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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

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.

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!!!!!!

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

How are ya Bochead?

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....

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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