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Mysonben...how did it go?

(33 Posts)
debs40 Wed 21-Oct-09 21:05:16

Hi

Thinking about you guys today and wondering how it all went with BIBIC. Hope it was ok.

Barmymummy Wed 21-Oct-09 21:14:13

Yep same here. Have posted on facebook that I have been thinking of you both all day.

Really hope all went OK, x

mysonben Wed 21-Oct-09 21:47:36

Hi, thanks for thinking of us. smile

Yes , it went well, the therapist was very good, he listened, advised, picked up on a few issues that we weren't totally aware of,...

He did a sensory profile of DS and highlited that DS had fairly big difficulties with his sensory processing especially auditory, and with textures.
(DH and i thought these issues were at the bottom of the list, we were 'wrong', wrong isn't the word, not educated enough on the subject is better)

So we have to put together a sensory box for DS which should help him.

We got a lot of info re: asd, some stratgies to deal with some behaviours, how to better communicate with DS,...

Therapist did the GARS.2. and the score was well into the spectrum, with a likelyhood of autism of 95%.
So no big surprise but it was still a shock to hear it.
Will chew on that for a while and will digest it in a few days. sad

Overall it was very informative and a positive experience, therapist really knew his stuff. grin

Will have a review in 6 m, this time at Bibic not at home.

Feel free to ask questions...

Barmymummy Wed 21-Oct-09 21:51:46

Oh am so glad it was a positive experience and it was worthwhile.

So, how are you feeling? Drained I imagine. How did DS find it and what did you learn that you hadn't realised before (if thats not too personal a question for on here).

debs40 Wed 21-Oct-09 21:59:23

I'm glad it was constructive and you got some concrete feedback. That is the worst part about these things, figuring out how to deal with it all yourself without help/support.

I was reading a research paper last night (as you do grin) about the importance of sensory issues in ASD. They are largely overlooked by the diagnostic criteria and yet can cause so much distress.

Did you feel you got to know DS better as a result? Did DS surprise you with his reactions to anything?

How did they test for sensory issues?

Did the tests take long? How did you find the GARS test.

You must feel exhausted but good for you for sorting this out and taking back a bit of control!!

mysonben Wed 21-Oct-09 22:05:55

Yes my head is spinning with all that info.wink

Mainly we hadn't realised that DS had bigger issues with the sensory side of things.
Therapist also picked up that DS was slightly hypotonic (i think that's the word), his grasp is fairly weak, he slouches a lot,...
We felt DS had always fairly good eye contact with us, and hadn't noticed that he often look sideways when interacting, watching tv,...

Therapist said it is up to us and he doesn't deal with this side of things but his personal advice would be to start to apply for a statement, when i broached onto the subject as we were undecided (at least he was honest).

He also said that DS shows strong asd traits but that we may stuggle to get an exact precise dx for him, as he doesn't tick perfectly all the boxes for HFA/ AS, nor ADD/ADHD, nor dyspraxia, ... but he has a mixture of these.
He said a big percentage of children on the spectrum are like this.

debs40 Wed 21-Oct-09 22:06:13

Just looking at GARs. Is this the test that gives you an Autism Quotient? Do they transfer that into a probability of autism?

misscutandstick Wed 21-Oct-09 22:10:26

Glad it went well too. We have an assessment date booked in with them too (3rd/4th dec) - so a bit nervous, but its good to hear how useful it was.

Did you ask for the gars test in particular?

mysonben Wed 21-Oct-09 22:14:43

Debs40,

DS's attitude was fairly typical for him. grin
fisrt he hid under the table and wouldn't come out, then he observed what was going on from a distance, and became more 'sociable' with every hour.
He reacted better with therapist when he had to turn tv off then he ever did with me!!!
He loved the sensory box and the sensory programme. (he was so calm afterwards!)

GARS test took about 30 mins in total.
Sensory profile was drawn up with questions for us.

mysonben Wed 21-Oct-09 22:16:05

That's right. The cut-off (autism quotient?) is 70. DS got 124. Likelyhood 95%.

mysonben Wed 21-Oct-09 22:18:16

Misscutandstick, originally i asked for the CARS test. But when therapist phoned us , he explained that the GARS would be more appropriate for DS, and that it was generally recognised well with other professionals.
So we said ok, let's do it.

debs40 Wed 21-Oct-09 22:24:53

Mysonben - thanks for info.

Misscutandstick - we are there on 3rd and 4th December too!

mysonben Wed 21-Oct-09 22:28:07

I will add, therapist did say as it was a home visit he hadn't been able to do everything they can do at Bibic, especially regarding sensory issues.
So that next time it would be an even more complete assessment.

misscutandstick Wed 21-Oct-09 22:37:04

DEBS, oh wow! perhaps go for lunch eh??? grin

We will be there with DS5 who is 3.5y, a noisy non-verbal little dot!

debs40 Wed 21-Oct-09 22:44:47

DS 1 is there for assessment - a star wars mad nearly 7 year old. DS 2 (nearly 4 and bonkers) will be there too but not for assessment.

We must exchange emails before hand!

jasdox Wed 21-Oct-09 23:36:55

hi mysonben, was thinking of you today sounds like you had an interesting session, thanks for sharing. must have been nice to have someone that listened and took your ds concerns first rather than according to or in interest of the 'system'. I hope it gives you more confidence in yourselves to keep to your guns.

mysonben Thu 22-Oct-09 00:03:48

Yes Jasdox, it was good to have someone who is independant from statements, LEA, dx team,...
Yes the confirmation of DS 's asd issues have strenghtened our resolved to get him formally dx, even if it proves difficult, and not to be fobbed off with the word 'mild' anymore...

A score of 124 on the autism index is not that mild to be fair is it???

So will take bibic report with us at next appointment with consultant paed. when we get it...

debs40 Thu 22-Oct-09 09:35:37

That's the spirit. No, 124 isn't an indicator of mild anything and hopefully this report will make these people sit up and move the process along

lou031205 Thu 22-Oct-09 09:53:54

Glad it went well. I hope this will get a rocket up bums!

linglette Thu 22-Oct-09 13:40:04

did your DH go too msb?

mysonben Thu 22-Oct-09 13:46:05

DH was here yes, Bibic therapist came to us for a home visit.

misscutandstick Thu 22-Oct-09 13:50:18

<hyjack> debs, if you want to email me, miss cut and stick at yahoo dot co dot uk, no spaces of course!

mysonben Thu 22-Oct-09 13:59:19

DH did agree with what therapist said. (he has come a long way from his denial back before summer wink).
So DH can actually hear the "A" word without getting cross now.
It isn't that he didn't recognonize that DS had problems , he just had trouble accepting that it was asd iyswim?
But we are thinking on the same wave lenght now...but have each our own way of approaching and dealing with it. smile

claw3 Thu 22-Oct-09 14:27:33

Hi Debs, are you going to bibic on the 3/4 December? So am i! I phoned them after you suggested it.

Mysonben glad you have received some help and advice.

linglette Thu 22-Oct-09 14:38:00

sounds like you and DH are working well as a team smile.

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