Think I will start at the beginning so anyone with advice has the whole story, here goes... (You might want to get a cup of tea!)
18th October last year, HV comes for a 'welcome to your new area' visit after a relocation. I have some concerns re. DS2 who at the time was nearing 4yo; mainly his speech, lack of toilet training, inability to dress himself/wash, brush his teeth etc., rigidity of routines, absolutely will not take any change in routine/routes we drive/even furniture rearragement/who sits where at the table for dinner/who sits where in the car etc. he was/is very controlling and the whole house basically revolves around him to try and curb his violent and loud melt downs, which can sometimes be happening every 5 minutes, the fact that although he is physically able to walk will very often refuse to walk more than the length of a supermarket aisle, and he has very sensitive hearing, loud noises don't only just scare him, they hurt him.
HV said she'd picked up on hypo-tonia, he didn't have a left or right hand pref. and that he was very eager to please, and then straight away said she thought he might be ASD, referred him to SALT, Paed, Ed Psyche, and Portage. Also advised that any nursery has to take him, even wearing nappies (I didn't know the law had changed on this).
So two weeks later he started nursery 5 mornings a week. Portage referred back to the education SENCo's. He seemed to really enjoy nursery, took him a good six weeks to be able to go straight in the morning, he made a very close friend and other friends that he likes to play with, liked the staff, although between starting nursery early Nov. and mid-Jan he practically stopped eating, lost lots of weight, but seems to be back on a more even keel now with it.
At the beginning of Novemeber, on the HV's advice I claimed for DLA, it was turned down at the beginning of Decemeber, by which time I had realised that I hadn't done the form correctly, not put anywhere near enough info, and because he hadn't actually seen anyone medically, we had no back reports etc. I had hoped that by giving some extra info on the phone and the fact that you don't need a formal DX for DLA, I figured there was a small chance that a reconsideration may work, so we asked for a reconsideration.
Also at the beginning of November, we applied for an assessment in the hope of getting a statement in time for September when he starts school. This was declined because there wasn't enough evidence, he hadn't yet seen anyone medically, so we had no back up reports etc.
10th Decemeber, DS2 saw the Paed. The night before was close on one of the worse nights of my life. DS2 had always had troubled nights, lots of mumblings to himself, waking up and finding his bed covers weren't where he likes them, so screaming the house down etc. But the night before we saw the Paed, he really scared us. He had an 'episode' lasting around 2 hours where he was seemingly completely oblivious to us, he was scared out of his wits, and screaming 'no' 'go away' and literally having a conversation with someone. Eventually I managed to bring him round by blowing some bubbles (which he loves), and which made me think perhaps he wasn't oblivious to us? Got him back to bed saying we'd blow more bubbles in the morning.
So as I say next day is the Paed appt. DS2 remembers the bubbles in the morning and we spend all morning blowing the bloody things (meaning he remebers what went on in the night?). Obviously tell the Paed all of the above, she refers to OT, opticians and audiology (to rule anything out rather than that we had specific concerns with eye sight/hearing) and a psychiatrist. She puts the 'episode' the night before down to sleep terrors, but then when she said Psychiatrist, I was really worried about his mental health, and could do nothing but put it to the back of my mind for fear of going mad with the posibilities.
We came home from the Paed's and looked up sleep terrors, and from what I read everywhere whatever was happening to him that night was not sleep terrors, but y'know, I'm not a doctor, and it was a lot easier trying to believe it could be as simple as sleep terrors than anything else to be honest.
Christmas was on the whole, a nightmare, he (and his brothers) loved the pressies, treats, etc. but night times were unbearable, nearly everynight DS2 had another 'episode'/night terror, not really to the same extreme as the first one but literally all night he'd be mumbling away to himself, and then every 10-20 minutes actually calling out. We sleep on different floors to each other so we had to buy a baby monitor so we could hear him. He'd turned 4yo on the 7th December, and there we were buying a bloody baby monitor.
January came, the nursery and area SENCo's had both been into nursery to observe DS2, and both were of the opinion that he has nothing going that a bit of SALT won't work out. They say he's happy, plays lovely with all the children, has imagination and in a round about way told us to toughen up with him, we've let him get so controlling because we haven't 'reined him in'.
Mid-Jan, he used the potty for the first time, which was amazing!! I haven't put any pressure on him, can sometimes go 3-4 days at home between him asking to use the potty, and I am just letting him do it when he want's to, and not even mentioning it when he isn't showing an interest. Nursery on the other hand, despite me asking them not to, have him sat on the potty every morning, and the odd day when he hasn't had a wee, I get a dissapointed look, and almost a sigh, when I go to pick him up. The night time situation goes from bad to worse again. And on discussion with our HV we narrow it all down to severe anxiousness.
Every day when he get's home from nursery, he is absolutely shattered which leads to him either sitting with the laptop and barely moving for the rest of the day, having major melt downs, or going to sleep and thus making that night even worse. I figured it could be quite possible that he is having to try so damn hard at nursery to act as he thinks is 'normal' that by the time he get's home, he just has nothing left in him.
Week before last the Ed Psyche saw him for the first time. She did tonnes of exercises with him, found that he took things very literally, that he has amazing spatical awareness, and that his comprehension (along with speech) was well behind, unsuprisingly, and again picked up on how eagar he is to please.
The day after the Ed Psyche saw him, we had a mini-TAC meeting at the nursery, attending was the nursery and area SENCo's (the nursery SENCo also happens to be the owner of the nursery), the nursery branch manager, the Ed Psyche, and a stand in HV, who has never seen DS2 before as our normal HV was off sick. SENCo's both still saying they can see nothing wrong except with speach, Ed Psyche saying she doesn't suspect ASD because of the high level of spatical awareness which in her words 'would be odd for someone on the spectrum' (though have since found out through MN and other places that it actually isn't that odd) and she is saying she thinks it more likely that he has a language disorder, which she thinks could account for the other problems, and lastly this HV who seemed lovely but was pretty much useless because she doesn't know him.
We were told explicitly that nursery are happy to take him for a full day and then he has the next morning off, 'to see how tired he get's doing a 6 hour run, as he would be doing at school come Septemeber' but that that is as far as they are willing to go with him. They told us they get an extra 2p a year on top of whatever they already get for SEN provision, and as they can see nothing wrong, there is nothing they can do.
So last Tuesday DS2 did the full 6 hours at nursery, when I picked him up he was so tired, he was completely out of it. Nursery said he had taken himself off to the computer for about 20 minutes quiet time, but other than that he was on the go the whole time. When we got home, he kicked off big time, he just didn't know what to do with himself. I finally got him settled in time for tea, which he didn't eat, I had to go out to work but DH says he asked to go to bed early and he didn't hear another peep out of him. But all night he was talking/shouting/screaming etc.
Then the next day was his morning off nursery, we had an appt. for his brother at audiology. Since we still haven't had an appt. through for DS2's audiology, the very lovely people said they would fit him in there and then. Now if he'd have had warning about this he would have been fine, but it was such a spurr of the moment thing he wouldn't let them do the tests. He went into the biggest melt down I have seen him do in front of anyone else. He screamed, kicked, hit, shouted, seriously, anyone would have thought we were doing something terrible to him. He carried on kicking off all the way back through the hospital, all the way home in the car (half an hour's drive away) and basically all day, and the night's 'episode' just didn't stop.
The next day on the Thursday, he was back at nursery, when I dropped him off, I told the nursery manager what had gone on since he came home after the longer day, and there was lots of raised eyebrows and 'oh, we'll see how he get's on today' etc. When I went to pick him up, one of the staff couldn't wait to tell me that he can read (oh yes really, isn't he just sooo clever? No SN going on at all) and that we should just start putting him in pants at all times, he'll soon get fed up of having accidents after all. 
So I rang our lovely HV (who was back to work) the next day and told her all about it and she is still of the opinion that we're looking at ASD. She agree's with me that the nursery are erm... hiding things so their budgets aren't taking a hit - I just can't believe that he has never ever had a slight grump/mood while he's been there, and yet they have never mentioned it, even when I've asked. I can quite believe that he act's differently there, but I really don't believe that he has never once let the facade he puts on slip even a tiny bit, surely not? Lovely HV is going to go and observe at nursery and see what happens from there.
But anyway, in a very round about way, all of this is leading to the fact that the DLA reconsideration has just come back rejected. Now I know I have the choice of going to tribunial, but to be honest so much of the info on the original form has changed as we've learned more, I didn't follow the cereba guide or anything, I didn't send in any extra sheets, and we've still no reports to include, however he is seeing the SALT on the 23rd, and we should be soon getting a report from the Ed Psyche and it looks like we are soon to have an appt. with the Paed again, don't know when yet but we know she had called for his notes so presumably an appt. is due.
Can I (legally) just scrap the old claim, and send a new one in? Is it best to go to tribunial but with a new form/or at least all of this added info?
I realise if we start a new claim then we could be losing out on the back dated money from this claim, but to be honest, I just want to get it sorted out, and I believe I'd have a chance of fighting for the back dated amount if he is eventually accepted for DLA?
Oh my giddy aunt I know this is one hell of a long OP, but wanted to give anyone who had the time the whole picture. Phew, shall I put the kettle on again?