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Changing the face of Down syndrome

Having had the benefit of access to higher studies in special education, my mind pierces me to recall a number of perils which affected Jamaican children, perils that went largely unnoticed and under-intervened. For much of our childhood - especially if that period of development occurred in less remarkable economic settings - we laughed away at much of our impediments or pretended to show a brave face when scrutinised. The unfortunate downside is that over time we became aloof to the trauma faced by those left behind - most times academically, and whose lives become forever caged, and unexplored. It's the untold misery we help to shape rather than ease

Melissa Bonnick-Anderson, Contributor

It was only after I became an educator and worked with special-needs children that I realised that I, too, had behaved much like the Levite in Jesus' transformational story of the Good Samaritan.

I had met the face of this peril when I was a child of about seven years old, and met Chupsie (her nickname). We weren't playmates, but even then I knew she was 'different'. I don't know how old she was but I knew she was much older than I and yet she looked 'baby-like'.

Chupsie could not articulate as well as everyone else but her receptive language skills were high ... she understood a whole lot more than it appeared ... she would often "play fool to catch wise", according to the old Jamaican adage.

Cause of Down Syndrome

When Chupsie spoke, it was obvious that her tongue was a major obstacle in the way of her speech. In my later years, I would find out that this was typical of Down syndrome otherwise known as Tongue Thrust - part of the oral motor mechanism which presents in that particular population. Down syndrome is also known as Mongolism, Trisomy 21, congenital anomaly and mental retardation. It really is mental and physical symptoms that result from having an extra copy of Chromosome 21, also called trisomy 21 because there are actually three copies of this chromosome instead of two.

Children with Down syndrome or Trisomy 21 are still children just like you and I were. They have the same expectations of love and acceptance. Although Down syndrome is a chromosomal disorder resulting in mental retardation and physical abnormalities, Down syndrome children can lead full lives and achieve great potential. The initial crucial determining factor of the quality of life that is enjoyed by this population during childhood and adulthood is environmental perception.

Physical differences

How are they viewed from birth by both health-care personnel, parents, caregivers and society? Are they greeted with normality or are their physical differences the main focus of attention. Are they showered with love or disdain and coldness and negativism from those in whom they seek to trust? Are we presenting them with an identity at birth that only speaks of their shortcomings and dissimilarities? Can we overcome the cultural alienation that our society offers and extend a loving embrace that changes the common perceptions and pave the way for a successful future for these Down children?

The physical characteristics that I saw back then in Chupsie are identical to the typical signs of Down syndrome, and I'm sure most of you will be familiar. She had a flat face with eyes that were slanted upward. Her neck was short and her ears were abnormally shaped. I failed to indicate that I met Chupsie at church and although she was very different from everyone else, she was a warm and friendly soul and very affectionate. Chupsie would never pass me without grasping my hands tightly while she proceeded to ask me in her usual mumble, how I was doing. It was then that I noticed that her hands were unusually small and the fingers short and stubby, as were her feet and toes. Chupsie did not have a major issue with fine or gross motor at all and she was definitely well adapted to her social environment. She was well-dressed, carried a purse and maintained neatly combed hair. She walked to church every week, carefully avoiding the traffic and keeping well to the curb. In all the years I knew her, she was never once hit by a car. The only thing that appeared to be a little out of the norm was that Chupsie loved to laugh at people. If she ever saw something funny happen to you (true or perceived) she would burst out in giggles. The next time she saw you, she would start laughing immediately. As I mentioned before, she loved to give hugs and she had her eye on a few bachelors at church. After church, she would find them and make sure she didn't leave the vicinity until she could secure a very tight hug. It was her way of reaching out for love and acceptance. I found it interesting as I watched these young men unsuccessfully try to squirm out of her pudgy grasp. By the look on their faces, they seemed to not understand this assertive characteristic. Have Intelligence It was only as I studied and matured, I came to realise that our society did not take Down syndrome persons seriously. They were not expected to make an invaluable contribution to their environment, and it seemed as if nobody thought they had any intelligence at all. Down syndrome persons, though physically different, do have intelligence, feelings and a great sense of humour. Not only that, but they are some of the most affectionate and nurturing people I know ... we could all take a baptism from their chromosomes. Later on, I began to work with the population of persons characterised by moderate intellectual disability. Down syndrome was just one of the members of that group. Yes, their abnormality does extend beyond the physical characteristics of the slanted eyes, flat face and short neck, hands and feet and hard-to-understand speech. It also affects their cognitive ability. They do suffer from a level of mental retardation or more politically correct, they are intellectually challenged. Their adaptive behaviours (the conceptual, social, and practical skills that typical people use to function in everyday lives) are also limited. Symptoms of Down syndrome can range from mild to severe. However, they typically fall in the moderate range of cognitive disability. It is important to note that this cognitive disability does not prevent them from learning academics, acquiring functional knowledge such as learning their personal information (name, address, date of birth, age, parents' name, etc.); being able to manoeuvre themselves within their environment by taking public transportation; understanding safety rules and signs; being able to identify the different denominations of currency and understand value; making purchases without being cheated; shopping for grocery and preparing nutritious meals. Some persons may even be able to write a letter, purchase a stamp and mail it off at the post office, open a bank account, save money and use an ATM card. Most of all, Down syndrome persons can learn the necessary skills needed to function in a variety of employment settings. Some of these skills include filing in alphabetical order, working in restaurants as a server or busboy, categorising labels by colour or size in retail establishments (clothing stores) and sorting items and packaging or unpacking boxes. These are just a few areas that persons like Chupsie can find gainful employment and lead productive lives. Need societal integration Children with Down syndrome have to be specifically prepared for integration into society. They have to be taught the skills that will help them achieve independence and productivity. Practical self-help and daily living skills such as dressing (which we tend to take for granted) and personal grooming, diet and speech, as well as appropriate social behaviours are some of the areas which have been affected by their delayed cognitive development and have to be taught. It is found that early intervention with educational and other services improves the functioning of young children with Down syndrome. So let's focus on improving quality of life at an early stage! The solution to helping Down syndrome children become productive adults with greater adaptive and self-help skills is for us to invest in early intervention and extensive pre- and post-natal education. Children with Down syndrome will most assuredly benefit from speech therapy, occupational therapy and functional academics at school. Had Chupsie had the privilege of being exposed to an adaptive and functional curriculum from the early-childhood years, then she would have led a more fulfilling life and gained respect for being a contributing member of society. We can train Down syndrome persons like Chupsie to lead meaningful lives, as well as children with other cognitive disabilities. It's what I do every day. I do engender the thought of setting up special facilities in various areas in Jamaica to attend to such persons, from early in their development. They deserve better than to be carted off to relatives or centres far away. I do believe each individual with Down syndrome or any other disability is a valuable thread that needs to be woven into the fabric of our society. I wonder if an organisation like the Jamaica Teachers' Association could partner with the local Ministry of Education centres to see how best these 'children' can be properly facilitated. Such an undertaking could well change the face of Down syndrome in Jamaica. Melissa Bonnick-Anderson works in the Department of Special Education at Gwinnett County public schools in Georgia.

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