The day goes from bad to worse

[Jimjams]

And I haven't got the energy to even talk about it.

How long do SS spend in meetings anyway. They were meant to be ringing me back. Can someone tell me how to get hold of these people before I lose it totally?

well went to bed early- but ds1 was awake at 3am!

TBH I'm not sure there is much of interest to juornalists. There's nothing particularly unusual about my story- it's just what everyone goes through. I watched my friend go through the same thing 8 months ago (and her direct payments still aren't sorted out). A complaint from her has changed the ay things are done slightly, but that only kicks in once you are in the system and for some reason I can't seem to get in.

It's not different really from the battles with the LEA- it's just that I'm well practiced in those and know my way around so I just find them a major pain in the arse and a major waste of everyone's time.

Got to dash ds1 has just handed me a sentence strip- I want chocolate- then school run.

JimJams Sorry yesterday was so bad. Hope ss call today. All the time spent chasing people up and writing letters is soul destroying

Jimjams - where is your SS dept based? I know you are in the West Country but not sure where. Just that my mum used to work for SS in Bridgwater and just might know who to speak to. In any case I'll ask her who you should be asking for to get the head honcho.

Plymouth HITC. They are officially in crisis and got a really bad rating recently.

Just been on the other thread - about the Times article- and that kind of summed up why I'm reluctant to lose it with SS, or to even go and blub to my GP- I know there are people out there dealing with far far more- and I would feel like a fraud.

Anyway on a positive note decided I refuse to stay in and be unable to buy a pint of milk so took both boys to Sainsbury's this afternoon (one of ds1's half days at school- and was busy this morning). Sainsbury's is really irritating as they have bugger all in the way of double trolleys. So ds1 sat in the trolley scraping his feet on the floor and ds2 (age 2!) walked really nicely next to me and help me shop. I popped him in the main trolley bit when we were paying and to go out to the car.

Am not going to manage to lift ds1 into a trolley for much longr though- I'll be too pregnant- he's big for 5- so mayhave to swap to those disabled trolleys (although I reckon he could escape quite easily from one of those if he wanted to).

Nothing from SS- they won't bother returning the call they never do- so will have to write to them. PITA - I send more time writing letters to LEA's etc than anything else.

There will always be someone somewhere dealing with worse than you, that doesn't make you a fraud or your situation any less valid of support.

oh gawd dont talk to me about the lack of double trolleys jimjams its a nightmare. I really think supermarkets should provide several disabled trolleys

and you shouldnt be lifting a large 5 year old into a trolley in your condition either!!!!!!!

Oh Jimjams, I wish this would sort itself out without you having to go through hell. But I suspect you're going to have to lay it on really thick with social services to get any help. If Plymouth is anything like the bit of London I work in you may have a hard time convincing them for reasons utterly beyond your control- things like the fact that you and your dh are together and have such an obviously strong relationship, that your family helps out very occasionally, that ds is getting private SALT and ABA which they may see as "respite"... Many Social Services eligibility criteria for children's disability services are just staggeringly harsh, IME, and you need to think of the assessment process, including the chasing you are doing now, as a bit like doing a DLA form- ie: you have to break all your good habits, bite the bullet and accentuate the negative. You are definitely going to have to stress the impact that caring for ds1 has on you, on dh, on your relationship, on ds2, not just the level of his needs. And you absolutely mustn't try and be seen as a coper, hon.

I also agree that it might be worth getting some other professionals to chase this for you. If the GP is not an option could someone from ds's school or the autism outreach team (or anyone else you know at the LEA- SEN case-worker, inclusion worker, parent partnership?) give social services a call on your behalf? Or how about your Health Visitor if you know her at all? Social services tend to be a bit slower than average on multi-agency stuff maybe but generally children's disability work in local areas is a relatively small world and you may find that it helps for an "in-the-loop" worker to phone a friend at social services... (which is not a good thing)

Hope you are having a better day today. The shopping sounds like it went well, anyway.

Congratulations on a good shopping trip - and HEAR HEAR to Oliveoil on th validity of your case!

SS rang me back- to ask where I had got the form from applying for the playscheme. They seemed more worried about that than anything! They kept calling my son Alfie as well which was annoying as its not his name!

ANyway they told me to chase up the other section- (whcy they can' chase themseleves up I don't know why the f* should I have to do it)

Scummy interesting about the ABA etc I haven't told them we're paying for that- I'm going to tell them that because dh works long hours we have to pay for someone to come in and help on Saturdays. I've already told them that I'm requesting direct payments as we have no money left to pay for hoiday respite (true). We live in a "good" area though and it has to be said those of us that do seem to get a lot less respite than those who live in less good areas. Am trying to be very careful about what I say to them. Did make the point that my um and dad both work full time and that in-laws live in Ireland.

Dealing with these people is actually far more tiring than dealing with the disability. I do wich now that I had trusted my instincts and not bothered to contact them.

Jimjams, oh my love this is sooooo bad. I really wish I could help.

I was thinking of you yesterday when I read this article

The world is just so unfair.

But look love, you really need to get your doctor on side, in helping to push ss for you. He/she needs to know how desperate you are. Okay, so you can't cry infront of the GP, but do go, sit down and express your desperation. Please, this is one of the few things you can do that 'might' make a difference.

jimjams are you still there? I have something for you.......

JimJams, Good on you re shopping trip. You should call the supermarket in advance and ask for someone to be ready with a trolley available(and if ds1 will allow, someone to help lift him in).

I know how you feel about it being a waste of your time, the people in these offices never seem to understand this. They are of the impression you have nothing better to do

ah that article is on another thread (in SN) Easy. Just shows how typical all this is. Just sad to dh that I wish I'd never got SS involved and he basically said "told you to steer clear of them", although a sensible number of direct payment hours would be worthwhile.

When I was giving the woman from SS a bit of an ear bashing on the phone earlier she just basically said "well there are lots of families in your position". She also told me that I should send him to the Beckley Centre (local SN play place) when several professionals working with autism have told me that its totally unsuitable for autistic children. She said that they took children "like your son". So said I wasn't prepared to dump him somewhere unsuitable and we left it at that (they don't provide 1:1's so I he wouldn't be safe there or able to access any of the activities).

Sounds interesting Fio....

Jimjams, agree about being careful what you tell them. My strategy is not to tell them about anything we pay for ourselves, as far as they are concerned I have no help at home other than what I get via DPs. They have never asked me so I'm not sure if they're allowed to, but they're likely to decide that you don't need their help as you can just continue to pay yourself. I have a friend though who lays it on thick about how much she has to provide for her son and that she can't continue to pay for everything. Both strategies seem to work but I prefer to be cautious.
Well done with the shopping. Its good to practice when you're feeling up to it, at least you have the disabled parking permit now so you can get nearer the shop.
Hope you find someone to help out, is the ABA tutor not available over the summer?

She has a full time job Davros- working with autistic adults. Also we pay her quite well so I couldn't afford much more of her iyswim (and we pay train fare). Not going to complain though as we live in fear that she will leave

I think DS1's LSA is going to be a great help- we have been very lucky with her- struck gold there.

I never feel I can practice shopping much as I still haven't managed to get him out of the trolley! The LSA is up for practicing shopping together so I think we'll be off to the corner shop a lot.

Well, mine's still in the trolly and he's nearly 9 and I don't give a shit as long as we can go shopping! I've never seen a disabled trolley but keep thinking of writing to local supermarkets to ask them to get a jumbo trolley just for us I though ABA tutor would be too much £ but LSA sounds like a good bet, she may well want a few extra bob over the hols.

The disabled trolleys are like a biggish trolley with a latge padded seat at the front that you just sit the child on and strp them in. The handles on it are like a stroller. So you dont have to put them over and in just on. Obviously I dont know how practical the straps would be for holding in a child that didnt want to be in it. They used to have them at our local asda and you know the trouble I had trying to get one unlocked for dd.

Yes they have them at Sainsbury's as well Fio- not so easy to push single handed though (whilst holding ds2's hand). Haven't tried one yet- but I am hacing difficulty getting ds1 into a trolley now and god knows what it'll be like post ceasarian! I keep meaning to put big double trolleys into the suggestion box but never get round to it!

jimjams, really hope something positive happens with the SS. Different experience but when my mum was ill, her condition deteriorated very quickly and I spent hours and hours on the phone to her SS, trying to get help. Just as you say, phone calls weren't returned, no decisions were made, I wasn't told how I could get things moving, just kept getting referred on to different people and most of them were out. The whole thing just took over my life. In my case, the end came when my older cousin arrived out of the blue. She used to be a big corporate executive type and ploughed through all the SS red tape much better than I could have done. She told the SS my mum was totally unsafe to be left alone at home - she had left the cooker on with a saucepan burning. Her cooking was a fire risk, not just to her home but to the whole terrace. Did SS want a huge insurance claim on their hands? My cousin laid it on really thick. The SS suddenly managed to make decisions, gave my mum a vital assessment and then got her more help. Not lots more help, but some.

I was so grateful that someone took over. My cousin looked at things with an outsider's eye and managed to see through the muddle. I wish my cousin could swoop down on you and do the same with your SS, I really do.

As you know my inlaws live in your area. My MIL is a very experienced geriatric nurse who ran a retirement home locally so she's used to dealing with social services. She now works part time for a carers cooperative - she visits elderly and vulnerable people in their homes. I know she is had no experience of SEN or childrens needs, but are there any questions I could ask her on your behalf? Could she be of any help?

Thanks tigermoth- sounds similar to my mum's experience when my grandmother was going loopy. My mum's a community nurse and also used to dealing with SS- in the end she got hold of a SW and told her that she would be holding her personally responsible if anything happened to my grandmother.

TBH I can't be bothered to fight them. Dealing with them is making me more stressed than getting on with it myself. I hate the judging crap they come out with anyway. The request has gone in- will make a few enquries slowly and aim to get something in place by xmas holidays- when baby number 3 will arrive.

The local SALT college won't let their student's come and work as volunteers because of lack of employers liability insurance (FFS!) No wonder they come out of college knowing bugger all. A chance to see PECS up and runningin a home, choice boards, visual timetables, learn about autism, get practical hands on experience with an autistic child- and see that their stupid communication programmes don't work etc etc, but no they may trip down the stairs and twist their ankle so no work experience for them.

Anyway the SALT came round yesterday (private one obviously!) and helped me set up stuff for the summer. She thinks her daughter may be around a lot and says she's great with strange children (my words!) as she's been around them a lot and is non-phased but firm.

May look for volunteers elsewhere but almost think what's the point. It really is more hassle trying to get help than just getting on with it.

JimJams - how are you feeling now?

I understand what you are saying about the fight, and was thinking about you yesterday, and how advice might just as easily wear you down.

It is possible that however much you chivvy and fight, you might well be stuck with no help. Not right, not fair and not just, but reality nonetheless.

What is there within you that enables you to be the 'coper' that you are? Is there any chance of developing a routine that enables you to have an hour to yourself before your DH leaves for work - to read, do yoga, on-line gambling or whatever?

Can you find ways to 'stagger' the holidays and maybe find money for one week's paid help as a liferaft to look forward to in the middle?

Keep a dairy or chronicle each evening, including the best and worst of each day, with polaroid pics?

Allow yourself a MN moan once a day at a given time so that everyone can listen, and heap insults on people who make it harder than it should be?

Take to drink and ask your DH to bring you nice treats home every day?

Anything to get through each day as it comes.

Jimjams, I've been following this thread as I have been in a similar situaion (getting stressed out and contacting SS) But I have been seeing the GP on occasions, I returned to see him after making an appointment on the phone whilst in tears.

I saw him a week last Monday morning and asked him to refer on my behalf. We did move to South Yorkshire from Lancashire in 2001 so I hadn't been in contact with S Yorks SS before seeing my GP a week and a bit ago.

He spoke to the local SS interviewing office when she called into the surgery a week yesterday. She rang me and did a sort of interview on the phone. She then referred me to the main office and they rang me last Friday. Whilst I was on the MN meet-up on Monday, my dp called me to say the Disabled Childrens officer had been in touch. I called her on my return home and she visited me yesterday and did a preliminary assessment. She is referring me on for a core assessment which should happen within the month. The results will then go before the short breaks panel in September.

I don't know how far you are into your 'journey' but I'm gobsmacked at how quick things have happened via the GP. I'll post back if there are anymore developments.

Take care of yourself x