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

Really fed up with the bloody "help" we are getting.

10 replies

staryeyed · 28/03/2008 17:29

Apologies in advance for my poor grammar and the general long widedness of my post.

I've ranted about this before but Im really getting fed up of the help (kind of like Portage) we are getting for DS from the borough. At the beginning they gave me all the big sell tactics about how they could help me and offer all these services ST, OT ED psych music therapy etc help with choosing schools etc. What they have actually given my DS a poor standard service; The portage lady comes as she pleases it seems, constantly cancelling and moving around our appointments as if she is squeezing us in. She is not properly trained- she was teaching PECS very wrong -I don't think she has been on the course - The SALT we have seen about 4 times in 7 months has completely ignored the PECS stuff and just freaks him out by being in your face touchy feely.

When I said we were considering Treehouse (ABA school) they insisted DS was not ready but they would help me when the time comes. However when I employed an ABA team for a while they quickly changed their minds and said DS should be at nursery (They didnt want the drop out statistic I think). Now they are putting heavy pressure on me to send Ds to a school of their choice. I flatly refused one because it looked rubbish. I asked for help applying for our local primary -very good MS. They conveniently kept forgetting to help me. Deadline has gone now. We went to see 2 primaries one with an ASD unit one a specialist nursery. The ASD unit was ok but there are 6 places in the nursery and only 2 for each year in the primary. One of the nurseries was ok. Our portage worker came with us and the teacher was asking her questions rather than us I found it very offensive- I think I know my child better than someone who sees him for a few hours a week.

Anyway. Im not completely happy with either of the nursery choices. I feel completely unsupported in real terms because if I consider something that they don't like they discourage me.

They concentrate on compliance; sitting nicely, doing as you are told, anything to make sure Ds behaves himself at school and is no trouble. In terms of real progress I can say they have help with his turn taking skills and helped him learn action to nursery rhymes. They do nothing with life skills, imitation and very little pre-school skills and everything she does is on her terms so if my Ds wants to draw he has to draw just swirls. Im working hard to get him to be more creative with his drawing and she wants to stop him . I feel so warn down my it all. When she comes I spend my time wishing she would go. Im so tempted to get rid as I was about to before when we started ABA but realistically we cant afford the lengthy battle it will take to get Ds into Tree house or to fund a long term Home ABA programme.

They are creating biased results by claiming responsibility for Ds gains when in actual fact I work very hard with DS myself many more hours than they put in and his Biomed stuff has really helped as well. I feel they are very manipulative and all about their results- getting children with ASD into mainstream schools.I'm fed up of these bloody target led organisations that don't give a crap about the individual child.

And I want to burn her bloody note book because it really pisses me off when she says "oh Ive not seen him do that before" I inform her that DS has done that for ages. She then says "Well Ive not seen it" and starts writing it down in her note book arrgh.

OP posts:
staryeyed · 28/03/2008 20:39

I now this is a whingy post but ...

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hecate · 28/03/2008 20:40

I'm sorry you're feeling so frustrated. Not a whingy post at all, yuo're entitled to feel pissed off!

Davros · 28/03/2008 20:43

Hi Stary, I think you should contact Fiona at Elfrida Rathbone immediately. SHe knows these LEAs inside out and will give you top advice (free). Don't forget to ask the other Barnet parents about what is available, what is any good, what you might be able to get. The LEA will lie to you about what they will/won't do, they seriously think that we don't speak to each other and find out what they do for each of us (or not).

Davros · 28/03/2008 20:48

I sometimes wonder if it was better in the "old days" when they offered us nothing. At least they couldn't complain when we made our own arrangements.

staryeyed · 28/03/2008 20:59

Thanks Davros I wish I knew more parents in Barnet. That other lady you put me in touch with was very helpful.

While we are on the subject We are moving next month and I've been trying to look at all the different provisions in case we move out of the borough. Do you know anything about he provision in Enfield? I cant seem to find much on the internet.

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mymatemax · 28/03/2008 21:28

Stareyed Sorry they are giving you the run around, stick to your guns & push for what YOU want for your ds.

I would be wary of them concentrating on compliance & sitting still (although it is a valuable skill), they used that as the reason for NOT statementing my son at pre school - Basically they said he wasn't disruptive as he was so compliant. So issuing a statement only if the teacher needed help to control a child rather than if the child needed help to engage.
A big money saver for the LEA i'm sure.

He is now at the ms Primary of our choice with 1 to 1 & the difference is amazing.

If the portage isn't doing anything for you or your ds get rid of her & invest your time in something you feel will help.

Good luck & keep fighting.

staryeyed · 28/03/2008 21:59

Thanks all.

I wish I knew what I want though. In a perfect world I would like to get DS into Treehouse or a home ABA programme. Realistically I think the ASD unit is the best option for now but when he starts reception I have no idea.

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deeeja · 28/03/2008 22:28

Sorry you are having a hard time with your portage. I know exactly where you are coming from.
I felt getting fuilty getting rid of mine at first, but am glad I did. Things are so much better now, I can finally see the wood for the trees, and know myself what I need to do for my ds.
Mine wanted to be at every appointment with me, I put a stop to that aswell. She came with me when I went to see schools for my ds, and tried to stop me from applying for a statement. She even phoned me and accused me of not trusting her, well durr.........
It was a horrible time for me, best thing I ever did was to get rid of her.
You know what is best for your ds, think about what you want for him in school, his statement and the help he needs to make progress. Also, make sure that she does not contribute to your ds's statement. I was worried about this, so I made sure that she came very low in the pecking order of relevant evidence.
Portage is thankfully not very important in the wider scheme of things though, especially if you can find a good nursery, as their report about your child will be much more important.
HTH

deeeja · 28/03/2008 22:29

felt guilty getting rid of mine.....

staryeyed · 29/03/2008 10:51

Oh Deeja I hadn't even thought of the statement. Bloody hell if she uses her bloody note book of incorrect information we will be in trouble. On the nursery visit the lady asked her (not me) if DS has any words and she said "yes" before she could say any more I told that no he doesn't he is just about saying "Mama" and has only just started. I don't know what the hell she is on. She keeps saying stupid things such as "He has great fine motor skills." when he was actually assessed as being behind. She has no expertise in this area at all and she just spouts utter rubbish. They reminded me of the so called evidence they have been keeping which fills me with dread. The amount of times I have corrected their wrong information. They probably have him down as a perfectly functioning child who just needs a little encouragement.

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