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Original poster

Hi ho! Hi ho! It's off to assessment we go!

68 replies

coppertop · 06/02/2005 13:09

Tomorrow is the start of ds2's assessment week at the CDC. I've spent the last week or so writing down everything I can think of and following ds2 around with a camcorder trying to gather evidence that he isn't the little cherub that he appears to be. I've also laminated some of his artwork to take along.

Tomorrow we see the OT. On Tuesday we see the Physio, and on Wednesday (I think!) we see the SALT and Psych. The case conference is on Friday where we'll hopefully find out one way or the other - although I've heard that they may possibly want us to wait another 6 months before giving an official dx.

It's weird to think that it's almost exactly a year since ds1 was dx'ed and we were sure back then that ds2 was NT. It makes me wonder where we'll be in another year's time.

OP posts:
Socci · 06/02/2005 13:26

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MrsFROSTgetful · 06/02/2005 14:45

GOOD LUCK! I am going to buy a dictaphone this week (my DLA treat!) so i can wear it on my jeans and start recording as soon as i need to- discreetly- as on the 14th T and L have a paed appt.... and it is my intention that she TRULY gets the picture this time!

Eulalia · 06/02/2005 15:54

Oooh good luck coppertop. I am surprised though they'd make you wait that long for the dx. At our assessment they practically told us at the conference on the Friday. We got the written report within a couple of weeks.

I thought the assessment was very thorough but you are right to put in your own bits as you may find ds won't behave the same there ... kind of obvious to say that. He'll probably be exhausted too by the end and you may feel a bit flat afterwards. It's worth it though.

InternationalGirl · 06/02/2005 21:19

Thinking of you this week....

Original poster
coppertop · 06/02/2005 21:20

Hopefully they'll do as they did with ds1 and tell us there and then at the case conference.

MrsF - You'll be as bad as me trying to discreetly film ds2. Everytime he spotted the camera he stopped screaming and grinned. Then when I put the camera away he howled! I felt as though I was filming some kind of wildlife documentary in the end.

OP posts:
beccaboo · 06/02/2005 21:43

Hi Coppertop, I'll be thinking of you tomorrow - sounds like you're going to have a bit of a week of it. Been through similar here about 3 weeks ago, you really helped me out with some good advice. I remember you said that with your eldest, you never doubted the dx - do you feel the same now about ds2?

Davros · 06/02/2005 21:52

Good luck CT. Stock up on the vino.

Merlot · 06/02/2005 21:53

Hope everything goes well this week, it does sound very hectic - by the way, dont forget to whistle while you work (go to the appointments) and then you can have a nice big glass/bottle of wine to help the medicine go down in the most delightful way.....

milge · 06/02/2005 21:54

Hope it goes well for you this week.

Saker · 06/02/2005 22:38

Good luck Coppertop. I hope you get the answers and the help you need.

Blossomhill · 06/02/2005 22:40

Hope it all goes well coppertop Blossomhillxxx

JakB · 07/02/2005 07:47

Good luck Coppertop honey!

Dingle · 07/02/2005 10:59

good luck with it all CT!! It can be bad enough having 1 or 2 appointment in a week, so my thoughts will be with you, hope it all goes well!

Dingle.xx

amynnixmum · 07/02/2005 11:18

Good luck Coppertop

Original poster
coppertop · 07/02/2005 18:41

Beccaboo - Sometimes I feel really sure that ds2 is definitely on the spectrum. Then I start to wonder if it isn't just me being paranoid and looking for things. He definitely fits in with the problems with communication and imaginative play. It's the social side that makes me unsure. Sometimes he can be the most smiling, giggling sociable little boy. He's a bit of a people-magnet when we go out and always turns on the charm for the little old ladies. Then he suddenly seems to switch off. It's confusing.

Well today we saw the OT and it went really well. Ds2 was playing in the waiting room when the OT came to meet us and it took both of us calling his name and me tapping him on the shoulder before we could get his attention. He then turned on the charm, grinning cheekily at all the women in the CDC.

In the OT room he started off well playing with the toys he was given and did the puzzles fairly easily. The OT was pleased with his fine motor skills. Some workmen started drilling outside and even though it wasn't particularly loud he immediately put his hands over his ears - neatly giving a demo of his sensitive hearing. He was interacting well with the OT and I felt a bit silly explaining that although he can be sociable he can switch off quickly too. We went through a sensory questionnaire and the OT said that even without working out the proper scores she could see exactly where his sensory problems were. I found this very reassuring and my paranoid feelings wore off a bit. Meanwhile ds2 was busy with the toys an completely ignoring the pair of us in a typical autie way. Next thing I knew he had just shut down completely. He'd changed in seconds from being smiling and interactive to lying on the ground covering his face up. He was completely unresponsive. It sounds strange but it was such a relief that he'd done this at the CDC. It''s one thing to tell someone that ds2 does X,Y & Z but it's so much better when they get to see it for themselves. Phew!

Tomorrow we see the Physio.

OP posts:
tamum · 07/02/2005 18:43

Not much help, I know, but he does sound like an absolute poppet . Good luck with the rest of the appointments, coppertop.

beccaboo · 07/02/2005 21:00

Coppertop, he sounds lovely! I know what you mean, it's good that the OT saw the behaviour that's worrying you, and not just his charming side... what made him shut down, do you know?

Is he much more sociable than your ds1?

Blossomhill · 07/02/2005 21:22

We don't have a cdc where I live. Everything was so jisjointed when we were seeing the professionals with dd. Appointments all over the place and nobody communicating!

Davros · 07/02/2005 21:37

Ditto BH, no such thing in our day and it was only 7 years ago!

Blossomhill · 07/02/2005 22:04

Honestly davros it's so stressful isn't it. Taking your child from one place to another and each place you go doesn't have the notes from the last pro you visited...... Arghhhhh
Thank god I am off to Bibic as hopefully they seem to know what they are talking about.
Why doesn't everywhere in the UK have a CDC? Surely it saves money in the long run! The amount of tooing and throing (sp) that I did with dd and we are still none the wiser. Although have to say educationally this borough is fantastic!

Saker · 07/02/2005 22:33

Well we have a CDC and still nobody seems to be communicating. Finally the paed called a meeting of everyone involved three weeks ago. Only the portage worker, HV (who doesn't see ds2 much) and the preschool support worker (who has seen him once) came - the clinical pyschologist, speech therapist and occupational therapist couldn't come. So I'm not sure a CDC is necessarily the answer .

Saker · 07/02/2005 22:36

And the notes were still at the audiology clinic so the paed didn't have his reports. Luckily I had copies of all his reports which he was desperately reading for the first 10 minutes . After he said "you're more organised than I am" which is true but it shouldn't be!

ImuststopdrinkingBlossomhill · 07/02/2005 22:50

It's a bl**dy joke isn't it????

Davros · 07/02/2005 23:10

at your new name BH! I suppose it depends on how good the CDC is! I must say that all this multidisciplinary assessment before dx can actually cause a delay compared to our day when we saw the Paed and got a dx (2nd visit) and then saw the others.

Merlot · 08/02/2005 00:33

Glad that you've got one of your appointments over now Coppertop and that they saw some of the behaviour you wanted them to see.

What's a CDC by the way?