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SN children

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

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Original poster

DS2 has his CDT review tomorrow....

16 replies

mm22bys · 10/08/2008 19:59

And I am scared, cranky, nervous.

He was last seen by them in September, where they told us he is severely developmentally delayed, and that he will be like that for good. They were very tactless and unprofessional.

They also changed our lives (obviously not for the better).

We were supposed to go back for a care plan review in March but luckily an appointment came up with GOS for that day so I very happily cancelled.

Now D-Day is almost here, and I am scared.

He has come on a lot, can cruise, crawl, so much more interested in his surroundings, but he is obvioulsy a long way from "normal".

I am so worried I am going to lose it with the dr tomorrow (we have to see the same one as last time). Most drs have been on our side, but if I never saw this one again it would be too soon.

Anyway, just wanted to rant.

OP posts:

moondog · 10/08/2008 20:04

Oh dear, sorry to hear that.
It might help to write a list of questions/points you want to raise.
Also, how about writing saying you don't want to see this paed. again.

Seuss · 10/08/2008 20:30

Aw - good luck for tommorrow. If he is tactless again perhaps you should lose it with him! I agree about writing points/questions down - it might help you feel more in control of the appointment. Just keep thinking about how much your ds has come on and don't let them get you down.

TotalChaos · 10/08/2008 20:34

sorry you are bricking it about tomorrow's appointment. Could you bin the CDT completely after tomorrow on basis you are satisfied with other doctors you have seen, or would that cause problems with local services?

Original poster

mm22bys · 10/08/2008 20:45

Thanks for your messages.

We had to fill in a form to show his progress, areas of concern, and other issues (actually his progress across the main areas takes up one typed page ). Also our Bobath therapist wrote a great summary of his progress.

I would dearly love to bin the CDT as they haven't been helpful, but actually obstructive, but don't know if we need to see them semi-regularly and keep them on-side in order to help him get a statement (he's 20 months). Anyone know?

Thx again

OP posts:

Seuss · 10/08/2008 20:53

See what you mean about needing to see them for the statement etc. Perhaps you should keep them on-side if you can although I don't know for sure...

Tclanger · 10/08/2008 21:52

This reply has been deleted

Message withdrawn at poster's request.

Arabica · 10/08/2008 22:06

Good luck for tomorrow, sounds like he has made lots of progress & hope it's recognised!
BTW in my borough they have a procedure where the child development team can notify the education department about children who are likely to need a statementwe started DD's off earlier than usual, at around 22 months, so they hadn't got around to doing it yet. You could ask if they do this where you live. And of course the more help they think your DS needs the more likely you are to get the kind of statement you'd likewhich is one way of dealing with the negativity...

siblingrivalry · 10/08/2008 22:25

Just to say 'good luck'. Maybe we can swap stories tomorrow?

Hope it goes well.

TotalChaos · 11/08/2008 09:05

ask the CDT today about statementing, to get a feel for whether they will be an enormous help or sod all help with the process.

Original poster

mm22bys · 11/08/2008 16:21

Well we are back. It got off to a bad start when they phoned at 10.30 to let me know the appointment was at 10, when the letter said 11.30! Luckily they were able to jiggle us in. We spent two hours there...

The ped was very impressed with DS's progress, and said he is a different boy to the one she saw in September. She was very supportive with regard to Bobath funding, but told us it is PCT policy not to fund oabath, but encouraged us to put our and DS's case forward to the PCT (her boss will ultimately make the decision).

We talked about education, and is going to get the ball rolling with that.

I got the impression she is fed up with lack of funding. I have said before that I thought she wasn't on our side, but we left with a very different impression.

I know we have a lot of hard-fought battles ahead of us, but it was all very encouraging, and feel like a massive weight has beeen lifted from our shoulders....

Thx for all your messages of support.

OP posts:

moondog · 11/08/2008 16:28

Oh that's great!

bubblagirl · 11/08/2008 16:32

glad all went better than you expected and his making great progress x

Seuss · 11/08/2008 16:58

Great. It must be very frustrating for doctors that know something will help but funding isn't available.

bubblagirl · 11/08/2008 17:30

i understand how frustrating it is for lack of funding my ds is missing out on lots due to lack of funding im currently praying dla comes through so we can do some things private good luck

siblingrivalry · 11/08/2008 20:20

MM2, so glad it was all more positive than you expected. Hopefully, things will start moving forward and your ds will get funding for the help he deserves.{hugs}

Arabica · 13/08/2008 23:19

Sounds like a good result!

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