Tuesday, February 20, 2007

Being Special


Picture of happy children of Malaysia playing together

Not many of us are born fortunate in this world. Some people have to accept the fate of having an abnormal child that is less than perfect compared to us. We are not going to shun them out from the community. We are not going to leave them in the dark. Instead, we are going to teach them about life like the rest of us and we are going to make them see a brighter future in the society we live in. Let us be what we always preach to be, a caring society.

On one fated afternoon, someone asked if I wanted to help working as volunteer for special kid school in Klang and I said yes, as simple as that. Off I go on the very same night to the meeting of volunteers of the Special School in Klang, a school that serves the mentally handicapped children.

In Malaysia, mentally handicapped children are also called Special Kids. People who are mentally handicapped have below average intellectual abilities and deficits in adaptive behavior. They tend to have impaired abilities to cope with routines and daily living skills. This disorder interferes with learning, communication, independence, motor ability, and social skills. Approximately one to three percent of the population is mentally handicapped (information derived from www.library-thinkquest.org).

In short, these children have an IQ range of below 70.

The most known mentally handicapped cases of Special Kids are Down syndrome and Autism but there are many other cases that are also classified as mentally handicapped. The causes could be heredity and non-heredity. Examples are (1) genetics such as chromosomal abnormalities, (2) infectious diseases that might cause brain damage, (3) prenatal and postnatal trauma and (4) toxin exposure such as lead and mercury and the mother’s use of alcohol and drugs that can cause brain damage.

Now let’s talk about these two main categories of Special Kids, i.e. Down Syndrome (DS) and Autism.

Down syndrome (DS)

This is the history of how DS get its name. I took it word by word from
http://www.ds-health.com/ a website of a parent who dedicated his time to help other parents with a DS child. Here goes…

The formal story began in 1866, when a physician named John Langdon Down published an essay in England in which he described a set of children with common features who were distinct from other children with mental retardation. Down was superintendent of an asylum for children with mental retardation in Surrey, England when he made the first distinction between children who were cretins (later to be found to have hypothyroidism) and what he referred to as "Mongoloids."

Down based this unfortunate name on his notion that these children looked like people from Mongolia, who were thought then to have an arrested development. This ethnic insult came under fire in the early 1960s from Asian genetic researchers, and the term was dropped from scientific use. Instead, the condition became called "Down's syndrome." In the 1970s, an American revision of scientific terms changed it simply to "Down syndrome," while it still is called "Down's" in the UK and some places in Europe.

The cause of DS was first determined in the year 1959 by Jerome Lejeune and Patricia Jacobs. It is because of trisomy (triplication) of the 21st chromosome which is due to translocation and mosaicism. See the photos below that explain the difference between normal chromosome and trisomy 21st chromosome.




This is a normal chromosome of a female person. It has a set of 22 chromosomes and one of XX. Human cells normally have 46 chromosomes which can be arranged in 23 pairs. 22 are alike in males and females; these are called the "autosomes." The 23rd pair are the sex chromosomes ('X' and 'Y').



This is a photo of a male with trisomy 21 or DS.

Facinating, isn’t it. At least now we understand it from the medical point of view. Some people linked it with superstitious belief and other nonsense. It’s time for us to educate ourselves and the community of these special cases of human defects. With understanding, we react better towards the situation. And for the parents of Special Kid, society’s awareness is a great relief. Our compassion is their joy.

Autism


“Autism is a developmental disorder that is characterized by impaired development in communication, social interaction, and behavior. Autism is classified as a Pervasive Developmental Disorder (PDD), which is part of a broad spectrum of developmental disorders affecting young children and adults--the Autistic Spectrum Disorders (ASD). The range of these disorders varies from severely impaired individuals with autism to other individuals who have abnormalities of social interaction but normal intelligence--Asperger's syndrome. The ways in which autism is exhibited can differ greatly. Additionally, autism can be found in association with other disorders such as mental retardation and certain medical conditions. The degree of autism can range from mild to severe. Mildly affected individuals may appear very close to normal. Severely afflicted individuals may be extremely retarded and unable to function in almost any setting.” Taken word by word from medicinet.com.

You can read more about autism from this website, a full paper on autism. Quite useful for those who are interested to learn more at childrensdisabilities.info.html

Now for a much fun way of learning and understanding autism child and their world is by reading this book entitled "The Curious Incident of the Dog in the Night-Time" by Mark Haddon. It's about a 15-year old autistic British boy story of love, struggle and bravery in solving the murder of his neighbour's poodle dog. Very touching and original. You'll moved to tears, I guarantee that.

Or you could watch this movie, I am Sam who tells a story about a single DS and autistic father played by Sean Penn and little girl, Dakota.

Back to the Klang Special Kid School, I’ve learned a lot ever since that. I've seen many different cases of Special Kids. Some of the children have the combination of DS and Autism at the some time. Some of the kids can easily be seen as having a DS, some looks so normal like us but with certain hyperactive behaviour, i.e. very quiet, in their own world or doing their own stuff and some are so clever, they could read and write but they are categorized as slow learner. They are put into different classes in order to give better attention according to their needs and capabilities.

This is long enough for one posting. In the next one, I shall be writing about other areas of this subject including about the school and the volunteers.

4 comments:

  1. And don't forget to visit my blog and read the occasional posts on the trials and tributalations of being a parent of a child with autism in the UK

    http://slfountain.wordpress.com/

    Wasalaam

    Yakoub

    ReplyDelete
  2. Hi Yakoub,

    Your blog has always inspired me. Yeah, I've updated the link to your blog here.

    I got better understanding and first interest of autism from your story in the blog, that's the truth. It is strange but you know what, it's almost fated that one thing related to another and the combination of all amazes me.

    It all started with 'Life Goes On' a drama series about DS that gave huge impact in my life, then 'I am Sam' a movie that moved me to tears,then your blog, then the book 'The Curious Incident of the Dog in the Night-Time', then an offer to volunteer and God knows what. I never plan or search to be involved but it is all related.

    Only Allah knows.

    ReplyDelete
  3. Salam, I have a Down's child by the name of Hanif. He is well loved and taken good care by all in the family. Having a special child is a great challenge.

    ReplyDelete
  4. Anonymous2:07 am

    do u have their contact or email where we can send money for charity ?

    ReplyDelete

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