Why after a dx of asd are we left to just get on with it????

[frascati]

The more I think about this the angrier I am getting.

My dd is nearly 8 and got a dx of hf asd/AS and adhd a year ago.

Ot have recommended my dd has the listening program to help with her hypersensitivity to noise, one catch I have to pay - £300!

The eskimo oil that we use is £17 a month.

Looking at diet and behavioural techniques is all down to us parents.

Now my dd has a dual dx of asd and adhd and I am off to the adhd clinic. Why can't they have similar for asd too?

We should be told how to help our kids and be given the tools to do it (whether that's practical or financial imo).

Just makes me angry that it's the "oh yes they have this and basically get on with it )

Even things like statementing and dla we have to sort it all out.

Totally agree!!! The help we need after getting our diagnosis is so much more than anything we are offered. We are left worrying how we are going to pay for things, If we are doing the right things for our children, what are we supposed to be doing that we arent. We should definitely be given guidance as standard on things like claiming DLA and Statementing because they are essential!

By the way for the listening programme there are funds that you can apply to for anything the NHS wont provide- Thecaudwelltrust is onewww.caudwellchildren.com/. I think there are others.

have you applied for DLA? There are some really good guidance sheets.

I used the guidance on here and ds got middle rate care componant even though he has no dx.

Agree, agree, agree.... What happens to kids whose parents don't have the energy or time to fight the good fight. Presumably they just end up on the scrap heap or in prison....

I had not realised this total lack of support happened everywhere!(I thought it was worse in this county than elsewhere!) My son (7.5)had the ADHD dx 2 years ago and MLD + ASD only recently. We have no local ADHD or asd clinics, but the lack of coordination and then repetition (height/ weight checked 4 times in 3 weeks, the appointments all seem to come together) adds frustration. A 'one stop' clinic with access to support services and information (like diet, advise, research reports, charitable funds, treatments etc) would be better all round! Perhaps it would be cost effective also! I didnt know Ds is/was entitled to DLA for instance - that money I didnt claim would have paid for therapies we could not fund!
I share your anger for all our DCs, and I know I could do a better job at theapeutic parenting if I was properly (or even partly) supported.

The support here is excellent at pre-school level but it disappears once your child starts school. It's something that the Paeds have done a lot of work on in trying to improve services. If it wasn't for the SN board here on MN I wouldn't have a clue about what we should do/get.

Apply for DLA! Ask your paed to fill out that part of the form that a healthcare practitioner can complete with their assessment of how her condition affects her life.

If you're rejected, APPEAL!

NO, I am NOT expatinengland. In fact, I'm going to change my name tonight because it's just too close to this other person's.

No, I never got an email .

No tbh I have applied and done everything I need to but it's annoying that no support or help is given iykiwm

se ~ thanks have copied that form and will apply!

There should be workshops/social skills/after school clubs etc laid on but they are not and it annoys and upsets me.

Oh no. I sent ages ago, before last week. About the neuro programming thing, even found a place in scotland for you to ring. I was great. Shall I send again?

Please!

Okay have done so.

Sorry, Frascati.

it is rubbish, heres your DX, there's nothing we can/will offer you now off you pop.
most of the useful stuff that i have found out about is from other parents. nobody told me i could have free nappies
i had three kids with autism all in nappies, must have saved the NHS a fortune.

oj ~ exactly things like nappies

Why does it not come automatically, just makes me so angry....

I wonder what it would take to make our lives easier, before, at diagnosis and beyond? Do you think we miss out on support because the difficulties are diagnosed beyond infancy?
Perhaps a session with a sympathetic nurse/parent supporter to tell us what is available (like dla, applying for statement, support groups, websites, continence advise and free nappies, respite care or sen play/ holiday groups, access to paid for behaviour management courses tailored for ASD/adhd. A list or booklet would be better than nothing.

Do you suppose its worth writing to MP to request it? (if we have energy/time after the marathon we all run each day with our DCs)

mags I think you are so right, ds2 automatically was allocated a paed physio/ consultant paed etc from birth because he met the correct criteria (very prem).
Friends who have had developmental concerns about their children have had to endure the frustration of waiting lists & dismissive paeds

Despite being in the system since birth anything outside of the NHS, I have still had to research & find out for myself. I didn't know about DLA until he was 3yrs, I could of claimed from 3 months.
I must admit it also took me a couple of years to loose the feeling of embaressment when asking for things (eg nappies), I guess i'm just older & wiser now.
A bit of joined up thinking & working together between, NHS, LEA, DWP wouldn't that be good.