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Here are some suggested organisations that offer expert advice on SN.

CDAC waiting list a year, but we won't even be put on it yet

(34 Posts)
StarlightMcKenzie Wed 27-May-09 09:56:04

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sc13 Wed 27-May-09 10:49:26

You know, Starlight, I'd contact NAS to see if there's any way of making a complaint, seeing as the paed referred him. I suspect that even if you spend a lot of money and go down the private route, if something does come up they still won't give you therapy etc. until he has an NHS assessment. The b*s

StarlightMcKenzie Wed 27-May-09 11:02:22

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magso Wed 27-May-09 12:17:54

The NAS may be able to suggest a suitable specialist - I think they have a list. It may be worth contacting PHEAT (01707 657904 parent support group in Herts for early autism intervention or something like that)! I am not a member as ds is older but they may know who would help locally.

StarlightMcKenzie Thu 28-May-09 00:10:22

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Phoenix4725 Thu 28-May-09 06:06:46

they gave me list of people in the area when i asked them on phone , was given ball park figire of around 800 pound

TotalChaos Thu 28-May-09 07:27:39

beginning the statement process is I think a good idea, as that will get him onto the LEA/ed psych radar. I wonder if any spare cash might be better put towards some therapies such as private SALT or ABA rather than towards a DX? And definitely make a complaint. Have you had a chance to speak to the paed about the way you are being pissed around (am hoping that paed might kick up a stink at his judgment being questioned in this way)

StarlightMcKenzie Thu 28-May-09 10:55:14

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magso Thu 28-May-09 11:22:19

Starlight how old is ds?
The cost of ABA intimidated me too! I have followed a homemade plan based on Floortime on an 'when I can' basis. Floortime suited us and fitted into the lack of dianosis as it is not asd specific.
Our son ( now 9 and dxed autism ADHD and m/sLD) started school without a diagnosis or a statement dispite having very little language. (He was also repeatedly turned down for asd assessment- perhaps we live in a asd black hole!) With the benefit of hindsight I think not sorting this out before he started school was a mistake(I was advised repeatedly that he did not need additional support, then turned down for statement because the school had not given support for long enough etc- - well you learn the system as you go along and he did need support).
So I agree with you and TC that asking for a statement is perhaps the place to start. And the sooner the better!

StarlightMcKenzie Thu 28-May-09 11:39:39

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sc13 Thu 28-May-09 11:42:09

Starlight, try the Winslow catalogue for 'More than words'. Our SALT said that's the cheapest place to get it.
There is a thread from last week on people interested in Floortime

StarlightMcKenzie Thu 28-May-09 11:44:50

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TotalChaos Thu 28-May-09 20:14:48

Starlight - I was only mentioning ABA as a top of my head example of an established technique for working with ASD, am very sorry indeed if I have made you feel in any way guilty. As others have said there are much cheaper things you can do. other posters with more experience of ABA can also advise as to practicalities/costs of you training to do it yourself if it's a route you are interested in.

Re:More than Words - it's £32.95 on (so that will include postage) so probably cheaper than winslow. I assume the sky high price was from amazon, their sellers do seem to take the piss name a high price for anything remotely obscure...

StarlightMcKenzie Thu 28-May-09 21:00:58

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daisy5678 Thu 28-May-09 21:11:56

Starlight, are you getting DLA? Helps with the cost of all of this extra stuff.

StarlightMcKenzie Thu 28-May-09 21:28:42

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magso Thu 28-May-09 21:31:03

Starlight I have felt the same as you and I cannot guess how different ds would be if we had had access to early diagnosis and interventions - but he has had the best of me - and so I am sure your son has and will have the best of you. I also know that somtimes I tried too hard - tried to teach concepts/skills before it was his time which did no harm to ds but was wasted effort and disheartening for me! I think the most useful thing is your own instincts for your child and the fighting spirit of advocacy all parents cultivate.
The best money I spent (for my unique child)was for private SALT (no salt through the nhs for the preverbal here) from a salt experienced with children with asd/ld. She taught me how to build on language - and set me up.
I will say do not rush and try not to feel overwhelmed! Pace yourself and enjoy your son.

magso Thu 28-May-09 21:43:00

Ps If the help is from someone experienced in filling in DLA forms yes wait for her help - it is important it is filled in correctly without understating any time! They may argue all 2 year olds need lots of help and time but someone experienced with these forms will be able to prize out the extras you do. But look at it and try to collect the data, (eg how often do you get up in the night/ help with x or y and for how many minutes) so that you can send it off straight away.

TotalChaos Thu 28-May-09 21:50:33

agree with magso - as if it's someone that really knows what they are doing then that will be v. helpful in terms of giving it a chance of going through quickly without having to appeal etc. also agree with magso's post about interventions etc.

the one thing I did pay for was private SALT, the assessment/report/plan of work was £150, then had about 4 or 5 follow ups at £50 pounds per time, so over the course of about 15 months that would have been about £400. private SALT was excellent, as she was very experienced with kids with ASD (DS supposedly isn't on the spectrum, but IMO has ASD type language problems).

StarlightMcKenzie Thu 28-May-09 21:58:09

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StarlightMcKenzie Thu 28-May-09 22:04:09

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daisy5678 Thu 28-May-09 23:52:00

The Cerebra guide is good and worth a google for DLA stuff. But you just have to be honest and keep repeating why the 'issues' ds have make him harder work than kids his age without the 'issues' (sorry for inverted commas, but I hate the word 'issues'...can't think of another one though!)

FWIW, I wouldn't go private, as it probably won't give you access to any of the services you want - certainly doesn't here unless it's NHS dx. I would spend the money on OT or SALT or whatever seems useful. Do you have an ASD team in your area? They won't take you on without a dx BUT should be able to advise you on where to put your money into, if anything. The ASD specialist SALT sounds like a great plan.

I always wonder 'what if?' I'd known sooner/ been more patient/ pushed for a dx instead of saying 'yeah, but he's a boy and boys are hyper' hmm but I don't think you're picking things up late at all. And you do what you can do with what you have.

But do do do apply for a Statement. They're often a bugger to get, and take a long time in many cases, but with help from MN, you'll get there in the end smile

magso Fri 29-May-09 11:42:22

Our SALT costs were very similar to TCs also spread over 18 months or so (so a bill every couple of months). It did not affect our eventual access to NHS SALT which was ( frankly) not adiquate for ds untill he transferred to a sn school.
I too have heard that a private Dx of ASD is not always respected!

saintlydamemrsturnip Fri 29-May-09 13:30:47

There's a very good Floortime Consultant in Wales. She is pretty cheap (esp compared to ABA- she does home visits all over the place- travelled to us in Devon). She would get you going and she does video stuff too. Sian Nash here.

Financially we are the same as you. We could never really afford ABA, although we did find a very experienced tutor and ran a programme ourselves with her. later we used direct payments to pay tutors and paid for distance consultancy from Growing Minds.

saintlydamemrsturnip Fri 29-May-09 13:31:19

oh should add the ABA was only ever very part time.

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