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

marking my place as we're so close to dx...thanks for this MNHQ

Although nothing to do with me, I was just wondering where MNHQ got a TARDIS if it's April 15th.

Oh cripes.

Thanks Tee!

Marking Place

Marking spot third in the queue :)

Just hope I remember - I'm terrible for remembering stuff!

Ben raises an important point though, an hour window might be problematic - DD often doesn't settle until 9pm...quite a common thing with DC with SN...

My work here is done.... ::hides thread::

support sessions sounds a really good idea! i will probably come and lurk, no dx yet but info might still come in handy. if they could also mention any suggestions or advice for those who are still going through assessment processes that would be great, or if no time for that maybe you would be able to do that topic another time?

Oh this is good, I'll be there. My dd was diagnosed with ASD in February of this year, and we've found that after the diagnosis, that was it. They were supposed to be sending me loads of info about autism and parent sessions but I've had nothing.

Great. We did get some 'stuff' but none of it helpful. Mostly it seemed to be propaganda encouraging parents not to ask questions, search on Internet and just 'have faith in the LA professionals' and 'reduce your expectations'.

Yes, if I hear "as DS's parents you know him best" once more I may scream. If I'd have realised that clinical psychology involved telling people to look on line and do what you want, I would've changed my degree at uni.

Well my experience twice over has been"here's your diagnosis (autism), goodbye" I did get offered leaflets second time round but was told I knew more than they'd tell me anyway.I'm a long way past my first year now and we've survived but looking back I'm amazed that anyone thought it was ok to hand out a moderate autism and learning difficulties diagnosis and expect a parent to work it out for themselves.

keema, remember, you only know your dc best until the moment when you start expecting some decent input/help/provision.

once you show that you expect your knowledge of your dc to be put to good use, then all of a sudden, you are relegated to 'just a parent' (and not in a good way) again

I am a long way past dx too (coming up to 5 years now), but I wish there had been something like to refer this back when dd1 was dx'd. it would have saved months of trawling through MNSN archives

Yes, - you're the parents, you know best, but we're the professionals and we know better..........most OTHER parents accept that and can't do without us.....

Well, dd2 was dx 6 years ago (cerebral palsy), but ds1 was only dx in dec (adhd with aspergers traits (sensory and social) anxieties and phobias). tbh i'm comfortable and not in direct need of advice as have been around and about the community for some time. just really popped on to say this is a great idea, and to big up KIDS - i was a board member on a parent action group who worked closely with KIDS to provide an annual summer playscheme for children and youth with disabilities, and they are awesome.

DD was diagnosed last july.

Yes she has aspergers. Read these books. Goodbye.

We are now re-entering the world off meetings and begging for help as unsurprisingly just giving a label doesn't cure the problem.

I'm working tomorrow evening but look forward to reading what happens.

We're close to a dx here for asd, but have pretty much been told outright that it's asd by camhs who will be giving the final dx.

What support should we expect for DS? Are there any organisations that help parents come to terms with a dx too?

Through my work, I'm amazed and saddened how often Parents are - as you say, given a diagnosis and then told 'they will get an appointment through next year to be reviewed. Goodbye'. Amazingly poor service offered because the CDCs are sooooooooooo stretched.
Even if the people giving the diagnoses could give them a leaflet from KIDS, it would be a start.

I was on the waiting list for 12 months to see the clinical psych at our local CDC. We're just waiting for the diagnosis from the MDT now, but it is going to be Aspergers.

We've had an awful year as I had no idea what to do or how to help DS who was getting more and more distressed with school and life. It ended up with me having a full meltdown in my GP's office actually BEGGING for some help to get anywhere - and what I actually got was signed off with stress myself and a recommendation to look on-line.

The best help I have had is from a local parents peer-to-peer group, but you know what? They all have their own problems as well and they don't have all of the answers either. (Plus the fact that some of them are soul sucking martyrs) What you want when you are told that your child has a disorder that is going to impact his whole life and probably yours as well, is some help and support, not fobbing off as there's nothing there.

Chance would be a fine thing.

Got an asd diagnosis in December for DS. Disillusioned with professionals (Camhs) and with private input (EP). Best so far has been the school (teacher, senco, TAs) but even they are frustrated by the lack of support and the hoops we need to jump through to get it.

Mumsnet SN board absolutely fantastic.

We just got the ds (AS) and there is nothing locally apart from parent support groups - i would like to do the nas Help! course but it isnt offered locally at the moment. Luckily, school is brilliant, and we have read up quite a bit.

Test

we're very close to dx, saw a Dr last week who said DD has ASD but as she's not a Consultant, wasn't allowed to dx

still, it's better than hanging on - Dr also warned us of upcoming prejudice and (totally incorrect) judgement by other parents because of DDs behaviour traits. I think this was our 'councilling' [hhm]

We've still not recieved a formal diagnosis - after contacting the paed when DD#1 was 8 months old. She is now 5 and we've had no problems getting a statement (1 yr after paed agreed she was 'different' ) - got her into a superb school and have the most brilliant (utterly brilliant!) support from the NAS.

The consultant goes between saying it's HFA or Aspergers - so I just went straight to the pre-school and got help with applying for a statement. They organised Ed psych, SALT and between them they all agreed she needed help within a mainstream school. Luckily got a place at an awesome school with an ARP specialising in her needs. We have been so, so, so lucky but none of it has been through anywhere other than school or the NAS Nothing in the way of help as come from the paed.

The only thing we cannot get our hands on and are now resorting to privately is an OT. I believe they're rarer than hen's teeth and I've never actually seen a real one!

I honestly think without the local NAS, pre-school and now school (plus lurking on the SN boards of MN) then I think I would have been way out of my depth and quite unable to cope.

We are 7 weeks post ASD dx so it's still very new and weird for us.

I have and still are going through many different emotions- glad to have a diagnosis but saddened by the sense of that finality, worried about what to do next and longer term.

I have found dealing with other people's reactions the hardest part. My in laws think the diagnosis isn't accurate and he's just being a boy. Friends have said 'well that's what my child does, that's normal isn't it?' DH and I are still coming to terms with it all and realising the enormity of it, and I can count on 1 hand the people that have asked how we are about it.

I would appreciate help on finding local support group to deal with my feelings. I don't find it easy to ask for support so it will be a big step for me.