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

Original poster

BIBIC chat room

18 replies

baka · 21/04/2005 18:35

Has legal advice coming up with education lawyers- also behavioural sessions. May be useful for some but you have to register in advance.

link here

OP posts:
Jayzmummy · 21/04/2005 22:01

Last one was very useful....would suggest you all have a peep.

Merlot · 22/04/2005 09:18

Thanks. We're off to BIBIC on Tuesday evening - cant wait!

Jayzmummy · 22/04/2005 09:55

Good luck on next week Merlot....dont worry you'll be fine and will gain so much from the time spent at BIBIC.

Blossomhill · 22/04/2005 09:56

Yes good luck Merlot. If you want to e-mail me before and after please do
I will try and go into the chat room. had an invite from Bibic!!!

Jayzmummy · 22/04/2005 10:25

Thanks baka

Original poster
baka · 22/04/2005 10:30

you're welcome

OP posts:
Pages · 23/04/2005 17:08

Hello, just had a look at the link but it wasn't immediately apparent what BIBC is...can anyone tell me please?

Merlot · 23/04/2005 17:18

British Institute for Brain Injured Children, Pages.

They provide support/programmes for children with brain problems from dyslexia, asd, genetic syndromes and car/water injuries etc..

Pages · 23/04/2005 17:20

Sorry, just got onto a different link and found out what I needed to know. How long did you have to wait, Merlot, and was this just something you arranged by yourself?

Pages · 23/04/2005 17:21

PS Do you have a diagnosis yet for your DS, Merlot? What were the results of your genetics appt?

Merlot · 23/04/2005 17:25

No - still no dx

Geneticist is thinking that all efforts should be concentrated on overgrowth syndromes as ds2 is SO big for his age. Rather hoping this is the case - as there seems to be some hope that when growth rate slows down, brain connections improve etc..

Also, he is being tested for Angelman Syndrome (which is perhaps more my fear than the medics)

We are off to BIBIC on Tuesday night and I am really looking forward to it as they sound so upbeat on the phone that it will be nice to be around positive people for a while Will report back idc!

Pages · 23/04/2005 21:48

Please do report back Merlot. Can you say how long it took for an appt after you first got in touch with BIBIC, and was it something recommended by doctors or is it something you have just been pro-active about and organised yourself?

Jayzmummy · 23/04/2005 22:42

Pages BIBIC is a charity run assessment centre and parents self fund to attend a three day assessment of their childs difficulties.
I know quite a few of us here have been there and have all gained many things from our attendance.

If you contact BIBIC they will be happy to arrange a telephone assessment...takes about an hour...and then they can tell you if they think they can be of help to you. Merlot was lucky she didnt wait long because she took a cancellation...I waited 4 months for my appointment for J to be seen.

The initial telephone assessment is free of charge and the three day assessment costs £700 but they have a bursary system and their policy is to never turn away a family because of lack of funding.

Whilst at BIBIC your child is seen by an OT, Physio, SALT, nutrionalist and GP. There is a therapist who is assigned to you and she works with you throughout your stay.

Our report from BIBIC was instrumental in us gaining J's statement....we paid extra to undergo the EP assessment.

Give them a call if you are concerned...you have nothing to loose.

Pages · 24/04/2005 13:05

Many thanks, Jayzmummy. I will call them.

heartinthecountry · 25/04/2005 20:40

Had our phone interview today for BIBIC and think we will almost certainly go.

Merlot - I was about to say that I knew someone going this week but quickly stopped myself as thought they might think it odd that the only name I knew belonged to a bottle of wine!! Hope you have a good/useful time there. Please report back.

Merlot · 25/04/2005 22:07

LOL HITC

I had my telephone interview when Blossomhill was there and they happened to say that a little was there with her older brother and I wanted to shout - `I know them its Blossom and her family! and then thought better of it '

I will certainly report back. I am excited about it, but apprehension is creeping in a bit now!

Jayzmummy · 25/04/2005 22:19

Merlot.....thinking of you.....you will have a lovely time....dont worry....say hi to Caroline the chef for me...she is wonderful and will do all she can to make you feel welcome.

noori · 29/05/2005 20:07

hello everyone just wanna say am looking into taking part in BIBIC assesment with my girl who is 2.9 and has learning difficulities, she is sensory impaired and is epileptic and not yet mobile looked into the BIBIC and sounds great hoping it will have positive impact on my girls life.
thank you to the moms who have shared their views on this subject.

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