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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

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.

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