to admit true level of need for every child.

Perhaps you could add some of your own.

How else coukd you explain Ds being discharged from NHS SALT for no SALT needs whilst an Indi SALT Dx significant language disorder and recommended DAILY SALT?

Wasn't just 1 NHS SALT that said no need either. It was 3, from 2 different PCTs ( though same LA)

Hyperhelpmum Sat 11-May-13 10:01:36

That sounds awful. I would strongly disagree with a) but the others are a possibility. How old is your DS, have you had any input at all? We never ever discharge children with language disorder. In our area it is children with global delay who receive the least input. We have a string SLI team which sees children with specific language impairment weekly or fortnightly in school. I'm sorry for lack of provision in your area. I can see it must be a nightmare for you and your DS.

moondog Sat 11-May-13 10:08:47

Star you of course have to remember that of course a private s/lt recommends more s/lt input than a public sector one. That is how they make their living.
The recommendations are judgements and nothing more. It's not a science.
You could have a poor s/lt seeing someone weekly for an hour who would be less effective than a competent one who sees a child once a term.

S/;lt isn't life or death stuff either, unlike many of the services offered by the nHS and I think any s/lt who considers themselves and their work as important as that of a nurse is flattering themselves.

It shouldn't be part of the NHS remit, but that of Education. That change in itself would iron out so many problems.

As with any service, think carefully about whether it would benefit you and your child in a measurable tangible way before taking it up. I have turned down myriad offers of input from many directions as I know they are about as much use as a chocolate teapot.

CouthyMow Sat 11-May-13 10:19:06

And why do DC's with global delay receive the least input? Maybe that's why my DS2 got feck all, as that was his dx at the time.

He recently saw a SALT again, for the second time. I wanted her to do a CELF test, and give me percentiles. She did snippets of two different CELF test, have me no percentiles.

All I wanted to know was percentiles so that I could see where his difficulties lie, so that I can personally help him with them.

The SALT said she would give me percentiles, but didn't. She picked two bits if the test that he did well at, but seemingly ignored the bits he couldn't do.

I'm a disabled Lone Parent, on benefits, Caring for 4 DC's, 3 with additional needs. I am trying to cobble together the money for an independent SALT assessment.

I shouldn't have to do this just to find out how to best help my DS2.

THAT is an NHS failure.

Why the eff did the SALT say he was fine and discharge him, despite the fact that he absolutely couldn't answer some of her Q's at all?!

Why the eff didn't the SALT do as she said she would, and provide me with percentiles?

All I left the SALT 'assessment' with was a discharge and a letter telling me to 'GENTLY' (the bold is from the letter) correct him when he constructs a sentence incorrectly.

Oh, and being told that his speech patterns are just immature because he didn't say his first word until 3.5yo, and didn't have a vocabulary of 20 single words until he was 4.5yo. He started putting two words together at 4.7yo.

Yeah, he's delayed, but WHY?!?!
That's IT. Load of balls if you ask me.

mymatemax Sat 11-May-13 10:20:15

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.

CouthyMow Sat 11-May-13 10:23:52

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.

Hyperhelpmum Sat 11-May-13 11:04:42

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.

Handywoman Sat 11-May-13 11:18:10

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.

Hyperhelpmum Sat 11-May-13 11:20:31

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.

Hyperhelpmum Sat 11-May-13 11:31:00

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?

Handywoman Sat 11-May-13 11:32:38

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.

zzzzz Sat 11-May-13 12:09:37

If you're asking what I would do. I'd run holiday clubs, where your children with salt issues could come together for a week, in a communication rich environment and receive continuous focused support throughout the day. Use these weeks to craft detailed recommendations for parents and teachers, allow the children a glimpse of life in an understanding world built for them not the nt, and show the adults in their lives what can be achieved through real differentiation.

I am another with a severely language disordered child who has been discharged from salt (again). I am less convinced of the efficacy of salt for language disordered children, perhaps because most recommendations are rather lack lustre and obvious?

PolterGoose Sat 11-May-13 12:12:17

Good points Star

I'd like to see swift assessment of needs prioritised, in a similar vein to what Star and Couthy have said, if our children are effectively assessed then we parents can do the work, most of us are quite clever and able! If we are guided to what is required we will get on and do it.

An example. After ds was dx with Sensory Processing Disorder, parents and TAs attended a course, 2 hours a week for 3 weeks, maybe 12 families, all given lots of information and resources. So, armed with a through individualised assessment of ds and the knowledge I gained from the course, plus a list of websites and a reading list, I was reasonably well equipped to go it alone in confidence. The OTs accepted they didn't have the time to do 1-1, but were happy to share their professional wisdom.

Similarly, SLTs must end up dealing with the same stuff with different families over and over, empower the parents, carers and teaching staff to do the more routine stuff, you can then focus on the complex cases. But don't under-estimate the skills is parents have, please.

zzzzz Sat 11-May-13 12:14:01

couthy. I'm not sure if it would help but I found "language for thinking" very good for identifying areas to work on. It's aimed at 4 to 11 year olds but their is a book before and a book after.

It's series of exercises (ie story then questions) and little tests to see progress and help you refocus. It's quite pricey but not like assessment!

MareeyaDolores Sat 11-May-13 14:11:54

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

MareeyaDolores Sat 11-May-13 14:20:17

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 shock 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'

MareeyaDolores Sat 11-May-13 14:23:22

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* blush <goes off to revise basic sentence construction>

MareeyaDolores Sat 11-May-13 14:25:44

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.

MareeyaDolores Sat 11-May-13 14:28:52

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

Hyperhelpmum Sat 11-May-13 14:44:29

What? Why PM moondog?

ouryve Sat 11-May-13 14:48:38

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

Hyperhelpmum Sat 11-May-13 14:49:34

In our area we always give standard/ percentile scores with an explanation e.g. A score of 10 average expected for age, scores between 7-13 within normal limits. Do not understand why any SLT would withhold a score. Zzzz I used to work for southward pct and we ran 'holiday' groups for speech delay, language delay, attention and listening and intensive ASD courses within a special setting with highly qualified staff, every summer. That was ten years ago and is rare but was fantastic. We run groups every term in our trust. We invite about 13 children, about 4 attend. No exaggeration. If you knew the DNA rate and how much time it wasted. It's infuriating.

ouryve Sat 11-May-13 14:53:52

Though it seems they only have a trainer in the Northeast, at the moment.

This is the course I did.
www.makaton.org/training/makatonForParentsAndCarers/beginnersWorkshop

There's info on finding a course linked there.

Why don't they attend?

We fought for intervention for ages. Finally ds was given a place twice a week at 'Opportunity class' run by 'experts' with visitng SI and VI teachers, a SALT and OT, with access to a sensory room.

After 3 weeks we stopped going.

It was shit.

I could see no benefit or relavance to my ds, and most importantly, not a single outcome from our 20min twice-weekly treck there and back with our ASD 3yr old and 18month old.

DS who is now 6.5 and had very little communication mentioned it just recently.

'Every time I said 'biscuit' they put one in my hand'.

LOL.

Thank god we left.

Hyperhelpmum Sat 11-May-13 14:58:21

Star, your son sounds incredibly complex. I find it hard to imagine no one can help. He may be resistant to therapy, some language disordered children are, in other words, how ever much input they simply are unable to acquire or retain the skills being worked on. They simply cannot grasp or retain the skills. Too disordered. That's not to say they will never be able to. Maybe you have just met inexperienced SLT's? I have no idea of your son, his history or his abilities so impossible to say. Maybe PM moondog who is apparently a senior SLT?

Hyperhelpmum Sat 11-May-13 15:04:26

I have no idea. They think their child will grow out of it? They have lots of children and can't find childcare, they feel school will sort it out. So many people referred say ' oh so and so didn't talk til they were 6, they are fine now'. This when their child is having all sorts of behavioural issues due to frustration and inability to communicate. Every single speech sound/ language group I have run (with colleagues, not saying I'm a super star) children make progress, parents thank us and say how useful and beneficial they have been.

'how ever much input they simply are unable to acquire or retain the skills being worked on. They simply cannot grasp or retain the skills.'

I absolutely don't believe this. Sorry.

'I find it hard to imagine no one can help.'

Me too. Sadly. But he really isn't complex, at least no more than any other child with ASD and disordered language.

I doubt a Senior SLT will provide invidual advice and therapy for a child she has never met over an internet forum, however good she is.

moondog Sat 11-May-13 15:06:30

'He may be resistant to therapy, some language disordered children are, in other words, how ever much input they simply are unable to acquire or retain the skills being worked on. They simply cannot grasp or retain the skills.'

That's not true.
If they can't grasp what is being taught it is either
1. inappropriate to their needs
2. not broken down sufficiently

It's a classic get out clause.
It's not working.
Blame the child and his disorder/delays/syndromes/pathological conditions
God forbid that the professional should stop and think 'Hmm. Maybe I'm not teaching it in the right way.'

If a child is resistant to therapy, you change the therapy surely, not give up on the child or dismiss them whilst blaming THEM for being unreachable!? sad

xpost

Hyperhelpmum Sat 11-May-13 15:07:55

The children I see with language disorder make progress every term. Seeing one in YR with no words in September, now able to say a range of consonant vowel words after weekly input from me, LSA attends sessions and carries it out daily with him in school (parents have never attended and do nothing). He has funding for an individual LSA. Just my experience but its not true that we do nothing and have no skills.

When my son attended a 6 week SALT group, I asked at the end what he had achieved. They gave me a list of things they said they had taught him. I then gave them evidence that he could do those things long before they ran their group.

They then said the purpose of the group was for him to act as a role model as the key target for him was self-esteem and confidence.

At no point at the begining of the group did they ever discuss with the parents the targets or the hoped-for gains for the children. They appeared to have made up a list of targets on the hoof because I asked and then changed them to something quite meaningless when I pulled them up on it.

I would be very wary of going to such a thing again now. And I doubt very much whether now I'd ever be asked.

Hyperhelpmum Sat 11-May-13 15:12:57

I did say maybe you have met inexperienced SLT's? I personally have not encountered this 'resistance to therapy' but have heard others talking about it. I have known kids who have zero attention skills, zero tolerance to new people and to adult led tasks. In that case intensive interaction would be great but its not something we can offer due restrictions made on us by others.

Hyperhelpmum Sat 11-May-13 15:13:42

Star it sounds shit. I agree.

moondog Sat 11-May-13 15:14:15

Most paediatric s/lt is ineffectual, as agreed by leading practitioners in our field
Cochrane Review (2009)
‘The existing research literature is insufficient to act as a base for a robust estimation of the costs and benefits of investments in services to children with speech, language and communication needs. Far more research is required to understand for whom and under what circumstances treatment is effective

moondog Sat 11-May-13 15:16:06

True to say though that the DNA rate (did not attend) is shocking but that is mostly in clinics which by and large are a waste of time. Child seen entirely out of context of his everyday life. That's waht's good about working in schools and also, if one kid not there, no time wasted-you work on something else with somebody else.

Hyper, You know what? I was so shocked at the treatment from the SALT department that I requested their qualification to deliver the therapies (Social Skills, communication groups and PECS) and was provided with them. The ones working with ds had over 10 years experience and were on various specialist panels that were relevant to my ds' difficulties.

So I concluded that those panels must also be full of incompetent people. The one that made me laugh the most was the PECS certificates. Unless they attended the course permentaly pissed I cannot imagine how they were getting it so wrong.

Hyperhelpmum Sat 11-May-13 15:18:46

Why would you invite a child to be a role model? That would waste a precious place for a child who needs help. Sounds insane.

moondog Sat 11-May-13 15:19:12

'I have known kids who have zero attention skills, zero tolerance to new people and to adult led tasks. In that case intensive interaction would be great but its not something we can offer due restrictions made on us by others.'

No it wouldn't. Intensive interaction is largely a waste of time and no evidence to suggest it aids people in building up a repertoire of useful s communication skills.

Johnny does nothing but sit and rock and flap?
Join in! Sit and rock and flap with him! Enter his world!

I have no words to describe my contempt for such ill founded 'therapy'.

On reflection I don't think he was invited to that group because he need it, but to shut up my complaints about them doing nothing.

Hyperhelpmum Sat 11-May-13 15:21:47

Better quit my job then! Why waste my time for bugger all money? ! Currently spend more on child are than I earn. After this thread it's clear we are not respected, appreciated or needed.

Hyperhelpmum Sat 11-May-13 15:24:55

Enlighten us Moondog, what do you do? Why so jaded as a senior SLT? I certainly feel your wrath and contempt on every post.

moondog Sat 11-May-13 15:26:04

Hyper, toughen up and stop sulking or you damage the profession further by reinforcing the perception that s/lts are precious and cannot take criticism or scrutiny of their profession.

Fight your corner!

Hyperhelpmum Sat 11-May-13 15:28:03

I have nothing to defend. I'm not sulking. I have stated I love my job and see benefits every day. I just think this thread is over for me. What else can I say. Put your money where your mouth is and tell us how you work moondog.

Hyper My experiences are real. I can't help that. Nor am I blaming your personally for it.

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.

Hyperhelpmum Sat 11-May-13 15:34:57

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 wink

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

Hyperhelpmum Sat 11-May-13 15:42:46

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!

Hyperhelpmum Sat 11-May-13 15:43:46

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! ;)

zzzzz Sat 11-May-13 16:05:11

I'm sorry your sick, I too vomit for England, so I know it's grim.

I'm sorry too not to be able to tell you tales of gratitude for SALT professionals, or wow you with results.

I have no experience at all of swallowing/physical issues with speech, but language disorder I do know A LOT about. I have had extended relationships with both private (though she was very experienced exNHS) and NHS SALT, and I've watched hours of therapy. My bedside reading probably covers many of the text books read for a degree, and my google history just shock.

I am not convinced SALT works as a concept or produces the returns people expect. I think lots of the things I do with ds and the ways I help him are products of this knowledge, but thats about as far as it goes.

moondog Sat 11-May-13 17:10:08

'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

.

MareeyaDolores Sat 11-May-13 18:08:14

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 wink

MareeyaDolores Sat 11-May-13 18:13:08

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?

moondog Sat 11-May-13 18:45:46

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

zzzzz Sat 11-May-13 22:18:15

Sorry that your for you're is painful. blush. I'm not sure why iPad which is SO good for so many things is SO difficult for me to type with.

I will do better.

CouthyMow Sat 11-May-13 22:50:59

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...

CouthyMow Sat 11-May-13 22:56:26

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

CouthyMow Sat 11-May-13 23:02:50

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...)

ouryve Sat 11-May-13 23:17:44

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.

ouryve Sat 11-May-13 23:18:59

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

moondog Sun 12-May-13 08:30:39

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

Hyperhelpmum Sun 12-May-13 08:53:00

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 hmm 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.

Hyperhelpmum Sun 12-May-13 08:58:53

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.

Handywoman Sun 12-May-13 09:12:10

Oh Star that's frigging shameful

moondog Sun 12-May-13 09:14:31

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? shock

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

ouryve Sun 12-May-13 13:34:42

That's awful starlight shock

CouthyMow Sun 12-May-13 16:09:49

That's the one, onedestran. Knew it started with an O! That was the one thing that kept me going with DS3.

And if one more person had suggested ginger nut biscuits, I can't tell you what I would have done with their fucking ginger nut fucking biscuits...grinwink

Hyperhelpmum Sun 12-May-13 18:48:27

I know!!! How the f am I meant to eat ginger nuts when at one point I couldn't even drink water! It drives you nuts! Have you tried eating little and often? No I just thought I'd be so sick I will be hospitalised twice for IV fluids. Stoooopid!!!!

zzzzz Sun 12-May-13 18:58:14

"Have you tried eating little and often". grin Good God so many of them are so much braver than they realise aren't they! I too spent time in hospital (grim).
I'll be honest I used to just puke and then go eat again by the end. It made me feel very sordid somehow sad, but seemed to slow things down.

MareeyaDolores Sun 12-May-13 19:15:05

Nice people put in a position of doing something nasty, will often turn against you. There's a handy theory called cognitive dissonance which explains it:

1) you hold a belief (I'm helping dedicated parents)
2) you do the opposite (lie to tribunal)
3) this feels bad (professional guilt)

Your options are to change one of the beliefs, change the action, or live with the guilt. Changing belief is the least hassle, so that's what usually happens. (These parents were unreasonable)

MareeyaDolores Sun 12-May-13 19:19:40

Hyper, it explains yours too!

1) I'm a good dr/ midwife, I must know how to fix this
2) Oh dear, she's on a drip and reacting badly to the medicine
3) This feels bad

New belief: not my fault, obviously she brought this on herself by eating wrongly, and wilfully ignoring ginger-nut advice.

moondog Sun 12-May-13 20:03:31

I think what I find most worrying in the Special |Needs industry is the almost inevitable kneejerk reaction of defensiveness when parents query or complain or persist in trying to get answers to something.
They really are seen as nuisances and trouble makers.
God forbid that the SN industry drones stop and think 'Hmmm. That mother seems pissed off. People are usually pissed off for a reason. I'll try to find out what is'

However there are of course everywhere a small core of people who are plainly unhinged and just enjoy stirring.

I don't doubt I was a nusiance, but I always asked reasonable questions and I was never rude (would they have ever have let that SALT do that if she was in danger/at risk!?)

I wrote them a SLA at one point of what I thought should be the model of delivery I got so sick of asking them what/how/why without getting answers. The Head of SALT informed me that I didn't run her service .

Looking back I cannot believe my front actually, but things were so shit and I was sick of asking things and getting vague answers months and months later that I had absolutely nothing to lose by being clear about the service I expected.

moondog Sun 12-May-13 20:15:57

There are a lot of folk who forget that public sector workers are employed to provide a service and that the service user is under no obligation to gratefully accept any and everything offered with bowed head.

MareeyaDolores Sun 12-May-13 20:16:02

Hahaha star, you didn't! grin

Actually, our area (being reshuffled) might find that genuinely useful, any chance you can pm me a copy? If they're re-doing everything anyway, they could take the opportunity to do it right wink

MareeyaDolores Sun 12-May-13 20:18:00

blush I do quite enjoy stirring
And am definitely (albeit covertly) unhinged grin

Yes. It involved me initialing every time they had said therapy had taken place, and I gave them 60% of their time allocated to ds for preparation and paperwork and travelling as I figured less than half the amount of input at a much better quality level was still going to be a massive improvement.

No idea where the document is now. Wondering if I may have dreamt it actually as it is no way like me, but me THEN is quite a different me now.

moondog Sun 12-May-13 20:20:49

I'm saying nowt MD. grin

By the way, I am really enjoying that book you recommended, 'The dangerous rise of therapeutic education'

Also need to post again soon about the fabulous Theresa from TAGteach returning to UK in September to do some workshops. I've got some very interesting research projects unfolding with this.

MareeyaDolores Sun 12-May-13 20:21:55

Ah, different SLA

I did wonder how youd been that brave. Still very funny though!

MareeyaDolores Sun 12-May-13 20:23:25

And if it ever turns up, am still interested....

zzzzz Sun 12-May-13 20:24:46

grin I am often generous with my (polite) advice. grin

dev9aug Sun 12-May-13 20:27:32

I am just shock at you lot.

I would never have the guts to do this. I do question people and don't take any shit any more but if I don't get the answers, I just don't bother with them any more.

MareeyaDolores Sun 12-May-13 20:39:53

Dev, it's only hard the first time wink

Moondog, can we do a RCT of allocating your trainees around the country (random allocation, waiting list can be the control group) grin

Well I'm thinning my paperwork atm as we are moving so the hard copy may turn up. It's about 3 computers ago so I doubt I have it electronically.

It prompted a VERY EXPENSIVE 1 hour meeting with 4 SALTS and me and DH.

Guess what though. Very little changed (though strangely they agreed to my initialling their work) cept they recorded said meeting as 4 hours or therapy and deducted it from my ds' allocation hmm

They gave it back though.

moondog Sun 12-May-13 20:44:02

MD, not as impossible as you may think.
There are about 50 p/gs looking for projects every year and many are distance learners so dotted around the country and needing to pursue projects near to where they are.

I match those near me with what I think is going to be useful for those I work with and so far, so good.

If you have any ideas, contact me or my beloved leader. Same goes for those of you who share my interest in behavioural applications.

BTW, I never had any real expectations from producing a document like that. I just wanted to show how WIDE the mismatch was from what they thought they were providing and what I felt they were REALLY providing in terms of outcomes.

It was an illustration document rather than a demand that I run their deparment I suppose.

DS' school have asked if a Consultant I sent in could go back. Won't bloody pay for her though, but it is hopeful.

One day you might get to place your students there. It's a good place - broadly.

zzzzz Sun 12-May-13 21:02:36

It's not really guts dev it's just that I want to know what they can offer and unless I grill them take a firm lead, things seem to drift in circles. This is primarily because they have very little to offer and don't like to 'fess up.

I am much kinder now I believe they "can't help because they don't know how", rather than "wont help because its too pricey". It has taken an inordinate amount of time to get to this stage and I would have been much more empowered if they had been more honest (and ds would be in a better place emotionally).

I do sometimes enjoy bouncing ideas around, and everybody has a nugget to add to my pondering.

Me too. In the end I thought I'd give it one last attempt before I gave up/ditched them. I really had nothing to lose at that point and felt I may as well tell them the terms of our engagement I guess.

I thought if I gave them a document they'd be able to explain why they couldn't do it that way/what they WERE doing/how they DID work, once and for all without having to wait months for vague responses and having to make the logistical arrangements to attend yet another sessions where all that seemed was happening was the SALT 'catching up' with me and then writing down anything positive as if they were personally responsible.

Anyway, at least I didn't go to a European Conference and insist that the Key Note Speaker posed for a picture with a giant stuffed carrot!!!!!!

bochead Wed 15-May-13 14:39:11

That particular carrot currently takes pride of place on my living room bookshelf wink.

moondog Wed 15-May-13 16:39:17

grin
How are ya Bochead?

Yes Boch, Good to hear from you.

Hope things are progressing swiftly to where they ought to be....

BigBird69 Fri 17-May-13 08:25:10

Hiya, I haven't read all the replies to your thread, but just wanted to say I have a son with exactly the same issue. His receptive and expressive language is affected. He has been diagnosed as dysphasic, the effects of a stroke at birth. He has problems learning to read and write too as he can't "sound out" words in his head to break them down into chunks etc. I also have the same problem with people (especially my mother!) telling me "he'll grow out of it" xx

CouthyMow Fri 17-May-13 09:41:40

Hey Boch! How are you?

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