I don't know how you all do it, I feel like I am falling apart.

[NatalieJane]

Back ground: DS2 (4 next month), we were told just over a month a go he has ASD and (what I thought was) Hyper Mobility Joints.

I misunderstood the HV and thought DS2 had Hyper Mobility, but it turns out he has Hypo Tonic limbs instead (big whoopsie on the DLA form ). Reading about the two conditions, they both seem to amount to the same thing, too much movement is allowed, though it seems Hypo Tonic Limbs can create many more problems, have read about eventual blindness and the need to use a wheelchair.

So why hasn't he been referred to a Physio or whatever else about this? Should I ask the HV (His key worker)?

Am seriously starting to feel the pressure of the drip feed situation we're in. HV comes in and says he does X, Y, and Z, he has Autism and this Hypo Tonic thing, and as good as she has been, pretty much leaves us to it. I have been reading till I can't focus anymore about Autism, reading things that I'm sure a lot of you already know, that are bloody scary enough on their own, and now this comes up with the Hypo Tonic isssues, and I am just bewildered, we're at the point where I don't think we can take anymore, and then there is yet another cold dish of shock, anger, and hurt served up, salt to rub in the wound.

Every day there is something else that he does, that he's always done, that we've never questioned, and it is another smack in the face because we didn't see it before.

He is such a gorgeous little boy, but he is 90% of the time so unhappy, uninterested and unable to understand so much. I am absolutely heart broken for him, he is never going to 'get' life is he?

Not helped by the fact that DS3 (2 next month) is showing many of the same signs to a larger degree, so looks like we'll be going through all of this again.

I am not cut out for this, feel like I am sinking into a hole little bit by little bit every day. And then feel even worse because I should be 'cut out for this', I am their mum, I have to be strong enough to get them through it don't I. I'm just not sure that I am, and if I can't do it, no other bugger will.

Sorry, I have to get this out here because DH is dealing with it all as well, and I don't feel able to add more pressure to him, and I need something to stop it all whirling around my head. Please feel very free to ignore my rants, I'm sure you are all dealing with worse than this

Very glad you're feeling a bit better today.

OK day one, rang HV she's not in till next week. And I have started diary, since he woke up at 7.30, I have written 4 melt downs already, and how long they have lasted, adding them up, he has been up 2 hours 5 mins, and he has spent 1 hr 40 in melt down mode. And it hasn't even been a 'bad' morning.

Just how much are we putting up with that seems normal?

This is going to be hard isn't it?

it is hard, nothing has changed but you're realising how much extra you do. This isn't all bad, this will be your evidence that you can show to the paeds, LEA if/when you go for a statement and evidence you need to fill in dla forms if you decide to do that. Have you found any local support groups, they can be good for a bit of rl support as well as giving you local knowledge.

Ah yes, have already done the DLA form on the HV's advice, have rang up twice to add more to it, wish I'd have realised and just waited till we were in a better posistion to put forward the whole story.

I have looked all over for support groups, I've not found one yet, and trouble is I need to be quite close by because the gaps between nursery and school drop off, then nusery pick pick, then later school pick up, aren't that big, but we live in the back end of nowhere. It is one of the things I wanted to ask the HV about, but I think she'd have told me about them if she knows of any. Am toying with the idea of asking her if it'd be worth starting one, but I think for now I am swamped enough as it is, I am also in the midst of starting my own business, so I don't even know if I'll have time... Lot's of 'wait and sees' I think.