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.

I think we all know a 'bleater' in real life. Not people who are at rock bottom, at all. People who just want to moan for the sake of moaning, continuously.

I have met lots of parents of children with SNs in real life.

'Selfish' and 'moaning for the sake of moaning' are not the words that spring to mind with any of them, the ones I know have varying circumstances and that is who we are talking about here, parents of children with SNs. Not just 'someone we know in RL'

Amber Sadly, in my line of work, I have met both types of parent. There are some horrible people out there. I'm glad you haven't had the misfortune to meet them. Or their poor children.

Amber I have a friend in RL with a child with SN, she isn't rock bottom, she likes to moan about the provision her son gets, when you say she can do x, y, z, she isn't interested. She just wants to moan about it, it makes her feel better obviously.

I myself have a child with SN, when I first came to the boards, I was continuously moaning about ds's school not meeting his needs and he was suffering severely because of it. People were telling me exactly what to do, yet I would come back and moan about the next thing, to be given exactly the same advice and so on and so on.

I needed a kick up the arse and I got one.

Oh God now I am paranoid I am a belated
I moaned when I was ignored and passed from pillar to post for years, it wasn't because I wasn't doing anything and neither is hedgehog
Some councils are awful and underhand and the way we a misrepresented in the media aka daily mail does not help. Very much a lack of empathy, what about the tax payer argument which a lot of crap social workers play off to make you feel like if you went public you would not get support

I agree totally Maryz, not just people of children with SN's should be told 'look after yourself'. Anyone with responsibility for another should be told the same.

As I said I was moaning continuously and I was probably not at my best, sleepless nights with ds, behaviour to deal with etc, etc. The reason I was so low, was because I felt powerless, helpless, I was complacent and I was letting my ds suffer at school because of it.

I found the more practical, this is what you need to do posts, you cant let this continue posts, these are your rights posts, these are the organisation that can help you posts extremely helpful. They gave me the strength I needed to carry on.

I appreciate that are parents who have moved heaven and earth and got nowhere. However, I wouldn't have found 'you wont get any help, no matter what you do' posts helpful at all. As I was already feeling like that.

when you say she can do x, y, z, she isn't interested. She just wants to moan about it, it makes her feel better obviously

Obviously I don't know the person you are talking about.

I have heard people poo poo suggestions made to them by well meaning informed people. I have then in some cases, either pointed them in the direction of people who can help them practically, or done it myself. Off the top of my head, I know two parents who weren't getting the help they needed because they were illiterate. Obviously they weren't shouting that from the roof tops, they were just muddling by...probably looking like selfish bleaters.

Some people due to their own experiences find it very hard to engage with professionals and 'authorities' many are fearful of intervention, it has to be said also, that some professionals treat people according to their perceptions of them. It's often easier for the middle class educated mother to engage effectively with professionals, than it is for an uneducated, distrustful of authority, working class person. Some of that is down to ability of the parent and some of it is because some professionals know that one of those parents will know how and have access to the facilities to bang on doors and one won't.

Thats just a couple of reasons why people can't effectively campaign for their child and both are reasons that won't necessarily be obvious, some will see it and some won't. Some will judge, some won't.

Loads more reasons, but I'll leave it there for now.

Just remembered why I don't post here....sadly it only takes one very forceful character to ruin it for others.

Nobody has to be vile.

Is it like this all the time Jake?

I am not disagreeing that there are 1001 reasons why some people cant campaign for their child needs and that some parents might need a lot of support to enable this to happen.

There are also parents whether that be 'working class' or 'middle class' who knew nothing of the sn's system, who made it their business to find out.

There are also parents, who do not make it their business to find out, not because of lack of ability, they just leave it up to someone else to do it for them. Usually, I should imagine because they are not aware of their rights as parents. Which is why practical suggestions as well as the 'there, there' approach is so important.

Yes there are 1001 reasons why some people struggle with this stuff.

Which is why it is so offensive for someone who is in a privileged [because being educated and intelligent, not to mention financially secure, is being privileged] position, to be so horribly down on those who are not, for whatever reason.

OP, why on earth do you post in AIBU about such sensitive matters? I'm sure there are better places to get help. And if you just want to let off steam, then say so. But this AIBU business - that's not for the fainthearted or the downcast or the troubled. I bet somebody on the SN board could offer practical advice. Maybe PM people whose posts interest you.

No. No. No. I think the people who post any kind of sensitive matters in AIBU are making an error of judgement.

My interpretation of what Wet meant is obviously different to yours. I understood it as giving people the power to help themselves with practical advice, is better than telling them 'help is impossible to secure'

Well, if you're up for it. The OP sounded a big fragile to me, but maybe I'm wrong.

I was just annoyed yesterday that yet again we were told no help available for us as we are in a grey area and no ss team will take our case on.

I have got advice before from sn board and have acted on it hence statement application and dla renewal etc.

Yesterdays post was just due to frustration at not having any support from ss.

Glad you came back Hedgehog, what kind of help are you after from ss, respite?

Hedgehog80 now you are here on the thread again, I would like to apologise for my part in the highjacking of your thread.

Im really sorry

To be honest initially I was very pissed off that ss had been involved.

The pre school had complained that soon after dx dd2 was not attending regularly, the diabetes nurse made a referral to ss citing 'parenting issues and inability to cope'
After meeting with us the sw changed it to 'medical problems needing further support'
Sw led us to believe we might get the following:

3 hours respite a week
School transport
Grant for special beds for dd1 and ds1
A family support worker from cwd team

But no ss team wanted to take us on, case will be closed.

Thats why you need to take it higher hedgehog? So that a decision can be made about what team will take the case, if you fall in the grey area but are eligible for support???