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At breaking point with DD and DS1.

(78 Posts)
MerryCouthyMows Mon 18-Feb-13 10:31:33

DD has never had a formal diagnosis of ASD (am currently pursuing that), but when she was 4yo, the Paediatrician told me "She's definitely on the spectrum, HFA" and handed me a stack of leaflets about ASD and left me to get on with it for a decade (!).

DS1 has always been, erm, unusual. Could hold a full conversation with you at 18mo about what makes something intangible (!), and anything remotely Spider-Man related, and is still the same today, was IQ tested at 8yo, found to have an IQ of 132, yet has the social skills of a squashed ant. School are now mooring Aspergers now he's in Y6 and any costs relating from a diagnosis won't be out of THEIR budget.

Now, the problem. DS1 has NO social skills. At all. He has really irritating stims, like clicking a pen on and off for HOURS, tapping, fidgeting, pacing up and down a room etc. He doesn't understand why something that doesn't annoy him (and in fact makes him feel calmer) CAN irritate the fuck out of other people. And he doesn't even realise when he's been stimming either,

DD has sensory issues. Walk past her on the stairs, she has a meltdown, even if you don't touch her. Click a pen repeatedly, and she is in MAJOR meltdown.

I am having at LEAST 15 meltdowns a day from DD, where DS1's stims have exacerbated her sensory issues, and at least 4 from DS1 where DD's screaming and crying during meltdown have wound him up till HE loses control.

All the while, DS2 is crying and covering his ears because his sensory issues mean that he needs an almost silent house. And DS3 is hiding under the table because there's so much noise from everyone else. DS2 has 'Autistic traits' my arse, he has Autism!, and DS3 is being assessed in May by the Multi-disciplinary team.

Assessment is more readily forthcoming now, since the old Paed retired and we have a whole new team, who don't seem to be quite as into protecting their budget!

At these points, I go in the kitchen and cry. I'm NOT depressed. I'm really not.

But this is too much for one person to cope with, and I get NO help, because they don't have FORMAL diagnoses.

Which were deliberately withheld under the previous Paed.

I personally think DD has PDA, number of things, but mainly that techniques for NT DC's JUST DON'T WORK, techniques for DC's with ASD JUST DON'T WORK, you ask her to lift her feet please so you can Hoover, and she goes into meltdown. There is plenty more.

Could someone please LINK ME to the strategies for dealing with PDA? I need to try something, I'm at the point where I will have to make a decision who stays and who goes into FC, because of the level of violence DD and DS1 aim at each other, I'm starting to think it's the only way to keep them both safe. But my heart is breaking at the thought of it.

It doesn't help that I'm disabled myself - I have epilepsy and arthritis, tire easily, am in pain a LOT, can't physically DO all the housework, yet if I ask DD to help (she's the oldest, nearly 15yo), she goes into meltdown at the merest suggestion, and if I ask DS1 to help, he WON'T unless DD does EXACTLY the same amount of jobs. Because everything has to be scrupulously fair or HE melts down. So neither help,
without 2+ hours of meltdowns first.

I'm at my wits end.

Please help me to cope with my DC's.

katcatkat Mon 18-Feb-13 13:45:06

can I just say the child protection thing is a load of bollocks I live not that far from you (other side of river) and have social services disability team involved despite previous (and far more recent) CP involvement.
They are trying to fob you off.

ArthurPewty Mon 18-Feb-13 13:49:11

Message withdrawn at poster's request.

MareeyaDolores Mon 18-Feb-13 14:17:52

If you had to go in overnight for the biopsy/ treatment (which considering your seizures etc wouldn't be that unusual) and had no-one to look after the dc, SS would have to offer overnight foster care... at which point someone external would have seen the full impact of all of having them for 24h...

MerryCouthyMows Mon 18-Feb-13 15:03:08

Other side of river? Wouldn't that be a Suffolk LA though? I have heard tales that Suffolk are marginally better than North Essex...have considered moving but can't uproot the DC's, especially DD in Y10.

MerryCouthyMows Mon 18-Feb-13 15:04:20

I'm NOT thinking about the possibility of an overnight stay after my treatment. I'd probably end up doing what I have to do EVERY time I am admitted to hospital & discharge myself AMA.

MerryCouthyMows Mon 18-Feb-13 15:05:26

And yes, I KNOW they are trying to fob me off.

After 15 fucking years of it, believe me, I KNOW!

But how do I get them to STOP fobbing me off?!

MerryCouthyMows Mon 18-Feb-13 15:05:54

On the plus side, SWAN UK form now 50% done...

ArthurPewty Mon 18-Feb-13 15:12:30

Message withdrawn at poster's request.

MerryCouthyMows Mon 18-Feb-13 15:32:59

I now have : A GP appointment on Wednesday for DS3 about his viral lurgy, if he is still ill.

A GP appointment on Thursday, about getting DD FORMALLY assessed for Autism.

Followed 10 minutes later by a GP appointment for DS1 to see about getting HIM referred for FORMAL testing for Aspergers.

Followed 10 minutes later by an appointment for DS2 to get him FORMALLY assessed for Autism. AND to get the OT referral that Physio and the Orthopaedic consultant have told me to get. AND to have a review of his amazingly high strength inhalers - which ARE helping btw, for the first time ever.

THEN, on Friday afternoon, the GP is going to PHONE me about my joint problems and seeking a referral somewhere...

And this is just a QUIET week for appointments here!!

sickofsocalledexperts Mon 18-Feb-13 15:34:46

Wow - you are really motoring today!

MerryCouthyMows Mon 18-Feb-13 15:35:24

I have now officially HAD ENOUGH.

Though thankfully, DD has gone to Tesco with her friend thus giving me a couple of hours break from meltdowns.

Which is handy, because I was about 20 minutes from a meltdown of my own. An going to make the most of the peace, and cuddle up to my poorly DS3!

MerryCouthyMows Mon 18-Feb-13 15:36:17

This is a quiet week, though, sick of.

Which is why I'm at breaking point. This is quieter than usual...

sickofsocalledexperts Mon 18-Feb-13 15:43:15

You must get help. Tell the Gp that if SS fob you off again you are going to the local press with how poorly you are being treated by North Essex Children's division. Do it calmly rather than screeching though, so they can't put you down in the box marked "hysterical woman, patronise and ignore"

PolterGoose Mon 18-Feb-13 16:38:35

Oh Couthy sad and a bit angry for you thanks

Obviously there are loads of issues, I only have ds who sounds like a combination of your oldest 2! Anything I say may be totally disregarded as I realise I have nowhere near the experience you have, am also aware though that the type of immense pressure you are under can make it really hard to focus and think straight. So you are welcome to tell me to F off any time.

I know you are overcrowded and I would imagine having space would make a huge difference. What are your bedroom arrangements now? Who shares? Do all the children have at least somewhere and some time to be alone? 15 is a tough age for a girl, hormones and all that gender expectation crap make it stressful enough without having probable ASD too. However, I think she may be old enough and may be for from an SSRI anti-depressant. It may take the edge off. It certainly has for my dp who probably has AS.

Can ds1 be sent somewhere to indulge his stims for now. Right now your focus needs to be reducing conflict so indulging less desirable behaviours in the short term may be more productive long term in the interests of the whole family.

What are they like at their best? How receptive would they be to house rules around where certain things are allowed and around use of the common bits of the house?

Are they seeing you angry and sad? I mean properly visibly displaying emotions, or are you hiding it but telling them it makes you feel angry/sad/whatever? If they are all on the spectrum they won't believe you are feeling anything unless they can see it. Ds needs to see me crying to believe I am sad, bleeding to see pain and red-faced shouting to believe I am angry.

I can't do evening phone calls but if you PM me your number am happy to chat in school hours thanks

MerryCouthyMows Mon 18-Feb-13 18:35:49

Polter - they see me red faced and angry, they see me in tears - it's impossible not to any more. I try to stay calm, but I'm not a saint, and I don't have the patience of one...

As for sharing - DD is in her own, VERY small room. So SHE can get away but won't - "why should I go away when HE is annoying ME" is what I get. (Only one TV, in the front room!)

DS1 shares with DS2. He can't get any space - because if he wants to be alone, it means DS2 can't play in their room. Which means DS2 then melts down. <<Sigh>> their room isn't huge either - it's 10ft X 11ft.

I share with DS3. In a room 10ft X 10ft. And the tumble dryer, as that doesn't fit in my tiny kitchen. And any other crap that doesn't fit anywhere else. My built in wardrobe has a filing cabinet in, AND the printer lives in there!!

So no, no space for anyone to get away from anyone.

PolterGoose Mon 18-Feb-13 18:51:50

Couthy I kind of thought it would be something along those lines for sleeping arrangements. I do feel for you, I really do. But that isn't a lot of help.

What immediate things would help? I just wonder if we MNSNers can do some of the legwork for you, eg finding out and helping apply for grants? General advocate type stuff? Because you sound worn out. What if dd had a TV in her room? A shed for the garden where ds could go? I'm just chucking out ideas here. How close are you to getting a housing transfer? Do you have to do the bidding thing and also are you on the mutual exchange register? I am sure i have very little to advise, you always sound so bloody competent (which may be why the services don't get involved, you're just not a priority for them)

AgnesDiPesto Mon 18-Feb-13 21:14:56

Find a local carers charity like this one??
Ask them to send someone out to help you fill in the forms eg DLA for everyone.
Ask them to help you get a carers assessment - it does not matter at this stage whether any / all of your children are considered to be disabled enough for their own assessment, you are legally entitled to a carers assessment. if the council refuse to do an assessment (and an assessment does not mean you will get services) get a legal aid solicitor and judicially review that decision. Trust me no council is going to want your story to go anyway near a Judge. The Council cannot legally refuse to do an assessment without visiting you.

Contact homestart and ask for a volunteer to come and help you at home.

If the council refuse the carer assessment also go to your MP.

chocjunkie Mon 18-Feb-13 21:31:16

bloody hell, merry, you got a lot on your plate sad

in my council, they have benefit advisors who help with the DLA form - they also do home visits to sort the dla applications. maybe worth checking if this available also where you life? the cerebra guide is great but it still takes forever to fill it in if you do it yourself.

MareeyaDolores Tue 19-Feb-13 00:58:06
MareeyaDolores Tue 19-Feb-13 01:01:47

The Vinnies? My cousin is one and she's fab...

MareeyaDolores Tue 19-Feb-13 01:04:47

I think time and space to do the DLA applications (or someone else competent to do them for you) is key. Once everyone's disabilities are official and registered, then you have more money, then you get more housing points, eventually also more power to demand SS and education do their jobs

MerryCouthyMows Tue 19-Feb-13 02:29:51

I'm sorry to those that offered help, had a 4hr meltdown involving all 3 older DC's to deal with & calm down. DS3 now awake again, so am updating.

How do I go about getting a CARER'S assessment done? Who should I ask?

MerryCouthyMows Tue 19-Feb-13 02:30:41

There's NOBODY locally to help fill in CHILDREN'S DLA forms. Adults, yes, DC's, No.

MerryCouthyMows Tue 19-Feb-13 02:34:12

HomeStart decided that their volunteers couldn't give my family the help we actually need, so they stopped coming.

The help they were offering was just someone to sit with DS3 while I did housework. Nowhere but front room table to do paperwork, so was still impossible to get done while they were here. And can't do housework to order as I never know when my joints are bad.

HomeStart has changed a lot recently - was very different 8 years ago when I last had someone, they would drive me to the supermarket and everything back then. Now, all they do is 'keep an eye' on your DC so you can do the housework.

MerryCouthyMows Tue 19-Feb-13 02:37:11

Choc junkie - no advisors to help with benefits applications, at the council OR the JCP. Not even a disability advisor.

Currently a 10+ week wait for a benefit trained advisor at the CAB.

Charity lady that was helping me has part-closed the case now I have my own DLA, no funding to help further. She didn't deal with Children anyway. She actually isn't allowed to help me with DS3's DLA form, even though she helped with mine!!

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