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.

Why the fuck should I be 'worried' that you'd report report my post?

I already told you I had reported it myself.

Another bit that you chose to miscomprehend then is it.

Honestly - you must really have it in for me. What's the problem. Have I posted on Teenagers for you too much?

Op, have you had a carers needs assessment done?
In my local authority only those children with the most severe and profound disabilities get support from the children with disabilities team however families who have several children with disabilities also can be added on to the cwd team after a carers assessment due to the extensive difficulties parenting more than one disabled child brings.
Good luck

Bloody Nora!!!

There is no need for this.

Step away from the thread. Please.

From what I have read BOTH of you have had to fight very hard for your children. You have fought the same battles but in some instances achieved different outcomes. This is not because one tried harder than the other it is because each local authority and local NHS work to their own tune. Post code lottery is not a myth.

You are battling against each other when both of you have fought the same war!

Each of us have different strengths. Different breaking points. Different levels of how much pain we can take. Stop measuring who is stronger. Wiser. More informed. Better. Loves their kids more.

Life deals the cards. How you play them is down to you. Respect each other. Offer advice don't force it. Be understanding if someone chooses a different path than you. We all make our own way in the world. That's what keeps it spinning.

Be a lover not a fighter

I don't know who you are Funnyfoot but you talk a hell of a lot of sense.

I mean honestly!
I took my pearls off hours ago to put on me winceyette nightie!! You two have made me put them back on again just so I could clutch them.

there is clearly a bigger battle to be had if those who are meant to support us are letting us down. Pool your smart, well informed resources and fight with them not each other.

Much love to all I'm off to have a gin and tonic with ice.... minus the tonic and minus the ice.

cheers!

Sometimes the stress does get too much and we do let it get to us, we are ONLY human, and the pressure SN's parents are under is often immense.

I personally would rather people release steam here on this board than snap at the kids they are so desperate to help. If that offends anyone - tough, but I do think we need to bear in mind that those giving advice via this forum may themselves be under a lot of stress, or have SN's themselves etc.

We are ALL doing the best we can within a corrupt system that isn't fit for purpose in many parts of the country.

OP - Don't be scared to go round the local schools and choose the one that looks like it will take your concerns over your child's health seriously. medical grounds is a criteria on the school admissions criteria - I chose a nursery on the advice of the HV's in my area at the time. I expect the school nurse service can also advise. Some mainstream schools have a nurse onsite.

Not wishing to join the bunfight but we had similar problems last year in that the safeguarding team thought we needed help but were not the right people to provide it and the disability team refusing to take us on & hence were discharged.

We have now been accepted onto the disabilities teams books following another crisis and a letter to the director of children's services (in charge of both education and social services) copied into our MP. It helped that SS were also besieged at the same time by referrals from CAMHS the SEN team and schools. Like your case everyone at lower level believed someone else should be providing the help so asking the question of the person responsible for the lot of them resolved which team should be helping.

Telling someone that they are not fighting hard enough if they are unable to get support for their child is victim blaming.

You shouldn't have to be tenacious and fight tooth and fucking nail to access support for a child with a disability. It's fucking awful that parents are made to do this. So fuck off with blaming people for not fighting hard enough.

wetaugust Wed 12-Feb-14 23:17:05

We don't go in for other poster bashing on the SN boards funnily enough. We do support on this little piece of MN

Clearly not.

Good - I'm glad you can see my point of view.

Perhaps you may pay us more regular visits in future.

What, with being told to fuck off and being called dim?

That's support, is it?

Good - I'm glad you can see my point of view

You took that from my post?

Your comprehension isn't up to much is it.

imagine so. It's still showing on mine.. though I do have a child with special needs and hopefully I have not been unpleasant

Just how is this helping Hedgehog??

Wetaugust you are an inspiration and your story helps other people to push for what they need. I've never known your advice to be anything less than helpful, even if following it doesn't get the poster what they need or want at the time.

Maryz you are one of the most amazing posters who gives so much of themselves despite still having difficult times yourself. You've helped so many people who despair, see that they can cope with the teenage years.

You are both straight talking, no-nonsense, resourceful and helpful posters.

Hedgehog I hope the budgeting is going well. You were really brave to sit down and examine your budget to find every last bit of 'spare' money.

I think the issue with SS is that for each child, you don't qualify. However, you may find that as a whole you qualify if you push it.

I was turned down the first time. Then, I reapplied and they realised that it was DD2 and 3 who were at risk because of DD1's behaviour, which in turn was caused by the lack of support in the evenings. She was accepted, but I'm almost certain that me offering to suggest I was hitting her so that I ticked one of their boxes showed the SW how desperate I was. I'm not suggesting that's a course you should take, but I don't think it would be unwise to be very clear about how near to breaking you are.

Hedgehog sorry if I've missed it but do you have a Family Outreach Worker?

We had one, was referred through children's centre I think as we had a child under 5. It was basically to bring together all aspects of support and she acted as an advocate when fighting for other avenues of support, she would look stuff up for us, make referrals etc. She visited us quite frequently and it was really helpful.

I'm not sure how much difference it would make if you already have SS involvement but it might help a little bit to have somebody there who knows you and can see the whole picture. Sorry if it's not helpful.

^But what really upsets me is that this thread is no in SN Chat, where presumably it has been read by a lot of people who post regularly in SN Chat and not one of them has stood up and said that this sort of aggression isn't on.
^

Well perhaps people on here can see for themselves what happened. I'm down here helping Hedgehog and a couple of MNers who rarely ever post on here follow the thread from AIBU and are determined to misconstrue what I said about support.

I then get told to 'fuck off'.

They then go on to unfairly state that it's

Always the same on the SN boards. Do as we say or we will make your life hell.

Then you Maryz pile in telling me that I have never reached 'rock bottom' which is framkly an extraordinarily misinformed opinion which you would be aware of had you posted here more regurlarly instead of just coming along for a bun fight.

And then, like Lady Bountiful, you inform me you will not be reporting my post. Well, dear, no point as I'd already told you I'd reported it myself.

And then you come on here again this evening and single me out for citicism conveniently ihnoring the others who told me to 'fuck off'.

Fair handed?- not.

So it's hardly surprising that the free-thinking folks on SN who don't actually need you to make their minds up for them have chosen to see what this thread has deteriorated into - a personal attack on me. Probably because when Hedgehog asked for help all she got on AIBU was the offer of a tissue and told to be kind to herself.

When what she actually needed was pointing to the specific piece of legislation that should enbale her to initiate her proper request for help.

Let me think - Tissues or a formal request for assessment that may lead to support.

Hard choice that one.

So stop persecuting me., it's starting to look unleasantly like harrassment.

Have a lot of posters followed this thread from AIBU into SN purely because it was already on their list of 'threads I'm on'? The tone was set in AIBU and now it's brought all that with it to SN

I saw this thread in active, SN board threads come up on my active thread list because I have opted in to the SN boards. I have a child with SNs and I read many threads on here and occasionally post.

Another reason why moving it was daft. We don't need this sort of unpleasantness on the SN boards

The unpleasantness is coming from a SN stalwart though?

But what really upsets me is that this thread is no in SN Chat, where presumably it has been read by a lot of people who post regularly in SN Chat and not one of them has stood up and said that this sort of aggression isn't on

Maryz I think that no one has said anything is telling in various ways.