Communication disorder is NOT a delay!

[Skelosia]

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

To bring you up to speed:

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

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

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

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

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

Anyway, hello

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'.

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!

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?

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

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!

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.

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.

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.

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)

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 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.

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.

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?

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.

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.

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)

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.

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.

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.