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Bad day with professionals in Autism World

(21 Posts)
StarlightMcKenzie Tue 07-Jul-09 19:18:55

Message withdrawn

moondog Tue 07-Jul-09 19:25:57

Dearie me.
Dearie dearie dearie me.

Maybe you should.

(I can chat offline if you need an ear)

asdx2 Tue 07-Jul-09 20:25:45

A bit shocked by removing the biscuit shock at dd's intensive interaction group they were working on PECs which Lucy never got the hang of incidentally but she was given the biscuit by saying "more biscuit" regardless of it being a PECS session.
As for SALT with Jack I had fantastic SALT input from a couple attached to CDC but with Lucy I had absolute rubbish and don't feel they did anything to help at all and I relied on using what I had been taught with Jack. I'd suggest approaching Cerebra and seeing if they will fund a course of private SALT sessions.
Autism outreach I find a bit hit and miss hoping that now I've moved Lucy's school then we fall under a different area and a different person because the words chocolate and teapot are pretty appropriate for the last one.
TBH I keep all the "professionals" involved purely on the basis that their reports add weight to the statement reviews (on paper Lucy has a statement when she is high achieving and no behaviour problems and me and school can't believe we got it and want to keep it lol) but I don't rely on their advice or input I work it out for myself

TotalChaos Tue 07-Jul-09 20:39:56

dearie dearie me, they are not seeing the wood for the trees are they, can see why you are lacking confidence in SALT and the class right now.

bullet123 Tue 07-Jul-09 20:47:11

They are behaving ridiculously.

silverfrog Tue 07-Jul-09 20:48:12

oh, i have had a SALT refuse to do an activity suggested by dd1 ("I'd like to read dinosaurumpus" (and even tacked on "please" when prompted), while holding out said book) because she didn't PECS it. FFS.

Same SALT also refused dd1's suggestions of activities when SALT reduced PECS down to choice cards, because dd1 "wasn't gettign it" (dd1 was asking nicely, rooting through SALT's bag of toys, picking boxes out and saying "what's in here? let's have a look")

we moved areas to get away form that SALT (bit drastic, i know, but there was no other option in our old area - another poster is currently stuck with ehr, sadly) and of course the rest of the team that made up dd1 so-called support back then.

we only ended up with above SALT because dd1's initaill SALT blantantly lied to us - told us (when dd1 was 2.10) that she only worked with over 3s, so that was why we weren't gettig regular intervention. 4 months later (we left it a bit, so as not ot hassle her) hse sat in a meeting and told us she specialised in under 3s, so naturally wouldn't be working with dd1.

it's all a joke.

moondog Tue 07-Jul-09 20:52:34

A lot of SALTs don't understand PECS properly and unfortunately the things you describe are sadly all too common.

If a child communicates a need/want effectively by using speech, it is patently bizarre to insist on PECS usage.

TotalChaos Tue 07-Jul-09 20:56:31

my DS was OK at saying mummy, but I had to use photos of the people to get him to consistently say "daddy" and "granny".

silverfrog Tue 07-Jul-09 20:57:13

yep.

dd1 has speech issues (LOTS of echolalia, garbled grammar, etc) but readily imitates speech.

I lost count of the number of times I pointed out that if professionals spent a fraction of the time they used insisting on dd1 using PECS on modelling the correct phrase for her, she would have a lot more speech (this was in reference to dd1 being silent at pre-school in particular. she wasn't actually being silent, just very, very, quiet, and she needed soemone to notice what she was saying and pick up on it)

still have the same issues at school today, despite her being at ASD pre-school. they insist on usig PECs with her, as she is largely quiet at school (prob bored out of her mind, as whenever she does say something quietly, it is overlooked).

am all for PECS when needed (and we sue aspects of it with dd1), but honestly, their time woud eb so much better spent enabling her to use the communication she already has.

mum2fredandpudding Tue 07-Jul-09 21:12:43

oh man. what a day.
hope you were able to laugh at the abserdity.

the system needs to take a good hard look at itself. ... they should be making it easier....

StarlightMcKenzie Tue 07-Jul-09 21:31:25

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cjones2979 Tue 07-Jul-09 22:15:10

You poor poor thing, I really feel for you.

What a significant moment, when your DS asked for the biscuit all by himself, you must have been so proud, only to have it ripped away from you again by these so called "professionals" all because he didn't use PECS. How ridiculous !!

TBH I have never used PECS or Makaton with DS1 (it was actually never even suggested to me so I didn't know anything about them - and he's 5.8 now), and although his speech is delayed (roughly about 2 years behind), he's very good at asking for things, and I feel that because we have not relied on signing or pictures, it's possibly helped, so there's no way anyone should be making your DS use PECS when has already asked for something verbally. Surely PECS should only be used if they can't verbally tell you or find it difficult to tell you what they want ?!?!

That is such an achievement for your DS, be proud & don't let the b*stards get you down !! ;)

cyberseraphim Wed 08-Jul-09 12:15:16

His speech sounds fantastic . Well done. I've had this problem too. A SALT told me in tones of great excitement that PECS would help DS1 ask for grapes with a card. When I told her he could already ask for green or red grapes, she shrugged it off as one of these funny things parents say and carried on with PECS. I did not have the confidence to challenge her at the time. If I could go back in time, I would just keep pursuing the point - 'What is the function of this?What will he learn that is new?'

cyberseraphim Wed 08-Jul-09 12:18:47

I don't know as much as you about PECS but I do think it is a great system for the right child in the right circumstances and it's sad that it's getting a bad name by being used wrongly.

magso Wed 08-Jul-09 13:06:53

Well done little starlight at asking for the biscuit smile! Sorry you had such difficult day Starlight - hope today is better. I understand in a way the comment that he will do it in his own good time ( ds mixes yes/no at 9)- but it was not a helpful answer! Do you suppose she meant it was too soon to work specifically on Yes/No yet?

lingle Wed 08-Jul-09 13:46:46

<gasps and holds hand to mouth then slaps forehead at description of the professionals' behaviour>

well done on that milestone and thanks for making my SALT sound positively sensible in comparison.

they are failing to realise that you are team leader here.

StarlightMcKenzie Wed 08-Jul-09 20:47:41

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moondog Wed 08-Jul-09 21:53:01

All good cohenrent and intelligent points Star.

The point, as I have expounded so often her on MN is that the excellence(or otherwise) of a paed/SALT/Psych/OT/SENCO blah blah blah is of little relevance because

a. Everyone working to their own agenda-true multi disciplinary working is incredibly rare

b. Your child will generally end up being supported on a day to day basis by a poorly trained and poorly paid 1:1 asssistant who is either left alone to deal with some incredibly complex educational and communication issues or bombarded with 'support and advice' from the multiple professionals involved.

Doesn't take much of a brain to see that generally speaking, it's a complete non- starter.

I think the fewer people involved the better.I'd also like to see more money and training go into the 1:1 helper and as a parent that is what I have found to be the single most useful and demonstratively effective way ot work.I am not interested in wasting mine or anyone else's time in meeting after meeting.

Get on with the bloody job and I will supervise it and the way it is going. Noone eelse. I don't actually trust anyone to do or care as much as i do.

StarlightMcKenzie Thu 09-Jul-09 19:57:38

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moondog Thu 09-Jul-09 20:16:47

It's bloody hard.
Hang in there.
Discipline and an iron will and a clear vision help and you will come out of this nightmare stronger and better.

I know I did.
It changed me in a profound sense.
I am not the same person that I was.
Noone will ever fuck with me again.
Ever.

StarlightMcKenzie Tue 14-Jul-09 23:44:02

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