To think parents of chronically ill and disabled children

[TestingTestingWonTooFree]

...are super stars. We are on day 2 of baby DD being pretty unwell in hospital. Should be discharged tomorrow or Monday and the worst of it is over. How the hell parents of chronically unwell children cope, I don’t know. No choice I know. I am knackered after a week of it and I don’t have the big worries of care/future/money etc to be dealing with.

Hats off to you all.

Yes, and some carers don't even get that. My son is too disabled for wrap around care but because he only gets sen+ funding and not an ehcp the dwp have decided he is "normal" and we have lost his dla and my carers allowance. So now we are stuck between a rock and a hard place.

MuddlingThroughLife

Carers Allowance is insulting low.

If DWP have removed/refuses DLA it’s always worth looking at appealing.

Thankyou. I'm in the process of appealing. And also trying to get an ehcp because the dwp keep saying no ehcp = not disabled.

ellie-that is disgraceful :(

How old is your ds is you don't mind me asking?
I had to re-apply for my ds's DLA this time last year. He has AS. Is in mainstream school and has no EHCP. He is now in year 11 and 15yrs old.

They reviewed the paperwork on the Monday and I had the reply back on the Thursday that it was awarded. I was shocked at how quick that was.

Fight it all the way

That should say received the paperwork not reviewed.

Thankyou. He's 10 and has ehlers danlos syndrome and sensory processing disorder. He's had middle rate care since he was 5 months old and high rate mobility since he was 3. Then suddenly it stopped. Meanwhile my 12 year old who has AS has got what would have been a lifetime award of low rate care although in reality they will reassess him when he is 16 when they change him from dla to pip. I don't understand how they work it out as my 12 year old is disabled but much less so than his brother.

The worst part isn't the money or the loss of his mobility car. It's that the dwp keep saying he isn't disabled when he obviously is. It makes me feel like I'm pathetic for making a fuss and I should be able to look after him easily like everyone else manages to do. It's a constant juggling act managing his energy and pain levels. He wants to do everything that his friends do but he ends up crying with pain and exhaustion when he tries. He played tag in the playground at lunchtime and 20 minutes later the school called to say we needed to come and get him because he wouldn't stop crying. This happens a lot and the school senco wrote it all down in a long letter to the dwp but the dwp said that was normal for a child his age.

Oh muddling such a poignant and beautiful post. Crying here.

My son has ASC and I can often feel the wind taken out of me chest when I think about school years or whether he will ever be independent... The unknown is scary, but also welcomed. Knowing what's ahead isn't always desired.

Having said that, I feel so lucky my kids are healthy, I cannot begin to imagine having to go on after out living one of my children.

I hear you. Hope your dd is feeling much better soon. My youngest is a hospital frequent flier with his conditions and also is autistic.bloody hard work but you gotta do what you gotta do x

And I can confirm that carers allowance is an abomination

YANBU to think that but I certainly don’t feel it. Maybe it’s just become my new normal so I’m de-sensitised.

Scottish carers are about to receive a tiny increase in the manner of a couple of £200ish payments a year. I wonder if we'll get a cape too?

We got a £2 pay rise this year but if u get income support they take the £2 off its so insulting to carers I mean wtf it's just £2

So insulting isn't it?

Having an insight into what others have to go through, will make any decent human show empathy.
I think it was good of you to recognise this OP.

XX your posts are reality.