Mumsnetters aren't necessarily qualified to help if your child has special needs. If you have any serious concerns, we would urge you to consult your GP or other suggested organisations that offer expert advice on SN

The first year after a diagnosis: how to cope, and where to go for information, advice and practical help. Mumsnet/KIDS support session, Wednesday April 25, 8pm

(142 Posts)
RowanMumsnet (MNHQ) Mon 23-Apr-12 19:20:42

Hello there,

Following on from discussion on this thread, we're pleased to announce that we're going to host the first support session with a member of KIDS staff this Wednesday evening between 8pm amd 9pm. The topic of Wednesday night's session will be: 'The first year after a diagnosis: how to cope, and where to go for information, advice and practical help'

KIDS is a national charity working with disabled children, young people and their families across England. Sue Cawkwell is the KIDS Regional Director for Yorkshire and Lincolnshire, managing a range of services such as Parent Partnerships, specialist keyworkers for disabled children, short breaks services and disabled children's advocates. She is the mother of three children, two of whom have disabilities.

As outlined on the previous thread, the idea of these support sessions is to complement the advice and support that Special Needs posters already give each other with the insight and experience of people working for an organisation in the field. We hope that the session will pull together perspectives and advice from MNers and from Sue, and that the thread will serve as a reference point for posters caring for a child who has recently been diagnosed.

This is a trial run for these support sessions, so do please continue to keep feedback coming on this thread.

It would be great to have as many of you as possible join us 'live' on Wednesday evening, but if you can't make it, please also post up any advance questions for Sue here.

Thanks,
MNHQ

SueCawkwell Wed 25-Apr-12 21:14:38

StarshitTerrorise

RowanMN Are you SURE there isn't a small KIDS army in there typing away?
Did you get in extra biscuits to fuel the speed typing?

WHAT is going on?

Nope - my first time in a chat room smile

StarshitTerrorise Wed 25-Apr-12 21:17:59

Thank you for coming, and excellent service!

I wonder if the next session could be on how to successfully naviage a multi-disciplinary meeting and actually get some accountability and actionable outcomes. SO many people struggle with that and feel that team around the child actually means team around the parent, as in right around!

HotheadPaisan Wed 25-Apr-12 21:19:51

<round of applause for Sue>

See you in MNSN sometime, there is a good SN FAQ on MN too but it might be helpful to add a 'latest developments' section too. I've spent this year just trying to understand what was going on and what help I could get for DS1, now I need to get the right provision in place and keep an eye on what's coming.

RowanMumsnet (MNHQ) Wed 25-Apr-12 21:20:01

madwomanintheattic

The politicians weren't this fast, and they had typists and everything...

I've no idea how she managed it - she's not even in the office and therefore getting her hand held like guests normally do

Thanks so much to Sue for her contributions tonight, and to everyone who posted.

We hope you've found this useful; do keep the feedback coming.

MNHQ

HotheadPaisan Wed 25-Apr-12 21:21:08

Holding their hands is prob what holds them up...

SueCawkwell Wed 25-Apr-12 21:21:16

StarshitTerrorise

Thank you for coming, and excellent service!

I wonder if the next session could be on how to successfully naviage a multi-disciplinary meeting and actually get some accountability and actionable outcomes. SO many people struggle with that and feel that team around the child actually means team around the parent, as in right around!

Hello Starshit
Just saw your messsge before logging off. Does your area deliver the Early Support Parent Workshops? They are a good way of giving parents confidence and approaches for meetings with professionals.

SueCawkwell Wed 25-Apr-12 21:22:21

Night everyone - off home now

UnChartered Wed 25-Apr-12 21:24:49

thanks for arranging this, i missed the live chat, but Sue has been very efficient!

hope it's a regular thing, online support

RowanMumsnet (MNHQ) Wed 25-Apr-12 21:25:57

HotheadPaisan

Holding their hands is prob what holds them up...

Oh, very funny grin

RowanMumsnet (MNHQ) Wed 25-Apr-12 21:32:29

UnChartered

thanks for arranging this, i missed the live chat, but Sue has been very efficient!

hope it's a regular thing, online support

Thanks, UnChartered

Of course, we'd be the first to acknowledge that the regular posters in SN are the first and best source of support on here, but we are hoping that sessions like this will add an extra perspective, and hopefully be useful.

We'll be putting our heads together at MNHQ (and with KIDS) to try to evaluate how useful this was - so do please let us know what you think.

appropriatelyemployed Wed 25-Apr-12 22:22:44

Thanks for posting your replies and listening to us.

I should point out for anyone still reading that LAs have not just had the green paper so far. There was in fact a statutory instrument published in Jan 2012 - the Special Educational Needs (Direct Payments) (Pilot Scheme) Order 2012.

This Regulation requires pilot authorities (listed in Sch 2) to follow its framework for all children/young people with SEN statements or learning difficulty assessments. It provides no discretion for the pilot local authorities to test out the proposals with a small sample of potential beneficiaries for example or impose additional criteria.

LAs are refusing even to accept requests under it.

StarshitTerrorise Thu 26-Apr-12 08:21:26

'Does your area deliver the Early Support Parent Workshops?'

No (at least no-one told me if they do). I would not expect my LA to offer anything that might empower a parent (not earlybird, portage, currently disbanding support groups etc). Those workshops sound like a good idea though.

I'm actually referring to my first LA (moved on Sat) so perhaps my second is better. I certainly hope so and moved with that hope.

Where would you find out about Early Support Parent Workshops though?

OhDoAdmitMrsDeVere Thu 26-Apr-12 08:43:10

Nearest children's centre. If they dont know ask them if there is a Child Developement Team/Centre.

BackforGood Thu 26-Apr-12 09:16:54

Thing being, Early Support is a brilliant idea / system in theory, but in practice there is no funding alongside it to give people the hours it takes to be the Key Worker. They expect other staff (SENCOs, HVs, FSWs) to just take it on, on top of their workload (which, in many cases has already increased over the last few years of cuts and recruitment freezes to teams without it). It would be such a small investment in terms of a few hours of (specially trained) FSW time at the point of diagnosis / some time early in the 'journey', to give the families some support and actually empower them as they are given the structure of the ES materials, that long term, I bet it would save the 'public purse' ££££.

It doesn't help of course that tiem after time when you try to order the ES materials, the website just doesn't let you.

HotheadPaisan Thu 26-Apr-12 10:08:21

We were on the cusp as DS1 was 4.5/5 when we asked for help and it just didn't materialise.

OhDoAdmitMrsDeVere Thu 26-Apr-12 12:32:57

All the ES materials are for download only now hmm

The whole system is gone to hell.

Seriously.

nappyaddict Wed 19-Sep-12 09:27:45

So when's the first support session?

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