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

oldteacher Wed 25-Apr-12 13:31:31

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.

HotheadPaisan Wed 25-Apr-12 14:44:42

Hope to make this.

flowwithit Wed 25-Apr-12 14:53:07

I'll b there too

Codandchops Wed 25-Apr-12 15:54:09

oldteacher the responses you are getting sound very familiar. It can be easier for some people to deny the diagnosis rather than accept things. I am 2 years post diagnosis with DS and maddeningly still hear the denial stuff from time to time.

If they are verbal (and in DS's case this would be VERY verbal grin) then it becomes much harder to get people to accept the very specific challenges our children face. It's frustrating.

I was numb for a good long period of time after the diagnosis whereas DS's Dad was very "great - we now have an answer".

flowwithit Wed 25-Apr-12 16:02:27

I think you have to try and be ' it's good to have an answer' on the outside even if inside you are' oh no sad '

SueCawkwell Wed 25-Apr-12 19:30:06

test

SueCawkwell Wed 25-Apr-12 19:40:03

Test

HotheadPaisan Wed 25-Apr-12 19:47:26

We are eight months post-diagnosis. There is so much information in so many different places and it took me quite a while to work it all out. The MNSN section was invaluable. Sometimes though I think things do just take time and you have to find a way to give yourself a break and accept you can't deal with all the paperwork at once.

Some kind of flow chart would have been useful or a guide to who's who - I had to ask several times what an ed psych did and how and when they would be involved and their report now forms the cornerstone of DS1's statement (and is very good), I just seemed to have a mental block on that piece of the puzzle.

Mostly I'm just glad I already knew about MN, opted in to the SN section and it all flowed from there. Services should signpost here for sure, it's 24/7 and there are archives.

Anyway, don't really have a question, we are just about sorted. Oh, actually, I do, where on earth can you find good childcare for breaks after school or at weekends? We've had some great students and workers from the short breaks team but it tends to be home-based and we're not really getting a break. It needs to be 1-2-1, no other kids. I have a couple of other leads from local student groups but just wondering what KIDS would advise.

madwomanintheattic Wed 25-Apr-12 19:48:07

Your colours aren't working, Sue...

SueCawkwell Wed 25-Apr-12 19:50:13

Hi madwoman

Not sure what that means?

RowanMumsnet (MNHQ) Wed 25-Apr-12 19:53:12

Hello everyone,

Sue will be along in ten minutes or so to start the live session; in the meantime we're going to post up some responses she's already composed to points you've been making.

RowanMumsnet (MNHQ) Wed 25-Apr-12 19:53:49

Thanks for the tip-off about the shading, madwoman - I will try to sort!

Evening all.

SueCawkwell Wed 25-Apr-12 19:58:39

Thank you all for giving me this opportunity to chat with you. I've worked for KIDS now for 19 years and had the pleasure of meeting hundreds of parents of children with disabilities and special educational needs. Josh my eldest son is 21 now and has profound and multiple disabilities and my third and youngest child Charlotte, 14, has rett syndrome.

Hopefully I'll be able to be of some help and support. In response to some of your earlier posts:

Hi Firawla

You mention advice for those still going through the assessment process - In terms of assessment for a diagnosis, what I would suggest is that you make notes of anything that you feel is relevant - so for example, particular behaviours, gross and fine motor skills, language development, concentration, sleep etc. Remember to include your child's strengths and abilities as well as areas they are struggling with. Sometimes professionals only see a snapshot of your child so it's important that you can provide information to fill in any gaps and help them gain a more accurate picture.

Also, if you can try to have the assessor see your child both at home and in a setting such as school, nursery etc. This often gives them a greater insight into the levels of support that may be needed and also gives them an opportunity to see how a child reacts socially, copes with group situations etc.

If you reference was to statutory assessment in order to gain a statement of special educational needs - I think that could very easily be a session on its own and would be happy to do that if members were interested.

SueCawkwell Wed 25-Apr-12 19:59:40

Hi Thefeministswife

I would suggest you give whoever was supposed to be organising this for you a call and tell them you're still waiting.

Have you tried the National Autistic Society? They should have details of any local NAS groups that are running in your area and also be able to give out lots of information on autism. Local parents can often offer lots of advice and info and let you know who offers the best services etc.

Hi Starshitterrorise

Often knowledge is power - you shouldn't reduce your expectations or stop asking questions. Parents and children do have rights to lead normal lives, receive appropriate education, have short breaks etc. I've found over the years many professionals are not that aware of current legislation and quoting some can move mountains...

SueCawkwell Wed 25-Apr-12 20:00:51

TheSockPuppet and all of you who mention lack of support following diagnosis:

This is very patchy across the country and an area that really does need some improving. The SEN green paper mentions early support and keyworking (any of you had this??) The Early Support trust are currently rewriting early support guidance, information and training - including training for keyworkers. The intention is to develop keyworking across the country for parents with disabled children aged 0-19 years. A keyworker can support families emotionally, help coordinate services and be the single point of contact. The work is in its early stages at the moment. Ideally every parent should be offered support both before and following diagnosis. Parents have been advocating for this to happen for some time.

I remember the time leading up to the diagnosis being the most stressful - when you know something is wrong but not sure what it is - very scary for new mums.

Contact A Family have a helpline to support parents and also you can search specific conditions, including the rare ones and they list the various support groups.

Thank you Madwoman in the attic for the lovely comment

SueCawkwell Wed 25-Apr-12 20:01:49

Hi KeemaNanand Curryon

In relation to the issues your DS is having at school - have you tried your local parent partnership service? Every local authority will have one - some are provided by the local authority itself, others are outsourced to voluntary sector organisations. The national parent partnership network (if you google) has a list of all the local contact numbers.

Also have you tried joining your local parents' forum?

Hi Notactuallyme

Pleased that school supportive. If you contact the NAS and let them know there is a local need in your area they may come and run a course.

Hi jeanjeanie

You mention your DD having a statement - have you got occupational therapy listed in the health provision section of the statement? If not it may be worth asking for this to be looked at during your next annual review. There unfortunately is a national shortage of occupational therapists, but there must be some in your area.

SueCawkwell Wed 25-Apr-12 20:02:05

HotheadPaisan

We are eight months post-diagnosis. There is so much information in so many different places and it took me quite a while to work it all out. The MNSN section was invaluable. Sometimes though I think things do just take time and you have to find a way to give yourself a break and accept you can't deal with all the paperwork at once.

Some kind of flow chart would have been useful or a guide to who's who - I had to ask several times what an ed psych did and how and when they would be involved and their report now forms the cornerstone of DS1's statement (and is very good), I just seemed to have a mental block on that piece of the puzzle.

Mostly I'm just glad I already knew about MN, opted in to the SN section and it all flowed from there. Services should signpost here for sure, it's 24/7 and there are archives.

Anyway, don't really have a question, we are just about sorted. Oh, actually, I do, where on earth can you find good childcare for breaks after school or at weekends? We've had some great students and workers from the short breaks team but it tends to be home-based and we're not really getting a break. It needs to be 1-2-1, no other kids. I have a couple of other leads from local student groups but just wondering what KIDS would advise.

Hello Hothead

There is now a short breaks duty and each local authority has to provide a range of short breaks to suit their local needs. Every LA has to produce and publicise on their website a 'short break services statement' - if you look up your own LA website and search short break services statement is should list what is available locally together with eligibility criteria.

SueCawkwell Wed 25-Apr-12 20:02:12

Hi Oldteacher

Lots of parents have similar experiences to you. It does take time for everyone in the family to come to terms with the diagnosis, which can feel hurtful to you who need all of their support yourself.

Your local parents forum is a good place to start - they are likely to have a knowledge of the range of groups in your area. Contact a Family can also help put you in touch with both impairment specific support groups and your local forum contacts.

Hope you get the support soon

It all seems a bit of a lottery whether help is available. Locally I don't have a decent NAS group or support, the waiting lists for SALT, CP, OT et al are 12 months plus.

I've been so frustrated I even wrote to my MP, who sent me some utterly unhelpful bollocks back. So where else could I go?

Hi sue - Yes I've tried my parent partnership and they were great when I got knocked back for assessment due to an out of date report, but the person covering our area is on extended leave for heath reasons and there is no one covering them, so we're back to square one. I do go to the local forum if I can arrange it through work, but everyone around here is in the same boat. No money, no staff. Our whole area, covering a city, a town and several villages has a grand total of 5 CAHMS staff and a 0.4 CP. Its bonkers.

I read all about the services that are available in my LA for children with ASD - however when I called up about the afterschool clubs and holiday clubs I was told that they were only for children who attended special schools. Is it allowed to specify like this? Should there not be opportunities for children attending M/S schools as well?

SerenityNOT Wed 25-Apr-12 20:06:02

Just looking in
I'm not sure but is KIDS about physical disabilities/sensory impairments etc, or SpLD?

SueCawkwell Wed 25-Apr-12 20:06:13

KeemaNaanAndCurryOn

It all seems a bit of a lottery whether help is available. Locally I don't have a decent NAS group or support, the waiting lists for SALT, CP, OT et al are 12 months plus.

I've been so frustrated I even wrote to my MP, who sent me some utterly unhelpful bollocks back. So where else could I go?

Hi Keema you could try writing to your local director of children's services (some have changed job titles but a letter should get to the senior person if you address it this was) your local councillor and possibly pals for health related issues. Have you tried your parents forum - they again can vary but some have influence with local commissioners and can influence service development

SueCawkwell Wed 25-Apr-12 20:08:26

Ben10NeverAgain

I read all about the services that are available in my LA for children with ASD - however when I called up about the afterschool clubs and holiday clubs I was told that they were only for children who attended special schools. Is it allowed to specify like this? Should there not be opportunities for children attending M/S schools as well?

Hello Ben10

There should be a range of short breaks - if you child would struggle to access a mainstream group due to higher support needs this should be an argument for additional help

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now