To think it is ridiculous there is no help for us

[Edenviolet]

All four dcs have disabilities/other health problems.

All four receive dla, 2 receive higher rates for both components.

Recently had a CAF referral done, initially we were told we would get 3 hours respite a week, then the sw manager said no we didn't qualify for that scheme.
We were told the early intervention team couldn't help us and we we referred to children with disabilities team.

CWD team said no, they would not take on our case as none of dcs have learning difficulties.

Sw then referred to the children in need team, they said they would not take the case on as dcs have lifelong conditions and they only deal with short term conditions whereas CWD deal with long term (but only if there's a recognised learning problem as well).

Sw is closing our case, thes nothing she can do and no help she can offer.

I can't believe we are stuck in between each SS team and none of them can offer us any help or support.

How nearly 2 is your youngest? Will you be eligible for the 15 hours for two year olds? I don't know much about it, but would an insulin pump help your DD when she first starts school? It sounds like the school will quickly realise how much support she needs.

I know for a fact that this one is inaccurate. Your best ports of call for advice here are IPSEA, or SOSSEN. The criteria for statements aren't merely academic progress/needs, they're also physical and social needs which can't be met by a school at SA+

If you get dla and the disability element of tax credits for two children, can that not fund childcare for the youngest for so many hours a week. Respite is hard to get, particularly if they are at school all day.

Budgets are at a bare minimum so you need to see what you can cover yourselves.

If your husband uses the car during the day then do you really need it? Would it not be cheaper to ditch the car and use public transport rather than it being sat on a car park all day.

Your husband needs to pitch in at weekends and at night as you both chose to have more children knowing the level of care already needed for the elder ones.

Dd2 is on the list for a pump. Can't wait to get her on one.

Dh does a lot and works long hours too. The hardest to deal with is dd2 diabetes which she only got a year ago so saying we had more dcs knowing the problems is not true-we didn't know dd would get diabetes.

Dh has to work some weekends as well.

We are just above the cut off financially for ds to get 2 yr old funding.

From September more 2 year olds are eligible, I think one of the criteria is dla.

Just checked and it is, so you'll get the 15 hours when they turn two.

Ds2 is two in April but doesn't have a place yet, at least from sep he will get the funding that will help.

Hopefully that will get you 15 hours a week to have a bit of time, but I can see that it must seem a long way off. If there's any way you can work your budget to afford it, it really sounds like you need him to have a few hours childcare, before you become totally overwhelmed. Could you talk to your councillor about needing more ss support?

I know nothing about the husbands behaviour.

Respite is hard to get, but she is legally entitled to it as family meet the eligibility criteria. I agree with others. Contact your local carers charity, they can and will help and will know your local authority better than you . Contact diabetes uk and see what they can suggest. Make a level 1 complaint to ss, this only has to be a phone call. Ask your gp to write to them explaining your situation and what pressure it is putting you under. Contact your mp regarding all of the above. Ignore people who have absolutely no idea what they are talking about I think you would be better off starting these threads in a different section tbh

Why can't your DP look after all the DC while you have a break.

I could understand if you was a lone parent with no other option. But to me you have a partner who is able to take over while you go to a coffee shop with a magazine/ book for a few hours.

Dh works a lot of the time and to be honest it is really hard looking after all four alone, especially as dh dislocates joints a lot too.

We just need some extra help.

Sorry i didn't realise your DP has medical problem too.

It's really hard for anyone, Hedgehog. But you do it 24/7.

Ss will not provide you with respite they will rightly expect your dla to pay for it.

I just find it so hard that we are in a ss grey area when it comes to getting some help.

Hedgehog I can see it's hard for your DH but since respite isn't happening at the minute, he's going to have to facilitate at least a short break for. You sound like you're on the way to a crisis situation. I mean that nicely, we all have our limits.

Its not just the respite, the hospital referred us for support and help getting dd2 a statement as well.

I could really have done with having a cwd team sw, somebody who could help us as a family. I don't just need a break, I need support. They had schemes where they can provide a mentor for dcs, schemes to have three hrs help a week etc but cwd team won't take us on.

Also somebody to help with the statement application, etc.

Oh hedgehog :(

I understand your frustration, I've been through the SS saying they can't help etc, it's incredibly disheartening. And we are not dealing with nearly so much as you :(

The only practical help we got was HomeStart which was quite good although due to childcare issues the volunteer couldn't come that often. But it helped a bit (just from having someone to talk to apart from anything else)

No advice I'm afraid just wanted to give you a virtual hug xx

What issues does each child have? One has diabetics, the other 3?

I would ditch the car personally. They eat money. If you need the hospital or something it will be cheaper to just get a taxi

We moved to London. Before had x2 cars. Spent around £8000 a year on insurance/ tax/ mot/ petrol/ parking. Now maybe £1500 on taxis when we fancy, buses, odd day car hire

Hedgehog, get in touch with contact a family.
They will help.
They will put you onto other services.
Then there's various services in London for after school, the holidays and weekends.
Ta's sometimes take on work after school/weekends for an hour or so.

The help doesn't start and stop with SS.

I completely agree with you jadedangel, but it's like talking to a brick wall with some of these posters on aibu. It's pointless explaining.

I don't know where you are hedgehog, but we have an umbrella charity under carersuk and they hold carers cafes weekly, you can have a manicure and have your haircut at ours whilst they after the children. They do parents together groups, young and sibling carer groups and they will give you a named person who will help you with forms, be there for you to talk to. I w we are v lucky though, but do look on carersuk and do look into parent partnership,I think they are called, they help with the education side

I really resent the tone of some posters' questioning of the OP on here. Perhaps the thread would be better not on AIBU, but kindly bugger off to the Daily Mail comments section if you have nothing of any use to add.

Katnip I know it's sick isn't it? I was not surprised sadly. People have NO idea what it is like caring for one disabled child, let alone more than one. I don't...but I know from my friend's suffering that it is not something most people can judge, comment or have any opinion on.

No sleep for night after night after night...plus the weight on your shoulders of a child struggling with things others take for granted.

Artandco she can't have no car with her life. What a fucking stupid thing to say.