Ellie seemed perfect at birth. It was a time her
parents remember as the happiest of their lives.
It was not until Ellie was about four months old,
and mixing with other babies and toddlers, that it first came to her
mother's notice that something was distinctly different about her -
"compared to the other kids, she was so floppy and gave no eye
contact. Even the other mothers began to remark on it. She was my
first child, so I had not realised this before. And suddenly Ellie
Ellie was taken to a paediatrician, who seemed
baffled. The following two and a half years of blood, urine and
chromosome tests found everything to be normal. Even the brain scan
seemed to show nothing, until a world-famous neurologist was brought
in, for a third opinion.
Eventually a diagnosis was confirmed: Ellie had
been born with an incomplete Corpus Callosum.
The Corpus Callosum is a bundle of nerve fibres,
which acts as a bridge between the two hemispheres of the brain,
relaying and sharing sensory information between them, thereby helping
to unify sensory attention. Without this fully functioning 'bridge',
her parents were informed, Ellie would never be able to stand, walk,
talk, feed herself or make sense of her surroundings.
On hearing the diagnosis, Ellie's mother was -
"relieved, shocked and angry all at the same time. At first I
kept thinking, Why me? And why Ellie?"
Ellie's inability to process sensory information
dominated every hour, every aspect of family life - "because of
her hypersensitive hearing, we could not shut doors, talk loudly, or
open windows or doors; because of her hypersensitive skin, she could
not be cuddled, washed, dried or dressed with screaming and screaming.
She never played with toys, never reached out for anything".
The medical profession seemed so baffled by the
rare condition that they could offer nothing - "we were given no
advice, no suggestions, nothing. They offered a token half an hour of
occupational therapy once a fortnight, during which Ellie would do
nothing but scream and I would just end up crying. It was simply of no
use whatsoever to anyone".
Ellie's mother realised that without any
forthcoming professional help, it was up to her alone to do all she
could for Ellie - "We were not giving up her. We were not going
to dump her in a corner. I knew there was something there in her, and
that it was just a matter of somehow bringing it out".
She started by simply observing Ellie's behaviour -
"Her senses all seemed completely mixed up and confused. It
seemed to be a matter of trying to help sort them out, to unravel them
for her, to give her a second chance. I believed deep down that,
whatever the doctors said, Ellie might still be able to reach the
goals we all take for granted".
Her mother bought and read as many books as she
could lay her hands on, and then bravely started her own programme of
sensory training for Ellie - "I had boxes for different senses,
like a NOISE box with instruments, music tapes, and we'd use our own
voices; a LOOK box with a torch, mirrors and shiny paper; a TOUCH box
with water, sand, paper and with them we included Ellie's body too. We
would have one full day for each sense. For seven hours of the eight
hour daily programme, Ellie would be screaming. And I would always end
up crying. It was very hard for all the family".
For three long years, her mother battled on, until
she happened to see an interview with Sally Smith on Good Morning with
Ann and Nick [BBC1: 13th April 1995] - "I could not believe what
I was hearing! I just knew this was for Ellie and made an appointment
at the Lewes Centre the very next day".
Ellie has now completed two sessions at the Listening
Centre in Lewes.
Her mother brims as she recounts the differences
she has seen:
"Within just two or three days of treatment, I
began to notice things. Straight away people remarked on the changes
in her. She used to be all floppy and did little more than stare at
the carpet, but now she sits up with her head erect and her back and
neck straight. She even looks up at anyone who walks in the door. She
will even respond when she is called from the other side of the room.
"She may not be not walking yet, but we think
that is nothing compared to what else she has now".
"She is nowhere near as hypersensitive as she
was. Today, we can vacuum, use the washing machine, mow the grass,
shout and bang the doors! These were impossible before Ellie's
treatment. She used to jump out of her skin and cry at any noise or
sudden movement. Anything electric, like the vacuum, and she would
stop breathing, go blue, scream and scream and would take a full two
hours to calm down again. Now, I can Hoover right under her feet and
she doesn't mind at all! We can even take her to see fireworks and she
loves the noises and colours in the sky. Her hearing is maturing and
it means that, as a family, for the first time we can live a normal
"Ellie smiles now - she never used to. She
even smiles at people. In fact, her eye contact is just amazing. She
will let her little sister crawl on her, sit on her and not have a
screaming fit. She is far more contented in herself.
"We even took her off the epilepsy medication
during her second session and, as far as we can tell, there have been
no epileptic seizures since whatsoever - not one.
"For two years, Ellie screamed and looked the
carpet - and that was honestly about all. With her sessions in Lewes,
the change in her is brilliant. It's as though someone has, at last,
brushed away the cobwebs from her eyes and brain. She's even started
babbling with 'B-b-b' and 'Mum-mum-mum'!
"As you can imagine, we are very happy about
the whole thing. Of course, we have learned to be patient - Ellie
moves just one inch at a time rather than the mile we would all prefer
- but we cannot wait for her next session.
"I can say that through Listening Therapy, Ellie has
woken up, both to herself and to the world. And we are very