Im so sad I cant give DC the life she deserves.

[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 stressthis 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.........

sorry its long.

I have to admit it sounds hard work and relentless and I can really understand why you need to vent.

Here is a little hug, only wish there were organisations out there to help you

There is this charity, but I don't know if there is anything that your dd needs that they could provide;

"Helping disabled children and young people live a life of greater freedom. Children Today provide grants for vital, life-changing equipment for children and young people with sickness and disability across the UK."

www.childrentoday.org.uk/

thank you. I don't need respite from her nor her from me, we really are fine as we are, she wont and cant go with anyone else, im her rock and anchor, and im absolutely fine with that. she has feeding and toileting needs i will not have anyone else touching her for toilet, she freaks after the abuse she remembers. im the only one who can go near her for that.

the couple of times weve tried respit things shes freaks so much she ended up having a fit, and anyway I was out of my mind with worry if she was okay and they were doing what they were supposed to do.
believe me this ways ideal for us.

when she was at school (homeschooled now) she wouldn't go to the toilet (although there was 1 teacher I trusted to see to her there) and shed mess herself rather than let someone go with her.

soooooo much better now as shes home and with me for her loo trips and things.

sorry, got to log off again as got to help her to bed and stuff. thanks all again. x

I'm disabled and have a disabled dd on the autism spectrum as well. Just want to ask if you have had a full benefits check, preferably by CAB/carers centre, as lots of families miss out. DD and I both get DLA at higher rate, plus I get carer's allowance as well, which adds on extra premiums to my income support and child tax credits, so financially we are fairly comfortable, despite the extra costs of our disabilities. If you are getting a lower rate of DLA, try calling contact a family as they can give you advice on whether you might qualify for a higher rate. You might be able to get discretionary housing payments to cover the shortfall in your rent - you need to contact your council to apply for this.

I would also encourage you to try again with Family Fund, we have had grants every year for 8 years with no problems. We've never done a holiday through them as the type of holidays they offer wouldn't suit dd, but we normally request gadgets or household goods which we need to replace, so the money we save on that means we can afford to pay for a holiday of our choice.

Likewise I get a Freedom Pass and so does dd, so we don't have to pay any travel costs within London. Most councils have similar schemes for disabled people. And I just got a £135 payment to cover my heating for the winter as I'm on benefits, but I had to apply for it directly from my energy company. If you make sure you're applying for all the discretionary help that's out there, you can have quite a good quality of life despite not being able to work.

We also don't use respite as it doesn't suit dd, but our council offers Short Breaks and we receive the Individual Budget option, which means they offer cash for me to take dd to places she'd enjoy. The value is £900 a year - not a huge amount as a lot of it needs to be 1:1 but it means she gets access to activities she wouldn't otherwise have. All councils should offer Short Breaks - so check what is on offer in your area. You should also ask about Direct Payments from Social Services as they can be used to pay the service provider of your choice, so you can find something that suits your child's needs, not just what the local council have on offer.

Cerebra charity also offer free holidays in their own accommodation, there is a lot of demand for it and I've not been as it seems to be quite remote from public transport (non-driver) but it might be worth looking into. Cerebra also do grants, although unlike Family Fund they insist on getting a professional to sign it off, so I've held back from applying so far.

I got in touch with the NAS years ago about their befriending scheme and unfortunately they just wrote to tell me they had huge demand for it and no vacancies.