If you are a parent/carer for a SN child or children?

[YouaretooniceNOT]

How many hours/days/nights respite do you have?

My son has 2 alternate Saturday mencap 19am to 3.30pm

4 weekdays respite care - every school holiday - 9am to 4pm

10 hours per month direct payments - £171.00

I need more - i would like a weekend to myself every 3 months - i am going to ask the SW tomorrow
Any tips what i can say to her?

I m a lone parent with NO support network or other family.

I have one son whom is blind, severly autistic, no speech, doubly incontinent and dependent for all cares.

Thanks x

well i cannot help that can i?

no need for jealousy - it might be location

other parents get more than i do and they are married!!!

self improvement

the poster that told you to fuck off was me.

You are full of shit, talking more bollocks than a gargling hooker, and you are trying to goad woman who have genuine issues to contend with.

so yes, fuck the fuck off you sad wanker.

What?

goddness me you are a vile person

what have i done?

get off my thread then!!!

i am genuine here

i don't get it....

what are your pwersonal circumstances then?

i have told you mine

what are yours?

perhaps youi haev family that help

you must get something

i canot believe you

sn parents are supposed to be helpful not vile like this..

I have a child who has no speach is in a wheelchair-cannot walk at all is tube fed has severe seizures has severe screaming episodes has to be moved constantly from one peice of equipment to another.I get 1-2 nights a MONTH respite if i am lucky last year i missed out on 5 months.I have no help during holidays or weekends they will not give me direct payments.This is not jealousy its fact i think you are lucky to get the respite you get.

Whilst I woudl enver say someone who had respite has too much, you are unlikely to get more in reality.

I had to study part time and any childcare has been paid for by ourselves (and a little from DH's university as a gesture- he is a FT student after a redundancy); that's even with a qualification highly related to the boys- an MA in Autism.

It should, of course, be possible to study with provided respite as it's a pathway to financial independence, it's not though.

Unless.

Unless you do a first degree (you may already have one) in which case most of your childcare is covered subject to means testing. Would that be a good route for you? I found university degree study very compatible with caring, if you choose your university wisely: get views of exisitng students for this.

I knwo darth personally and I can assure you she gets less.

Thing is, the funding isn;t there. If you get it you have to be aware somebody else will not get any. the money is not ringfenced so very limited.

I'd rather have 4 hours a month and someone else get 4 than get 8.

after university i can get a job (hopefully)

i really think it is the relationship you have with your sw - and if they are any good - i was too proud to ask for help until i was in hospital with meningitus

i really am genuine

my son has retinopathy grade 4

severe autism

etc

i can go for weeks without having a conversation with someone

aside from my therapist

i have had to fight for every bit of respite for 3 years

initially it was mencap

it is a long story

It is hard- I know. I also know someone with a severelyan sd child who is blind and has GDD so know how tough it is for her.

But IME- which is fairly braod, given I help at an SNU / am doing the MA / used to work for a aprenting charity / have the boys, you ahve the most respite I know of, even including famillies where there are child protection concerns.

So do think about university with funded childcare, and also consider distance or part time learning. My MA is part time and a slog but worth it. At least I hope it will be.

can i now ask each of you

how much time and effort you have put in to fighitng for respite?

i suspect you might not have the energy or did and got nowhere

please try to see the good side of my question - as it is all good intention x

for an MA in Autism isn;t motivated? REALLY?

About 6 yearas, in between assignments and battling for statements and school aplcements (got the schools of chocie and passed the essays)

With typoes like that, I should concentrate on learning English before you try Uni. Or at least purchase a spell checker.

You have offended people in many ways, and while I don't agree with her methods i fully agree with Mamazon's point.

#1 You get a lot more help than probably 90% of the posters here, for which you are not even remotely grateful.

#2 You are very difficult to understand yet people have made the effort to offer you sound advice, which you haven't acknowledged or thanked them for

#3 You are 37 and talking about having another child. College is 2 years, Uni 3. you will be 42 years old by the time you begin ttc. Your child will be transitioning to senior school around then and undergoing puberty. This is most likely to be the most stressful time in his life.

#4 Your son, I repeat your son receives £171pw in direct payments. I work with adults with disabilities, and that would buy 27 hours of my time. What exactly are you spending that money on?

(And after trying to be nice, that does come over as 'you're all too lazy to fight properly and I am soooo much better than you')

ta-ra

(did you actually want anything from us other than a chance to insult? nobody can tell you how to get more, you won't unless you present a risk to your kids; indeed the Government is looking at whether they can remove the right to respite entirely under the proposals by Eric Pickles so...)

I am quite shocked by some of the comments on here today. Whether or not the op is genuine I don't know.
It does sound like some of the responses sound very jealous of the support the op recieves.
Op my son who is severely autistic recieves a similar package of care as you do. At his last review meeting I was asked if we needed anything else. I did'nt because I can cope with what we get.
No- one here knows much about your personal circumstances nor mine but I am genuinely surprised by the vitriol you are getting.

if its not a troll im actually a supermodel with no children and a celebrity millionaire boyfriend

I am genuine - this is why7 i do not post here

i have seen this type of response before

no need to be jealous...