I want to "assess" where DS2 is before the SALT assessment tomorrow

[lingle]

A SALT more specialised in receptive language delay (probably from an ASD unit? who knows) will come to assess DS2 (3.2) at nursery tomorrow. I know it will be more negative than how I think about him and that's ok - doing her job, etc.

Is there any accessible information that would help me find out what kind of place on the speech centile charts he would now be on if my "mum" assessment is right? I'll probably be a bit down after the assessment so want to think it through now.

This is how I would see DS2 in a "snapshot" right now, (sorry so long). If you remember my first posts you'll see how much things have changed....and I really do think that depriving him of recorded music has made part of the difference. It's like a drug for him!

receptive speech:
DS2 understands everything I say to him about our daily routine. He understands my 3-word sentences ("give a banana to DS1")in context. He can understand simple instructions from a different room ("DS2 come back to the kitchen and put your plate away please" REPLY "ok"). Have told DS1 he no longer needs to use 1 word at a time (DS1 did this instinctively to help) but can use sentences.

expressive speech:nearly 150 "real" words now (I said 200 on here in July - I was so wrong! I was just coaching him! but now it's qualitatively different). About 20 of them verbs with 20 other more "not quite consistent" verbs coming.

combining spontaneously into 2-word sentences with more fluency and variety every day (DH noticed a difference after being away for a week). These are increasingly natural-sounding eg "whatsthematter DS1" when DS1 burst into tears or "mummy got hurt" when I say "ow!" after being jumped on by DS1.

still uses a single word to represent the word he can't think of eg when tired he will use the word "open" instead of "cut". Many examples of this. Many overgeneralisations still. eg his water words are "water" "bath" "sea" "puddle" but all other bodies of water such as rivers, waterfalls, streams, etc are described as one of these or as "splishsploshsplash". So doesn't have a word for everything in his life yet (we live by a waterfall, stream, pond etc)

names family members spontaneously with ease ("hello daddy!"). Starting to do the same for other children. But if DH says "hello DS2" will still say "hello mummy" in reply (overgeneralising again - he used to just repeat and it was hard for him to learn to say my name instead of his own). Uses own name in sentences.

Echolalia fading - appears when tired or insecure or doesn't understand someone. Rare now with me but still uses assertive tone + repeat language instead of "yes". Starting to say "yes" before the assertive repeat but this is very much learned not natural to him.

Understands the basic "who" "where" and "what" questions. Just starting to understand answers to where questions that involve "school" "work" or other places that he can't see. Progressing fast here. Always answers "what can you see?" appropriately. Nearly there with "eat" "hold" and "wear" but still muddles them when tired.

No "why"or "when" questions yet. Progressing but not there yet with "shoes on first THEN park" and other two-event sequences. Understands "it's time to" but still doesn't always understand the description of where we're going next.

Just starting to get to grips with under/over on/off etc. Good with up/down.

Lastly, the grandma test: my mum says "this child talks just as you would expect a two-year old child to" (ie she found his speech pretty "normal" but a year or so behind other kids his age when we spent a week with her).

Other areas. Doesn't initiate socially with (new)nursery peers yet. Passive and quiet there. But joins in any physical game initiated by others (involving bouncing, falling, giggling, etc) with great skill, great care for others' space and excellent turn-taking. Visited "old" nursery friend and they trotted off together up to the bedroom after 10 minutes' hesitation (it was his first time in that house) and did about 10 minutes cooperatively on the train track.

Initiates socially with family and especially brother all the time.
When alone, "role-plays" conversations with brother (hardly sings now! poor thing! his cruel mother wanted him to talk instead! My psychotherapist neighbour thinks I'm terrible!)

Understands all my tones of voice and facial expressions. Understands when I'm joking, cross, playful, teasing, etc from either of these. Switched on and engaged with me at pretty much all times even if engrossed in trains or listening to music. There is no activity I can't join in. Not in a bubble. Not in "own world"

Not the most imaginative child but happy to play along with "doggy" going to sleep, waking up, etc. Pretends objects are other objects. Now pretends to be a "monsta" by holding out arms and making monster noise. Wants me and others to look scared and scream in response. It doesn't matter if we don't run away so he understands the meaning of the game is more than physical. When DS1 is a "monster", DS2 pretends to be scared and runs to me to pretend he needs protecting from DS1 but also laughing.

Fascinated by numbers, loves looking at the second hand on the clock, identifies speed limit signs and traffic light colours all the time. Since the days got shorter, adores turning the lights on and off. Lights on and off is the obsession. Does it about 50 times a day if nothing else is going on . Also flushes the loo about 20 times a day. Will pester to be allowed to do this at other people's houses.

Apologies and thanks to anyone who got this far....

Tclanger. Do you have a clear idea of the benefits (therapeutic and emotional and for the whole family) of an ASD diagnosis as opposed to the one you have? I guess that's what you have to weigh against the further trauma. I so hear what your DH is saying here and I'm glad the two of you talked it through. The dad's voice has to be heard too.

There was always a sense of something over my family. It took me until my 30s to realise that the word is "shame". Shame because my father was weak, my mother was obsessed with a rigid idea of what her sons "should" be like (and when they weren't like it she retreated into a bizarre obsession with a different family for about 10 years) and my elder brother was "wierd". Later more shame because my second brother was stricken with really awful acne. I do think my elder brother has probably got mild aspergers. It would have helped my inarticulate father so much if there had been an explanation and therapy and support.... as it was, my father was just silently confused and upset about what my brother was like and once every two years or so he might say something like "do you think your brother will ever get married?".

At that time, though perhaps not now I think, applying the word "autistic" would have simply swapped one kind of shame for another kind. My family would have thought autism was something to be ashamed of (please don't confuse what I'm saying. I'm not saying I think this). But if my parents had been told that he had a problem with social communication and that certain exercises and therapies and coping techniques would help, then that could have made all the difference.

Given my family background, if I felt for a minute that DS2 would be more vulnerable without a diagnosis than with one, I would be fighting for one. As other parents on this board have done. That's what matters really isn't it? And no one will close that door on me. And usually I find I'm part of a rising tide when I have strong feelings about a topic such as, in this case, the desirability of a problem-based approach. But it isn't like that. Trying to give positive examples on this thread is hopeless because there is no one positive behaviour that is never seen in autistic people so I've given up trying to summarise why I don't think at present believe DS2 has underlying problems with social communication and flexibility of thought beyond those imposed by his limited language.

There must be historic reasons why the descriptions of the "ASD" conditions are so muddled, but muddled they are. Discussions on this board are very helpful. The sensory processing model that jimjams and bullet and amber discuss is logical and appeals to me because it has coherence and simplicity. But a SALT playing at diagnosis is bloody unhelpful and has cost me three nights' sleep.

I think I need to shut up now. I hope people find it healthy to hear this point of view aired. Thanks again for all your support. In not too long I'll start a nice positive thread asking you all for your advice about how to help nursery "meet" the DS2 that I know and love.

Sounds like many of us have relatives who have autistic tendencies, even if they've never been diagnosed.
MIL informed me today that dh apparently used to cover his ears and eyes an awful lot as a child in situations where he felt uncomfortable. They assumed he was just "a weird child." He also muddled up sentences until he was well over 5, had little interaction with other children and liked to do his own thing.
Hmmm. It's odd how despite endless conversations about my concerns about ds1, they suddenly drop a nugget of really useful info about dh into the conversation..
Mind you, that was interspersed with a comment on how they thought I was "making a fuss" in getting so many professionals involved with ds.. Ho hum

I had been wondering what your MIL thought Kettle...have just posted on your other thread.

TClang - very sorry to hear about BIL's sad experiences. Glad that you and DH have had a "meeting of minds".

Lingle - as for aspie tendencies - DH is a trainspotter - need I say more .

I am grappling as well with the issue of whether to push for more paed appointments, or to leave things in the hand of SALT. As his speech has improved, SALT has less concerns about his social communication. The downside of a DX would be it might make it harder to access a language unit - at the moment DS is doing fine at school (very little support but v high teacher/ta to kid ration). My concern is if things start to come crashing down in the next year or two, once the school work gets harder/emotional and social demands increase, would it be better to have a DX ready just in case, rather than deal with a crisis when it happens. TBH part of me wants to stick my head in the sand as well re:DX, which is not a good reason not to pressurise.....

I think the important thing to remember is that we all want to get as much help for our dc as possible and we all have to access how we do that in our own area.
We were at a preliminary statement meeting today with headteacher and in our area any learning difficulties only get 10 hours support in reception, EXCEPT ASD which gets full time support always. I thank the lord above that we have an ASD dx and that ds should get full time 1-1 suppport in reception. It will totally give him the best start ever and the label is just a tool that allows this to happen.

If (and it's a big if) your 1:1 support is appropriately trained Nikos. Many know fuck all (through no fault of their own) and can actually be damaging.

Again I'm thankful the ds current 1-1 wants to continue with him. Shes not an expert by any means (schools are more or less paying minimum wage here so I absolutely take your point that it could be someone dire)but she has a nephew with ASD who she has very close contact with and has an intuitive sense of what works. He is also in a pre school unit which is led by a hugely gifted teacher.

Lots of things coming together have made this a really special year for ds. Last year was really dire, his 1-1 was the worst combo-someone who thought they knew about children with 'special needs' but was absolutely shite. It was a dreadful year for us all. So you are totally right. It hugely depends on the quality of support. I only have to think of last year or see his TA and feel my hackles rise.

Well it's great that you have a good 'un this time.

Good points about local variations. We are all coming from different places on this (in more ways than one).

Still thinking about my brother. He's only got one long-term friend I know of, Jeremy. My mother was in the supermarket one day a decade ago and met Jeremy's mother who said "Jeremy and I will always appreciate the support your son gave us when Jeremy's brother died". Needless to say, we had no idea Jeremy had a brother, let alone that he had died. Perhaps it was only at a time when social niceties didn't matter a damn that someone like my brother could be seen in his true light.

He's a great uncle, but not the boys' favourite uncle. He is surprisingly good with very young children, perhaps because they don't expect the same social skills.
I think his quality of life could be greatly improved if he would get a dog, but I'm not sure if he would make that commitment. He loves my parents' dog and is the only person other than my dad that the dog will go for walks with!
I think it is too late now for any kind of therapeutic process to help. He's in his mid-40s. Probably the best thing I can do is NOT move to America (DH is American) and continue to host an extended family Christmas each year so he always knows he has a place to go.
Thank goodness he has the cricket commentary - loads of people are happy to hear about that.

My mother, in a rare thoughtful moment, once said to me sadly "you should have been the eldest". She's right. If my brother had had a big sister or brother to shield and guide him in the street among the kids and show him how to cope, it would have made all the difference. As it was, he had a brother 18 months younger who was always "in the gang" so it made his own awkwardness and inability to fill the role of older brother more painfully obvious.

Nikos, thank god things have improved re support (as opposed to "support" last year).

I think that in almost all professions the ideal is to have someone who really knows what they are doing and tunes in to your child.
Next best is to have someone who doesn't know at the beginning but has an open mind and a willingness to learn
Worst is someone who may know quite a lot but is not tuned in to the person they are working for/with.

Moondog, I am so glad you post.

Total, re your decisions, how do you factor in the issues described in the various recent "autism is not catching" threads in the "behaviour" section about other people stigmatising a child going through a diagnostic process? Someone described a painful vicious circle - the child needs to practice peer group interactions but other parents resist these because the child "has autism"

I just keep away from NT parents who can't cope with autistic kids to be honest. There are plenty of lovely people out there who are able to cope/understand/be sensible that I've found over the years it's just not worth stressing about those who can't. And ime they don't suddenly have a eureka moment and understand they won't ever get it.

There's a big advantage to having something to 'filter' people- you end up with a rock solid bunch of friends.

Lingle - the twat factor doesn't bother me - as I would only tell people I really trust (vast majority of whom are family members or online so not going to gossip about me) about going through diagnostic processes. It's not something I would tell the neighbours/schoolyard mums at this point. I am far less coy about telling people who may need to know that DS has language delay and difficulty understanding all that is said as that if not blindingly obvious is something they should know so they don't think DS say is being deliberately disobedient or awkward

Why thanks Lingle.That's nice to konw.
I don't post a great deal about my own circumstances (dd has SLI) but believe me I empathise depply as a SALT and a parent.I have been throguh the worst year of my life fighting to get her appropriate provsion.

You would not believe what I have gone through to get her what I have. It has resulted in me having to bring in the union to protect me at work and urging me to go through formal whistle blowing procedure, bringing an Indpendent Review against the very directorate that employ me, the Community Health Council and finally, the resignation of a very senior person and a major overhaul and investigation of provision. All this on top of a f/t job, dh being away for 6 weeks at a time, looking after 2 children and running a business and studying for an MSc.

Anyway, I know have a wonderful package. All difficulties are resolved and we know have a wonderful service not just for dd but for other children. Al lthe while, the though whirring in my head is 'If it is this hard for me, a person who has worked in this field for 15 years, knows the score, knows everyone and so on, what the hell hope is there for anyone else??'

If my knowledge of the way things work can help even one person avoid a tiny percentage of the pain and misery I have suffered then I am happy.

The internet will be one of the biggest facotrs in giving the world of SN the gigantic boot up the arse it needs.News travels fast and parents will learn so much from each others experiences. I have lodged a copy of my (now utterly fantastic) statement with the local SNAP office and my solicitor who works in this filed and have directed them to show it to anyone who needs to see it for inspiration.

A tip:
If you are not happy with current provision, start talking about 'evidence based practice' and lack of it. A massive buzz phrase in this field now. Put simply, it means 'Where is the evidence to back up what you are giving my child ?

95% of the time, there isn't any. It's just a hodge podge 'throw and see what sticks' mess of piecemeal provision.

Very useful i case of those wanting ABA as no other intervention has such an enormous evidence base.

One more to add to your list Lingle

Those who think they know a lot and bang on about their years of experience yet who work solely on pre-conceived ideas.They are the most dangerous of all.

I have no problem with people with no knowledge or limited experience.These tend to be those who are open and learn fast.

Sorry to hear about that battle Moondog. Sounds like you've experienced direct bullying at work as a result of your desire to help others. But clearly it has inspired you to keep helping the rest of us for which I think everyone is profoundly grateful.

I'm so glad your daughter is now getting the help she needs. And that you've been audacious enough not to back off once your own family had help but to fight for others too.

And yes, that last category definitely goes at the bottom of the list. (it's the same in law, btw! You're only any good if you're constantly willing to learn from the clients)

I can well imagine lingle! Know alls are so dangerous.
After my monumental battle, I was asked by quite a few people why I never went into law.
(I also uncovered some downright illegal practices that it is probably not wise to go into here but which very quicckly involved a higher echelon of govt.)

Sounds hard.... it's horrible to have a constant sense of fight and drama...... and harder still to double it up with being the relaxed parent you want to be with your child... are you still feeling like a tightly wound spring? you sound like it could be a while before the tensions slacken....

You sum it up so well Lingle. The constant tension and worry. it truly was beyond my wildest wildest nightmares. I never before dreamt that things could take such a sinister and dangerous turn.

I got through it by running a lot and walking a lot and going to the gym a lot.Exercise saved my sanity.Oh and knowing it was/is my duty to fight for my dd with every fibre of my being.

Anyway, all really lovely now. Life peaceful and delightful. I'm about to make a percan pie with the children.

Oh and while I am online, would just like to point you in direction of a couple of great catalogues that are jam packed with useful (and fairly inexpensive) resources. It is ridiculous to assume that only professionals should have access to this stuff. Any reasonably intelligent parent could pick out suitable stuff.

Taskmaster

Winslow Press

Don't bother trying to trawl online.Ring and ask for a catalogue.It's terrific reading. (Honestly!)

"It is ridiculous to assume that only professionals should have access to this stuff. Any reasonably intelligent parent could pick out suitable stuff."

Three cheers for Moondog. Hip hip!....

um gosh is a bit of an understatement for that battle royale you have been through Moondog. But am very heartened that your efforts sound to have brought about real change in your area.

thanks for the links - wasn't aware of the Taskmaster company.