Here some suggested organisations that offer expert advice on SN.

SS...

(128 Posts)
CouthySaysEatChoccyEggs Mon 08-Apr-13 13:10:31

Right. About 5 weeks ago, my DS1's dad rang SS and told them that I was 'making things up' about my DC's health.

SW came out, saw massive bundle of 15 years worth of medical paperwork.

I thought that would be case closed.

Nope.

SW spoke to health, namely the old HV (not my HV any more...) who said she felt that I was 'over-exaggerating' their health issues.

Why would she say that? Because she advised a MS nursery for DS3, yet MS Nurseries all said they don't feel that they can manage DS3's dairy allergy without FT 1-2-1 help.

So I personally found a perfect SN Nursery.

Also had a specialist pre-school assessor out to decide about Portage.

She said her report to the pre-school education board would be sensory integration therapy, Portage in the home until DS3 starts Nursery, and a recommendation that DS3 attends the SN Nursery that I had sourced!

Old HV disagreed, stating that she felt that he needed to be around 'developmentally normal' DC's at Nursery for them to model 'proper' behaviour to him...

Ultimately though, pre-school assessor agrees that he has issues, SN Nursery teacher and HT agree he has issues...

BUT, as old HV has said I'm 'over exaggerating' DS3's issues, the SS case isn't closed and he wants to cone out again on the 15th.

Are they looking at FII?!

I'm actually scared now.

This happens every time I try to push for the help that my DC's need.

I'm NOT over exaggerating their issues - health wise they have the dxd issues they have, and they also have the other issues that aren't fully dxd that I'm currently attempting to get dxd. (Autism - currently DD and DS2 are down as 'Autistic traits' but have never had a formal assessment.)

What do I do if they are looking at FII?!

I really need some help and advice here.

To put things in perspective, I have had prior involvement (10 years ago) with CP, on the basis that when DD was born I was still under 18 and on the 'at risk' register myself, which meant that DD automatically went on there.

I had ongoing issues for about 4 years (I drank too much for a bit, I lost twins and asked SS for some support as DD was hard to manage and they put her in FC for 2 weeks about 14 years ago...)

I'm now tee-total, and that issue has gone.

No proper involvement from the for 10 years except when they have received malicious calls from Ex's - about 6 times previous to this one, last one being around 4 years ago, but before this, nothing major - come out, see the house & kids, then close the case.

SW DID seen shocked by the fact that neither the Primary or Secondary here invite you in to do IEP meetings. I know they should, and tried to fight it for the first 4/5 years of being here, but I just accepted that at these two schools, they don't do that - which they don't, it's not just me they don't bring in!

These issues AREN'T fabricated, they are really very real, but I get threatened with this every time I try to push for the help and support my DC's should have.

Is it because I'm in North Essex?

God, how bad is it if they are looking at FII?

Could I lose my DC's?

CouthySaysEatChoccyEggs Mon 08-Apr-13 13:13:19

And for Reception, maybe SN school won't be the right place for DS3 - I have actually found an MS Primary, local to me (NOT my DS1 & DS2's current primary...) where the staff already use Makaton with another pupil, where they are very good with DC's with SN's, that I am seriously considering for DS3.

BUT MS Nursery isn't the right placement for him. SN Nursery is.

'Could I lose my DC's?'

Nope.

I know it feels horrible because it is unjust, but there is nothing from your post that makes me feel you have anything to worry about.

I would advise though, to play humble pie and pander to egos. Don't go on the defensive or the agressive, but be neutral and bland and wave away the HV's concerns with a wave of the hand and a small shrug for a professional who is doing her best with limted information.

I had a similar situation, and had nothing to worry about but made things far worse by challanging assumptions, stating my rights and responding to every criticism. It dragged it out far longer than if I'd simply said 'oh gosh, thank you for coming out, I feel we are all fine, doing our best, while you experts are here do you have any advice or help you could offer? Oh just to empty my bin when it isn't quite so full and ake sure my children never get their lunch past half one, oh and you are saying that we aren't bad enough to have any support that costs anything? righty-ho. Thanks for popping by.

CouthySaysEatChoccyEggs Mon 08-Apr-13 15:00:43

So do I have to give up on fighting for what my DC's NEED, yet again?

It just seems to go round in circles - I've told the new HV that while I feel SN Nursery is the right placement for him, I'm hopeful that MS school will be appropriate in 2.5 years time.

The specialist pre-school assessor agrees with me, so why has the old HV (who wasn't actually a 'trained' HV, she was a nurse who used to work with severely disabled DC's, which I think has skewed her perspective a bit, who is training to become a HV) got such a bee in her bonnet about the issues I'm having with MS Nurseries?

Every MS Nursery I can get to has stated that they cannot guarantee that they will be able to wipe every child as they come in, that they will be able to wipe every child as they get up from the snack table to go play or go to the toilet.

Which, in the scheme of things, are fairly minor adjustments.

But adjustments that can stop my DS3 from having an allergic reaction. Which I doubt the preschool would pick up as quickly as I do, and would land him in hospital in anaphylaxis, having had to use his Jext pens.

That's aside from his hyperactivity issues and his 'possible' Autism issues - that he is being assessed for in May.

Why is trying to do the best for my DC's looked on so badly?

CouthySaysEatChoccyEggs Mon 08-Apr-13 15:07:07

And no, I'm NOT over exaggerating the severity of his dairy allergy - even a crumb of chocolate ON HIS SKIN gives him a severe reaction, it really is an allergy on a par with the most severe nut allergies (which he also has...)

His speech is still severely delayed, even his latest SALT report states this. The SALT report also states about his inattention issues.

bochead Mon 08-Apr-13 15:07:28

Waiting lists are far, far too long for SN places for any child to get one without meeting the criteria. It just doesn't work like that.

HV are part of health so NOT education system experts - the pre-school assessor is. The MS placements couldn't handle his needs, they know their own settings better than a HV too.
With anything as parents we have to try follow the appropriate professional advice, which you have done to the best of your ability.

The HV is the lone voice of dissent at this point amongst the professionals and should be taking it up with her peers, rather than allowing you to get caught in the middle.

I wouldn't take my dentists advice over my GP's over a pain in my bum wink

CouthySaysEatChoccyEggs Mon 08-Apr-13 15:23:11

grin I get you, but the SW is 'concerned'.

Mind you, he is also 'concerned' that neither the Primary nor Secondary invite parents in for IEP meetings, and just send the IEP's home.

And he is 'concerned' that despite outside involvement, DS2 is no longer on either SA or SA+, because he has 'mostly' caught up, educationally to the very bottom of his age group.

YES his reading ability is now 6 months over his chronological age - but his comprehension is still below (so he can read it, but not understand what he's reading...).

His writing is WAY below his chronological age, due to his physical disabilities, and the fact that despite promising a writing slope before he even started in YR, he still doesn't have one in Y4...and no other adjustments either, no laptop etc.

CT said that 'due to the NC changes, there will be far less reliance on computers in future, so a laptop isn't appropriate', yet she also says that he has many ideas that he can't get on paper because of his difficulties in writing, and she has no doubt that when his writing improves, he will jump ahead academically, so not to worry...

Which says to me that DS2's ACTUAL academic abilities are being hindered by his physical disabilities and the lack of adjustments for them...

angry

Yet as soon as I fight for these things, I'm 'over exaggerating'...

Despite a report from the orthopaedic consultant stating that DS2 has 'severe Hypermobility', and kyphosis, and the fact that he needs hydrotherapy for his joints...

Nnnngggggg...

I can't get the simple adjustments my DC's require without forking out money I don't have for private assessments, and paying for the equipment personally.

Which riles me.

Doesn't help that when I'm in meetings, as soon as I get frustrated, I cry. No matter how hard I try, how much I don't want to, how hard I try to manage it, in ANY situation where I'm frustrated, my eyes leak.

Which makes me look bloody unbalanced. Which I'm not. Much...

How do I stop crying from frustration? I feel people don't take me seriously when that happens, but I genuinely can't help it, even when I try!

PolterGooseLaidAChocolateEgg Mon 08-Apr-13 15:40:24

I do the crying thing too, it is just awful. Yet at work I'm quite an able advocate, so I know I can do it! I'm better when I'm not pre-menstrual (which feels like most of the time right now) and if I plan and prepare well and take in notes, treating it like a work thing helps, as does taking someone but that only happened once when our fab HV came. An old manager I had who always seemed super-confident said she used to imagine herself as someone else, could you channel a bit of Starlight or another MNer, I tried that last time, tried to imagine the power of MNSN behind me, it helped a lot and I didn't cry.

I think with SS I'd approach it from a "yes, things are hard because of these things, not helped by these things and these people, i know things could be better and have done everything in my power to sort this out, but am constantly hitting brick walls, I'm actually really glad you are here to see the whole picture and am looking forward to finding out what you can do to ensure that my children's needs are better met?"

CouthySaysEatChoccyEggs Mon 08-Apr-13 16:24:20

I'm going to look at your last paragraph, in respect of each child, and write down those things.

Don't know who, if anyone, I would be able or allowed to take in with me though - are there any advocates or something that could come in with me? I don't have friends I would take with me, both my closest friends are known to SS for prior DV issues, and also don't really have a clue when it comes to SN's.

I would feel so much better in these meetings if there was someone there 'on my side', so to speak, but who? I go to these meetings, but I never feel 'heard' or like there is anyone to point things out on my behalf, or to argue against things that should have been done but haven't been, to ask those questions, or to help make me feel stronger when faced by X, Y & Z, with their own agendas, often not the same as each other, often contradictory or trying to pass the financial 'hit' onto another department...

I don't know, I just want what is best for my DC's, I want them to achieve THEIR potential, which I don't feel that they are. And when I fight for the help that they NEED in order to fulfil their potential, it ends up in SS's hands each time.

So I back off, let things drop, and all the while, my DC's aren't getting the help that they need...

I asked to go on a parenting course for older DC's, got put forward & everything...but they have no crèche, and I have nobody to leave DS3 with, so I couldn't go.

Having DS1 school refuse the other week can't have helped me any, either.

CouthySaysEatChoccyEggs Mon 08-Apr-13 16:27:53

Being premenstrual DOES make it harder. I've never really worked in an environment where I've had that many frustrations, either.

So I don't have that to draw on, either.

Reading about FII, and they could use so many 'pointers' off there about me - yes, my crap childhood is true, but why is it still being used against me in my bloody 30's?!

Yes. It can help if you take the 'under cover reporter' and behave as if the whole of MNSN are flies on the wall. It helps you to stay measured, stick to the facts, not say silly things and not cry, and you can challenge any stupid utterances in your head rather than real life as you can simply think 'wait until I tell the people in my computer THAT', rather than get into an argument about something petty at the time which will probably do you no favours even if you're right.

'yes, my crap childhood is true, but why is it still being used against me in my bloody 30's?!'

It's not. They have to show a clear link. Honestly. It's horrible and half of the misery is the unfairness, but you'll get through it.

AMumGoingMad Mon 08-Apr-13 17:50:47

This sounds similar to something I went through 18 months ago. I did what Poultergoose suggests and basically said "What a relief to have someone at last who cares about my children as much as I do and wants only whats best for them. Please can you help me to get their needs properly assessed and get the professionals to communicate effectively and get their facts straight.". I was accussed of over-exaggerating my dc's medical needs and causing too many medical appointments. I dug out every single bit of paperwork I had on each child and gave the sw photocopies. So every clinic review letter, every A&E visit, my old diaries with appointments in, everything basically. I highlighted on them where the facts were wrong in the letters (e.g. "mother says" when in fact "Mother" as they seem to put it wasn't even present, incorrect weight / height, basically everything that was wrong however minor). I invited the sw and the ss family support worker into my house on a regular basis for them to assess whatever it was they were assessing. I invited them to the medical appointments which was a blessing because they found out that it was the medics generating the appointments not me as just "we'll see you in 3 months time" without any outcomes being required. We had CIN meetings which I insisted EVERYONE who had ever been involved was invited to.

Before long it all came tumbling down around the medical team who had been the ones to make the call on me. They were shown to be incompetant and more to the point to have failed to meet either childs needs and that all I was doing was trying my hardest to get someone to listen to me. The result was my DS was properly assessed by an OT and dx with SPD. My DD was referred regarding her walking (but sadly probably too late) and other medical issues. I got help with a DLA form for my DS and I got respite once a week. The my dd's school was slapped on the wrists for failing to meet dd's educational needs (she's G&T in 1 area) and failing to meet ds's educational and safe guarding needs when he was there (we took him out because he escaped and they didn't even tell us).

I'm not saying it wasn't awful and I didn't fear for me and my children through the process. It was the most stressful 6 months of my life if I'm honest but as a result I have now got a team of people working for me and my children and who wouldn't dare question what I say about them again (except 1 paed who still thinks he's right and didn't deserve to be told off).

So be open with the sw, be friendly, don't be obstructive in anyway, ask for help.

PolterGooseLaidAChocolateEgg Mon 08-Apr-13 17:55:20

You do need to ignore the pseudo-HV and her opinions (for that is al they are) and focus on the helpful professionals. If the SW brings up what old HV said you nod, say you understand that is how she saw it at the time but since then you've had involvement from more appropriately qualified professionals who disagree. So don't say you disagree IYSWIM?

Clearly you have stacks of third party evidence relating to all your dc's difficulties over the years so step away from google and forget FII.

Use the social worker, this may be the only professional whose role is to assess your family unit as a whole, rather than all the various professionals who only see their little tiny part of the whole. Be honest about what is easy, what you need support for and what is impossible and needs someone else to do. Tell the SW what you need from this. Would you accept having a family support worker come in? If you would then say so. Keep bringing it back to what they can do for you.

We will be there with you (in spirit) so even if you are on your own you won't be alone flowers

CouthySaysEatChoccyEggs Mon 08-Apr-13 18:53:29

Thing is, it's all so much that I can't even make clear sense of what is needed!

DD : has dxd leaky heart valves, (one at the top and one at the bottom) I think they're causing issues with tiredness - not many 15yo's need a nap after school, do they? She hasn't been seen by the cardiologist since she was 12, cardiologist said that as things weren't causing too many problems (which they weren't, as much, then), she would be seen again at 16 - but I have no idea if DD is still even down to be seen.

She was dxd with Hypermobility when she was little, it's still there, she has issues with her knees every couple of years (water on the knee etc), take her to GP who advises strapping it up or having fluid drained. DD refuses draining, fear of needles, so we strap it up as advised. Now deal with that without GP because DD isn't going to get it drained, so strapping is all we can do.

DD was dxd with GDD when tiny. She still is quite some way behind her peers in academic stuff and social stuff and emotional stuff.

DD had SALT issues, mostly corrected, discharged from SALT at around 6-7 ish. Speech still immature, mispronunciations, etc.

DD was dxd with dyspraxia at 4yo. Took ages to even get her to cross her midline - she wasn't able to do this until she was 10-ish.

Her organisational skills are non-existant due to the dyspraxia.

I have been TOLD by her LSA that she has dyslexia & dyscalculia, but no formal assessments. If I want formal assessments I'd have to pay. Which I can't.

DD has LD's, and has been on SA+ since she was 3yo at school Nursery. I don't believe that in 12 years, DD has made as much progress as she should have.

DD's Paed, when she was 4yo, told me that DD was 'definitely on the spectrum somewhere', handed me a load of leaflets, and left me to get on with it. If she doesn't have Autism, I'd eat my own shoes.

DD holds it together just about at school, now (she didn't in primary, she used to just walk out of the classroom if it was too noisy etc), so the school don't see the meltdowns she has at home when she is no longer trying to keep it together.

DD had a soiling issue until she was 8yo, (on Lactulose on and off) and a bed wetting issue till she was 12y7mo. She went on the waiting list for the enuresis clinic at 4yo. She got to the top of the list, and I was offered an unreachable appointment 2 buses away over school run time when she was 11+yo.

I asked for another appointment, they said they'd ring me. After 2 months, they hadn't rung - so I rang...enuresis clinic disbanded!

She finally got offered an appointment at age 13, 5 months AFTER she had stopped bed wetting!

I don't even actually know WHAT help DD gets at school any more - the Secondary never has meetings where they call you in.

Tbh, I've let the ball drop a bit where DD was concerned, since her choosing her options last year. I haven't seen anyone at her school except for parents evening since then.

My only explanation for that is I've been trying to deal with DS3's issues...blush

It IS on my to-do list to book an appointment with Learning Support at DD's school after the Easter hols.

(In Essex so we've only just started the 2nd week of the hols here)

There's probably more, but it's a lot to remember - there's her hearing issues & ENT, plus the fact that a few years ago, in primary, the SCHOOL brought up that they were concerned that she might be having absence szs, but that was not borne out by the EEG. (They brought that up with no knowledge of my own epilepsy!)

autumnsmum Mon 08-Apr-13 18:55:53

Just to say a big thank you for all the advice you have given me about dd . Ss do not need to be involved with you .Y our Hv sounds like my dds portage worker who is the only pro who thinks she should attend a unit not a ss

CouthySaysEatChoccyEggs Mon 08-Apr-13 18:56:28

No help on how to teach DD organisational skills etc. not even sure where to go to GET that help!

No idea whether the help she gets at school is appropriate to her needs - but hard to know when she hasn't seen an EP since Y6, and is now in Y10...

(Getting to see an EP in Essex is nigh on impossible - DD was seen in Y2 & Y6, despite being on SA+ since 3, that's IT!!)

LeonieDelt Mon 08-Apr-13 19:09:45

i wish i had something to add, but i dont.

our 'malicious' case was closed in 11 days. i lost a stone worrying in that time.

i wont even ask for respite because it involves those fuckers.

sorry, nothing useful to add, but a bump for good measure. x

Again, no useful advice, Couthy. Hopefully some of the others have helped. Much empathy and honking, though. You really don't deserve this. You help others on here despite your own multiple issues and a blind wombat could see that you have your DC's best interests at heart. flowers

CouthySaysEatChoccyEggs Mon 08-Apr-13 19:50:33

I could go on, and list DS2's issues - maybe later.

I was thinking maybe someone could tell me what would actually HELP my DC's, where I can't see a clear path?

I know I'm shitting bricks about post-16 for DD - and I'm being given NO help whatsoever from the school on which direction to even look in. She's not going to get the grades for the course she WANTED to do, that much is already apparent.

She's too advanced for life skills courses.

I can't find anything suited to DD personally locally that she meets the grades for.

I don't know where to go or even who to turn to for careers advice and support, as we don't HAVE conexxions here any more, and DD can't access the SN transition service because she doesn't have a statement...

There just seems to be no help out there, I'm bloody floundering, despite what it might seem like on here, and every time I push for help / support, SS get involved.

It IS spectacularly BAD timing for DS1's dad to have rung SS, granted, but it's a backlash from when I had to call SS on his partner last year as she had bruised DS1 (who hasn't been there since, only sees his dad 4 hrs a bloody fortnight now...).

He just couldn't have chosen a worse time tbh. Git.

CouthySaysEatChoccyEggs Mon 08-Apr-13 20:04:34

Leonie, this has been rumbling on since I first mentioned it on Moose's thread.

And yes, it IS the reason I hadn't asked SS for help before now!

I can't understand why all these Authorities seem to stand as one against parents who just want THEIR DC to achieve their full potential, and need help or adjustments made in order to do so because of dxd issues.

I want DD to be able to go to college and to be able to find employment when she leaves college.

I want DS1 to be able to cope socially with his peer group, and to achieve what his IQ shows he should be able to achieve, but isn't.

I want DS2's physical issues to have the necessary adjustments made for them, to enable him to get everything in his head down on paper so that he can SHOW that he's cleverer than given credit for at school (which he is).

I want DS3 to attend an SN Nursery with a view to reintegrating into MS at Reception age, provided all his issues can be taken care of at MS school - which is a bridge I haven't crossed yet as I'm still more concerned with Nursery, as Nursery is 5-9 months away, and Reception is 2.5 years away.

I'm understandably concerned that there doesn't seem to be any real attempt at early intervention, maybe on paper, but nothing meaningful, despite it having been common knowledge for at least the last 15 years that early intervention is the best thing in terms of outcomes.

SALT consists of basic observations, Makaton worksheets home and not much else between the age of 2yo & 3yo (apart from the seemingly ubiquitous "give them carrot sticks to eat"...). Where are the assessments? Where are the starting points to measure progress? Where is the actual dx of WHAT the specific SALT difficulty is? Where are the therapy sessions? What directed therapy would be best for WHAT DS3's issue is?

It's all just so airy-fairy, when I believe that proper early intervention would prevent issues like DD is having now - yet here I am watching DS2 follow the sane path, and now it feels like I'm following the same path again with DS3.

OK, DS1's issues present VERY differently, and his path is one I haven't trodden before - but the other 3, it's like watching history repeat itself. Twice.

And the sheer FRUSTRATION of that is killing me!!

CouthySaysEatChoccyEggs Mon 08-Apr-13 20:10:35

It's like when DS3 was tiny, just a few months old he had an odd shaped head due to getting stuck in labour. He was sent to Physio, who did nothing (except tell us we could pay thousands for a special helmet, but they felt it would right itself, and if it didn't, it's only cosmetic after all (!) and the PCT doesn't pay for cosmetic stuff like that anyway).

I had noticed his joints were hypermobile, not an odd thing to notice given the dxd family history...

The Physio denied he was hypermobile, told me it was impossible to tell at that age as all babies are floppy etc etc...

Fast forward to DS3 being 22/23mo...and Physio dx him with Hypermobility.

<<Bangs head off brick wall>>

Why do they all assume I know nothing?!

LeonieDelt Mon 08-Apr-13 20:13:53

hugs Couthy x

CouthySaysEatChoccyEggs Mon 08-Apr-13 20:14:05

I also mentioned the 'turn in' of his feet at the appt when he was tiddly - only to be told it wasn't abnormal for a baby's feet to turn in.

And yet now, at 26mo, he is under orthotics for orthotic shoe inserts...

<<Bangs head off brick wall, again>>

If people had listened to me then, he could have had these inserts long ago (which are making a difference), as soon as he started walking...

I sometimes feel like I'm going to implode from sheer frustration...

Dinkysmummy Mon 08-Apr-13 20:16:50

flowers

I wish I knew what to say.

You sound like a dedicated and passionate mum.

They should be able to see that.

flowers

CouthySaysEatChoccyEggs Mon 08-Apr-13 23:09:55

Bumping to see if anyone else can make sense of what I need to be asking for - I need to be clear about what I think my DC's need.

CouthySaysEatChoccyEggs Mon 08-Apr-13 23:21:24

I think, for DD, MY next step is an appointment with Learning Support at her school.

I WANT an EP assessment done on DD, to be able to measure her progress since Y6. That way it will be clear whether she has made 'adequate' progress or not.

I WANT an assessment done that determines if DD DOES have dyslexia. And if so, how can I best help her.

I WANT some support on how to help DD with her dyspraxia - how to help her learn to manage organising herself, stuff like that.

I WANT to know if she is still being seen by the Cardiologist next year or not.

I WANT to have some support for post-16. To help me to find a course that is suitable for DD that she also wants to do.

I WANT to know if the fact that she has been dxd with GDD and dyspraxia and Hypermobility, all of which are often co-morbid with ASD, plus her social skills issues, actually point to ASD, or if I should just shut up and accept that she just has 'Autistic traits' without an ADOS assessment being done.

I WANT to know how to manage DD better when she is having meltdowns at home.

I WANT to know WHAT help DD is currently getting at school, why they feel she needs that help, do they think DD needs any additional help, and if so, what...

Would it help if someone came and took all but one of your children out for an hour, and then swapped for another hour, so that you could do some 1:1 therapy with one/some of your children?

Something a SALT has recommended or an OT? Do you need help in order to implement that?

So write all of that down and ask if you can have a key family worker/support.

Even Homestart might help a bit as if they come and occupy your kids you can get on with some phonecalls/letter-writing/admin!?

Nerfmother Mon 08-Apr-13 23:24:36

Would it help to do a spreadsheet for each child? Down one side put dxed conditions and then concerns (eg possible dyslexia) and then columns like 'date of dx' 'dx or concern by' 'frequency of review' etc just so you and sw can see how often and why you see medics?

CouthySaysEatChoccyEggs Mon 08-Apr-13 23:32:53

Starlight - someone coming out to look after others might be helpful, so I can do 1-2-1 work with another.

HomeStart can't help, nobody was free outside of school hours. Basically they decided that the help they were able to offer wasn't the help I actually need.

CouthySaysEatChoccyEggs Mon 08-Apr-13 23:34:55

Spreadsheet sounds like a good idea. I'm trying to get it all on here, as that will make it clearer. Though it might also help if I drag all DD & DS2's old medical stuff out of the loft to refer to. Just seems like I always have so much to DO that I do none of it properly IYSWIM.

CouthySaysEatChoccyEggs Mon 08-Apr-13 23:37:53

Thing is, taking DS3 out. Would they have someone who knows about serious allergies at hand to a) Keep him safe from things that could affect him, and b) be able to recognise the EARLY signs of a reaction, so that it could be stopped with antihistamines rather than having to go to the Jext pens?

And Who would take 2/3 DC's with SN's out at once. Apart from me?! grinwink

Well what about getting them to find some after school activities that some of them can attend so you can spend quality time with the others?

If they can't find any suitable then you can find something you think they'll like and request that they fund support to enable your children to attend.

'And Who would take 2/3 DC's with SN's out at once. Apart from me?! '

Perhaps they'll need 3 adults? I don't know.

I'm not saying you'll get anything at all. But these can be at least your wishful-thinking dream support things.

If you got, say one hour a week per child of respite, then you could arrange all those 1 hours to occur at the same time perhaps?

CouthySaysEatChoccyEggs Mon 08-Apr-13 23:46:36

Oh, with DS2 I have Physio to try to fit in, plus handwriting practice, plus additional comprehension work from school because his comprehension is so behind.

With DS3 I have basic Physio that I need to do, throwing / catching / kicking to improve his balance etc. not directly from Physio for him, but his skills there are behind where they should be. Plus stair climbing that HAS been advised.

Then there's his Speech therapy stuff I'm trying to do - not from the SALT for him, but dredging my mind back 13 years to the stuff I was asked to do with DD...plus teaching him Makaton too.

Then there is the stuff I'm trying to teach him myself - like HOW to play. At 21mo, he had NO imaginative play. NONE. Though he has some now, none of it is really spontaneous - it's all stuff that I have 'taught' him IYSWIM.

Then with DD there is the attempting to get her to do revision - easier said than done when she is demand avoidant...and melts down whenever she comes across a piece of work that is 'too hard'.

Plus I still do a few Physio exercises with DD each day (well, technically, but it never all fits in one day with all the above + housework + shopping + cooking + admin + sleep, so usually one day's stuff is done over 2 days, so nothing ever gets done as often as it should...) that she got given to do each day when she was discharged from Physio.

Maybe write out a daily timetable then. So the SW can see what you have to manage on top of the normal stuff.

Even if you are at home in the daytime, THEY are not, so all of this has to be done presumably between 4 and 6 and you have to make their dinner, do bath, story, listen to their worries of the day as well.!?

CouthySaysEatChoccyEggs Mon 08-Apr-13 23:50:09

Star - I guess. But respite is a pipe dream tbh. I'd just settle for the DC's getting the assessments they need, the physical equipment they need, the help they need in school (MOST important to me tbh) and some actual knowledgable support for their issues.

Respite wouldn't actually help the majority of that, would it?

The point being, that they might say you have respite when they go to school, but actually, you need some support/respite/help AFTER school in order to meet their needs.

It isn't that you're not trying, or organised, or capable, but physically, you cannot split yourself into 4.

CouthySaysEatChoccyEggs Mon 08-Apr-13 23:50:40

Star - I guess. But respite is a pipe dream tbh. I'd just settle for the DC's getting the assessments they need, the physical equipment they need, the help they need in school (MOST important to me tbh) and some actual knowledgable support for their issues.

Respite wouldn't actually help the majority of that, would it?

No it wouldn't.

Though, you could probably do with the odd ocassion at the local swimming pool on your own.

CouthySaysEatChoccyEggs Mon 08-Apr-13 23:55:47

grin Star, apparently so, though I try to do what I can of DS3's stuff during the school day - but that's also the time I need to make any phone calls, plus do shopping (which involves 4 supermarkets a fortnight as some of DS3's food is only available in one or the other of them...).

I am meant to be some sort of fucking Wonderwoman I think, to fit all that in in a couple of hours each night.

It NEVER all gets done in the same night though.

DD's h/wk has to come first, she's in Y10. Then DS1's h/wk, as he's in a SATS year - and actually seems to get more h/wk than DD - though that's partly because her teachers ignore her effing IEP and don't write it in her planner for her like they are meant to. Then I get moaned at (or worse, DS2 does...) if I can't fit DS2's h/wk in too.

All the while trying to stop DD killing DS1, and do all the other stuff too...

CouthySaysEatChoccyEggs Mon 08-Apr-13 23:58:05

A chance to actually read a book would be nice! (Swimming not good, seizures...) go to a cafe and have some PEACE. grin

Nerfmother Tue 09-Apr-13 00:06:28

If the sw is coming to check out if you are exaggerating their needs, and you want to prove that they do have these needs, and that sen nursery is the right place, maybe getting the sw to see that first would be the plan? Surely asking for respite before doing that will make them think you are over egging things? I don't know, I'm just trying to think, if I came to see you because I wanted you to show me that you were rational and stuff, maybe I'd not be wanting to talk respite until we'd got that out the way? Does that even make sense? It does in my head!

CouthySaysEatChoccyEggs Tue 09-Apr-13 00:20:27

Y'see, I'm not even really after respite - was more wanting the stuff I mentioned before. It's not easy trying to be everything to everyone, but more important to me than a rest for me (I know I am getting an almost rest with just DS1 at the end of July when DD is in Scotland with her dad and DS2 & DS3 are at their dad's.) is getting what my DC's NEED.

And unfortunately what they NEED doesn't really come from SS - it comes from Health & Education, neither of which want to spend money on things...

CouthySaysEatChoccyEggs Tue 09-Apr-13 00:22:45

I don't really think SS can help me, unless they can persuade education and health to do what they should be...

CouthySaysEatChoccyEggs Tue 09-Apr-13 00:23:23

I don't really think SS can help me, unless they can persuade education and health to do what they should be...

CouthySaysEatChoccyEggs Tue 09-Apr-13 00:23:52

Sorry for double post.

justaboutalittlefrazzled Tue 09-Apr-13 02:14:34

I think - being brutally honest here Couthy - that you are always going to look like a potential problem to a SW because you had your children in foster care at one point. I think that is much more relevant than your childhood. It is unfair (presumably you asked for them to take them into temporary foster care?) but it is the way it is. Because of that I think you have to be much more careful than other parents, because that last episode IS a red flag and they don't know until they ask you how much things have changed. So you are not going to be given the benefit of the doubt like other parents until they are superclear that things are now fine.

But I also think that old HV wittering on is not doing any longterm harm. They are doublechecking because they want to be very careful that they don't wind up with a headline

"Horribly abused kids damaged by mother who was KNOWN to SS, had had kids in foster care but had them returned, then further concerns were raised but SS IGNORED warnings of ex-partner AND other professionals."

Can you see why they are double-checking?

You're a great mum. That is obvious. It will be obvious in due course. But you need to respect the fact that the facts on paper do merit them being careful. I hate saying this (and I've just been through an SS investigation myself about the circumstances in which my dS2 broke his leg so I know how horribly upsetting it is). But
a) it will be fine
b) this isn't as ominous as it seems
c) they need to take extra care in your case.

CouthySaysEatChoccyEggs Tue 09-Apr-13 02:22:21

I never asked for the FC - I asked for some support, and that was what they offered me, 'couching' it as respite. Which it wasn't, and I had to fight to get her back - this was when I was just 17yo, DD was about 18mo, it was before most of her SN's were dxd (funnily enough, dx's happened not long after she came back to me...).

I didn't know or understand what was happening at the time, tbh. I was still meant to have a SW there in the appointment for ME, but there 'wasn't one available'...

I've grown up a lot since then, and have been ever cynical and determined to educate myself ever since!

CouthySaysEatChoccyEggs Tue 09-Apr-13 02:24:30

Only DC that was in FC was DD - others weren't born then.

DS1, DS2 & DS3 never been on 'at risk' register, never been in FC.

By the time DS1 was born 4 years after DD, 2.5 years after DD came back from FC (which was only 2 weeks btw, not months on end), there were no concerns from SS whatsoever!

CouthySaysEatChoccyEggs Tue 09-Apr-13 02:26:31

So they think someone of 31 isn't going to have changed since they were 17? Honestly?

justaboutalittlefrazzled Tue 09-Apr-13 02:31:42

sadly, they are going to take a second look. But that doesn't mean they won't have common sense. It is just that the processes/protocol will flag you up as being more of a risk than someone who has never come to their attention before.

CouthySaysEatChoccyEggs Tue 09-Apr-13 02:35:32

I know far more now than I did then about SN's, I know far more about bringing up children in general, back then I was still a child myself, I'm not now!

Yes, back then I had an issue with alcohol - which wasn't great, but I had gone through the mill somewhat as a child, and was avoiding dealing with it at 17. I rectified that when DD came back from FC, and have never been the same since.

I can hear what you are saying, but I think that a 17yo whose DD with SN's that weren't fully dxd was in FC because they asked for some support 13 years ago, who also had an alcohol issue, is quite a different proposition to an adult with 4 DC's that is nigh-on tee total (I have roughly 4 glasses of alcohol a YEAR max) whose Ex is making malicious phone calls...

Yes, I can see why the need to check it out, but it feels like I'm never quite going to shake off the person I used to be, no matter how much work I put into it, at least not from the perspective of SS.

It will always be the 'cycle of abuse' thing. Which is bollocks.

Ach, I understand why, but it doesn't make it any less scary, or frustrating that every time I try to get the help my DC's need, I come up against a threat of SS, and now the reality...

justaboutalittlefrazzled Tue 09-Apr-13 02:53:09

but it feels like I'm never quite going to shake off the person I used to be, no matter how much work I put into it, at least not from the perspective of SS.

I think there is an element of that, yes. But not in terms of outcome, just in terms of process. Which is crap and demeaning and upsetting, of course. And wrong.

CouthySaysEatChoccyEggs Tue 09-Apr-13 12:30:10

Bump to see if anyone else has any advice. I will be back later to have a look, am going shopping for DS1's birthday presents as he's 11 tomorrow. Cake baked - red & black marble cake that I will decorate tomorrow.

OneInEight Tue 09-Apr-13 12:43:56

I had a knock on the door myself due to ds2 latest escapade at the weekend. Perhaps I am being naïve but am regarding it as a positive at the moment - he had already chased up all our appointments before visiting and they obviously have more power than us to get the professionals acting. I think you are better trying to use this power to your advantage to get the help for your children rather than fight against them.

CouthySaysEatChoccyEggs Tue 09-Apr-13 14:21:52

I know - I'm trying to keep the 'fear' in check, and work out what my DC's actually NEED to fulfil their potential.

Hence the 'stream of consciousness' posts on this thread - trying to make sense of it all.

It's very easy to get lost with trying to balance everybody's needs when you have 3 DC's with SN's!

If people could make suggestions if what I should be asking for help with, based on my DC's issues, I would be very grateful.

I'm hoping that they can move things along with education and health, but I am lost as to what is 'normal' to expect on the NHS and from the state education IYSWIM.

Possibly what they need is more usual to end up being paid for privately? But I just don't have the funds to do so.

So I'm looking for suggestions of what people think would be the best things to ask for to support my DC's so that I can work 'with' them, and maybe come to some compromises and find what will help and I can get funding for!

alwayslateforwork Tue 09-Apr-13 14:46:15

couthy - this is a wild shot in the dark - have they ever looked at your eldest dd from a FAS pov? I only ask, because you yourself have said that one of the issues at the time was alcoholism, and I know a couple of teenage girls with FAS who exhibit the same sort of tiredness etc - with them it can be mostly held at bay by diet. They both manage their tiredness with protein (I think the FAS has metabolic affects that can last throughout life?)

I'm involved with a youth group that takes these kids on residential trips, so I'm used to having to plan dietary fixes, and watch for signs of lethargy/ inability to concentrate etc. (that's not to say that dd doesn't also have a pre-existing cardiac issue - I think I have a similar one, btw grin I have leaky valves and was dx with a 'juvenile' heart murmur - I know for a fact I still have it as it is periodically mentioned, but it is now regarded as largely benign, although it caused no end of drama as a child)

I could of course be totally wrong, and I apologise wholeheartedly if so - I certainly don't want to add to your worries! It just struck a chord with me, knowing the girls in my group... And knowing that I have to make sure they are not carb heavy, and to load them with protein...

Anyway, good luck. I'd be using ss to push on your behalf, and seeing them as the way forward... Which may or may not be their pov, but it's worth a try. I've been in areas where ss, health and Ed work reasonably well together. Although, despite two with sn including cerebral palsy, as a 2 parent family we have never qualified for children with disabilities support. <sigh> post code lottery.

alwayslateforwork Tue 09-Apr-13 14:48:20

<and please do request my post be deleted if you feel it's inappropriate - it strikes me that I could have pmed. Sorry!>

elliejjtiny Tue 09-Apr-13 14:57:52

I'm dyspraxic and I have 3 DS's who are hypermobile plus another (unplanned) baby on the way who has a cleft lip. DS1 has mild autistic traits. DS2 has sensory issues and limited mobility, he often has accidents because when he needs to go to the toilet he needs to go right now and then he struggles to get there in time. DS3 has the brain of a 2 year old (his actual age) and the motor skills of a 15 month old, he spends a lot of time tripping over his feet and trying to do what his eldest brother is doing.

I've had a recent clash with my new HV. She was concerned about my DS3's bruises, despite him falling over/diving head first into a toy box at least 3 times during our appointment with her. She called SS who decided not to take it further thank goodness but I understand how scary it feels. I've had previous contact with the disability team of SS when DS2 was a baby because the paed said they would be helpful. They offered help on their terms, eg they sent someone to take DS2 out when DS1 was at nursery. I'd asked for someone to help me take them both out to a softplay or the park and play with DS2 while I gave DS1 attention. In the end I ditched them and they wrote a charming report about how I was disorganised and exaggerating DS2's problems (when I said how long DS2 took to feed I included the time taken to express the milk and steralize the bottles).

Anyway, I have a couple of ideas that might help.

For your DD: laminated lists and a diary - I'm still rubbish at organising but the lists and diary help. Everything I'm doing goes in the diary, appointments, birthdays (with warnings for present buying a week or 2 before). Things I've promised the DC we'll do in the school holidays. Everything goes in the diary and I look at it every night. I have laminated lists for everything so I can tick things off and then wipe it clean for next time. Lists for housework, lists for the contents of the nappy bag. My brain seems to hide important information so I have it on paper instead.

For the HV: Give her something to do. I found with my old one she would want to weigh the youngest child every week unless I asked her to do something specific to help. Grovelling and flattery seems to help too. Mine was great at chasing up appointments and making phone calls.

For support: Barnardos - I found them to be like a non judgy version of social services who actually asked me what I wanted help with. I had a lovely volunteer who came round and helped me get a bit organised, helped me get DS2 to his SN preschool (I can't drive) and did it all with a friendly smile. I had them come round after SS involvement had finished but I'm sure they would be there for meetings with SS if you wanted support. DS2's old portage worker comes to his school reviews once a year to take notes for me and also we meet up beforehand to talk about what I want to say at the meeting. That's not really part of her job but she does it anyway because I forget what I'm going to say and also what other people have said.

Hope that helps

CouthySaysEatChoccyEggs Wed 10-Apr-13 00:12:51

Ah - never drank a DROP whilst pg. At all. It was only when DD was 15mo that my issues with alcohol became an issue.

Besides which, before that, I didn't look old enough to buy booze. Mostly because I wasn't!!

CouthySaysEatChoccyEggs Wed 10-Apr-13 01:59:01

Tbh, I've never drunk in any of my pregnancies. Not smoked, despite the fact that from the age of 11, I was a smoker. ALWAYS stopped smoking and drinking straight away.

My view on it has always been that I may choose to smoke or drink (not that I do any more...), but my unborn child didn't.

The first thing that alerted me to the fact that I might be pg with DD was the fact that I didn't want to smoke, and that was within a week of conception. Been the same every time.

I know I'm pg long before it shows up on a test because I stop smoking. And at that point, I don't drink a drop of alcohol either.

Nowadays, mind you, that's not even an issue, as I stopped smoking in 2009 after having pneumonia, and I stopped drinking in 2003 after my dx of epilepsy, as alcohol's not really compatible with epilepsy meds.

alwayslateforwork Wed 10-Apr-13 03:53:42

No worries - thought it might be worth a ponder if it was a possibility.

CouthySaysEatChoccyEggs Mon 15-Apr-13 14:46:32

Hmmmm...didn't go too well, as they didn't seem to have had all the information from health - didn't even know about DD's dyspraxia - which she was under Physio & OT for years for, and still has issues with now. Yet they apparently spoke to health.

And apparently DS3 hasn't been referred to the community Paed - odd as he saw him, SW seen his report etc, he ordered microarray tests that can only be ordered by a Paed...

Grrrrr. I hate this. THIS is why I've tried to go it alone and not push for what the DC's need.

TAC meeting next Thursday. Am not looking forward to it tbh.

CouthySaysEatChoccyEggs Mon 15-Apr-13 15:13:35

Definitely FII they're looking at - they've only really properly spoken to the two worst people to talk to - the lying Primary School HT, and the Old HV who disagreed with my choice of Nursery.

They spoke to health, who have taken some of my questions about has DD got this, or that (wanting answers as to why she's been dxd with GDD, cardiac issues, LD's, Hypermobility syndrome, dyspraxia, hearing issues etc.) where I had researched and different things had come up, so I'd asked whether they were possibilities, and the Paed at the time noted that I "thought she had X, Y & Z", not that I'd asked if it was a possibility.

The past history of involvement with SS isn't helping either.

Which is frustrating.

Tbh, I'm frightened of losing the DC's.

DS2 & DS3 would go to their dad's, and I know he would let me see them.

DD would only really have her dad's to go to - 600 bloody miles away from me on the top end of Scotland. And she only sees him for two weeks a year, and he's only been involved for the last 3 years, since she was 12. So she's only seen him in person for 6-7 weeks in total in her whole life.

DS1 would only have his dad & SM's to go to - but he hasn't stayed at their house since August last year, and he and his SM hate each other, she hurt him physically, and left marks, and I felt I had no choice but to contact SS myself. He would HATE to go there, it would really mess him up tbh.

I don't know, just the speed at which they are doing things is scaring me - speaking to DD alone at school on Friday, and DS1 & DS2 alone without me on Monday, then a TAC meeting next Thursday.

I'm scared now.

MareeyaDolores Mon 15-Apr-13 15:18:11

Take away a sibling group of dc with marked SN who would be 'hard to place' for adoption and expensive to foster? Not a chance.

MareeyaDolores Mon 15-Apr-13 15:19:50

and if your ex had the younger two, he'd soon be asking for expensive services too, and dads are often a lot harder for professionals to fob off than mums....

MareeyaDolores Mon 15-Apr-13 15:20:45

Would your paediatrician be present?
ask them if they'll hold the TAC at the hospital
and if not, get it formally recorded that you wanted the paediatrician invited

PolterGoose Mon 15-Apr-13 16:02:24

Everything Mareeya said.

Wish I had wise words, can only send you my bestest positive wishes and some cyber flowers

CouthySaysEatChoccyEggs Mon 15-Apr-13 16:05:47

TAC is going to be at DD's school (I feel more relaxed there, and less like my opinions will be ignored). They asked if we could do it at the DS's Primary School, which I declined as it doesn't feel like Neutral ground.

They raised an eyebrow at that, as the HT had already had his say, but I was firm that I didn't want it there.

They asked to speak to DS1 & DS2 at their Primary School too, but I requested that they did that at my home, upstairs.

They did that with DS1 when I had to ring them about his SM hurting him, so no issues there.

Ugh, I don't know, I just don't want to lose my babies (well, one toddler and three older ones, but still my babies IYSWIM), simply because of my distant past and wanting the best for my DC's, trying to get them the help they need.

Oh - and apparently, according to the school, a writing slope for a severely hypermobile DC is 'stigmatising'. WTactualF?!

CouthySaysEatChoccyEggs Mon 15-Apr-13 16:08:05

Only DS3 is currently under a Paed, though DS2 and DD are under the school Doctor. God knows who will be present, seeing as the Paed DS3 saw last time turned out to be a Locum, and the new Paed hasn't met him yet as I haven't had the appointment date sent out yet.

CouthySaysEatChoccyEggs Mon 15-Apr-13 16:31:46

Oh - and they asked if my Counsellor (attached to Dr surgery, long story, she is a qualified psychotherapist though) was doing a psychological assessment...

I said I doubt it, as we had only had one session so far, and the sessions are only fortnightly due to childcare issues.

They asked if I thought she would be able to provide a report at the end of the process. I replied truthfully that I didn't know.

How can I even be honest with the counsellor about my feelings if SS want a report?

It's meant to be my space to offload stresses.

I HATE this level of intrusion. All because DS1's dad is angry that I contacted SS when his SM hurt him - he told me that we should have 'sorted it out between us', and that I should 'watch myself'.

It's all malicious revenge, when all I was doing was ensuring the safety of DS1 as he's too cowardly to stand up to his partner about the way she has always treated DS1.

The fact that DS1's dad has dropped from having overnight contact 45% of the time, to 4 hours once a fortnight is quite telling - and he doesn't take DS1 back to his house either.

His choice to drop to that level of contact - I have never said he can't have him since this all started, and I have never said he can't take him out for a couple of hours after school either.

Grrrrrrrr. angry

Galena Mon 15-Apr-13 17:04:40

I don't know what to say - it's so very hard.

CouthySaysEatChoccyEggs Mon 15-Apr-13 17:05:00

The one issue with my Ex having the DC's though is his own SN's.

And being Essex, they were very reticent to agree to letting me record the TAC for personal use for memory issues - though both SW's said they didn't mind, they said it was exceedingly unlikely that all participants would agree, though they would ask.

I pointed out that I have memory issues due to a combo of my seizures & meds for that, and as it is me requesting a 'reasonable adjustment' on the basis of my disability, bearing the Equality Act 2010 in mind, I can't see why anybody would refuse...

I also stated that I was willing to sign a disclaimer that the recording would only be used for personal purposes of a memory aid, and would not be published or distributed. (Have had to say that before, and sign forms to that effect, and am happy to do so.)

Gah!

They kept going on about how they would send me out their minutes, but I know from prior experience that their own minutes are never comprehensive, and I would prefer a direct recording.

I am in Essex...

I bet it will be the Primary HT that refuses, even if everyone else agrees.

<<Opens book now...>>

I asked if I could take someone along for support, an advocate, and at first they said that as my Ex will be there too, why would I need anyone else.

(Clue is in the word EX...not DS1's dad, granted, but DS2 & DS3's dad, but he's still my Ex for a reason...)

I suggested Parent Partnership - but are there any advocates I can take that are totally independent of the LA??

(And that's if we actually HAVE a PP officer, we've been years without one, and I've not tried since!)

elliejjtiny Mon 15-Apr-13 18:40:00

Is there one of the dc's professionals who you trust who can take notes for you?

CouthySaysEatChoccyEggs Mon 15-Apr-13 19:15:59

Not really, they all seem very 'connected'. Except maybe the Orthotist, but his input is very minimal bar providing orthotic shoe inserts. Tbh I doubt he'll even go.

PolterGoose Mon 15-Apr-13 19:18:56

Is there anyone on here that is close'ish to you and could accompany you? If I wasn't the other side of the country I'd do it, so am sure that others would too.

MareeyaDolores Mon 15-Apr-13 19:26:36

Trainee doctors often record video-consultations for learning purposes (with consent, natch) so it's unlikely that any GP /paediatrician will object to an audio. Especially if you ask in advance wink before the other call: 'You don't want this dreadful loony-mum taping you? No, thought not'

It might perhaps be worth agreeing that you would only keep the tape for long enough to prepare a transcript for circulation and agreement. Or maybe to offer a copy of it to everyone present?

MareeyaDolores Mon 15-Apr-13 19:27:19

would your epilepsy worker come to minute-take? especially relevant if they've refused 'reasonable adaptations'

CouthySaysEatChoccyEggs Mon 15-Apr-13 22:41:33

'Epilepsy worker'?! In my PCT?! No such thing, other than the Neuro...

MareeyaDolores Mon 15-Apr-13 23:18:26

I might be getting confused blush but wasn't there someone quite good from an epilepsy charity who helped you with some of your own issues ages ago? Was pretty good at dla forms but didn't do any kids' forms??

CouthySaysEatChoccyEggs Mon 15-Apr-13 23:57:38

No, she wasn't from an epilepsy charity, it was just a floating support charity - it's a shame she doesn't deal with anything to do with the DC's, or I would have asked her, but this won't be in their remit.

MareeyaDolores Tue 16-Apr-13 00:43:08

Not to help the dc, more like an advocate to help you liase with professionals unhampered by concerns about communication / memory / having a seizure mid-TAC / crying. Like an interpreter for someone with English-language problems, or a note-taker for a hearing impaired parent.

CouthySaysEatChoccyEggs Tue 16-Apr-13 03:04:59

I'll ring them tomorrow but tbh, from what I recall her telling me is that it's not in their remit to do that kind of support, it's more about form filling and organisational stuff.

justaboutalittlefrazzled Tue 16-Apr-13 08:25:07

OK am up to date now.

This isn't actually as bad as I was expecting.

The fact that you are being invited to a team around the child meeting suggests that at this stage they are not terribly worried because if they were it would be upgraded to a CP meeting which you would not be able to attend. This IS going to be a very difficult and crucial meeting though I expect.

Can you take a friend?

justaboutalittlefrazzled Tue 16-Apr-13 11:01:48

Also- thing with the psychotherapist, it could be useful if you trust her, she could do a report on you (without breaking confidence on what you said) and that could be helpful to your case.

justaboutalittlefrazzled Tue 16-Apr-13 11:03:17

Are you the only private buyer looking at it?

justaboutalittlefrazzled Tue 16-Apr-13 11:04:16

(oh shit sorry wrong thread) blush

elliejjtiny Tue 16-Apr-13 11:22:48

Do you use a local children's centre? Someone from there might be able to come with you and take notes, or homestart or barnardos.

CouthySaysEatChoccyEggs Tue 16-Apr-13 16:43:15

PP officer a no-go, still not one in my area. Children's Centre a good idea. Can't do Barnardo's as the lady from there was working with the old HV that disagreed with me about SN Nursery, and I wouldn't feel totally that she was there for me, IYSWIM.

I've thought about it, and tbh, I'm a lot less concerned than yesterday.

Nobody would tell somebody that needed a wheelchair that that wheelchair, an adaptation for their disability was 'stigmatising'. So to say that a writing slope for a severely hypermobile DC is 'stigmatising' obviously looks odd on the HT tbh.

So, the old HV and I disagree on Nursery placement - ultimately, if the education board are recommending the SN Nursery as the Specialist Pre-School assessor has said she will, and I and DS3's dad have PR and it's what we both think is the correct Nursery placement, despite not being together, then it's not just my opinion, it's backed up by an LA employee...

I need to back off on the pushing for the school to pay for things - I might ask if I was willing to pay for a writing slope if they would accept that, to help his handwriting as I feel that he has so much more to offer academically if his handwriting catches up, but I will grudgingly accept no for an answer, and just use it for practice at home.

The SALT actually did a CELF test on DS2 today, which he aced, apart from his immature grammar and sentence structure, and a few past tense issues. She did note his stutter and the fact that he has a very mild stammer.

She has given me some tips to help him with these issues, and she will send out the final report, with percentages on, out to me.

Glad he is catching up, but it was typical that lots of the questions she asked were about two of his obsessions - food and animals.

<<Le Sigh>>

So, of course, he spoke at length, in great detail, using quite adult language. Mostly because he avidly learns about animals, reading quite adult books about them.

Hey-ho. I'm glad that I will finally have a report to hold onto, and that I now have some tactics to correct the minor issues that remain with his speech.

I'm going to go along to the meeting, try to allay their concerns, explain that I am only trying to help each if my children to reach their full potential and achieve the best they can.

If they have specific concerns, I will happily address them and try to rectify them.

It doesn't change my DC's dxd issues, they can't change their mind at this point about things that have been dxd for years.

One bit of good news - DD doesn't have to resit her Science CA. She got a 'D'!! gringrin

So pleased with and for her.

Such a confidence boost - she got the highest mark in her class!!

So, I'm feeling much calmer and less panicky today. Maybe some good will come out of this meeting, if the HT is informed by DS2's Physio that she recommends a writing slope to aid his handwriting. Who knows.

I'm going to go into this meeting with an open mind, ready to hear them out, as it's all I can do.

I WILL be checking out to see if there is an advocate from the Children's Centre that might be able to come, though, that's a really good idea.

elliejjtiny Tue 16-Apr-13 18:13:31

That's sods law with your DS2 and the SALT. The community paed came to assess DS1 for aspergers at school and of course he chose that day to play happily with one of the boys in his class and make me look like an idiot.

IME HV's are clueless about SN's. Mine didn't want DS2 to have a wheelchair despite him being unable to get to school without one. The specialist preschool assessor's opinion should carry more weight than the HV's. I find that HV's are good for asking advice about a non-SN PFB. They can give basic advice on sleep, potty training and when you should see the GP. But if you have a child with SN they are useless I find and it's like a toddler helping you with the housework. I may be a bit biased though as having some disagreements with mine at the moment. I think I'm the expert on DC with SN as I have 2.5 of them and she thinks she is because she's a professional.

Well done to your DD for the science thing.

PolterGoose Tue 16-Apr-13 18:26:00

Glad you've got a plan Couthy and good luck with it all as always flowers

(as an aside my HV was fab and was instrumental in getting ds's needs met at school and in his referral for assessment, some are definitely better than others like any profession)

CouthySaysEatChoccyEggs Tue 16-Apr-13 19:35:51

It's just a case if playing the game. If playing the game gets DS2 his writing slope, then I don't care. If it means me paying for it, then so be it.

It occurred to me that as the school have illegally taken DS2 off both SA and SA+, despite outside involvement, they aren't actually getting any extra funds to support his physical issues with.

So the bluster from the HT about how a writing slope would be 'stigmatising' might just be a way of saying "we can't afford this". If that is the case, then me offering to pay for it and send it into school might placate him...

Play the game, Couthy, play the game! grinwink

justaboutalittlefrazzled Tue 16-Apr-13 21:43:01

It sounds a good plan. I agree you need to play the game.

In some ways it is an opportunity to get everyone in a room talking about DCS needs, which is always good.

BeeMom Wed 17-Apr-13 01:07:18

One tiny aside - a 3 ring binder turned on its side makes a good writing slope. If you work with him at home on a proper slope but he can't have access to one at school, if he has a binder, it can work as a slope in a pinch.

CouthySaysEatChoccyEggs Wed 17-Apr-13 07:18:43

Bee - currently the school won't even let him do that... hmm

BeeMom Wed 17-Apr-13 13:45:49

That is officially asinine.

MareeyaDolores Wed 17-Apr-13 13:47:35

could you ask OT/ physio to 'acknowledge the school's concerns about him being different' and get them to suggest the binder solution?

CouthySaysEatChoccyEggs Wed 17-Apr-13 14:29:04

I will - tbh, the Physio has referred DS2 to the OT to assess him to see what, if any, adaptations he needs, but the appointment isn't until after the TAC meeting on the 25th - his OT assessment is on Thursday 9th May.

Which is a PITA.

She has referred him because she thinks he might need...a writing slope!!!

<<Bangs head off wall repeatedly!>>

CouthySaysEatChoccyEggs Wed 17-Apr-13 14:35:56

Also, something that may help me, but is half 'good' news, and half 'bad' news - the MS preschool that the HV wants DS3 to attend (the same one that DS1 & DS2 attended) have told me that they don't believe they can meet his needs.

I have to drop off a list about his allergies and speech issues, and the head if the MS preschool has agreed to write a letter stating that they don't believe they can meet his needs, and that the SN Nursery I have found is probably a better placement for him. And she will have the letter ready on Wednesday, so that I can take it to the TAC meeting with me!

She rolled her eyes when I explained! And said that this is becoming increasingly common now.

She also said she will point out in the letter that I put DS3's name down on the waiting list for their preschool when he was just a WEEK old, and also that while they felt able to cope with DS2's additional needs (he was non verbal when he started), that due to the allergies combined with his lack of speech, they don't feel able to meet DS3's needs.

She is also going to point out that when DS1 was there, he was very advanced for his age and had no speech difficulties!

So though it's bad news to have in writing that the MS preschool cannot meet his needs, it might show that on looking at SN Nursery, I'm not over exaggerating his issues.

We shall see!

I'm thankful that DS3 is seeing the allergist before the TAC meeting too - though it's only the day before, they want the allergist present.

So, we shall see.

MareeyaDolores Wed 17-Apr-13 14:36:00

ooh... could you use that to get the OT to bring the assessment forward (or postphone the TAC a couple of weeks...)

Have been very impressed with all the OTs we've come across so far. Professionalism, kindness and most importantly, common sense in bucket-loads

MareeyaDolores Wed 17-Apr-13 14:40:16

sounds like the SN lady would be good to have in the TAC too. You can ask her yourself if she'd come if invited, then twist SW arms to have her summoned (and if they won't do it, and the meeting is sh**e, it's easily demonstrated that it was unhelpful because the 'wrong' people were there

Quite important to have some continuity for the TAC too. If you were a FII loonymum, it would be really important to have someone there who'd known you and all the dc for years, cos you'd be much less likely to have pulled the wool over the eyes of someone whose seen you over time.

Starlight declared herself the keyworker at one of their TACs... that would mean you get to decide the date/ time of meetings plus who to invite

CouthySaysEatChoccyEggs Wed 17-Apr-13 16:01:49

Preschool lady not likely to be invited to the meeting - a) she would be part of the adult-child ratio at the preschool and b) she hasn't currently got day-to-day involvement with any of the DC's. DS2 left preschool in July '08, DS3 not due to start until Sep '13.

(7 year gap between DC's)

CouthySaysEatChoccyEggs Wed 17-Apr-13 16:04:50

OT can't change appointment - it was the first available.

SS won't wait any longer than next Thursday for the TAC meeting, they wanted to do it this week, but my Ex isn't off till next week (on a weekday), and as he has PR for DS2 & DS3 same as I do, he has a legal right to be there.

So there's no chance of them postponing the TAC meeting for after the OT appointment.

CouthySaysEatChoccyEggs Wed 17-Apr-13 16:06:57

At least DS3 has his annual allergist appointment the day before the TAC, I won't have the report that quickly, but I can explain what has happened in that appointment if the allergist doesn't go to the TAC.

CouthySaysEatChoccyEggs Wed 17-Apr-13 16:07:47

DS3 will have additional skin prick tests done at the allergist appointment, so that will be firm evidence too.

CouthySaysEatChoccyEggs Wed 17-Apr-13 22:10:32

On a different note, the SS OT came out to do my assessment, and is going to provide a perch stool, a freestanding grab rail for the toilet, and a shower board to help me get in the bath.

She is also going to request an over bath shower from my Housing Association. If they refuse to stump up, she will go for one through the Disabled Facilities Grant.

And a second hand rail for the stairs - again, request from the HA first, but if they won't do it, then she will, they don't need a grant for that.

So at least I'm getting a bit of help equipment wise.

AnotherAlias Wed 17-Apr-13 23:47:49

...that sounds positive - hopefully the dc related stuff will start to come good soon as well....fingers crossed for u

justaboutalittlefrazzled Thu 18-Apr-13 03:27:17

Starlight declared herself the keyworker at one of their TACs... that would mean you get to decide the date/ time of meetings plus who to invite

In our area that was explicitly not allowed. I wouldn't try that TBH, it could look presumptuous/trying to overcontrol in the circumstances.

MareeyaDolores Thu 18-Apr-13 05:19:57

justa, I know what you mean, you're right.

Couthy somehow does need to make sure someone competent is in charge though... hopefully there will be somebody in the meeting capable of taking an overview. Because the keyworker is what makes TAC work. And if ever there was a family where the TAC approach could be applied really effectively, it's one where the parent has health issues, 3/4 dc have significant SN, an ex-partner keeps making allegations and SS previously had CP involvement.

SN nursery is weirdly (and widely) perceived as stigmatising and life-chance-limiting though. Which is probably the HV's objection. I've never really understood why: most SN nursery dc go on to do quite well in mainstream, often without any additional support. For example: DS1 (with SEN) went to a regular nursery, dd (without SEN) went to an amazing SN nursery in one of their 'reverse integration' places for NT dc, heck, I went to a SN playgroup back in the 1970s and eventually to uni (and I'm widely perceived as 'normal' ---little do they know---), my dad was at special school for 'delicate' dc in the 1950s and he later became a fully qualified skilled tradesman.

justaboutalittlefrazzled Thu 18-Apr-13 05:44:45

Yes I totally agree. I am a big fan of TAC/CAF/(Strengthening Families in NZ) but their effectiveness and a positive atmosphere all hinges on the keyworker.
Couthy, who is calling this one and who is in charge?

MareeyaDolores Thu 18-Apr-13 05:54:55

Couthy, if you officially need an over-bath shower for yourself, does that mean you really need a wet-room shower to safely bath the younger dc? Cos the DFG builders quotes are always extortionate cos it's a public sector contract aren't usually as different as you'd guess. If so, you don't need to actively do anything about it yet, other than making minuted comments about the difficulties of bathtime wink

CouthySaysEatChoccyEggs Thu 18-Apr-13 17:27:22

SS are calling this one on the basis of DS1's dad's allegations and the 'concerns' of some health professionals. (Read old HV and old Paed who told me DD was 'on the spectrum somewhere', handed me a bunch of leaflets and left me to get on with it 11 years ago, without a formal assessment that I didn't know was needed back then, I was only 20 at that point...)

CouthySaysEatChoccyEggs Thu 18-Apr-13 17:28:38

I don't bath the younger DC - my Ex does, when he ones round after work to do so. With having seizures, Id never trust myself dealing with a very young DC around water like that.

The over bath shower is for me!

CouthySaysEatChoccyEggs Thu 18-Apr-13 17:40:57

I didn't realise that SN Nursery was seen as so 'stigmatising'. Does that mean that every DC that attends an SN Nursery is stigmatised for life?!

I can't think of a single job application, for example, that asks which Nursery you attended...

And I'm already looking around for a better MS Primary, and have probably found one, where they already have Makaton trained staff, things like that. Which the one I currently have DC's at doesn't.

And when DS3 starts Reception, DS2 will be starting Secondary, do I won't have a sibling link anyway.

Their current Primary was never one I chose anyway - when we moved to this area, due to me working nights, DD was in Y2, on SA+, so a mid-year SEN transfer to a school that was the only LA controlled school locally, all the rest were VA schools, who set their own admissions and wouldn't go over 30.

And the school took away all her help when we moved in the November, and the SenCo told me that they would be unable to offer her any help until the new budget in April.

Which I KNEW to be untrue, as the previous school had assured me that the remaining SEN budget for DD would and should be transferred to her new school.

This was my DD, who at 6 couldn't add up to 10, from the age of 5yo till 12yo, her maths target on her IEP was to know her number bonds to 10 - she didn't achieve this until she was at Secondary. Which just shows how little help her Primary gave her...

I knew this wasn't right, and that was the first time I requested the SenCop from the LA, went over it with a fine toothed comb, and made a complaint! blush

It got DD's tiny amount of help reinstated though...

Primary school have had it in for me ever since. Especially the SenCo. Who is still the same one 8.5 years later. The woman will never retire, I think she is part of the furniture of the school...

Thing is, the damn SenCo does more for DS1, who is academically in the top 1/2% of the population for his IQ than she has ever done for DD or DS2 combined, despite DD being in SA+ for her entire time at the school, and DS2 being on SA+ until Y2, and SA until Y3...

CouthySaysEatChoccyEggs Sat 20-Apr-13 09:09:29

Hmmm...I'm a bit concerned. SW booked an appointment to speak to DS1 and DS2, upstairs at my home without me, for Monday afternoon.

After school yesterday, DS1 & DS2 tell me that she saw them in school, which I had specifically asked them not to do, as I felt that the school wasn't 'neutral ground'.

Obviously, as I wasn't expecting them to be seen until Monday, I hadn't broached the subject with DS1 & DS2.

The worst of it is that the SW acted all 'surprised' that they hasn't been told, and even told DS1 that she "Thought your Mum was going to tell you about this visit first".

Which I feel is quite undermining, as DS1 came out of school and asked me "Why didn't you say that a SW was going to talk to us, she said that you had said you would tell us first".

This isn't a good sign, is it, that they booked an appointment for Monday at my house and then ignored that and did it on the Friday at school instead?

It feels like my Parental Responsibility on decision making saying that I didn't want this done at their school, but at home upstairs, on neutral ground has just been ignored.

I'm now VERY concerned.

Why would they do this?

CouthySaysEatChoccyEggs Sat 20-Apr-13 09:11:55

And I can't understand why they would undermine me in my DS1's eyes by telling him that I had said I was going to talk to them before she saw them, yet seeing them 3 days early when I wasn't going to tell them during the school week.

It just feels VERY undermining of me as a parent.

justaboutalittlefrazzled Sat 20-Apr-13 21:32:21

I think it's small beer Couthy. They listened to you and they decided to do it differently. Perhaps their boss preferred them to do it at school. That's not a big deal.
The social worker talking to DS1 may have just said "you know about this, don't you, your mum said she would tell you" and expected him to agree.

Do not panic yet. This is still - in my mind - routine stuff.

CouthySaysEatChoccyEggs Sat 20-Apr-13 23:21:44

Is it? It's been such a long time since I have had this amount of SW intrusion into my life, and their agreeing to something with you but saying or doing something entirely different behind your back.

I'm determined not to be paranoid, but I am slightly concerned right now, not so much paranoid but concerned.

MareeyaDolores Sat 20-Apr-13 23:27:35

What justa said, from a don't worry viewpoint.

Id be spitting feathers if a SW came to talk to the dc at school against my expressed wishes and without my knowledge. I would lose my cool completely if that upset my dc and was used as a point of criticism.

So id be at serious risk of getting overexcited about a point of principle, which is probably not a good approach when trying to show how reasonable you are :-)

You could either ignore their error altogether, or ask them to let the children know beforehand, the next time they want to speak to them. As you can only give the dc warning if you've been told yourself. I wouldn't manage that politely though so id need to go for the 'ignore it' option.

MareeyaDolores Sat 20-Apr-13 23:30:16

Professionals routinely undermine parents. Best not to take it personally, unless you're in a position to do something about it.

MareeyaDolores Sat 20-Apr-13 23:35:13

Of course, if FII was officiaaly alledged, itd be a fab fast-track route to a once and fr all decent comprehensive external second opinion on all the dc. Hypermobility and AsD expert with a dash of allergy.
Scuse typos, new bargain price tablet and its rubbish.

justaboutalittlefrazzled Sat 20-Apr-13 23:45:40

Yes, what MD said. Truly, truly, I'm not trying to minimise the fact that it was stupid and wrong BUT I don't see it as a red flag or a deliberate attempt to undermine you. If another thing happened like this, then yes it would be a concerning pattern. Now it's at the stage of probable cockup I think.

When NZ SS interviewed my son at school he just refused to engage and played with toys instead good boy which obviously hampered their investigation :-)

BeeMom Sun 21-Apr-13 13:56:23

One other potential point of contention for the SW... the child's home is NEVER considered neutral ground. Neutral ground is somewhere that neither party involved has an increased comfort level or familiarity (like a coffee shop or a community meeting place). The SW's office, or the school might tip the scales in the favour of the SW, but "at home, upstairs" is definitely not neutral.

Consider it a test - and respond accordingly.

CouthySaysEatChoccyEggs Sun 21-Apr-13 20:46:55

I would have been happier taking them to the SS offices than it being done at the school!

I'm certainly not going to go stellar about it, much as I might like to. I'm going to treat it as a cock-up for now, and ask them politely not to change these appointments without contacting me first so that I have a chance to talk to my DC's first to explain that a lady will be coming to see them, as DS1 was worried that he was in trouble when he was called out of class, and couldn't work put what he had done wrong!

So it did upset him a bit, and I feel I have a right to politely point that out.

justaboutalittlefrazzled Mon 22-Apr-13 00:34:38

Yes, I think that's reasonable.
In the letter of complaint I am drafting to the fuckwits children's mental health professionals who referred us , I am going to point out that DS2 cried about it.

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