So, the fight starts I suppose.

[BigWeeHag]

SALT is on hold for "at least" 3 months due to staff shortages. Private is totally unaffordable.

No problems at Nursery (where they use visual cues, and it exceptionally well run so is never noisy - polar opposite to his last school where he spent the whole time hiding.)

Sensory issues clearer and clearer, but no OT yet, despite referral going through in January.

Referral to next level of assessment was also in January, but nothing yet (he was given a provisional DX of HFA. I do not believe he has ASD but I want the assessments ASAP!)

ALso in Jan was told to apply for DLA, but it has been refused.

I don't even know where to start, TBH.

Chase up referrals directly.

Appeal DLA decision.

Its quite overwhelming isnt it!

Have you appealed for the DLA? There's a timeline for that. Mencap had helped me fill up the form. Look them up and give them a call. But if he doesn't have a dx then may be tricky.

OT, SALT etc - ring them up and ask them to send you some leaflets of what you can do with your DS while you are waiting. Anyway they don't do much themselves - they just tell the parents and teachers what to do. Don't really live upto the 'T' in OT/SALT etc. So don't have very high hopes of what they will do. I went in thinking they have a magic wand, but sadly...

The assessments - ring them up - ask them to call you if they get a cancellation. You may get lucky.

and breath.... one step at a time.
I didn't apply for dla till about 2 years after the dx, just because I couldn't get round to it... Life goes on.

Don't take on everything at once. Prioritise your battles. Write everything down.

hI. Its all really frustrating isnt it? The SN world-or the pathways on it, are SLOW and arduos,(sp).
The therapies that you are waiting for, all have long waiting lists. When my Ds first neede OT, the waiting list was approx a year-I complained, and eventually got an urgent appoint-for 8months!
The assessment for ASD is also usually very long. But, you can chase things up-see where you are on the waiting lists. Perhaps write to the Head of the Primary Care Trust and complain-that may speed things up a little.I know some people dont like to complain, but sometimes its the only way to be heard.
Definitely appeal the DLA-what grounds was it refused on?
You DONT need a dx to get DLA. Its not what you have, but rather HOW the difficulties affect and impact on your ds daily life. Fill in the form as if it was a really bad day. If you can, send in reports that back you up. Ask whoever gave the provisional dx of HFA to put something in writing-what your ds difficulties are,if he has additional needs at school,how his emotional development is compared to his peers etc.
Keep plugging on, you will get there in the end.

The thing with the SALT is that he has been having it since October, but his SALT has gone on ML. She was to chase up some stuff for us (symbols etc) but has written to say that the early intervention team will not touch him without a DX. Because she is off, he has effectively dropped to the bottom of the list again, and although his speech has improved a lot, he still needs input from a professional - not just my opinion, but SALT's too, but there isn't space! Nightmare.

The DLA is I think because he is under 5 - because he is mostly PT in the day (out of nappies since 4.2, although still soils at night), and although I have to get up with him at night, because he is under 5 that is OK? Possibly. It just says that he would have to need a lot more looking after than a child of the same age.

I actually want ASD ruled out, and a definite DX of Sensory Processing Disorder, but I know in this country we are not likely to get that as SPD is considered co-morbid with ASD AFAIK.

Thanks for all your replies. xx

Well, that was fun. DLA was refused on the grounds that he uses the toilet at nursery, it seems.

Excellent. Always nice to have a phone call with someone who thinks you are a liar. Anyway, going to submit hospital reports and some SALT reports too, see if that helps.

OT is going to be at least a month!

SALT, there is exactly nothing I can do but complain, and how that will help I'm not sure.

The ASD assessment unit is closed again today.

Basically, I fail at getting stuff sorted!

Bigwee, it is my understanding that SPD is not a 'stand alone' diagnosis in this Country (it is in US).

My ds was 'diagnosed' with Sensory Modulation Disorder a few years back and most of his difficulties are sensory related, he also has speech delay.

In my opinion a label is only as good as the help they will receive because of it.

Sensory Modulation Disorder = no help.

ASD = more help.

Agree with claw. Find out what help your ds needs and then get a dx consistent with it. A dx is only as useful as the help it brings. Sod accuracy. The process is hardly standardised anyway.

DX can be removed later, and actually there are benefits of having it changed on a regular basis anyway (Every time it happens the statement is up again for negotiation, which is very useful indeed).

DLA claims seem to pretty much always be refused, regardless of how clear cut the case is. I don't know if that is because the DWP staff aren't trained properly or if it is based on the hope that most people won't appeal. So do appeal. You have to ask for an appeal within a month, but if you don't have time to make much of a case by then (and it sound like you have your hands full), you can just write something vague and make more of a case later.

The charity I work for produces a guide to DLA appeals - you might find it helpful
DLA appeals guide

Cerebra have a speech therapy voucher scheme you may be eligible for

Thanks guys - Eeyore, that's a great link, brilliant site! Will be phoning them for sure. I suppose the sticking point is getting a DX at all, having already waited 4 months and not even a "you are on the waiting list and will be seen in x amount of time" letter. It is 3 years since his first SALT referral, things don't half move slowly!