I'm in tears I need some help

[CardyMow]

I just can't cope with DD any more. When she was 4yo, her paed said she's on the autistic spectrum, threw some leaflets at me and left me to get on with it. Can't get official dx as school refusing to back me because if they do, they would actually have to help me.

DD has been a school refuser since school nursery (tbh even pre-school). Schools have never cared because I've got her there, on time. They see no problems with her (ha fucking ha, they do, but will never admit that they are 'official') I wiush they could live through a ,morning in my house. I just can't fiucking do it any more.

No oine but noone will help me. I can't get the children with disabilities team at SS to offer help because she 'doesn't have PHYSICAL disabilities'. They refer me to Child protection which will just get all my dc took away. CP never offer any practical help. I can't leave DD alone in a room with any of her siblings in case she hits or kicks or punches them (which is not normal in a 13yo, I don't care what people say, 13yo's don't take out frustrations on an 8mo baby FFS) I can't get any housework done.

I spoke to the HV who said she'd refer to homestart. Two weeks ago heard nothing. She also said that she waoould refer to SWAN about how small my house is (HA house, 2.5 bed when I need a 4bed). Heard nothing. Only ASD support group is over an hours bus ride away and I can't afford the £10 it costs to get there. Can't get DLA for DD bcause none will help get an 'official' dx - even tho it says on all her paed records that she is somewhere on the spectrum, it's not official by ADOS test.

I am fucking falling apart here and noone will help. DS2 also has asd - again, 'slightly' more official, buyt still blank refusal by school to back me and get ADOS test done. Even though paed, S&L threrapist OT and phgysio all say he's on the spectrum. NADA. Scuse shit typing I'm at my wits end.

DD keeps telling DS1 that she hates him, wishes he hadn't been born, wishes he was dead, doesn't want him in HER house, hits him, I can't keep him safe, he is getting fucked up emotionally by the shit DD is telling him, I want my fucking life back. DS2 is in his own world, is nearly 8yo, still can't fucking write properly.I'm ready to just phone SS and walk away.

Nah - tried everything bar Keppra. No use for various reasons, am on Gabapentin, can't take AD's. Lamotrigine - no sz control. Epilim - affected liver function. Topirimate - fucked my vision AND sent me loopy. There was something else too thayt I was seriously allergic to.

dc eating dinner now. will maybe be back later.

hiya Hunty

You're entitled to a second opinion where there's reasonable doubt about a diagnosis and/or if the parent is still very concerned. ADOS is a pretty good test but there are others (DISCO, ADI-R, 3Di) which are used in lots of NHS trusts and in the second opinion services at Addenbrookes and Great Ormond Street. You then resubmit DLA application having used Cerebra guide to fill it out and saying 'severe, dangerous emotional-behavioural problems, probably asd but case complex, awaiting GOSH appointment'

If you don't like the GP practice then you can just sign on elsewhere, all you need is proof of address and ID. If you like the GP otherwise, or if there's no other practice then a (polite, specific, short) written complaint to the practice about needing a second opinion will probably work.

So sorry life is so rough at the mo.

Another thought: if you are taking the LA to tribunal for failure to make statutory assessment with legal aid, then I think the solicitor can arrange for private reports to help with the case. That might work as an alternative route for second opinions, and have the added bonus of getting the dc a proper educational psychology review.

I might be out-of-date, so if someone who knows for sure doesn't come on here shortly to say I'm right or wrong, try the helplines. The NAS education helpline is quite good on legal stuff, and IPSEA, or sossen charities will know as well.

ok with the constant lateness to school business. I had this years ago with my DD (NT) when she was 15. I was threatened with fines and told I obviously cant be bothered etc the usual stuff. I actually phoned the Ed Welfare Officer and had a chat. HE came to my house and collected DD and walked her to school. HE saw the state she was in at home whist getting ready so then realised that all was not my fault. Also being 15 she was dead embarrassed that someone else was actually walking her to school and so it did the trick. Maybe you can try this out.

Huntycat - not giving a SA because not 4 years behind is bollocks and, as far a i know, illegal, because that represents a blanket policy. Write to your MP.

As an example, DS1 is both G&T and has a statement for his ASD/ADHD and the resulting behaviours.

Squidworth: Both my sons have dx without the ados testing,

That's a point - DS2 never had ADOS testing. He was diagnosed very young and the consensus ended up being "you knew, we know, now, let's just get it on his record and get on with it" DS1 did have it, but mainly because they weren't sure if ASD or ADHD was the issue. Eventually turned out to be both.

Just to add, both boys get DLA: MRC and LRM

ouryve - I know it's illegal - spent god knows how many years trying to fight it. But to fight it - I need money. Which I don't have. And energy. Which I also don't have. I have calmed down a bit, after phoning a RL friend. I'm in North East Essex, which is one of the worst places in the country to be if you have dc with special needs, at least education-wise.

I have worked out that a HUGE percentage of the problem is that DD needs more sleep but refuses to go to bed before the two boys as they are younger than her. Unsure of how to solve that.

EWO refuses to get involved unless DD is actually late for school. But in Essex, there is a high incidence of fines being dished out very quickly with no actual help being offered. I know of lots of people in that situation personally.

On the plus side - at least I can type coherently again! .

I don't even get DLA anymore - and my epilepsy isn't fully controlled. I got HRC, LRM until June 2010 when my renewal was due, but ATOSsers changed the criteria, and I no longer qualify. I appealed, still got refused.

It might help if there was anyone even willing to help me fill in the DLA forms for the dc - but despite my best efforts, I have been unable to even find anyone willing to help me with that.

I have tried CAB, NAS, SS, the lady from the asd support group (can only help if I can physically get to her very rural, no public transport location). I have run out of people I can get to help me!

Putting this into context, many single parents (or even couples) find things difficult with 4 NT kids - don't beat yourself up for struggling with yours!

IME, writing letters/emails to the right people (and they don't have to be mega detailed - you can outline and then 'phone me for more details if required) gets you places, especially if you do a blanket write. In your case, I would write a Stage 1 complaint about the refusal to provide social care or to assess for social care needs, write to your local councillor and write to your MP. Even if all those people do is send a copy of your letter to someone else, it might prompt them looking at your case again.

I hope that things improve for you.