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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

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

Hey Boch! How are you?

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

StarlightMcKenzie Wed 15-May-13 23:55:43

Yes Boch, Good to hear from you.

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

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

How are ya Bochead?

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

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

StarlightMcKenzie Sun 12-May-13 21:14:58

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!!!!!!

StarlightMcKenzie Sun 12-May-13 21:10:23

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.

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.

StarlightMcKenzie Sun 12-May-13 20:51:29

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.

StarlightMcKenzie Sun 12-May-13 20:50:11

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.

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.

StarlightMcKenzie Sun 12-May-13 20:42:04

They gave it back though.

StarlightMcKenzie Sun 12-May-13 20:40:44

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

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

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.

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

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

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

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

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

Ah, different SLA

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

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.

StarlightMcKenzie Sun 12-May-13 20:19:44

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.

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

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

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

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.

StarlightMcKenzie Sun 12-May-13 20:12:12

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 20:03:31

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.

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