Is Anyone else staying "outside the system" for their "different" child at present?

[lingle]

Hi,

I spend hours every day thinking about and working on DS2 (3.8)'s needs and language issues. So I don't think anyone who "knows" me here would consider me to be "in denial" (ugly phrase).

But whilst "receptive language delay" is definitely "part of who he is", and I definitely feel he has "special needs" I just can't say that about ASD right now, and so I've declined to enter the diagnostic process. Which is quite a scary thing to do though the paed. and SALT were very understanding.

I know there must be thousands and thousands of parents who keep their "different" child "outside the system" including one close rl friend (who's a psychiatrist!). Most of them never see a paed. so they don't have to refuse the DX as I have. But so many of them seem to shy away from talking to other SN parents and probably would find it hard to post on this board. There are late-talker forums and I find them a bit over-determined to prove practically every child on them hasn't got autism. It's unrealistic.

Is there anyone I haven't "met" like me lurking on this board? Or who complied with the NHS diagnostic process but feels their child has been misdiagnosed?

I think everyone on this board feels like an outsider in one way or another - and this is my way of being one!

I actually clapped my hands with delight when reading Amberflower's sample dialogue. Thank goodness - it is not just me.

I should say - I don't think my paed. is stupid or arrogant. I think she is a general community paediatrician who spends relatively little time on developmental issues. I think she has no time to find fine differences between the presentation of language delay and ASD. I think she assumes it would be in DS2's best interests to be diagnosed with ASD as he could then benefit from the amazing services on offer [sceptical](that bit is sarcastic - I've learnt a lot talking to mums of kids with ASD on this forum). I should also say that one day I may be banging on her door asking for an ASD DX - but only if progress reverses

Got it in one, Lingle.
These people are not bad or stupid or uncaring.
It just isn't effective.
I foresee a seismic change in the way kids with SN wil lbe dealt with in near future as current system utterly utterly unsustainable.

I don't let anyone near my kid, apart frpom her utterly utterly brilliant ABA therapist.

Kettle - that receptive language book - I had you in mind as I read it because it is aimed squarely at teachers and if Kettlecrumb still has a receptive delay come September it could be really handy for his reception teacher to have a look at.

So yes let's talk

tclanger, re M.

Once, when living in Prague, studying Czech several hours a day, listening hard to every word I could, I was walking one day in a crowd at the top of an escalator in the metro in rushhour with English boyfriend.

Lady stepping on to escalator says something - I try to process it - she starts to look distressed.

Boyfriend says - quick! she needs you to hold the other end of the buggy!

He wasn't trying to make sense of her speech so he got the whole message whereas I could have caused a disaster because I was so desperate to understand the words.

Do you think M is experiencing that kind of thing?

Interesting analogy Lingle.
I had similar on a tram in Russia (ooh, get me!) when we lived there. So busy trying to work out what tense a woman was talking in, I completely missed the message which was
'Get out of my bloody way, I'm trying to get off!'

In SALT circles, we talk about Form Content and Use which we represent as three intersecting circles.

Would hasten to add that you will all have to get 'in the system' at some time to access help via a statement, which is of course a legal document outlining needs and resources to address those needs.

That is, if you want a satatemnt (and most authorities nowadays lie, and say you can't have one)

Moondog - re erring on the side of caution.

Paed. said at one point: "as a lawyer, you must understand my duties to say these things to you".

I think she meant "I have a duty to advise on things you don't want to hear".

But I thought - oh, of course - you're just like a lawyer. Tell the client the risks and the standard advice and you'll know you're safe professionally, even if really you don't have much to say that will add value to what they already know. Whereas if you follow your instinct to trust them and they're wrong you could get in trouble".

All very understandable and this is why I like being self-employed.

Re Statement.

Statement presumably = application for extra staff member for X hours a week.

Does it say somewhere that you can't have one for receptive language impairment? Tclanger, apologies, but can you explain one more time why you haven't got one?

Lingle, the whole 'statement of special needs' thing is a whole other marathon to run unfortunately.

Most authorities flout law outregeously and tell you all sorts of lies. (I am not exaggerating.) I have one (a fantastic one) with no diagnosis.

Yes Lingle.
Yes, yes, yes.
Everyone so busy covering backs and proving they have ticked right boxes/met targets blah blah blah that commonsense out of the window.

Thanks moondog. Might need to ask you a bit more about that some time......

If it is anything like the lies told about school starting age then it's going to be pretty murky......

Hi Moondog!

Sorry just wanted to check what you meant by I have one (a fantastic one) with no diagnosis.

Just trying to keep up with this thread and amy dying to know what one you have...

My dd got a statement for speech and language delay at 3 yrs old, that's how she got into the SALT unit.

I meant a fantastic statement (in that it has on it what I want for my child).

My kid is fantastic too though!

Extra help is dangled as a carrot to encourage us to seek a DX, but the help available is often limited or unsuitable (I am speaking about my local area), for example, the grandson (with a DX of AS ) of one of my mother's good friends was offered a lot of help choosing which high school HE thought he would like to attend, he chose a particular school because he had liked the ASD unit attached to the school when he was shown round, only to find out that he was not allocated a place in the unit as he was not badly affected enough, he is not coping in the ordinary classroom setting and is very unhappy.

Amberflower, I know what you mean about proffessionals pathologising normal behaviour, when DS2 made a spontaneous attempt to engage her in conversation his SALT somehow turned it into further proof of his difficulties, I was very on his behalf as it was a bit rude of her to say negative things about his chat in front of him.

Help is all very well if the foot soldiers there to do it are a.) trained and b.) paid properly. Neither is generally true however.

Many teachers of SEN have no training either or any idea of how to teach kids to learn who are finding it hard.They then bring more people into the mix so as well as it being ineffectual in the first palce, there are also a great many people saying slightly (or even very) differnet things, troooping in from Health, SS, Education and so on.

Teaching kids who are finding learning hard is really hard work and academically very demanding. You need to have a really solid theroetical grounding before you can even get out flashcards from 1-10 in actual fact.

I see stuff every day that while well meaning, would make your hair curl. People with no bloody idea, and more worryingl,y no bloody idea that they have no bloody idea.

It is scary Star.The industry has grown massively and understandably Education Authorities want to cut back on statementing as it a.) is the only way they are legally held to account and b.) it costs a packet and there are no maeasures of their efficacy (and most aren't particulalry useful.

But if they put more time and energy into training fewer staff properly and training parents to help their children, it would be cheaper and more efficient.

Maverick (17 November 2008 8:58) posted a link on this thread to a fantastic paper about the rise of the SEN 'industry'.

Highly recommended and very easy to read.
A real eye opener.
We all need to wake up and smell the coffee, people!

Hi, I'm new. Been reading this thread and would appreciate if anyone on this thread might have a quick look at what I posted called , "Any comments welcome...". Just about to struggle with issues of statementing and the need for a 'label', myself. Any mumsnet protocol tips also gratefully accepted. I'm sleep deprived and slow to pick up on things.

What topic is it under?