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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.

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

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

Video. Can't emphasise enough the value of video. Your memory (especially memory like ours) smooths over the rough edges. You remember something was traumatic but in a few days, you forgive and forget, and if you're like me, you begin to wonder if you made a fuss over nothing. And then you end up embarrassed that you got so upset in the first place.

My memory isnt laying down much permanent lately, i suspect i know why.

Video is the only answer.

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?

<<Frets>>

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.

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.

<<Sigh>>

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 04:02:35

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.

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

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

What a palaver!!!!!!!!! Poor couthy. I hope the seizure wasn't too bad.

I quite like Contact a Family. They've always been very helpful to us.

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.

angryangryangry

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!!

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.

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

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

MareeyaDolores Tue 19-Feb-13 12:27:12
MareeyaDolores Tue 19-Feb-13 12:24:58

SCOPE not just for cerebral palsy

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)?

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.

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.

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

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

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.

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!

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 07:21:01

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 07:17:58

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.

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

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!!!

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?!

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