Result of ds's assessment

[Eulalia]

We got back yesterday after a tiring but enjoyable week. Feeling more optimistic - we haven't had a copy of the final report yet but the SALT's individual report seemed to sum him up correctly as having a semantic pragmatic language disorder and mild autistic spectrum disorder.

I know he has been showing less autistic behaviour recently and this is encouraging. However he still shows enough within the 3 main areas for the diagnosis to be made.. He is becoming more sociable though and showed concern about one of the other children in the unit. It was funny as he says "shut up, thank you" quite a lot which the staff found hilarious as on the one hand this is rude but adding on the "thank you" shows politeness. His comphrension and expression of language is around age 2.5 with some gaps. The SALT is trying to push him further along the waiting list (he is currently nearly half way through a 42 week list). He should get the SALT in blocks and won't need special assistance at nursery. They are so good with him there anyway. I also got a big, big boost to my confidence when several people said quite independently that I was doing a great job not just with coping with everything but was adapting my behaviour to help with his development.

The unit was great. He was assigned to a nurse who I thought was just looking after him but she was actually observing him all the time and doing a checklist of his abilities. He was in a nursery type setting and loved the toys and equipment, as did dd who could sit in some of the time. I saw the staff either on my own or sometimes with him and they also observed him on their own. We stayed in the little apartment in the grounds which was lovely and peaceful so there was something of a holiday atmosphere. It was great to get out of the home environment and to concentrate fully on him. There was a case conference at the end with 10 people (!) and it was very comphrensive. I can't fault any of them. His nursery teacher even came to give a report which was very helpful.

Oh and he peddled a tricycle for the first time there!! They say his skills at using scissors, threading, colouring in, numbers and recognising shapes are very good. He does NOT want to draw though and this may hold him back with learning to write eventually.

Anyway sorry this is so long, just to say thanks to you all for the support and encouragement since ds's initial diagnoisis and indeed before. Feeling quite optimistic about the future at the moment

Feeling much better ? ds did his first person drawing yesterday at nursery! He needed a lot of prompting but it is quite distinct with head, arms and legs.

Dinosaur ? thanks it is useful to hear your situation too. No I don?t have that book but am considering buying it. I?ve been reading The Autistic Spectrum by Lorna Wing ? the part about conception of time has given me a good insight.

Fio2 ? yes my mother would find it a lot easier if ds was in a wheelchair with a physical disability, preferably passive (like being passive is a good thing?) ? sounds awful but she said herself she finds mental health difficult to deal with ? she was convinced my sister was putting it on a lot of the time when she had a breakdown a few years ago. With ds being only mildly affected it is harder for her to understand and also he is so good at echoing a lot of speech it seems just like he is speaking normally ? she often can?t be bothered to test him properly like asking a ?how or ?why? question and he is lost. It is not helping that he keeps calling her ?Granda?!! haha. He correctly calls my dad Granda too (he prefers my dad). He gets confused with classifications.

Oh yes kitchen utensils ? ds was obsessed with a whisk with handles but it had to be hidden when he used it on his bowl of tomato soup ? what a mess!

Yes jmb1964 ? know just what you mean. Thing is I have tried smacking and it didn?t make any difference and in fact made things worse. I think I?ll just have to have a talk with my parents ? not easy as the children are always around ? will try and dig out some literature for them too.

Oh and thanks jimjams - just read your message I wonder if more education would help - TV progs and so on ... although some people just don't want to be educated.

lets face it Eulalia how many people really DO understand, not many is there? I find it really sad that society has moved on so much with respect to alot of things but understanding of disability issues still seems the same.

Glad you are feeling better dinosaur

I suppose we are guilty of it in some way or another dinosaur. Off to polish my halo now...

Eulalia- My parents and most of my inlaws still insist on disciplining 'their way' and my mum still 'brings up' incedents that happened 8/9 yrs ago- things that ds1 broke/lost/etc . she was here yesterday- ds2 demonstrated his excellent 'hand flapping' ability- and even threw in a bit of 'peripheral/sideways' glances.... and she still said 'he's just excited'
my health visitor has just come round to 'observe' and said that as far as ds2 goes...at 7yrs we will probably have to wait till he's 9 to 'prove' that the behaviour he exibits is 'bad enough/ and not age appropriate' to get the diagnosis...i think she's right....but what about ME!!! At least with the DX i get some support and possibly entitlement to go on varios waiting lists for different 'therepies and workshops' and holiday clubs that could help

IMHO, I wouldn't settle for what the HV says but insist on her referring you to developmental paediatrician (what's the harm even if she's right?) OR go to you GP and ask him/her for a referral....... but then I'm a pushy cow!

Mrs forgetful - I agree with Davros - don't take no for an answer!

mrs forgetful - was wondering how you'd got on with the HV - I'd just bypass her completely and like everyone else says here go to the GP and ask for the referral.

had a lovely afternoon yesterday with the children to the park and winter gardens... anyway there is a disabled guy who works there - I don't know what he 'has' exactly but his arms and legs are turned inwards making walking difficult. however he can walk quite fast. He went past us while we were in the cafe and the the children were watching him , not staring though and I saw ds about to speak and I was hoping it wasn't going to be embarrassing... but he said "mummy that man's dancing".

Thought that was so sweet ... wasnt' sure what thread to mention it..

Thanks to you all----you always inspire me to take the next steps!
Today was manic...but a real eye opener too... Took ds1 to his Autism Activity Day and had to tag both the other 2 along - when we got there another child was crying in a very distraught way and DS2 commented that this lad was 'squawking like him'....and then as we neared the room we had to assemble in he also saw another boy bouncing and flapping his arms like ds2 does...and i was gobsmacked when he said " that boy's doing what i do!" This alone has made me determined to push this along for a speedy conclusion as with a diagnosis he would be able to attend 'clubs' like this...where he clearly felt HE BELONGED!

Also when i came back to collect ds1- i only had ds3 in the car ....and he AMAZED me!! We were about 3 miles away when he remarked that there was only 3 more BIG roundabouts till we got there...I began counting them...and wasn't really sure what counted as 'big'... but when we got to the last roundabout before the road leading to the centre- he said ..."this is the last one"- now i know all kids remember routes etc....but this isn't the first time that he's said this sort of thing...and added to DS! having an amazing longterm memory (but can't remember what i asked him to do 5 mins ago!) which is an aspie thing....i wonder if i'll go for the hatrick....Might get my own TV show too!!Seriously.....B4 he could talk in sentances he was able to name and recognise 'every' make of car- he would see a new one once then remember it next time- we think he looked mainly at wheel trims! Then he got into toy cars and everyone bought him them for presents etc...but he only played with the ones that were 'ford,vauxhall,rover' etc!(i reckon thats an early example of 'special interest'....) He's also at 4.5 still sitting in his 'tiny' newborn carseat....as a t.v/relaxation chair...and still has a dummy and has refused milk/tea since i took away his bottles...now somewhere i read that autie kids are often reluctant to stop these things!

Can you see why i need DS2 diagnosed.... i am seriously losing all sense of what is 'normal' etc... i mean, for all i know DS3 is 'fine' but because i am so 'tuned in ' to all this at the moment - i think i am not seeing 'everything' how i should????

Please can i win the lottery so i can have all 3 boys assessed privately....and maybe then i would be able to stop this 'annalysing'

mrsforgetful, I really don't see how any professional would think you don't have very good grounds for wanting to see someone and get this resolved. I just hope you can make some progress and not be left hanging around for months. If you do get to the next stage, i.e. Paed waiting list, badger them every other week or so for a cancellation. I did and got an appt about 3 months sooner than we would have. When you finally get to see someone you should have a look back at your posts to MN as there's lots of stories and evidence that you've shared with us that I'm sure would help. Good luck, you've certainly got your hands full but you are doing a great job.

Davros... Thanks- and you won't believe it but it occurred to me the other day to print off some of my posts i've put on mumsnet- great minds think alike!! Can i simply go to my gp and say' i'd like a referral'- or will she need to 'see what i mean ' first... i reckon all i'd have to do is 'visit' her with ds2 a few times and she'd see enough!What i REALLY would like is for someone to observe all three together- interacting etc- because my gut feeling is that they ALL have bits from the ASD spectrum and the reason that they seem to manage at school etc is that they are separate etc- and though at home they do sometimes 'share an interest' and manage with a bit of help to interact with each other- most of the time they are at tangents and usually it's ds 1 and 3 behaving very 'hyper' and making noise that ds2 cannot tollerate- or ds2 dictating how ds3 should do things or as mentioned B4 arguing over 'turns' ..as i speak ds2 and 3 are 'having difficulties' over 'touching eachother' whilst sitting on the setee- ds2 hates being 'touched'- the problem is when you try and describe this to doctors/teachers etc- they just see it as typical boyish behaviour- and ds2 being the subject of 'middle child syndrome'- however i'm sure if they were seen as a group that 'my gut feeling' would be right...and if not then maybe i'd still get support to get our homelife a bit mor harmonious!

mrs forgetful - It's truly shocking the way so-called professionals have left you to deal with all this by yourself. Have you thought about trying to get a video recording of your boys to show the doctors etc? Maybe several times so they can see it's not just a one-off? It's not always easy though. Even as a baby ds1 just tried to dismantle the camera.

Mrsforgetful, I think it depends on your GP. If you think they're OK I would go without any of your DSs and sit and talk through all your issues with examples. I think a video is a good idea and if the GP is still uncertain maybe ask for a home visit? Obviously once you get to Paed level you'd have to take the boys with you.

will start the ball rolling (again!)

I will TRY to make this brief...DS2's teacher approached me after school to say that apparentlt instead of clapping his hands to a counting exercise in numeracy today he was kind of slapping his cheeks- when asked to stop she said he ignored her and continued. she said when questioned he said that "i have autism.i am allowed to do this"
I always find these conversations hard so 'apologised' and promised to talk him about it.
When i asked him what happened in numeracy his version was that he couldn't stop the slapping cheeks (stimming??????) and that he'd said that "mum THINKS i have autism and that's why i do silly things".....now how do i handle this???

We talked a bit more and i explained that the doctor has not agreed fully that he is autistic- and is 'only' showing signs of it and that ds1 was 9 b4 diagnosis was made- but as doctor has stated that he is showing behaviours which 'suggest' he is on the spectrum(particularily asperger's) then i also feel i am RIGHT to reassure him that sometimes he does behave in a way which is not acceptable to others but equally I 'accept' that this is not 'wilful' behaviour-I DO NOT WANT HIM THINKING HE IS A NASTY NAUGHTY BOY'

Without being 'bigheaded' I sometimes wonder if because i DO understand my boys so well that they therefore are able to cope better than is 'normal' for SEN etc....ie I always ask them to tell me 1 good and 1 bad 'event' at school and will often run through the bad with the 'textbook' way of hanndling aspie's social skills probs .

When ds1 was 6 or 7 and we were always lecturing him about what he could should must do or what he could/couldn't touch etc at school he would often say "but it's so hard to be good'- now i understand this as the Autie way of 'fitting ' into our ways....and then the meltdown that follows when concentrating to behave has worn them out- what i believe ds2 is doing is trying so hard to behave and in an environment where the teachers and paed say he's doing fine...yet is showing no empathy to others and has no friends and prefers to work alone(doing fine?????) that without anyone being there like i do at home to diffuse the situation- he's beginning to 'show' what i've been seeing over the past 6 months- stims,echolalia etc.....

My regret is that THEY think now that I'VE PUT THIS INTO HIS HEAD! like some kind of excuse for 'bad' behaviour

I am going to speak to his teacher and explain his 'side of the events....and also my understanding of what was going on for him during this.

PLEASE>>>>can someone help???

Oh heck@! Can you afford a private assessment with someone to back up the fact he may have/has autism? Sorry not much advice- someone else probably has better advice.

I've started 'saving ' today! on this subject- cried all the way from school to go for my psychologist's appointment- talked about this for the whole hour!!!! His teacher now knows I have told Leigh he is showing 'signs' but I never told him he has 'it'- but i also made it clear (between tears! ) that i will not 'ignore' his distress because a DX has not been made- and that because i handle him so well at home is probably why he's managed so well up till this september- and that it is beginning to get too hard for me now as he is having total 'meltdown' every night after school and saturdays are terrible- due to how hard he is finding it to conform- I did have to explain the terms 'overload' and 'meltdown'- which is rather exasperating as she was the SENCO till last year- amazing! Like i've said to you before ...us MUMS should do the DX...We do know what we are talking about!

Mrs F - Tell that teacher he's NOT being naughty - say to her - think about it.. he's been here all those months and yet been really good. If he'd really wanted to be naughty do you think he'd have done soemthing like slapping his own face....? surely she must see this as being odd. anyway sorry not much help really - hope your talk with the teacher is successful. Thinking of you.

And for today's saga.... he came home 'cross' that he'd had 2 warnings...i asked what for- he said 'for being silly' I asked him what he'd done...he didn't know- my husband thinks he's 'hiding' the reason- i don't- ds2 would hardly suggest that i ask his teacher what he did wrong if he was hiding the reason!! My perspective is that this is what i predicted a couple of weeks ago- that they'd go back after half term and the 'real work' would start and routines would be rocked and he'd react badly. I feel its like he's truly unaware of much of what THEY see as silliness- as to him he's just coping- and EULALIA like you sain- he's not doing anything to other kids....well my plan is to request that if he's going to get warnings i would like a written note describing what,when , where and how so that a) i can discuss this with ds1 and b)i will have 'proof' to show the paed that he's not managing as well - literally a month after seen by her

MrsF, I was going to write you a longish note about speaking to the teacher and what you could say, but you know all this already. What about giving the teacher a copy of Freaks, Geeks? Really hope you sort it out or maybe get some mileage out of this situation.

most teachers are really willing to learn more about specific problems and how they can help. Does DS's teacher seem the type to take it on board?

I'm not sure really that the teacher is the 'problem'- the headteacher is the SENCO and she has made it clear that she has 'too many SEN children'- it's not far off 50%!!!!!!! She reckons too many were put on the registar 'willy nilly' and i can't help feeling that she just doesn't want another statistic! I have also decided to explain a bit more to his teacher about ME- maybe then she may approach the subject in a different way. She is nice and i have to remenber that she is not a specialist in AS!!!!