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

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.

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.

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?

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.

'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!?

xpost

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.

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.

Star it sounds shit. I agree.

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

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.

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.

'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.

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.

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

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!

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.