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)

(date)

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 it.....it'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.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now