Here some suggested organisations that offer expert advice on SN.

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.

PipinJo Mon 18-Feb-13 10:39:18

You need to work on ds1 stimming if you stop that it will stop DD meltdowns and then Ds1 meltdowns.

Remove pens only for homework and make him use them appropriatley.

DD needs a desense programme for touch and walking past on stairs.

ABA would address all these issues...ds hated dirt so we started with face paints tiny bit on arm and built up to full face painting and sitting in sand pit with sand too.

sickofsocalledexperts Mon 18-Feb-13 10:56:36

I agree that even a few hours of behavioural support would help - do you get direct payments ?

MerryCouthyMows Mon 18-Feb-13 11:03:31

I get NOTHING. No support, no respite, no DLA, no direct payments, no family support, no advice, no NOTHING.

I'm floundering tbh. Children With Disabilities team at SS REFUSE to help me because my family had prior involvement with Child Protection - when DD was born, I was just 16, a Care Leaver, and on the 'at risk' register myself, so DD automatically went on the 'at risk' register, and we automatically had involvement from CP.

DS1, born just 4 years later, had no involvement with CP, wasn't put on the 'at risk' register, my involvement with CP finished 10 flipping years ago.

The school fills in a CAF, it goes to CWD, they say they can't help because of red tape and prior CP involvement, send it over to CP, who come out, say there's no issue with his I look after my DC, say they can't help, then it gets closed again until another CAF is filled in.

I'm at a loss.

sickofsocalledexperts Mon 18-Feb-13 11:08:59

Go to the GP with the longer post you wrote out above. You need referral to CAmhs for DD if she is harming her siblings. You may need meds, or even residential for her for a while (or weekly residential). Kick up a stink, but tearfully not angrily. Explain to the GP that this is an entirely separate issue from flier CP but that you are being fobbed off.

MerryCouthyMows Mon 18-Feb-13 11:09:19

And how the hell can I get ABA for DD when even the school can't get the LA to ASSESS for a statement?

DD has been on SA+ since she was 3yo. So 12 years now. She has at least a 4 year development delay in almost ALL areas.

And don't you think I'm TRYING to work on DS1's stims?! He writes 24/7, and will only use ONE specific type of pen. He barely writes at school, despite being Brainbox of the year, because he isn't allowed to use 'his' pen!

If I take away his pen, HE melts down.

So either way, I have ONE of them, either DD or DS1 in meltdown.

I CAN'T COPE any more.

I've just been told that I have CIN3 changes from my cervical smear, but they think it might be worse than that, and that it is actually early stage cervical cancer. I'm having a colposcopy and cervical loop diathermy and a cone biopsy taken on the 26th to determine a) If it has, as they suspect, developed into early stage cervical cancer, b) how deep it goes, if that is the case, and c) what further treatment I may need.

I just CAN'T cope without some strategies right now.

sickofsocalledexperts Mon 18-Feb-13 11:09:53

Earlier not flier, bloody I pad

MerryCouthyMows Mon 18-Feb-13 11:10:39

Thing is, every time I push for help, SS tell me (off the record) that if I can't cope with the DC's, they will put them in FC.

They REALLY don't want to pay for help in my part of Essex.

sickofsocalledexperts Mon 18-Feb-13 11:12:36

Jeez Merry. Wonder if anyone lives near you and can support you. Where roughly are you?

MerryCouthyMows Mon 18-Feb-13 11:16:59

GP's round here won't refer you anywhere, for anything. And that's the other surgery too. I can only GET to two GP surgeries. And the other hasn't been taking on new patients in the whole 8 years I've lived here.

I have TRIED, repeatedly, to get DD sent for formal assessment for Autism, but have got precisely nowhere. Despite her SALT issues when she was younger (under SALT till 7), despite her social skills issues (bullied right through primary, no friends, even now has constant issues with her 'friendship' group - tbh I think they are nasty users, but DD can't see it), despite her sensory issues (well documented, even at school - she leaves a class 5 mins after everyone else as she melts down in the corridors otherwise because of the crowds).

Not going to happen. Unless I pay privately. Which as a Lone Parent, who is too disabled to work, just AIN'T GONNA HAPPEN.

Her dad is next to useless, and 600 miles away, and has only been involved in her life (through phone calls and twice yearly visits) since she was 12yo, so that's a no go for support.

sickofsocalledexperts Mon 18-Feb-13 11:21:57

Merry, it is shocking that they will give you no help to keep your kids at home but will give you foster care - way more expensive for the state and worse for the family. I think you need a legal advocate to make your case more strongly. If you write a letter, i will look at it for you, edit it if necessary and perhaps you can then send to the head of children's services. If you were able to use a legal advocate, or threaten to take your story to the local paper, it would make them pay attention. But really you do need some calm and respite now to look after your own health. Anyone around who can give you a break?

MerryCouthyMows Mon 18-Feb-13 11:22:42

North Essex. I'm NOT depressed, I'm just falling to bits under the stress of it all.

I'm actually starting on the FORMAL assessment process for DS3, and due to his allergies (pretty life limiting ones) and his hyperactivity and his 'probable' ASD, I need to write a request for statutory assessment (as advised by whoever SenCan are calling themselves this week) AND fill in his DLA form that I've been putting off.

I need to arrange DS2's Physio re-referral appointment, do ALL their Physio (takes about 4 hours a day, overall, as me AND 3 of the DC's have daily Physio to do).

Sort out housing. (Severely overcrowded, local councillor trying to get is moved up the list due to medical needs)

DS3's Speech Therapy.

DS3 is ill. Has had some grotty virus for almost a week.

I haven't slept properly in the entire 2 years since DS3 was born, as he is hyperactive 'with a high probability of ADHD'.

I'm drowning!

MerryCouthyMows Mon 18-Feb-13 11:24:43

There's far more, but tbh I'm breaking it into chunks to try to get stuff done.

IPSEA have a template letter for requesting stat assesment on their website, don't they?

Anyone wish to talk me through DS3's DLA form after 9pm tonight? (Can't do that with all the DC's about!)

sickofsocalledexperts Mon 18-Feb-13 11:25:39

Could the local councillor be an ally?

MerryCouthyMows Mon 18-Feb-13 11:27:51

Need to get to GP with photo so they can do my bus pass form too, tomorrow.

For some reason, I can only book DS2's Physio appt between 1.30pm and 3.30pm?! SERIOSLY?! A 2 hour window in the time when they will all be in meltdown? FFS!

MerryCouthyMows Mon 18-Feb-13 11:28:32

He is dealing with the housing, but doesn't deal with my other issues. Tried that.

MerryCouthyMows Mon 18-Feb-13 11:29:18

I keep joking that I need a secretary for all the admin I need to do!

sickofsocalledexperts Mon 18-Feb-13 11:31:21

Here is what you write

(address to head of children's services in your LA, can google it)


Dear mr/ ms ....

I am writing to request a statutory assessment of my son (insert name) for Special Educational Needs under the terms of the 1996 Education Act.

My son has been seen by (insert doctors nme) and given a diagnosis of ..........

I understand that you will contact me as to how the assessment will now proceed, my phone number is .....

Yours sincerely

Tbh, if you get this one going, maybe they will aso talk to you about dd

I can talk to you about DLA, do u want to pm your number?

HotheadPaisan Mon 18-Feb-13 11:34:10

Info from NAS about PDA - people tend to listen to NAS

Understanding PDA - great strategies for helping children who struggle with high anxiety due to everyday demands which results in obsessive, controlling behaviour and angry outbursts

What is PDA?

PDA diagnostic criteria/background info

PDA comparisons

PDA distinctions

PDA Education and handling

PDA parent group - excellent info and current advice, not as fast moving as the Mumsnet Special Needs forum but some very experienced parents on there

Motivation and Reinforcement by Schramm (2011 Edition) - very good on why some children are so controlling, explains it all really well

Huebner's book What to Do When You Worry Too Much is very good on anxiety and practical strategies for ages 6-12, there are others in the series on sleep, anger, OCD, negativity and bad habits

Evaluating the effects of medication on people with autism by Temple Grandin

MerryCouthyMows Mon 18-Feb-13 11:35:18

Will do that, the DLA form is stressing me out somewhat, I've only just finished the process for my own DLA. Thank you. I'm struggling, and I need all the help I can get.

As it's half term, I'm going to book appointments for all the older DC's, to ask for referral for Autism testing, even the SN HV thinks they should all have formal testing.

Still need to arrange eye tests and dental checks for them all too. <<sigh>>

MerryCouthyMows Mon 18-Feb-13 11:38:05

Thank you for the links, I will go and have a read. Can't afford anything paid for until 26th Feb, IS paid fortnightly, only get CTC this week.

Any paid for books will have to wait till then!

PipinJo Mon 18-Feb-13 11:45:45

Merry if your income is low or on benifits you can get help from Caudwell Children. You have to take the control and do it yourself. That is mine and lots of parents experience. Then when you collect evidence of the treatment working you have to then go to tribunal to fight for's not easy at all...but this is the norm for most of us pending which LEA you live in of course.
Having 3 dc with needs is very difficult and disability team wont take on dc if not formally diagnosed so diagnosis has to be for first task as this then spurrs on statement, DLA, Direct Payments with SW etc etc it sounds like you have been fobbed off by SW's saying you are with CP team though.

Cereba Charity do an excellent Booklet on DLA for Brain Damage Children (incl ASD) you can download that for free from their website.

You need to contact everyone and scream out for help like you are doing here. hope you get help soon as you sound at breaking pointsad

MerryCouthyMows Mon 18-Feb-13 13:21:30

Agh now t'interweb playing up again, I can't see any of the posts on the thread FFS.

MerryCouthyMows Mon 18-Feb-13 13:26:20

And my massive post seems to have vanished into the ether. Feck. As I started it before the phone call from my toxic mother, I can't even remember half of what I wrote. Balls. Never mind.

I'm going to try ringing that Cauldwell place if I can find a phone number.

MerryCouthyMows Mon 18-Feb-13 13:27:52

Currently attempting to fill in a registration form for SWAN UK. Which is difficult as it's half term and DD has had 5 violent meltdowns do far today and DS1 has had 3 meltdowns.

Never get time to do my fucking paperwork.

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!!

MerryCouthyMows Tue 19-Feb-13 02:39:24

It's not just the TV in the room, Polter - I have sky in the front room that DS2 & DS3's dad pays for as additional maintenance. Which she won't have in her room.

If I can't afford it myself for the front room, I certainly can't afford it for her room.

And if I paid for it for her room, and not for DS1's room, it would affront his sense of 'fairness', and he would go BOOLOO.

MerryCouthyMows Tue 19-Feb-13 02:44:28

I'm currently at the bottom of band B, with an expected 4-5 year wait for a suitable house.

Private is not an option - there is no deposit guarantee scheme in my council. And there aren't ANY private properties within the LHA that I can still get DD to school from. Not ONE, and they are all considerably over, like £100 a WEEK over the LHA!

I CAN'T move DD's school - her current Secondary is giving her 6+ hours a week help still, plus floating support in all the rest of her lessons. EVERY other school in the town would a) Only give her 30 minutes a week, and b) make her start doing an MFL GCSE, when she dropped MFL in the middle of Y7 for her LS lessons.

She's in Y10, I can't consider it!

MerryCouthyMows Tue 19-Feb-13 02:46:41

We already have a shed in our (postage stamp sized, modern new build) garden. Provided by the Housing Association.

We are not allowed to take it down, insulate it, run electricity to it, or put up a second she's in the garden. Not that you could - there wouldn't BE any garden left.

MerryCouthyMows Tue 19-Feb-13 02:57:45

Ugh, I don't know, I just have these days weeks months every so often, where it all gets me down and über-stressed, and can't take any more.

Then just when I really AM ready to crack, something eases up and I can just about muddle through till the next crisis point.

Having MNSN here to get it out, when I'm feeling overwhelmed, is a start.

Nobody in RL seems to know just how FUCKING hard it is. Getting through one of MY days is like trying to eat spaghetti with tweezers, or herding cats, or wading through Jeffing treacle! Or all three at once...

My biggest question is WHO do I ask for a Carer's assessment. I NEED one done. If only so someone else can SEE how hard it is.

And as of tomorrow, I'm going to start filming their meltdowns. I need some proof. And I'm going to flipping show it to the GP's.

Tomorrow I am already dreading. I HAVE to do the food shop. With all FOUR DC's.

There is nothing more stressful than facing doing a week's worth of food shopping with 4 DC's with Autism, all intent on killing each other, all melting down because of sensory overload, trying to ensure that DS3 isn't poking his fingers into yoghurts or anything dairy that could kill him (the supermarket is like one big allergen ridden pox hole for him!!), trying to remember who eats what, what food is 'DS3 safe', what meals I can build around that, with bastards staring and tutting and huffing at me, or even worse, making nasty comments to me...

Aaaaarrrrggghhh! I don't WANT to do the effing food shopping in school holidays - can't we just starve for a week?!

isithometime Tue 19-Feb-13 06:51:52

Why not do online shopping?
There is no way i can take my 3 to the supermarket, far too stressfull and a big waste of time.
Place the orders when they are in bed or at school. Once youve done it a few timesyou will get quite quick.
Saves me a few pounds too as you can see your total and also you dont have to just grab the first item you see just bcos kids are screaming!!!

isithometime Tue 19-Feb-13 06:53:31

Plus you can book deliveriessahead, so you can make your half term order before they break up from school

MerryCouthyMows Tue 19-Feb-13 07:17:58

I have to go to the shops - can't do the 'ghost' payments that Sainsbury's and Asda do - they take twice the cost of your shopping, leave one lot floating in the ether for 10 days. I don't HAVE double the cost of the shopping in my account.

Then there's the allergies - I have to label read. EVERYTHING. DS3 has life-threatening allergies to dairy (lactose, casein, whey, milk protein, hydrolysed milk protein), tree nuts, legumes, peanuts, pineapple, kiwi, papaya he is severely anaphylactic to all these. Then he is also allergic to soy, strawberries, raspberries.

Online shops substitute. I can't have substitutes, a substitute can kill DS3. And if I say NO substitutes, half my poxy shop doesn't turn up.

Believe me, I've TRIED online shopping!

And even if something was 'DS3 safe' last week, the manufacturers often decide to make a 'new, improved recipe' version...that then makes it NOT safe. So even on things he has had before, I STILL have to label read.

DS3's allergies are so bad that he goes into anaphylaxis if he cuddles someone wearing Soft & Gentle deodorant, which, believe it or not, contains lactose...

I used to try to do my shopping online, before I had DS3's allergies, but now I HAVE to actually PHYSICALLY go to the shop.

It's a total PITA, but it's either that or DS3 could die.

MerryCouthyMows Tue 19-Feb-13 07:21:01

And in order to book the deliveries ahead of time, you also need the MONEY ahead of time.

Which I don't have.

I have been unemployed due to my own disabilities for nearly 5 years. Wasn't too bad when my ex was still living here, as HE was working, but when he left, I was left with no choice but benefits.

My first DLA payment is in 2 weeks. That might ease the burden a bit.

But right now, I can't DO Tuesday's shopping UNTIL Tuesday. Because the money isn't there.

MerryCouthyMows Tue 19-Feb-13 07:29:30

I'm busy psyching myself up! grin

A d why is it that just because I have to go outside, in public, mount fecking Vesuvius has sprung up on my chin? It's bloody glowing!

I mean, wtf?! I now resemble a pepperoni pizza, just because I have to go out. And my leggings aren't dry!!

It's funny the little things that seem like disasters...

Am debating the merits between Tesco and Asda, for today's shopping.

Tesco : Closer, I have more ideas what is DS3 safe and what isn't, MORE safe foods.

ASDA : Longer bus journey, but right next to Home Bargains, and I DO need some cleaning stuff...

Taxi home from both costs round about the same.

Sainsbury's is too far to contemplate with all 4 DC's, an hour+ bus journey, with 4 DC's on the Spectrum? No thanks!

Ditto Aldi's, again, either one needing an hour+ bus journey, one needing one bus, one needing two buses.

Waitrose is too expensive. And that's it for choice here. We don't have a Morrison's.

ASDA I think, this week.

MerryCouthyMows Tue 19-Feb-13 07:31:07

DS3 has been up since 6.00am. DS2 is up. DD and DS1? Unlikely to be awake until I get peed off with waiting to go shopping, and tip them out of bed!

isithometime Tue 19-Feb-13 08:15:16

Well, if you do decide to try againy tesco only take the money on delivery and you can check many of the labels on line.

PolterGoose Tue 19-Feb-13 08:55:22

Best wishes for shopping thanks

Do whatever you need to do to get you all through it, ignore the fuckwits, and don't look in any mirrors grin

MerryCouthyMows Tue 19-Feb-13 10:57:50

Isithonetine - thank you, I'm not ignoring your suggestion, honestly, but to google each individual packet online can take 4 hrs+, I can now do it in 2.5hrs in the actual shop. And substitutions are a bastard. And if I DON'T tick for subs, half my shopping doesn't turn up, and I STILL need to go to the actual shop.

And it's always heavy stuff that doesn't turn up, so I then end up paying delivery charges for the online order AND for a taxi home from the shop.

Get pissed off with essentially doing it twice over! grin

NoHaudinMaWheest Tue 19-Feb-13 11:30:35

Merry good luck with the shopping.
Can't say anymore sounds like a total nightmare.
Come and scream on here when you've finished.

NoHaudinMaWheest Tue 19-Feb-13 11:39:12

Re Carer's assessment. Contact SS and ask for a carer's assessment. Write email better for the paper trail as you know. Stress that you are at breaking point and remind them that they have a statutory duty to respond to your request.
Carers UK website has quite good straightforward info on how to take it from there.

chocjunkie Tue 19-Feb-13 12:13:02

try to prioritise DLA for your DS3 . you might then qualify for Carer's Allowance (afaik you can claim CA even though you are in receipt of DLA yourself). Getting DLA for your DS will also increase the amount you get in tax credits... so it basically should help financially quit a a bit.

have you tried Contact a Familiy for the DLA form. I talked to them recently and they also do home visits (thought not my area - but maybe you are more lucky)?

MareeyaDolores Tue 19-Feb-13 12:24:58

SCOPE not just for cerebral palsy

MareeyaDolores Tue 19-Feb-13 12:27:12
moondog Tue 19-Feb-13 12:33:47

Contact a Family are brilliant.
Also Citizens Advice Bureau could help.

MerryCouthyMows Tue 19-Feb-13 22:40:39

Chocjunkie - if I claimed CA, I wouldn't be able to get my Incone Support. As I get severe disablement allowance added on top because of my own disabilities, I would be losing ££, AND I wouldn't be able to claim Free School Meals for the DC's, which is currently worth £27 a week to me.

It's not worth me claiming Carers allowance yet.

MerryCouthyMows Tue 19-Feb-13 22:48:32

CAB haven't got any free appointments with a benefits trained advisor until after the firm is due back. Will try Cobtact A Family, hasnt heard of then before.

I have had a seizure today, taxi firm messed me about when id finushed in the supernarjet. Rung up, asked if they had a LARGE estate car they could send, and if do, how long it would be. Got told 10 mins.

After 10 mins, cab turns up. NOT an estate car at all, and surprise surprise, DS3's pram can't fit in the boot. He calls back, tells them I need an estate (like I STRESSED when I originally rang). I got told 5-7 mins.

After 20 mins, I rang them up again. They told me it was at Tye roundabout down the road, would be 2-5 mins.

Another 30 mins later, when is been waiting for a full hour, the taxi finally turned up.


Won't be using them again. DS3 was in meltdown. DS2 was in meltdown. DS1 was in meltdown. DD was in meltdown. And by that point, I was ready to meltdown too!!

ArthurPewty Wed 20-Feb-13 08:53:10

Message withdrawn at poster's request.

PlentyOfFreeTime Wed 20-Feb-13 17:55:36

Hi Merry

Sounds a living nightmare.

I think you need to start reinforcing boundaries and managing expectations. Just because the main TV has Sky doesn't mean that every TV in the house also has to have Sky and if they think it should then they need to be told in very certain terms that they are wrong - and the offer is a non-Sky TV or none at all - their choice.

There was a child at DS's specailist school who was inclined to have screaming meltdowns. It's really one of the least socially acceptable behaviours caused by ASD. They were moved to an area on their own and left until they had calmed down. No encouragement, no acknowledgement. Once she had finished the staff explained why she should not scream and suggested oether strategies to relive the stresss. It did start to have the desired effect and the meltdowns became less frequent and noisy.

Obviously every child is different and I daresay you've tried that, done this etc.
Just thought I would share my experience.

TBH I wouldn't waste my time trying to get a statement for a Year 10 child. I applied for one in the summer holidays and got one in May of DS's Year 10 before it was ceased on his 16th birthday in June when the could legally wash their hands of him and force him to leave school to go to FE college.

DLA applications are cumbersome, time-cosuming but not difficult. You are the expert on your child so you are best-placed to complete it. Don't feel restricted by the tiny boxes they make available - just write sheets and sheets of A4 and keep reviewing and revising the document for consistency and accuracy. Bung in any reports or assessments and just send it off. In 18 month time it'll all be reviewed again anyway when they bring in PIP sad

MerryCouthyMows Thu 21-Feb-13 04:02:35

I used to do the moving DD out if the way etc etc - I PHYSICALLY can't move her any more, she is taller than me, and as I have physical disabilities now too, she is also stronger than me - and even more do when she is in meltdown.

MerryCouthyMows Thu 21-Feb-13 04:10:29

Once DD is calm, we 'debrief' (her words). We go over what caused her to meltdown (usually "he was annoying me" is the best I get in the way of explanation!). We go over what SHE could have done differently to prevent the meltdown.

We go over different ways in which she can release her frustrations.

She looks like she is taking it all in.

Then the next time she faces a similar situation...BOOM! Meltdown again.

It just DOESN'T stick.


I've been trying to stop these screaming meltdowns since she was 3yo, and I realised that they were far and away worse than an 'average', 'NT' tantrum.

It hit me one day when I was at a friend's house, and we took away a toy they were fighting over. Friend's DC cried, shouted "I'm cross", and was distracted by the cat stretching.

3 HOURS LATER, DD was still screaming for the toy.

And the only thing I have succeeded in doing in the following 12 years is turning what was a 3-4 hr meltdown into a 30mins-1hr meltdown at a time.

<<HIUUUGE Sigh>>

MerryCouthyMows Thu 21-Feb-13 04:15:31

And to top it off, a fairly 'regular' poster called my DD 'obnoxious' on a thread today.

It was a thread about things your DC's have said, and I posted one about DD.

I didn't realise that 'nt' parents would see it as obnoxious.

And it's really got to me tbh.

I don't see DD as 'obnoxious'. But what if a lot of other people do? Where does that leave DD?


Some days it DOES feel like a living nightmare. I'm still awake right now, even though the rest of the house is quiet. Because I'm in too much pain from my joints to sleep.

So tomorrow will be fun.

I MUST start recording their meltdowns.

ArthurPewty Thu 21-Feb-13 07:49:47

Message withdrawn at poster's request.

MerryCouthyMows Thu 21-Feb-13 10:19:04

Oh, I know what you mean Leonie!

I used to have a TRUE photographic memory.

Now I joke that I have Swiss cheese for brains!! grin

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