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Here are some suggested organisations that offer expert advice on special needs.

Original poster

so you wait 9 months for an OT appointment...

57 replies

mummysaurus · 29/10/2009 13:44

and when you finally get your assessment the OT tells you brightly that your dc is behind and does need help and she'll send some photocopies of exercises for you to do with your dc. And that's it.

So obviously my local health authority is placing great faith in us parents. The same OT told me that she'd trained for 4 years so how can we be expected to do what she can do with the help of a piece of paper?

I said to her that in theory I could probably do dental work on my kids or give them an eye test and make some glasses with aid of google and a few rudimentary tools but that nobody would think that appropriate or adequate.

Also it seems her ideas centre round playing outside, painting, cooking etc. He does loads of this anyway with me and at nursery and it would be hard for me to do more than i do as i have a v demanding 1 year old as well.

we are lucky to be able to afford for him to go once a fortnight to a v good private 0T but at 60 quid an hour its not cheap.

She did sort of agree it was rubbish but there is no actual treatment for anyone at the moment and is going to give me some info on how to complain.

ok rant over - thanks for reading

OP posts:
claw3 · 29/10/2009 13:54

Waited 10 months for my initial OT appointment in 2008. Have now moved Boroughs and will have to start all over again!

Seems all they can do is provide me with a sensory diet to do at home, which im still waiting for!

Original poster
mummysaurus · 29/10/2009 13:57

It makes you wonder why they even bother employing OT's in the first place - they should just give us a booklet. They could call it "OT for dummies"

OP posts:
BobbingForPeachys · 29/10/2009 14:08

Ours did very little asw well, just signed off on him (just as he gets more sensory probklems) with a note about how great we were to work with

huh? you phoned twice and visited once. Everything we did wegotfrom bibic

And as BIBIC now costs apparently £50, I would suggest that to the rest of you

claw3 · 29/10/2009 14:17

Hi BFP, we have our bibic assessment on the 3/4 December, so many have recommended it.

ouryve · 29/10/2009 14:24

Ugh. It seems to be universal :/

BobbingForPeachys · 29/10/2009 14:26

Ah Claw thats the fifth anniversary of our first trip (not a date freak, we were there for ds1's fifth birthday LOL)

claw3 · 29/10/2009 14:29

BFP - Did you find it useful, any improvements since your visit?

claw3 · 29/10/2009 14:31

Mummysarus - I am fast realising, there is no treatment available, its all DIY!

Original poster
mummysaurus · 29/10/2009 14:35

But what's annoying is that when i asked the paed what he thought was wrong with ds he said global delay but we'd need to wait for the ot to get a better idea. now we have finally seen the ot she said she isn't going to make a diagnosis as this would be something done in conjunction with other professionals.

we has seen the developmental paed, a speech therapist, an early years learning coordinator, an ed psych, the ot, an audiologist. Who else is there?

He's at a S&L nursery unit and has his review in a couple of week so maybe they'll know more.

OP posts:
claw3 · 29/10/2009 14:52

Same here Mummysaurus, we have seen Paed, Dietitian, SALT, OT, audiologists, eye specialist, TAMHS. We are awaiting the referrals to CAMHS, Incontinence service, sleep clinic, feeding clinic.

We seem to have a big circle of appointments and referrals, but no actually action.

I was told once, they dont like to make a dx too soon, just in case they mis dx and they grow out of it!

BobbingForPeachys · 29/10/2009 14:56

Depends on what the dx is- certainly with ASDs there is evidence toshow earlier inyervention by far outweighs the risk of incorrect dx. Its not as if we'retlaking surgery or meds, after all.SLT is good, OT is problem focussed- what's to fear?

Usually at the p[oint you guys seem to beat, I would expect a lead professional to call amulti disciplinary meet, wherec potential dx'sare discussed and an actioon plan devised. This is what OT means about in conjunction with others but someone needs to take the reins and call it.

BobbingForPeachys · 29/10/2009 14:57

Claw- with DS1 we ahd to pull him as he satrted threatening the therapist (albeit via us, not directly).... with ds3 I would credit them with the fact he can talk after they taught us to use PECs so yes, a big difference.

sweetgrapes · 29/10/2009 15:06

Ah! But at least you got some exercises to do with your ds. My dd got an assessment and we were told that 'yes, she has problems -BUT the problems are inline with her overall development' so she was discharged.

and yes, it is all DIY. They are supervisors and we(parents) are the therapists! (SALT, OT, PT....they are all the same.) Can't blame them really as they have a huge caseload and can't really work the way they are supposed to.

For the diagnosis, they do it all together - at least 3 different professionals in the same room at the same time (multi disciplinary meet). You can call the paed and ask her to refer for this. Or you can go private.

claw3 · 29/10/2009 15:17

BFP - I was also told that early intervention is better. It seems that all the 'intervention' entails is giving you strategies on how to cope with behaviour and no support! Thank God for MN.

Glad they were able to give you some practical help, i have high hopes for my visit

Original poster
mummysaurus · 29/10/2009 15:25

sweetgrapes - this is what i fear with ds, that they'll say well he's behind with most things so no point in giving specific help. This doesn't make sense to me surely there is evideence to show that therapy interventions bring kids on whether the delay is specific or general?

I really worry that they're going to write my son off.

OP posts:
Original poster
mummysaurus · 29/10/2009 15:28

claw3

pms with bitter l at child services crossing fingers that our kids will grow out of it! more like hoping we'll give up and stop asking for some of their limited resources.

My LA has obviously decided that is too hard to decide who should get OT so nobody will - one way of dealing with the equity issue.

OP posts:
debs40 · 29/10/2009 15:29

Yeah, me too claw3!

StarlightMcKenzie · 29/10/2009 17:19

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sweetgrapes · 29/10/2009 18:01

When Dd was seen by a paed for the first time I was told by the health visitor that she will refer Dd for salt, ot and pt as well as a few more names which I have since forgotten.
I was working fulltime at the time and was told that it would be difficult managing my job and the professionals as they would be all in and out of my house all the time!

I did subsequently resign and stay home and this was at the back of my mind that I would be needed. Imagine my thoughts when I got the letters saying there is a waiting list for 9(OT,PT) - 16(SALT) months!! And then of course when they did see dd all they had was a list of things that I could do. By that time I had already got a million such lists from the internet.

And yes, I am my Dd's therapist. And I know more than any SALT,OT or PT does. They may know more per se but I specialise in my daughter and unless they are prepared to give her time(which they are not), their reports are mostly superficial.

sweetgrapes · 29/10/2009 18:05

Actually, I later came to know that if I had asked for a booklet they would have sent that material out immediately - instead of waiting for 9 months to get it. Why not ring them up and ask if they have anything for you while you are waiting for the appointment. (Of course, with the disclaimer that it may not all be applicable to your child)

BobbingForPeachys · 29/10/2009 18:28

Yeplike tsarlight and yourselfmummy we also haev a1 year old (well 18 months), and it does add an extra challenge to 1-1. OTOH we have seen ds3 and ds1 (both ASD) develop far more empathy and kindness with ds4 than through any other intervention so it is swings and roundabouts IMO.

DS2 (NT,possible ADD and dyspraxia) gets very jealous though if we do anything with any of them-there aretimes when he can be the most demanding of the bunch throwing tantrums, though he has limits that ds1 does not IYSWIM. Sometimes I feel like a juggler who keeps dropping the balls.

StarlightMcKenzie · 29/10/2009 18:45

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BriocheDoree · 29/10/2009 19:06

Sometimes think the arrival of DS is the best thing that ever happened to DD. He understands her far better than most children, and adores her because he doesn't know any different.
Funnily enough Peachy, I have just sent of a BIBIC enquiry form. DD's sensory probs are getting more noticeable (she's always draping herself across the furniture, lying down on the floor...) and as OT basically doesn't exist here am hoping to get some advice on what to do to help her. I'm sure that it can't be helping her attention probs at school but no-one else seems to care!

BobbingForPeachys · 29/10/2009 19:10

I think sensory things are one of their strong suits with ASD, so you should get decent advice there.

yomellamoHelly · 29/10/2009 19:52

Pretty much the same here. In the interim period - if you're "lucky" you get a place on a 6 week group after 6 months or so and get a generic set of photocopies meted out each week. (Group massively varied so barely any use either.) Then after 18 months (if you're still on the list - we switched from NHS to LEA) you get photocopies of more specific exercises directly from the OT (but they barely have any time to assess your dc so some of them may well be wide of the mark as we discovered). You are then "monitored" "as necessary" - this consists of letters/emails/telecons to hear how you are getting on.
Like you we've gone down the private route and the difference is just gob-smacking.
LEA OT has (privately) agreed that in the ideal world ds2 would be getting what we are having to pay for from her.