[senco-forum] Hydrocephalus

Hi Patrick
  We had some excellent advice from ASBAH about a boy some years ago.  They also have advisors who work with children and families.

  This is from http://www.asbah.org/2-83.aspx 
  ASBAH is the leading UK registered charity providing information and advice about spina bifida and hydrocephalus to individuals, families and carers.
  and
  ASBAH employs a network of Advisers throughout England, Wales and Northern Ireland who deliver our advice, support and advocacy services. Our staff also includes Specialist Advisers in education, health and continence management.

  We also got advice from the LA's Advisory Teacher for Physical Disability for the physical problems of spina bifida plus the Educational Psychologist for the learning problems caused by hydrocephalus.
  At different pupil who had nystagmus had advice provided by the Advisory Teacher for Visual Impairment.

  Do you have access to anyone like this?

  Amanda
  Secondary SENCO
  Cornwall
Patrick Slowe <viktrix at hotmail.co.uk> wrote:
  Hi all
Please forgive my having been a little out of touch - I do keep an eye on 
what is going on on the forum. Having left teaching (with no regrets) I am 
also not fully up with developments in the last few years.

That said a colleague is trying to advise a parent of a 12 year old child 
with hydrocephalus as well as other problems. Many years ago we had a 
similar child who came up into our mainstream secondary school. His parents 
had had to fight the LEA to allow him to remain in mainstream, and he had a 
very high level of support. My memory (?) tells me that he had a lot of 
difficulty with perception, spatial sense etc, short term memory problems, 
problems in new surroundings and with changes of routine.

I have only had sight so far of limited reports of the child whose parent my 
colleague advises. However we do know that at 12 years old he has a reading 
age of 7 (test unknown) and that he is generally very behind his peer group. 
This boy also has some problems with vision - nystagmus

As we understand it the provision for this boy is only to make sure that he 
sits at the front of the mainstream class, and some support for literacy.

Any pointers to useful information relating to hydrocephalus and its effects 
both on education and a person's ability to get around in unfamiliar 
circumstances. The boy concerned has been brought up to be as normal as 
possible but clearly is having more difficulties than have been recognised. 
We are trying to deal first with an appeal for DLA next Thursday so 
information to help before then would be wonderful - pointers to websites 
etc most welcome, especially anything we can quote as "expert" opinion. In 
the longer term we need to tackle the educational issues so pointers to help 
with this would be very welcome.

Is there anyone out there working as a SENCo in Sheffield LEA? - please 
reply off forum.

Many thanks in anticipation of the help people always give so generously 
(and to the senders of 'funnies')

Cheers
Patrick

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Amanda
Secondary SENCO
Cornwall