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When
Dylan was born three years ago, no one would have imagined
the challenging times that awaited him and his mother, Susan,
in the years to come. Although he was born an intergrowth
retardation baby, with slightly lower muscle tone due to growth
stoppage, nothing else seemed to suggest the extraordinary.
He was as cute and adorable as any baby could be. At the age
of one, Susan began to feel that something was amiss.
Dylan
had difficulties sitting up, he seemed slower than other children
in taking his first steps, and when he finally began walking,
he was always falling down. It also took him a long time before
he could speak. By then, every small drawback fuelled a growing
worry.
Friends
and relatives tried to convince her that Dylan was just a
late developer. But somehow amidst the consolations and kind
words, Susan knew that Dylan was having a problem - however,
her problem was that no one could tell her what it was.
Only
one thing was clear -Dylan needed more attention from her.
She eventually made up her mind to give up her job as an Image
Consultant so that she can focus her time on helping her son.
Her efforts paid off only one and a half years later.
While
consulting a speech therapist on Dylan's speech difficulty,
she was told that Dylan's symptoms were similar to that of
a condition called Dyspraxia.
A
Shocking Revelation
What is Dyspraxia? The term was completely foreign to her.
So little is known of dyspraxia that even healthcare professionals
were not able to offer her much advice on suitable treatments
for the condition. Whatever available infomation was discovered
on the internet from overseas support groups for dyspraxia
patients. Due to a lack of awareness on the condition in Singapore,
Susan could not find anymore else lending a child with dyspraxia.
Now faced with the daunting truth, she felt helpless to do
anything about it, and had no one to turn to...
Desperation
To Courage
Things began to look brighter only when a family friend who
worked at WEE CARE, an educational and behavioural therepy
centre, introduced her to another mother, Sook Fun, who had
similar frustrations dealing with her three-year-old son.
The two mothers found strength and support from each other.
They compared notes and spurred each other on. In the meantime,
their two boys underwent regular therapies for their speech
and movement difficulties.
What
Is Dyspraxia?
The term 'dyspraxia' is taken from two Greek words: 'dys'
meaning ill or abnormal, and 'praxis' meaning doing. This
roughly translates to a 'difficulty in planning and carrying
out complex movements. It is thought to be an immaturity of
neuron development in the brain rather than brain damage.
In fact, dyspraxic children have no clinical neurological
abnormality to explain their condition. The most advanced
research suggests that parts of the brain are insufficiently
mature to allow the child to follow the path from action to
response without the transmission between the nerve cells
breaking down or becoming an unacceptably lengthy process.
At one time, dyspraxia was cruelly coined 'the hidden handicap'
or 'the clumsy child syndrome'.
What
It Is Not
Confusion usually arises when the term 'dyspraxia' is taken
in its literal form to mean that the child is uncoordinated.
At the present time, developmental dyspraxia is currently
applied to youngsters who present a wide spectrum of difficulties,
including poor articulation, limited concentration and an
inability to follow instructions. According to Mary Lobascher
(1st Edition Praxis Makes Perfect. Dyspraxia Foundation).
"It is hoped that the diagnosis of dyspraxia does not suffer
the same fate as that of dyslexia so that every child who
may be a little forgetful, disorganised and clumsy is diagnosed
as dyspraxic."
Dealing
With Dyspraxia
The best way to detect dyspraxia is in a child's behaviour.
Due to its clinical invisibility, having a child with dyspraxia
can be a major blindfold for parents. And since the rate of
a child's development really does vary from individual to
individual, figuring out if your child has dyspraxia can really
be a trying experience. However, there are specific symptoms
that make the condition apparent.
Signs
& Symptoms
Dyspraxia results in poor balance, difficulties in fine and
gross motor coordination, problems with vision, motor planning
and perception, tactile dysfunction, poor awareness of body
position, difficulty with reading, writing and speech, poor
social skills and emotional or behavioural problems.
However,
it is important to remember that a child with dyspraxia may
have a combination of several of the symptoms in varying degrees.
By the time the dyspraxic child becomes older, an abnormality
of behaviour becomes more apparent as more complex motor skills
are required with matured activities. For example, learning
to ride a bicycle may be a very difficult process, along with
using cutlery, tying shoelaces and dressing up. A simple P.E.
session could require a lot more exertion for the dyspraxic
child. The older dyspraxic child also experiences poor balance,
poor reading skills and poor handwriting. He tends to struggle
with remembering instructions and copying from the blackboard.
Lastly, the child may encounter moderate to considerable difficulties
with speech and expression.
The
Emotional Difficulties
A dyspraxic child may find the experience of being in a normal
school rather traumatising.
As
a result of their unique developmental capabilities, the dyspraxic
child often gets singled out and marked as a walking bulls-eye,
the easy target for tease and bully. In the United States,
dyspraxic kids are often bullied because they're slower, gentler
and more vulnerable. Like all concerned parents, both Susan
and Sook Fun place their child's welfare as their most harrowing
worry. So what do children with dyspraxia need?
Help, Therapy & Acceptance
Dyspraxic kids benefit most from one-to-one therapy. The regular
support of qualified professionals helps them reach their
fullest potential. Parents can consult occupational therapists
and speech therapists.
They also need a lot of support and understanding in the educational
system, which means that teachers and fellow students need
to be educated and made aware of what dyspraxia is.
The
family with a dyspraxic child also goes through untold challenges.
In addition to the normal stresses and strains of raising
a special child, the family has to cope daily with their childs'
ongoing frustration as well as their own limitations.
Sook
Fun, for instance, found it difficult to explain to her Chinese
relatives what dyspraxia is. Lack of a suitable Chinese translation
for the term did not help too. Furthermore, most older folks
tend to dismiss the symptoms as phase every child goes through.
Very often, they hang on to myths and old wives' tales as
they do not really understand the condition. "It's hard to
explain to them that no amount of herbal soups will rid a
child of dyspraxia!" said Sook Fun.
A
Lifetime Of Learning
The family will also have to deal with the constant demand
for teaching and training the child.
Susan uses flashcards to help her son improve his speech.
Dylan is good with vowels but cannot identify consonants.
In fact, it was an agonising wait of two years before he finally
said 'Mama'. Both Susan and Sook Fun go the extra mile to
help their sons beyond the regular therapy sessions. Susan
gets Dylan involved in housework, guide him to climb up stairs
and eat his food without help. "It takes a lot of patience,
there's a lot to be done." Susan reveals.
Better
Awareness & Understanding
What families like Susan's and Sook Fun's need most is for
dyspraxia to be better understood and recognised. Having a
dyspraxic child should not equate travelling a lonely road
fraught with mishaps and detours. The local situation offer
very little support for parents of dyspraxic children. Lack
of information and communication on the specifics of the dyspraxic
condition proved a major stumbling block to both Susan and
Sook Fun.
Children
have a very steep learning curve in the first few years of
growth. When time is of the essence, the lack of proper information
and guidance can be detrimental. Both Susan and Sook Fun felt
that much more could have been done if they had been given
earlier diagonsis and more information from the doctors and
hospital staff they had consulted.
Determined
to help other mothers who have dyspraxic children, Susan and
Sook Fun decided to form Singapore's first dyspraxic support
group. Their group hopes to raise awareness on dyspraxia so
that other mothers need not go through the trauma and anxiety
they went through! And as they have found out the hard way,
when it comes to dyspraxia, ignorance is most certainly not
bliss!
If
you think your child may be dyspraxic, Susan and Sook Fun
welcome you to drop them a note at:
S-Dyspraxia@egroups.com
Find
out more about Dyspraxia, log on to: http://www.singapore30plus.org/children.html.
Further support can be received at: S-Dyspraxia@egroups.com
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