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Here are some suggested organisations that offer expert advice on SN.


(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.


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 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...

StarlightMcKenzie Mon 08-Apr-13 23:22:24

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?

StarlightMcKenzie Mon 08-Apr-13 23:23:39

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

StarlightMcKenzie Mon 08-Apr-13 23:38:37

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.

StarlightMcKenzie Mon 08-Apr-13 23:40:08

'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.

StarlightMcKenzie Mon 08-Apr-13 23:40:47

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 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.

StarlightMcKenzie Mon 08-Apr-13 23:48:44

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?

StarlightMcKenzie Mon 08-Apr-13 23:50:37

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?

StarlightMcKenzie Mon 08-Apr-13 23:51:49

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

Message withdrawn at poster's request.

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