anyone else ever feel guilty? we shouldnt but......

[LetZygonsbeZygons]

sorry, feeling so down.
fed up as a lp (Ex was a wife and child beater, peed off somewhere and doesn't pay a penny, disappeared off the face of the earth (good thing actually))).

Im disabled, DCs disabled so we are limited in mobility as it is, I have to live on benefits as im a fulltime carer for lifelong disabled DC, cant afford to go anywhere parks become a bore after a while, museums are free but the journey there isn't, Dcs quite happy in her own enclosed little world (shes sitting on rug playing with her dolls atm) but im always feeling guilty.

other children out playing/going to friends, DC cant as shes autistic and stuff, its literally just me and her. shes never complained or anything, but I find myself comparing myself to other families.

we have no one who ever offers to take us out, friends have their own families, we went out with some once and they were very impatient at us struggling to get up and down stairs and things and walking very slowly etc.and embarrassed when Dc had a meltdown.
.

we get no help whatsoever from 'services'. no groups to join as DC cant handle social situations -one to one is okay but that's it-. not her fault of course.

but weve NEVER had a break/holiday in 13 years. just cant afford it at all. rents gone up and my housing benefit doesn't cover the extra so cant even put away for emergencies, and cars on its last legs and we get no help for it even though we are both disabled.

BTW let me stress this is NOT a begging thread, I know some people do this, and someone reported me once thinking I was one of those,im a regular here. this is just a rant and wanting a hug!

and then people wonder why I cant stand smugeron and his minions and the royals on yet another holiday.........

just feel DC cant have the life she deserves.

sorry its long. posted this on lone parents site too.

thanks polter I make time for myself when DCs in bed or when like now shes playing on the rug while I have my 'social life' on mn! and during the day she has a nap so I can have a coffee and me time for half an hour. that's no prob there.

She gets DLA but I don't. I only get carers allowance. I don't know why I don't get DLA.

family fund. I tried and they were not helpful at all. I am very good at budgeting, I never buy anything for myself, im goos with bills and stuff, I have a fixed internet usage package, and everythings online and emails these days so its a necessity.

that and my sanity for an hour or so on mn!

I have no idea! were so used to it this way wed prob freak with any change!

many years ago when I was more able bodied and working (pre DC) I went to America on a hol with a firend and id love to take DC there to where we went. or even to somewherelike the isle of man or Jersey or Guernsey, somewhere quiet and near the sea.

id like to own our own detatched house somewhere in the countryside away from judgy and antisocial and discrimination people.

id like to have a decent car that worked!

its not jusyt about the money though its just a peaceful life somewhere.

polter im not the most social person myself so DC and I are like 2 peas in a pod!

have to go now as I need to put DC to bed.

thank you for your support and sorry, I go through these pathetic pity parties! xx

Poor you, no-one would blame you at all for feeling down.

Whereabouts are you? I wonder whether you're near anyone here and could get a day trip or something together. I'm in London - any use?

Have you joined Contact A Family? They do lots of trips out, coffee mornings etc - perhaps there's a branch locally?

Also local NAS groups?

I'd try again with DLA especially regarding the car - there seems to be a clear motability need for you both.

seeing someone tomoz. going to ask about pip. Polter im on a homeswap register, been there over 2 years but our house is a damp dank shithole and we have the neighbours from hell whove been at their worse this weekend and ive had enough.
Fiona Pilkington comes to mind (google her). poor poor DC and theres nothing more I can do, no authorities listen or do anything.

Thank you. Hope you are all okay btw, these threads are for everyone to share! hugs to all of you too.

Have you had a reasonably up to date core assessment from social services, and have they got a detailed care plan in place? If not I suggest you ask for them now. Make sure they stick to the statutory timescale - I think they have to complete the assessment within 45 days from when you ask for it.

neeny weve had nothing but probs with social services. we live in a busy area and they have a lot of cases and as ours isn't a 'baby P' case were very low on the list.
my social workers very nice but hes got quite a workload, mind you ive emailed him about 6 emails over the weekend! that's how bad things are.

just makes me feel useless you know? like we're worth nothing, I suffer with zero self esteem as it is, this certainly doesn't help.

sorry, I know theres a lot of people out there with similar problems, I appreciate unburdening here and your support. .

Ive even played the 'my child IS is being abused, by the surroundings /services/bloody government etc' but they don't take that seriously.

I am "signing in" and will be back later. Keep your chin up, love.

LetZygons, you need some help, and fast. You need to see a GP, one you can trust and who knows your situation ideally, but if you're anything like most people, you'll have to settle for some random locum GP who needs to be made to understand that you are on the verge of a total breakdown. You need to tell it like it is, or write it down.

Years ago, I was in your position. Single mum with a young child (4 yr old) who has ASD. I lived miles away from any family as I had relocated with my (then) husband's job. Husband left 4 weeks following DS's diagnosis. I had no friends, was barely welcome at toddler groups because, put simply my 4 yr old was a royal pain in the arse and I was totally isolated. It was just ds and me. 24/7. I got to the stage where I felt totally hopeless and wrote down (I could barely speak about my situation, by then) exactly how I felt and handed it over to my doctor.

Years later, I wonder how I survived. I did. So will you. It's still a massive struggle getting help. I find the best way is to be very, very clear with people about your position. I had 3 Social Services assessments who all said basically, "your situation isn't bad enough to qualify for any help" but in the end I told them that they were absolutely right, my son was in a loving and stable home, he had toys, he was safe, he was well looked after. He wasn't abused. But, he was totally isolated by his condition, he had no friends and by association, neither did I) he spent his entire life with his mum, never got invited to anything, was in effect "disappearing" as a human being. So, because he was much loved and cared for, he got nothing. I went to see my MP. Told him that my child was one of those who was slipping through the net. That my child had as much need as others. That he needed a buddy. Someone, other than his mum, to spend some time with him. Within 6 weeks, we had Direct Payments so ds now has a PA who comes and spends time with him or takes him out on brief excursions. We have a Statement of SEN because after being refused, I made it very, very clear that he needed more help than they were telling me he did.

My point is, you need to make "them" understand that what they've done so far is not enough. That you need help. That you need it now. I remember telling SS that they had let my son down massively because he wasn't being starved/beaten/abused and was that the criteria we had to meet, to qualify for any help at all?

I'm making it sound easy. It's not. There were times I'd be in a heap, crying through utter heartbreak and frustration, watching my son disappear I to his own little world and no one (but me) seeming bothered. There are still days like that as he's really poorly, at the moment but I'm fucked if I'm going to let "them " tell me he doesn't "qualify", that we don't count. We do. You do. Keep trying and make it totally clear that you are in need.

know what else pisses me off? former ndns sold their house and I even said to their estate agent please tell whoever buys the house to let me know when theyll diy and stuff, and explained everything about DC and her sensitivities. I even asked new feckersneighbours kindly if theyd put their tv somewhere else and not on party wall as it shakes our whole house. of COURSE they did. not. feck feck fecks are driving us bonkers and we just cant move out of here. poor DCs got herself catatonic again, lying in bed trying have a wee nap.theyve been all weekend and today haven't stopped.
ive phoned/written/emailed every fecking (I never used to swear!) service/police/env health/soc services etc etc and nothing back at all.
why? cos they don't have to deal with a disabled child.

Thankx eliza