Chocolate teapot OT - Ranty McRant.

[BigWeeHag]

We have been waiting for this OT appt since first verbal DX in January. So you can imagine my surprise when I was greeted with "I'm not really sure why you were referred to me, he (DS1 ) has sensory issues and I don't have the training for that. "

The OT who does have the training (and there is only one???) is off sick. Fab. Where does that leave my family?

Basically, she wants to recommend that he has treatment when there is an appropriate OT available, and that the teacher at school when he starts should be told not to rush him, and that he won't do things well if he isn't interested. Oh, and she's never heard of ADOS, and if she'd been DXing, she would have said ADD. Brilliant.

/endrant

The OT who is trained in sensory referred him to herself, but then went off sick, which of course can't be helped, but I find it very hard to believe she is the only person with training in this!

How old is your son? my ds has sensory processing disorder BUT it took several OT's before it was actually diagnosed at 14 because none of them knew what was wrong, everything i'd been doing like trying to make him wear clothing and taking the blankets off him was the opposite of what I should of been doing the difference in him since I knew how to deal with him is amazing.

He's nearly 5. I am lucky in that I had some training in sensory issues, but more towards the PMLD end of things, however that has helped me to figure some things out - sleeping bag instead of duvet for example. The optician was also really helpful and prescribed dark glasses, the simple act of having a prescription means that nursery/ nosey people don't complain about indoor sunnies! The OT thing is similar - I know what he needs to some extent (wobble cushion, quiet space, extra time, limited visual stimulus etc) but it helps to have professional input. Just so the teacher doesn't think I'm bonkers, like.

Bigweehag, sensory trained OT's are like gold dust.

In my old borough, there were 2 working for the same dept. In my new borough we dont even have the service.

OT's also seem to be off sick quite a bit too. I made an official complaint about old OT in August 2009 and she has been off sick since. Which is very convenient, they cant fully answer my complaint or write a report etc.

The service Sensory OT's could provide is very valuable, but ive always found them to be a big disappointment. Full of hot air.

Bigweehag - in our case OT has 'backed off' after supplying list of suggestions as DS not compliant with anything much at the moment although assures me she will come on board again when he is better able to cope (chicken and egg methinks!). If you don't mind can I just ask about the sleepingbag/duvet thing - I know DS (8) loves to be wrapped in blanket etc. but does a sleeping bag help with actually going to sleep and seeing bed as a 'safe' place. Will try anything now - I know others have it much worse but fed up of my evening never starting until after 11, esp as he is at home all day at the moment!

Ampersand44, my boys have both slept better with sleepingbags. DS1, in particular, needed swaddling forever and a grobag got us out of that. He wore one for hte last time, last year, when he was 5, but DS2 is using his hand-me-downs. Duvets and blankets are draughty and slip about, but a sleeping bag is a nice cosy cocoon which can be put on before getting into bed to help ease the transition into sleepy time.

BigWeeHag - we've had to figure out a lot of stuff for ourselves. Thank goodness for Amazon. All the same, the school actually asked for DS1 to be re-referred after OT signed him off, having paid little attention to his sensory issues because we cope pretty well with them at home. Since being signed off, his sensory difficulties at school have become more severe. The re-referral was made in January and we may see them by, oooh, about August. Probably later, since it's the school holidays.

Ampersand, it was a total co-incidence, he had peed on the duvet so it was in the wash, so got an old sleeping bag out - instead of battling and dropping off about midnight and getting up 3 times, he is going down by 9, sleeping mostly through only waking once most nights. He is also trying to be dry.

We made the change at the same time as the tinted glasses came in though, so it could be that/ a combination.

Ours is just a snugglesac, must get another one for wash days actually!

I am digging out our old snugglesac tonight! Thanks for the suggestion

I was told there was no provision in my area for a sensory trained OT because "The national autistic society don't think its a worthwhile therapy" Ever heard such crappy lies? (In this area, your child will not even be seen by an OT if they are being assessed for ASD.

I then changed my approach and said DS needed help with functional stuff. Got one eventually but not through the NHS

WFG might be worth writing (if of course you are not all written out with everything else!) direct to the PCT commissioners to clarify that - ask if OT are commissioned to see children with ASD - and if not why not. They may or may not be aware this is happening. (Made a difference with something similar where we live )

Yep i will second that, write to the PCT and ask why this service is not available and what alternatives it offers.

If you can prove your ds has a need for OT, they HAVE to provide the service. It is standard practise for the borough in which you live, to pay a borough where you dont live who do have the service. Although they do not make this common knowledge.

Am in Scotland and I already asked to access the neighbouring county's OT services which was turned down.
Off to google PCT commissioners as not sure where to find them.
I should def take it further and I feel sufficiently fired up today so thank you!!

Waiting, did the PCT turn down your request to access OT services?

yes
I asked the Paediatrician for a referral and was told they dont see kids who are being assessed for ASD. I wrote to the Head of OT anyway and was told much the same. I took it up with the Head of Complaints who was the one telling me lies. I then found an OT from a non NHS source so gave up on the NHS.

Waiting, Paeds, OT's etc are full of shit, you have to go above them. OT tried to transfer ds's care to a service she knew didnt exist just to discharge from their service.

When i told her that new borough didnt have the service (as if she didnt already know) she told me i should make an official complaint and try to get the service in new borough.

I made an official complaint to PCT of new borough. Luckily my Paed worked for the new borough and had no qualms about slagging off previous borough and OT. The response to my complaint was that service was not available in new borough, but that they would be happy to fund the service in old borough.

You could make an official complaint to your PCT explaining and backed up with evidence that your ds needs sensory trained OT input and ask them to fund it.

Probably water under the bridge now, as you have received your OT input, but handy to know for future reference

Im not sure if it may work differently in Scotland, but my understanding is that if there is a NEED the PCT have to meet it or offer an alternative.

Thanks Claw
I will def follow it up. You know how it is though. Sometimes their lies are so tedious you just cant be bothered to argue.
However, I have been quiet too long so time to start fighting again. Thanks for the motivation!

Waiting, i know tedious is an understatement!

Good luck.

PS you sound like you have been messed around a bit!

Dont start me off with being messed around, i will bore you to sleep in no time

Aww! I wonder if anyone has had it plain sailing?

Starlight
You and I are going to train to be OTs who only see ASD kids remember!

Seriously, I did let it slide but claw has just given me a kick up the backside and I have tracked down the appropriate body in Scotland and have emailed them asking what their complaints procedure is.
Will keep you posted.
Fuck it.
If I make some other childs life better than it will be all wortghwhile