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SN children

Portage problems!

13 replies

deeeja · 03/02/2008 21:42

Hi, my ds is 35 months old, and has asd. He has a portage lady that comes around once a week for 1 -2 hours a week to see him and do various activities with him. I know I am lucky to have portage, I understand there is a waiting list, and not all areas have such good access to portage.
However, lately I have become very dissatisfied with her, and dwhen I try to talk to her about my concerns, she just dismisses me. This adds to my general frustration with her, and with my local LEA.
She knows my ds has asd, but she doesn't work with him as she should do with a child with asd. For example, when he gets tired of the interaction she expects (after around 10 minutes), and she is very intense, she keeps pushing him, and he starts stimming and lying around on the floor. HE obviously doesn't understand what she says, yet she claims he does, she said he was 'lazy' last time, .
I complained about her, and now she does seem to have changed tact, and has agreed to use pecs in combination with the SALT, but she is doing this grudgingly, and keeps on reminding me about this,e.g 'since YOU want to use pecs, I suppose we(her and SALT) could start him off , but only because YOU want to', etc. She does everything so grudgingly, and it just adds to my list of things to deal with.
The team leader for portage in my area, is not great when I complain, and keeps on dropping hints of how her 'loyalty' lies with her 'team'. I think the 'team' at the cdc have a vendetta against me since I complained about a health visitor not long ago.
What worries me the most is that her report will be presented for the statement, and she claims he can understand everything that is said to him.
I have lately come to the realisation that we will have to go for a private assessment of his needs, I don't want to have to go down that road, but I think if I don't my ds will never get what he needs.
Portage lady has no idea about this, I just hope she doesn't read mumsnet, I want to keep it a secret from LEA, till just the right moment, iykwim.
Wow, if you read that ramble, then thanks for that!
I don't really know what my point is, or even if asking for advice, but it is so FRUSTRATING!

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daisy5678 · 03/02/2008 21:48

I would try to talk to her first. Maybe write down your concerns, perhaps even meet with her boss too.

I have had similar situation recently and found that the meeting that I'd dreaded was actually really successful.

You could start it from the point of view of the 'lazy' comment. Phrase it as though you're helping her insight - if she thinks he can understand but he can't, she's not working appropriately with him and SHOULD be told!

You could also explain why you want PECS.

HTH - sorry if the above has already been done!

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TotalChaos · 03/02/2008 21:53

how very frustrating. do you have any faith in your SALT - as hopefully portage people would listen to SALT re: how much your DS understands.

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deeeja · 03/02/2008 22:07

No, actually I don't have much faith in the SALT either, expecially since she thinks echolalia is communication. Also, even thouhg ds is 35 month old, they assess him as though he is 2 years old, and this blurrs everything. So even though he functions at around 9 months, they will say he is not that far behind since he is 2 years old. So now I say his age in months, so that I can say his communication skills are delayed by 26 months. That quantifies things alot better. This is the arguement that got them to begrudgingly agree to start pecs with him.
Truthfully, they probably won't do that properly either, so we will see. They are apparently going to show me how it is done, and then I can use it myself. I just hope they don't confuse my ds further.
I tried meeting with the boss, gms, and that is like taking two steps forwards, and then three steps back. They might be forthcoming with somethings, but then will be nasty about other things.
I sometimes wonder if I may have been better off never goin to the cdc in the first place, it is as if they want to control everything that happends to my ds.

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shiny1 · 03/02/2008 22:14

I hope things get better for you,my ds is on the waitung list for portage,sending you hugs xxxx

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TotalChaos · 03/02/2008 22:17

echolalia is sometimes regarded as a step towards communication - that a child sees the need to say something, but can't retrieve anything appropriate so just retrieves something they remember instead.

Unfair as it is, if you have any spare cash, it would be worth you either doing the PECs course yourself, or consulting a private SALT who is experienced in PECs/working with children with ASD. You aren't in NorthWest england are you - just that if so, I would recommend the private SALT we use with DS.

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moondog · 03/02/2008 22:21

Deeja,your concerns sound valid.
I am a salt who works (with PECS-A LOT) WITH CHILDREN LIKE YOURS.

This remark about her loyalty being with the team is very worrying too.What a load of shit.Our loyalty must always lie with the parents we are trying to help.

PECS is fantastic.Can't praise it highly enough. Ask what training both have.Unless they have (or at least one of them)been on the basic 2 day course there is no point in them even starting.

If you are not happy,put in a (calm) written letter outlining your concerns to the head of the Directorate

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yurt1 · 03/02/2008 22:57

echolalia can be communication (can be used to start an interaction by a child for example) but can also be used non-communicatively.

I found portage fairly hopeless tbh- so much depends on your individual worker. We had a difficult time starting PECS. Is there any chance that you could go on the 2 day workshop? We did that in the end and it was much more effective than banging our heads with portage/SALT (who were unable to provide a PECS trained SALT, so we had a- lovely but newly qualified- SALT using Makaton with a child with no imitation skills.

I spent a lot of the early years complaining- in the end I found- where possible it was more effective and easier on the blood pressure to buy in a service I wanted. I still campaign now when I have the energy, but not for stuff desperately need right here right now as I just found it didn't work and was wasted energy.

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needmorecoffee · 04/02/2008 08:11

Just a quick boggle here...once a week!!!! Our portage was 1 hour a month for 12 months and we missed 5 sessions cos dd was sick.
This area really is crap.

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TotalChaos · 04/02/2008 09:03

need - Liverpool doesn't appear to even have portage (though a voluntary organisation does seem to provide something similar). Found out about this via an observant friend who received a leaflet about it in her NCT info pack(!).

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deeeja · 04/02/2008 10:40

Sorry to hear about the crappy provision in your areas nmc and tc. Here though, portage seems connected to the LEA, as does SALT, in a sort of spy-ring known collectively as 'The Children's Trust'.

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needmorecoffee · 04/02/2008 12:25

I reckon we should find out the area with the best SN provision and all move there
Then we could meet up and have tea n cakes.

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TotalChaos · 04/02/2008 13:34

well we've ruled out Liverpool, Brizzle and South Wales thus far . I hope it's fairtrade herbal non-caffeinated tea and home made cakes with hand milled flour.

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mymatemax · 04/02/2008 21:11

Thats so disappointing deeja, your portage worker sounds like she is fighting against you.
I understood portage to be about working with the family & child to achieve what the parent wants.
Not just another therapist with their own agenda!
If they are not benefiting your child don't do it, invest your energy elsewhere

Suffolk ime has v good provision, except salt but that appears to be sh*t nationwide.
Come here for tea and cakes

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