LUKE:
"It's a flat baby!"
The midwife's voice bounced about the bright white
walls. Sally lifted her head weakly, but could see nothing past the
huddle of rubber-gloved medics at the end of her bed.
A flat baby? "Have I given birth to a
piece of paper?" she gasped to Alex. His silhouette loomed
comfortingly against the neon-glare, his hand steadfastly gripping
hers.
"Blue". Somebody said, "Blue".
Sally looked back up to Alex. He was ashen white.
Silent.
There was a sudden surge of movement around her.
Sally's legs were unstrapped from the stirrups. Needles pulled out.
Wires disconnected. The midwife burst through, babbling. "..Hold
just for a wee minute...intensive care...extra oxygen....good
rest...".
A baby was flopped onto Sally's chest. She blinked
through tear-blind eyes. It was indeed very flat and very blue. Her
first child, Tom, had been born by caesarean section. He had,
therefore, come into the world looking quite perfect.
"You are making a mistake", she
whispered, "This is not my baby". The room was reeling. She
tried again: "You have given me the wrong baby. This is not my..."
And the tiny bruised infant was whisked away.
Sally tried to explain. Desperately tried to
explain. Fear and exhaustion crowded in, choking her attempts. And
somewhere, far in the distance, a woman's sobs drowned out her words.
**********
"Would you like to get up and feed baby?"
Sally jumped. "Good morning, Mrs. Smith. Would
you like to get up and feed baby?", the nurse repeated.
The room was neat and tidy, the bedclothes clean.
Sally moved her hand across her belly. Baby? The
night before tore back into her memory.
Sally leapt from her bed, collapsing in pain, her
bare knees hitting the detergent-bleached tiles.
You have given me the wrong BABY...
The enormity of those words forced her to stand,
forced her to stagger after the prim little nurse, forced her to
stumble along the corridors, forced through the doors of the Intensive
Care Unit. All she could think was to hold her child, beg for
forgiveness.
The wait in the cubicle seemed interminable.
When the nurse reappeared, she held a tiny boy in
her arms. Sally looked into his little squashed, purple face and
filled with an unbelievable tenderness for him. Instinctively, she put
him to her breast and Luke began to feed. The ferocity of this baby,
deemed far too weak to suck, was such that the nurse called in Sister,
just to see. And Sally knew her son would survive.
**********
The first six weeks were blissful. Luke was an easy
baby, who cried rarely and fed well. Then came his first check up.
The doctor and health visitor were nervous. They
noted "something odd" about the way Luke breathed. They
advised an immediate appointment at the local hospital.
Three years before, Sally had lost her Tom during
heart surgery. He had not even reached his second birthday. The memory
was too close, too harrowing. At the suggestion of there being
something wrong with Luke, Sally began to tremble. She literally began
to shake with fear.
From hospital to hospital, from doctors to
consultants to specialist paediatricians, Sally and Alex took Luke to
appointment after appointment. With the history of Tom's condition,
all concern was directed at Luke's heart. In time, a diagnosis was
given: congenital heart disease with pulmonary stenosis. The nightmare
had come true.
At eight months old, Luke was referred to the
Children's Neurology/Assessment/Psychology Clinic. Suddenly, the awful
expression 'Special Difficulties' came into the vocabulary. Tom had
always been so ill that Sally had been unable to compare her new son's
development. Luke appeared to be a model baby - quiet, placid,
undemanding. So what were his 'Special Difficulties'? And why was he
being assessed at the Clinic? Alex and Sally became increasingly
frustrated at their inability to coax any direct reply from the
medical authorities to any inquiries regarding Luke's condition.
Answers seemed purposefully vague, noncommittal and inconclusive.
Shortly before Luke's first birthday, when summoned
back to the clinic for yet further tests, Sally dared ask a simple and
direct question: "Is our son mentally and physically
handicapped?". "Oh yes!" came the reply, "Didn't
you know?".
**********
The first few years of Luke's life were spent at
his parents' sides. Alex resigned his job at Scottish Opera, then
Sally did the same, in order to take of Luke. They started their own
ironmonger's shop in Callander, near Glasgow, "probably the
maddest thing to have done, but at the time it seemed to be the only
way to keep us all together". Having spent her entire life in
opera, Sally had to admit that she did not know the difference between
a nail and a screw, "but with twenty thousand items to sell, I
had to learn fast!".
By seventeen months, Luke was using about a dozen
words. His parents were, naturally, delighted. Then Luke fell ill with
a respiratory infection and was prescribed Amoxil - a penicillin-based
antibiotic, frequently given to children. Suddenly Luke lost his
vocabulary. In fact, he did not speak again for almost eight years.
The only reason the medication is specified is
because, years later, at a medical conference attended by Sally in the
States, two doctors reported to have observed children between the
ages of one and two regressing, losing their speech, and developing
signs of withdrawal and behavioural problems after being administered
this very drug. Surveys have apparently shown this antibiotic, which
was developed in the early '70s, to have induced such dramatic
allergic responses in children who also exhibit reactions (including
autistic tendencies) to wheat and dairy products. There are a number
of studies, which appear to connect certain 'autisms' and loss of
speech, in some children, to the candida albicans yeast, which tends
to thrive after a long course of general antibiotic treatment. It has
also recently been shown that antibiotics used to treat childhood ear
infections, not only disrupt the natural ecology and function of the
gut, but actually contribute to the growth of yeast in the middle ear.
For Luke, the regular visits to clinics and
hospitals continued. He had to endure endless days of Assessments,
which left his parents increasingly demoralised and unhappy. Luke was
simply unable to "Put the blocks in order", "Feed
dolly", or "Comb dolly's hair". And still no clear
advice. Only, "Time will tell".
By the age of three, Luke had thirty professionals
involved in his life, but not one paediatrician, neurologist,
psychologist, or 'therapist' could define a Syndrome. Luke did not fit
any recognised pattern. For one hour a week, home visits were made to
their little cottage at Callander, near Glasgow, by peripatetic
teachers and educational psychologists. The physiotherapist brought
callipers, clamps and body braces, but once she had gone, Sally hid
this collection of gothic monstrosities in the garage - until the next
time she came.
The local authorities were supportive, but gave no
hope for the future: Luke would probably have to enter the standard
educational system for the Disabled and there he would remain, but for
the moment, with no clear 'label' to give him, Alex and Sally were
told to just "Keep the home fires burning".
Well-intentioned, but ignorant, friends and professionals said they
should "Accept the facts - this is it for Luke!". Sally and
Alex, ridden with guilt, and at times depression and despair, refused
to listen. They had long accepted Luke's disabilities - his autistic
behaviour, his expressionless face, his hand-flapping, repetitious
actions, lack of spontaneity, extreme behavioural problems, lack of
voice, his 'Gross Motor Delay' - and loved him just the way he was.
But, they had no intention of losing their son to an institutionalised
baby-sitting service for the rest of his life. There had to be more.
**********
The first signs of encouragement came from the
Brain Injury Rehabilitation & Development Centre in Chester. Dr.
McGlown was dedicated; his diagnoses and council were clear and
professional; his observations were astute and honest; he gave hope
without promising miracles. In retrospect, his gentle programme of
half an hour a day of Infantile Reflex Correction Therapy, prepared
them well for what was about to come.
Luke was four when a programme about Doran Scotson
was televised. Doran had cerebral palsy, but through neurological
rehabilitation at the Institutes for the Achievement of Human
Potential in Philadelphia his physical disabilities had made way for a
highly intelligent, witty, active, capable child to shine through. The
'well-intentioned-but-ignorants' came to the fore again and instructed
Alex and Sally to "Leave it well alone!". It was not until
Sally braved a letter to Dr. Jonathan Miller, who was courteous enough
to return a reply in which he enthusiastically encouraged their
nascent interest in the Institute, that they dared to make plans.
Thanks to numerous contacts and friends from their
mutual professional backgrounds in opera, the fund-raising concerts -
initially in local schools and village halls, and then at the Theatre
Royal, Glasgow, and The Royal Opera House, Covent Garden - were
"staggeringly successful". So much so, that money was raised
to support the family for three years of regular visits to the
Institutes. Through many people's selfless generosity, the reality of
their being able to make the journeys to Philadelphia came like a
miracle. Their gratitude remains inexpressible.
Thus it was that, under the direction of Dr. Glenn
Doman at the Institutes for the Achievement of Human Potential, the
whole family began an extraordinary and intensive regime.
**********
Luke's physical programme was to be one of
'Patterning'. At hourly intervals, two assistants moved Luke's limbs,
teaching the brain, "this is how it feels to creep - this is how
it feels to crawl". He was then taught how to, first, creep on
his belly, then to crawl on hands and knees for himself. Luke had been
able to sit himself up, to 'bum-shuffle' and even to stand and take
steps, with support, before the programme, but it was imperative that
his brain and body establish the neurological connections which only
an infant's creeping and crawling is able to do, before moving on to
standing and walking. If only more parents were aware of the potential
educational and motor-co-ordination delays they were risking by
placing babies in 'walkers' long before their children have completed
these natural and imperative stages of development.
Back in Callander, with the daily assistance of a
dedicated troupe of some 95 volunteers, over the following three
years, Alex and Sally crept 18,000 miles with Luke and crawled a
staggering 23,000! Within just three months of 'Patterning', Luke was
walking unaided when he used to, at best, "totter about like a
drunk". In time the "flat, blue baby" was performing
such gymnastic feats as running, jumping hurdles, walking on balance
beams, back and front flips, overhand walking on overhead bars, and
somersaults! But most extraordinary for his parents was that his
"flat occipital bone" - the back of his skull - suddenly
filled out as the posterior parts of his brain began to develop.
The educational programme - developed by one Dr.
Carl Delacato - was as enlightening to Sally and Alex as it was to
Luke. They had always understood Luke to have the intellect of a six
month old. In fact, his ability to take in information - his
'receptive skills' - were far advanced. It was only his ability to
express, to communicate this information that was damaged. From years
of 'Round and Round the Garden Like a Teddy Bear' - which, as Sally
admits, with a cringe, "must have been driving the poor child
insane!" - Luke was learning Higher Mathematics, 4,000
encyclopaedic facts, Italian, German, French and Japanese!
Luke was neither an invalid, nor an
"imbecile", as he was once referred to. Every single day he
proved himself by his "positive rage to learn". Luke could
be regarded - though more importantly he could regard himself - as a
capable, contributing human being with potential.
Every two to three months, the family returned to
Philadelphia for increasingly scrutinising assessments and
increasingly intensive programmes, which the volunteer team in
Callander continued to execute with Stoic dedication.
**********
At the age of six, Luke began treatment at the
Kerland's Institute in Somerset. Here they practised a similar method
to that at the Philadelphia Institutes, based on the work of Doman and
Delacato. All along, it had been assumed that the founder and pioneer
of Luke's education programme was no longer living, until, through a
friend, Alex and Sally discovered that Delacato was very much alive
and living in Spain!
A trip to a clinic in Alpace, and Delacato himself
was explaining Luke's 'sensorisms': Luke's sensory pathways were all
either over or under reactive, and some were even both. His nose, for
example, was hyposensitive to normal smells, but to others - certain
body odours, perfume and deodorants - he was hypersensitive, and would
reel away in horror! His ears were hypersensitive - whispering gave
him pleasure and made his pallid face flush pink, while shrill sounds
caused him intense pain. In self-protection, Luke either cut out all
sound, or compensated by producing an even louder one himself. Indeed,
Delacato assured them that Luke's lack of speech was not a problem of
larynx or mouth function, but rather of his ears.
For the first time, in all these years, somebody
had explained Luke's behaviour. Alex and Sally were now able to admire
their son for coping so well despite the extreme imbalances of his
sensory pathways. They could now better accept and approach what they
were up against - "and we could all calm down". Delacato's
encouragement and hearty "injections of sheer enthusiasm",
and the fact that Luke's co-ordination and social skills were
improving, drew them back again and again. In fact over the next five
years, Luke, Alex and Sally made visits to Delacato in Spain, Italy,
Belgium and Switzerland.
Even the four mortgages on their home were worth
it. For the first time, Alex and Sally understood Luke. For the first
time, Luke understood himself.
********
In 1991, whilst attending an international
conference in Bologna, a Belgian woman became most intrigued by Luke.
She had a nephew who seemed to exhibit similar characteristics. She
related how he had been treated by Listening Therapy for delayed
Motor development and dyspraxia. After a year, her nephew was now
speaking and catching up well at school. Sally misunderstood the
details. She visualised Luke having to undergo some "ghastly
operation in order to have an Electronic Ear inserted!". The
woman directed Sally and Alex to a book by Tomatis himself entitled, 'L'Oreille
et La Vie' (now published in English as 'The Conscious Ear'). Their
French was sufficient for them to realise the Method was worth
investigating. It was also obvious that it would complement the
Delacato programme and an appointment was made for the family to visit
the Centre in Paris.
Thus it was that, within weeks, they were being
interviewed in the Paris centre to ascertain whether or not Luke's
condition could benefit from treatment. It had, in fact, become quite
obvious that the problem with his hearing had worsened since the
removal of five teeth due to abnormalities in his gums. Four months
before the visit to Paris, from being a comparatively easy-going
child, Luke had turned into "a screaming monster, who kept
holding his ears".
At the Centre, listening tests were made on Alex
and Sally. Where a child is unable to take the test, due to age, or
physical or mental problems, a combination of the parents' own results
and years of training and experience by the Tomatis psychologists are
sufficient to judge the child's auditory requirements.
Alex and Sally sat in sound-proof cubicles, where
tones of various pitch were played first through earphones and then
through a headset. The latter sat on top of the skull, passing the
sound directly through the bone, rather than through the ear.
Individually, they had to indicate which notes were audible; whether
the note came from the right or from the left; whether the note was
higher or lower than the previous. From this test audiograms were
produced.
The subsequent consultation with Professor Tomatis
brought a promise that Luke would benefit enormously. Indeed, he
believed Luke's behavioural problems and motor co-ordination would
significantly improve. Even that he would start to speak. It seemed
too much to believe in. Too much to dare to hope for.
As for everyone being treated by the Method, Luke
initially attended two-hour sessions for fifteen consecutive days. He
happily played with trained Child Care workers and with other children
who were being treated. And all the time, Mozart, Gregorian Chant and
a recording of Sally's voice - with low-frequencies (below 8,000
hertz) filtered out by the Electronic Ear - were played to him through
headphones. It is usual for one parent of the treated to child to
receive a general treatment themselves, whilst their child is
entertained elsewhere and treated in a separate room, and on this
occasion it was Sally who "enjoyed the benefit".
For the first two days, Luke was happy, energetic
and showed a marked degree of independence.
On the third day of treatment, Luke looked directly
into Sally's eyes and said, "Mum". It was a moment she had
waited for more than seven years.
During the third and fourth day, Luke became a
little tearful, a little "out of sorts".
As the days progressed, his sleep pattern changed;
when he did sleep, it was so deep that he had hardly moved when he
awoke. He began to laugh more and his normally expressionless face
began to develop character. His eyes began to focus and he started to
read books for hours, again with a face now full of expression. He
began to listen to sound and would react, no longer seeming able or
willing to close out his surroundings. He even took to asking to
listen to music at every opportunity, with a clear preference for
classical works. He became less panicky and more able to contain
himself when frustrated or upset. His energy, strength and
co-ordination increased significantly and he could happily walk five
miles at a time. His eye contact increased immensely and he began to
prove himself to have a phenomenal visual memory. He began to use his
voice to articulate every request. In fact, he began to vocalise much
more in general and, although largely indecipherable, the odd word
would burst out correctly. And then a "P-P-P" began, for
Papa.
Following the fifteen day session, with a number of
weeks between, two further sessions of just eight days each were
attended. And Luke continued to progress.
One evening, whilst in Paris, Alex, Sally and Luke
were invited to a party. Luke was decidedly unimpressed and grew
quickly bored. The treatment he was undergoing at the time had already
made him a little more emotional than usual. This, combined with a
long day and the sheer tediousness of sitting through hours of
grown-up chatter, sparked a connection in Luke's brain. He suddenly
entered the room, looked straight at his mother and, in front of
everybody, blurted, "I WANT TO GO HOME!". The guests were
stunned. Luke was adamant. And Sally nearly fainted.
**********
Luke is now thirteen. All his initial changes
through the Listening Therapy have remained constant. It should be noted
that the effects of the Listening Therapy are permanent and do not stop
with the treatment. In fact, the true benefits usually begin to
manifest themselves weeks or sometimes months after the listening
sessions have finished.
Luke is now able to eat with cutlery, rather than
only with his hands. He sleeps longer and more peacefully. He is
generally much calmer, more observant and interested in what goes on
around him. He is less startled by the unexpected. He is now able and
more than willing to entertain himself, rather than having to rely
entirely upon 'input'. He is more adventurous, wanting to venture
outside to walk and run alone. He is now able to descend stairs alone,
when before he was quite incapable of co-ordinating alternate leg
movement. He gives more eye contact and is significantly more
affectionate. He now relates more positively to Alex. He babbles for
many hours a day with meaning and energy, particularly to inanimate
objects. He desires to help around the house, insisting upon doing the
washing up - a task he performs with precision and zeal - and
generally wishes to be involved in all domestic activities.
Luke is so much happier. He laughs a lot, is more
assertive, and decisive. Indeed, to Alex and Sally's initial dismay
and then delight, Luke has become less willing to do as he is told. In
fact, he had begun to develop and exercise a very individual, and at
times mischievous, character!
For Alex and Sally, the benefits of the Listening Therapy
for Luke have been far-reaching for the whole family. It is not
unreasonable for them to state that it has changed all their lives.