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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

Hyperhelpmum Fri 10-May-13 08:22:43

Yes zzzz i guess that word is wholly unhelpful as many children with difficulties understanding and using language have normal IQ and normal development in all other areas. I still think in the past any delay was described with that word, even though we now understand it is not an accurate description of the whole child. Glad it helped Couthy. The sentences you gave weren't actually disordered as most if not all children use 'i' is or 'me' is. Is it your children's speech as in the sounds they produce or way they produce a word or their language the words they are using? I only ask as we do see lots of families where more than one child struggles with their speech sound production. It's not as common but we do see families with language difficulties too. Again, not your fault at all as you see from your first child.

Hyperhelpmum Fri 10-May-13 08:30:58

Just in addition, SLT's will term speech difficulties delay if the sounds or errors are typical of what most children do but grow out of e.g. Using /t/ instead of /k/ as in cat becomes tat. Most children will start with tat, tar, tee for cat,car,key and then correct it quickly as they gain experience. They also miss off /s/ so snail is nail, snow is no etc. if you have a lot of these delayed elements together in a 3 year old they can be impossible to understand if speaking out of context. If they are making errors we would not normally see in typical development e.g. Using a /g/ which is a relatively difficult sound for a small child at the start of every word, or errors in vowels, that would be described as unusual or disordered speech sound development. I think it should be explained at appointments, I always try to as it is confusing and worrying.

zzzzz Fri 10-May-13 09:08:53

I'm having a lot of difficulty with some of the views being expressed on this thread, and am finding it hard to express why.

A huge variety of Mums post on this board and this shuffling about between dx as though some dx are intrinsically "more" or "less" makes me feel a bit sad.

Language disordered children are not intrinsically better off than delayed children or vice versa.

Language disorder/delay is not a better dx than ASD, in fact outcomes can be considerably poorer.

Speech and Language difficulties are very different issues, one with the production of sound and one with the structure and meaning of language.

Neglect as a cause of profound language difficulties is relatively unusual, because most infants pick up language with very little effort.

zzzzz Fri 10-May-13 09:09:40

HyperHelp do you practice in the UK?

'Ps delay is used in the place of the very un pc phrase retarded.'

No it isn't. Not any more than calling someone 'black' is, as they were often also called retarded, - not all that long ago.

'Imagine if Stephen Hawkins had been born in another time. You can't always predict a child's outcome from a label given by medical professionals in early childhood.'

I think it is naive at best to suggest that Stephen Hawkin's development and achievements, whilst no doubt hard work, weren't available to him because his family had considerable resources.

'You can't always predict a child's outcome from a label given by medical professionals in early childhood.'

No you can't. But no-one tells you just HOW MUCH of the prognosis is dependent on the family and their resources. And in order to use the resources you have in the most effient and outcome-driven way, you have to have a clear understanding of what exactly the issues are, and use shared terminology so that other people who come into contact with your child can understand too.

You would not refuse a 'label' of epilepsy, or diabetes.

PolterGoose Fri 10-May-13 09:40:41

I don't know enough to comment on the speech and language stuff being discussed here but am somewhat aghast that a professional would use the R word here.

Skelosia what you've described in your posts really does sound like an ASD assessment is warranted. At our first paed assessment my concerns were dismissed and the paed registrar started off adamant that ds did not have an ASD. Because I knew the various diagnostic criteria and had done a lot of reading, because it was glaringly obvious even to my inexperienced eye that ds had an ASD, I pushed for assessment. And, unsurprisingly, yes he does have an ASD. Also ha sensory processing disorder which I would say is more debilitating than his ASD in many ways. Have you seen an OT? Ours have been fab with the sensory stuff.

Whilst an ASD dx won't result in miracles, people will take you more seriously and your ds may benefit. It is common for developmental differences in children with ASDs to be increasingly apparent as they get older, sometimes it won't be until adulthood that problems come (eg if you're lucky enough to have decent schools who support based on need etc), but it is very hard to get a dx as an adult and the risk of anxiety and mental health problems in adults without a dx is high.

Sorry that sounds a bit evangelical, obviously it is your choice, am just trying to point out some advantages.

CouthySaysEatChoccyEggs Fri 10-May-13 10:38:46

They don't tend to talk like that at 7/8yo though, do they?

And it's not just that - it's hard to explain, but he uses phrases in the wrong context now he's 9 and a half, his sentence construction is still 'not right' IYSWIM.

I can't think of specific examples, but 'disordered' describes it far better than 'delayed' does.

Things like "help you shall I" instead of "Shall I help you". Or "dinner what is it" instead of "what's for dinner".

There are many examples I have that describe it far better, but I don't know how to explain them! Maybe I should try to think about that.

CouthySaysEatChoccyEggs Fri 10-May-13 10:49:17

The 3/4 that have had speech difficulties, two of them have dxd dyspraxia and 'Autistic traits'. My DS2's HT describes him as 'quirky'...

The best way to describe what has happened with all 3 of them is to use 2yo DS3 as an example - At 21mo, he had NO speech, not even babble. At 27mo, he had just 10 single words. now three weeks later, his speech has suddenly increased, still only single words, but I have to teach him each new word reeeaaaaalllllyyy slowly.

Like saying "sssssssssssnnnnnnnaaaaaaaakkkkkkke". He now pronounces it as "snay". All 3 of them with delayed speech missed out middle bits of words but got the beginning and end, or they missed off the end of the word. They always got the first letter sound right, once they did start talking.

It's VERY slow going though, and I have to slow the speech down to around one word per minute!

In three weeks of doing that, he has gone from saying just 10 words to having 40 words that me and his dad can understand, but nobody else can understand more than around 5!

But it's a start. grin

My DC2, my DS1, who is 11yo, never had any issues like this, could speak in full sentences at 14mo, no missing bits of words etc.

I didn't talk any less to DD, DS2 and DS3 than I did to DS1, and conversely I didn't talk any more to DS1 than I did to the others.

It wasn't my first DC that had excellent speech, it was my second of four.

CouthySaysEatChoccyEggs Fri 10-May-13 10:52:48

"Heart" is "hut", "nine" is "Niy", "ten" is "teh", "milk" he says "Mik", "Tree" is "tee".

It's all really odd, like he can only hear 'bits' of the word at a normal speech speed, and even at a slow speech speed. It's like he only hears the whole word at an incredibly slow speech speed.

God knows what that is, but DD and DS2 are/were the same.

confused

Skelosia Fri 10-May-13 13:56:01

I am taking on board ask the advice about d perhaps being asd. Perhaps I will investigate further. I don't see his SLT often anymore, a she us happy that we are coping and dshas the right support in place. But I do agree with zzzzz that it depends a whole lot on parents and resources. I ask his TA fir additional exercises, and she us usually compliant. We are doing well on that front to be fair.
It is a Shane you are upset by some of the views expressed*zzzzz*. That is either an issue you have, our our views aren't expressed effectively. My views are my way of trying to work through my own feelings about being a mother of a child with SN. You will see that they will undoubtedly change.

ouryve Fri 10-May-13 16:00:07

That sounds like phonological disorder, couthy - which, of course, is a manifestation of auditory discrimination difficulties.

zzzzz Fri 10-May-13 16:14:01

Anyone who comes on a support board for children with sn and says words to the effect "oh you wouldn't want him to be called that, that means "retard" and you wouldn't want that for anyone" is unlikely not to upset others reading the thread. hmm. I don think it is an issue I have with dx or that you haven't expressed your thoughts well. It is that I don't agree.

skel it sounds like you are happy with the support you boy is getting which is great.

zzzzz Fri 10-May-13 16:16:28

couthy if you are interested in auditory processing a poster called dolfrog used to post lots of research papers and information on it. It might be worth a search??

Yeah. I kinda miss dolfrog. Hope he's doing okay.

Hyperhelpmum Fri 10-May-13 17:48:31

People please read the posts I did not use the 'r' word but referred to it being used in the past and referred to how awful it was. I mentioned it as felt the OP did not fully understand the term 'delay' and somehow thought it was preferable to disorder. In the past doctors would say a child had 'retarded language development' that is a fact, I have read old reports etc. I do not condone the use of the word and would never use it as I made clear. I also did not say you wouldn't want him labelled that, I'm saying the same as you zzzzz, that no diagnosis is better or worse. Read the posts. I said labels are not always helpful as have seen dozens of parents chase a diagnosis and in the end find it does not change the realities of their child's difficulties. This is my personal experience with my son too. His dx has not changed the difficulties we have with him at all. The OP was saying delay is not disorder and I'm making the point that one is not worse and parents input is more important than a dx. Of course a ex can help target input but actually a lot of parents learn organically how to manage their child so the dx is not the be all and end all. I strongly resent people misreading and misquoting me. Zzzz I never said oh you wouldn't want him called that means retard. You are misreading my post and if I was unclear I apologise. This is my life and my job. I would hardly be posting such things!

Hyperhelpmum Fri 10-May-13 17:52:17

Just re read my post which was in response to OP saying she would choose delay over disorder, I said you would not wish delay on your son as in why think one is better or worse than the other. You have to read all the posts in context or they can be misconstrued.

Hyperhelpmum Fri 10-May-13 18:02:08

Zzzz I knew mentioning that word would get people's back up, I feel exactly the same and said it was very un pc. It is not something anyone involved with SN children would ever say or feel comfortable hearing to describe children. I used it to illustrate to OP that 'delay' is no better than 'disorder' as I felt she was misinformed. Anyone who says they would pick one dx over another does not fully understand the dx being discussed. I do. I was trying to use layman's terms as even after my first post where I described the difference between delay and disorder, OP still said she would choose delay over disorder.

Hyperhelpmum Fri 10-May-13 18:04:54

Sorry my pc keeps posting before I finish! Clearly the 'r' word is not laymans terms but I felt OP might get the gist of how seriously a 'delay' can impact on a child's life. It is not the better choice for any child. No one wants their child to have difficulties but you cannot choose a better one to have. That's all.

'I said labels are not always helpful as have seen dozens of parents chase a diagnosis and in the end find it does not change the realities of their child's difficulties'

How so? I have found the opposite, in that having a Dx changes the realities for the child in the parents ability to advocate for them. Without Dx, resources and support are usually denied.

You woukd not give insulin injections to a child regardless of how adamant the parent might be that it is needed unless you saw a Dx of diabetes, even if fir the majority if the time the parent is expected to and can manage the condition with diet.

zzzzz Fri 10-May-13 18:23:45

Clearly you were aware of how offensive retarded is but chose to use it anyway to make a point. The reason I asked where you practice is I have never heard any professional use that sort of tactic. I am however aware that there are cultural differences and wondered if that was coming in to play.

I think if you use this approach with clients it may not build the kind of relationship you would need to be of use.

PolterGoose Fri 10-May-13 18:28:16

FFS yet again, can I please remind people that it is not a label, it is a diagnosis

It is really insulting to suggest that my child's medical diagnoses of conditions that disable him considerably are just labels angry

MareeyaDolores Fri 10-May-13 18:31:39

Whether diagnostic terms become insults depends on society. In the last 100 years, pretty much every term used to describe a person with a cognitive disability has evolved into a 'loaded' term carrying some negative connotations. Words which started off neutral (and re-tard-ed is from the Latin for 'late') are transformed into weapons. There's a bit more detail here

No different from 'gay', 'queer' etc... except that as society changed, brave individuals decided to reclaim that vocabulary.

What's all this 'people'?

People, I am opening a bottle of wine - oh yes! It's after 6!!!

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