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I am fuming

25 replies

bullet123 · 19/11/2008 21:38

Copied and pasted from another site because I wanted to get perspectives (and sympathy ) on here as well.
So, it's the review meeting for Ds1 today. Blah blah blah and by the way, we're discharging him from direct monitoring for his speech and language as we feel he doesn't need it anymore because his understanding and speech have come on so well.
WHAT THE FUCK?! .
This is a lad who will be five and a half in January and who still can not:

1: Tell us if he's scared or worried about something. Or tell us if he's got a headache or a sore throat or a stomach ache. God forbid he gets appendicitis or something as he couldn't tell us he had a sore tunmmy then for example.
2: Explain why he's upset at something happening, even with us prompting and helping him.
3: Understand even slightly the consequences of something or the reasons why something is happening/done. Eg you can say "no" if he's being naughty, but you can't sit down with him afterwards and talk about why what he was doing was naughty.
4: Understand without lots of help and repetitions even very simple story lines.
5: Be able to tell us how he feels/thinks about someone or something unless you prompt him by asking if he's happy or sad and then he can't explain why. He might come home from school and say "I run with W", which is great, but he'll never say if he's angry or upset with W, or ask why to something. Forget about daft questions or assumptions on marriage or where babies come from.
6: Know what his address is.
7: Understand, if told, what to do if he gets lost.
8: Be able to have a simple conversation without things being worded the right way and lots of simple explanations.
Basically if you look at the way the children talk on the toddler thread, with the exception that those toddlers can talk a little bit about how they feel about something which Ds1 can't do, well, that toddler level, bar a few more ands which extend the sentences is about where Ds1 is. At five and a half. Oh, but he can look at a picture and say what's happening and he can count and memorise words. I had to question his long term goals as they said they would get him to read the Reception words. I said he could learn that easily, whether he could understand them is a different matter.
I feel like crying. He is nowhere near the level of even children much younger than him in how he's able to talk to people and explain things and understand things. He still has a lot of echolalia for a start. I said I realised there are children with very significant SALT difficulties in the school and I'm not demanding intensive therapy, but just to keep him being monitored and helped.

OP posts:
madmouse · 19/11/2008 21:56

So in short you feel they are abandoning him
And it sounds like they are
The things you raise seem pretty important to me.
Is there a sympathetic doctor or other professional to fight your corner?
If not get specialist legal advice.

sorry you are going through this, sounds like you worry enough without them leaving you up the creek

bullet123 · 19/11/2008 22:01

He will continue to be able to join in with group SALT sessions, which I know I should be grateful for, but it upsets me that they have given the impression he is doing fine.

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madmouse · 19/11/2008 22:13

them saying he is doing fine basically means they are not taking you seriously. Serious error no1 for everyone working with children.

Nathan's consultant always asks what we have seen/noticed and what we think about his progress before she so much as looks at him.

It's not that hard is it?

jimjamshaslefttheyurt · 19/11/2008 22:21

SALT do everything they can to get rid of your child.

Ask them if they're working within the Malcomess Care Aims model and if so suggest that they're leaving him at risk and not fulfilling their duty by discharging them. Say that if therapy has helped then this suggests more would help more (part of Care Aims is that you only intervene if you can guarantee it will help- which screws a lot of autistic kids).

bullet123 · 19/11/2008 22:28

Thank you. They haven't even said where he is on centile charts etc. He's like TotalChaos's ds in that if he sees a picture he does well, but without visual clues (and even then a lot of the time) he's stumped. Eg I could take him into a shop, point out the shopkeeper and say "go to the shopkeeper" and he'd do so. If we were in town and I said "if you are lost go into a shop and ask the shopkeeper for help" there is absolutely no way he would be able to link what I said then with actually doing it.

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TotalChaos · 19/11/2008 23:04

glad you posted on here too, as well as sympathy and righteous fury which I can supply in abundance, there will be ladies on here who are good at the fighting/complaining side of things.

Just to add - as the ladies on here may not be aware - that Bullet's DS is a a special school - so this is really taking the piss quite fankly.

jimjamshaslefttheyurt · 19/11/2008 23:29

Are there SALTs at school or do you have to try and claw SALT from the NHS?

TotalChaos · 19/11/2008 23:32

It's via the school.

jimjamshaslefttheyurt · 19/11/2008 23:35

School is refusing to give SALT

Ds1 doesn't get it every term but it's onsite and there is constant access to a SALTS advice.

bullet123 · 20/11/2008 00:48

To be fair they have said he will have group SALT sessions (no mention of how often). but they feel he doesn't need more than that. Which I disagree with, to be frank. Language is about more than being able to say what colour hat the dog is wearing in the picture, or whether the armadillo is bigger than the porcupine in the picture. It's about being able to place things in context, to have a conversation with people, responding to what they are saying. It's about being able to talk about things that can't be visualised easily,eg a headache or being frightened. Every single day he needs support and help because of his language difficulties, it impacts upon everything he does.

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amber32002 · 20/11/2008 07:10

bullett123, just wanted to add my support for you and your son. Goodness me...as if life doesn't make it hard enough for us without taking away vital support and pretending a child is 'doing really well' when they're at risk from lack of ability to use language appropriately...

The Every Child Matters stuff that is supposed to guide all children's services and schools has five things all children are supposed to achieve:

Staying Safe
Being Healthy
Enjoying and Achieving
Making a Contribution
Achieving Economic Well-being.

I'd be tempted to draft out something that shows how his current language difficulties affect each of these areas. That should tick a few boxes for them....

Tclanger · 20/11/2008 09:02

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Message withdrawn at poster's request.

bullet123 · 20/11/2008 10:03

Sort of TClanger. There was a letter from the SALT explaining that he could understand three word level instructions and some four word level instructions, that he still struggled with prepositions and pronouns, that hopefully once his confidence grew (silly me, he just needs a bit of confidence ) he would be able to talk more. Nothing about where on the centile charts he was, nothing about where he stood in terms of pragmatics, receptive, expressive, social use of language, none of that.

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Romy7 · 20/11/2008 10:09

what is on his statement?

can you pay for private slt assessment and challenge the LEA?

i assume he is not at the special school because of communication difficulties, or presumably they would be about to transfer him to mainstream?

any way you would consider mainstream with 1-1 support? what would the LEA say if you decided the school was not meeting his needs?

TotalChaos · 20/11/2008 10:10

FGS. There were children at DS's summer SALT group at 3 word instruction level who were going to go on to a language unit (so going to be getting quite a lot of speech therapy). That letter is just appalling. Sorry I don't feel my fury and ranting is really going to get you very far .

bullet123 · 20/11/2008 10:25

His communication and understanding difficulties are one of the main reasons he's at the school Romy. There is no way I will agree to him going into mainstream but fortunately the teacher didn't even hint at it. One of the reasons I'm not more angry than I am is because the overall structure of the school is very good for helping Ds1 learn and settle. Still doesn't mean I'm happy when the SALT and school pulls stunts like this though .
I would not consider mainstream, even with 1-1 support, not until his understanding improves and his ability to be able to tell me things and explain things improves.

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TotalChaos · 20/11/2008 10:26

romy has a good point - check the wording on his statement re:SALT - it might mean they can't pull a stunt like this.

Romy7 · 20/11/2008 10:30

that's what i can't work out though - if they are saying he doesn't need that level of slt support then what is their argument for that setting?
(i'm not criticising btw - i was just curious what would happen as a 'what if' - if the LEA was arguing that he needed specialist setting for his comms and understanding but slt doesn't seem to agree?!) ie if you'd rung up and said 'oh, slt seem to think he's fine, so i was wondering about ms, what support would he need?' just that a ms school might be less prepared to take slt word for it when they are trying to integrate him with ms peers...
not suggesting you should lol, just curious what the lea response would be!

Hassled · 20/11/2008 10:32

Yes, check the Statement wording very very carefully. Children's Services get very twitchy indeed if you ever suggest that they are not fulfilling Statement requirements, IME. What the school is suggesting sounds outrageous and it would be completely reasonable if you insisted on a second opinion, which should be from outside the school to be impartial.

bullet123 · 20/11/2008 11:01

I have no idea Romy. I'm not prepared to ring up and ask though in case they say "hmmm, let's look into it" and start pushing for him to go into mainstream. He needs a fair amount of routines in his day to help him cope and understand, so that's another factor.
I will be having a meeting and I'm going to ask them to explain exactly how the SALT arrived at this conclusion. I don't think they are saying he needs no help, because otherwise he'd be exempt from the group sessions, but those aren't enough. His class spent weeks learning about Harvest, using lots of visual supports, before doing a Harvest festival. He does not understand what Harvest means and why they had the festival. Now, to my way of thinking a five year old (maybe even a four year old?) would, after learning all about it, would be able to say something like:
"The farmer sows the seeds and they grow and we get food". At least. DS1 could not do that.

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feelingbitbetter · 20/11/2008 11:09

Bloody hell . I wish I could say something to help, but I have no experience. It must be deperately frustrating for you, I just wanted you to know I'd read this and am fuming along with you x

Romy7 · 20/11/2008 11:11

hope your meeting goes ok - maybe take your statement with you and clarify the slt provision?

bullet123 · 20/11/2008 11:21

Thank you, I will be doing.

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anniejones · 20/11/2008 17:28

This all sounds bitterly familiar - first, my son's difficulties were ALMOST caught at his 2 year dev check, when the lady asked how many two word phrases he had - none, of course. We had six sessions with a SALT, who showed me some tricks to help language development (all of which I was doing anyway, really) then declared she was satisfied with his progress and DISCHARGED him. It would be a further 2 years before he would get a diagnosis of HFA - and in the same breath we were told that he would not benefit from ANY services. This when everyone already know that early diagnosis and treatment offers the best chance of progress and a normal life. It was so cynical and awful and money based - and in the balance was this child. My blood still boils but I just got on with it as you do.

PipinJo · 20/11/2008 17:52

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Message withdrawn at poster's request.

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