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

[RowanMumsnet]

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

Oooh, that book sounds interesting. Thank you.

Thanks Sue
I haven't tried parent partnership but I will now give that a go.
It's heartbreaking to see your own child in such a mess and as you must know yourself it's exhausting enough looking after them day to day so having to battle for support like many on here is so frustrating.
Thank you for taking your time and help too.

Its been three years since we has our DX for DS, but I still dont think I have come to terms with it, and I have bad days when I cry my eyes out at what the future holds.

[quote madwomanintheattic]And what of the oft - discussed statementing passport, where you could move counties and not have to start stat assessment from scratch?

We moved a lot when dd2 was small (military) and I became pretty hot at moving around, but there is no denying that the postcode lottery is a real problem, and that most support decisions are based on funding availability, and not need.

Hello messymamma

So sorry to hear about the dx. Hope it is what you expected and can help you all.

Parent partnership will trot out LA 'policies' about what constitutes the law - in most areas.

Check anything out with us!

I agree - Our pp is definitely not impartial.

@messymama

Reading with interest. Ds diagnosed with ASD TODAY. Have been given early support booklet and going to be booked in for early bird plus. What can i do now? What should i be doing? Do i tell friends? Have no idea what to do. Only came on mumsnet tonight to look for answers.

Hi Messymama

I would start by talking to your most supportive friends and see how you feel. If you are a bit shellshocked you might find it exhausting so might only be able to manage a couple at a time. Also be prepared for being a bit inundated with questions you might not be able to answer yet. Friends and relatives are often keen to get as much information out of you as they can because they want to help but it can feel overwhelming.

The early bird course is usually very good and give you a chance to meet other parents.

There are lots of mums on mumsnet too who i'm sure will support you.

Good luck with everything

You have to have a CAF before you have can apply to see an EP, you have to go through SA and SA+ before you an apply for a statement, you won't get a statement unless your child is 2 years behind etc etc.

All LA policies/myths. All trotted out to parents in our areas in public meetings.

Legally, all rubbish.

One last question unless I think of another (Star wonders if she is even allowed more than one question but has forgotten the rules - thank you for keeping up with us so fast btw)

Do you ever visit/lurk/read or post on the SN section of this site?

Ooops - are there rules? Best go! But would like to hear your views on the failure of LAs to follow the SEN Direct Payment Reg.

@madwomanintheattic

Parent partnership is a tricky subject on mn... Sometimes the shared office space with the LA leads to a conflict of interest - the old funding v need thing again.

Hi Madwoman

I know they really can vary. Sharing office space now means they would be 'non compliant' though. In 2010 following parental concerns the DfE introduced 'exemplifications of minimum standards for parent partnership services' these are to try to increase parental confidence on the impartiality of the role.

Only about 25% are outsourced to organisations such as KIDS and Barnados.

Thanks, shame there is no magic wand to take the edge off the new list of worries and concerns!

I would suggest that anyone who has been presented with any kind of life affecting diagnosis is to check one of the 'official' groups on the Internet, such as a regional Facebook groups or one of the major organisations' fora, like the one on www.oliviasvision.org . Share your worries and someone out there will have already travelled the road you're on and will be able to support you

If anyone out there has a child with Juvenile Idiopathic Arthritis please get in touch with me. I'm a local area contact for the Children's Chronic Arthritis Association and have a great contact if your child has Uveitis, too (Olivia's Vision). The first year, or two, or three is a daunting time and there's so much to take in board with a chronic disabling illness that it can take years just to get to grips with a diagnosis, let alone drugs, therapy, attitudes, etc.

Does KIDS offer a post dx support service?

Thanks appropriately employed of course I would check it out on here all you MN SN really know your stuff and have been beyond great ! This is my one and only support group so I need you all:)

V interesting! Thanks, sue!

@Crumblemum

Can I ask a slightly different question. One of my closest friends children, who is exactly the same age as my son, is in the process of being dx'd. Not entirely sure what his diagnosis will be (I think AHD). Anyhow, what should I tell my son. They've been very close since birth (if you know what I mean) but as they're now approaching 6 he is becoming more aware that his friend's behaviour isn't always what he'd expect. Thankfully he's still absolutely as keen to get together and play, so should I just gloss over it or is there value in introducing the concept of some kids doing things slightly differently?

Hope I've asked this sensitively. I'm genuinely not sure

Hi Crumble mum

I would take the lead from your friend. Most children are more understanding if they are told there is a reason for the behaviour and given a brief explanation why he behaves the way he does - everyone is different and once your friend gets the diagnosis it might be a little easier to explain

@appropriatelyemployed

Ooops - are there rules? Best go! But would like to hear your views on the failure of LAs to follow the SEN Direct Payment Reg.

No no - given that Sue is going through the questions at such superhuman speeds, I wouldn't worry about it!

I work for my LA and I have a disabled child who uses their services.
Over the last couple of years I have watched as the services for disabled children have been dismantled.

This has included the cutting of many therapy posts leaving statutory services understaffed.
The cutting of funding to the major charity service provider by 66%
Suspension of respite hours for all except the children who are eligible for hospice care
The deletion of the 'Short Breaks' co-ordinator
The suspension of direct payments
The cutting of the sibling's group

The local CFCS (CAMHS) is in free fall and unable to offer anything but the most basic service.

My son was dx with ASD/LD and APD.
I was offered NOTHING post diagnosis.

So no real question. Just despair at what is happening to services that have taken years to build up.

I am in awe.

First time I've ever been on a web chat where the star of the show has answered every question and it's the mners that can't keep up!

@KeemaNaanAndCurryOn

Its a fine balance. When this all started, I had absolutely know idea what DS needed or where he needed to go or what was available or what would help me. If parents don't have that knowledge then I can see it being difficult to know what to do with a budget even if they got one.

Do you see organisations like yours offering signposting to parents in the future to help them with this?

Hi Keema

I think it will be vital that organisations such as KIDS are there to support parents and broker support packages on their behalf. The main problem is there isnt really a market out there yet sufficiently developed for parents to purchase services. It will also be vital that quality and safety of provision is maintained and that personalisation isnt seen as a cheaper option

@appropriatelyemployed

"The SEN green paper pathfinders are testing out an education, health and social care action plan which should replace the old statutory assessment and by a means of pulling in support from all statutory agencies in a coordinated way. "

Mmmmm, but this isn't actually happening is it?

You will find that many LAs who have signed up to this pilot are refusing parents access to direct payments for SEN or they are placing rigid restrictions on the type of SEN or child or area or provision..

Of course, none of this is permitted by the Regulation introducing the SEN direct payments, but, heh hoh, what's the law to LAs.

You should be careful about trotting out policy statements/aspirations which don't reflect reality.

This is, and always has been, about MONEY. Children are unlikely to end up better off and LAs are unlikely to release the purse strings.

Hi appropriate

We've only had the greenpaper so far and the pathfinders dont seem to be that far down the road as yet I agree.