World Down Syndrome Day 2021

“Accommodate not Isolate: We have a past, present, and future.”

What is Down Syndrome?

In layman’s terms, Down Syndrome is a condition that occurs when a baby is born with an extra set of chromosomes. It may be easy to simply know this much of it, but when it comes to truly understanding and including individuals with Down Syndrome in our day-to-day activities, it is necessary to know more so we can better support them. Each and every one of us has a set of 24 chromosomes that determine various genetic characteristics, however, those diagnosed with Down Syndrome they are given an extra set of one of these chromosomes (Chromosome 21). This minute change in the genetic structure of an individual affects many aspects of their lives from their ability to converse to even their IQ Levels. 

Although all Down Syndrome seems the same, there are three different variations of this genetic mutation: Trisomy 21, which is when every cell of the individual’s body has 3 copies of Chromosome 21, rather than the usual which is 2 copies. Translocation Down Syndrome is when an extra part or the entire 21st Chromosome is attached to another chromosome and finally, the last type is Mosaic Down’s Syndrome, where the mutation is only present in some of the individual’s cells – this means that these individuals will not experience the full effect of Down Syndrome, rather have effects based on the percentage of cells in their body with the mutation.

What it means to live with Down Syndrome?

The most common and visible features that individuals with Down Syndrome have are reduced heights and flattened facial features, especially the nose. However, there are more physical symptoms such as:

• Decreased or poor muscle tone
• Short neck, with excess skin at the back of the neck
• Small head, ears, and mouth
• Upward slanting eyes, often with a skin fold that comes out from the upper eyelid and covers the inner corner of the eye
• White spots on the colored part of the eye (called Brushfield spots)
• Wide, short hands with short fingers
• A single, deep, crease across the palm of the hand
• A deep groove between the first and second toes

Apart from these physical features, individuals suffer from a wide range of other complications such as, lower IQ, difficulty to speak and delayed speech development, impulsive behaviors and short attention spans.

Down Syndrome in Society

Despite the advances seen in the general management of Down Syndrome, there is still a lot of stigma against this condition. For many years, individuals with Down Syndrome were institutionalized, however recently they are beginning to be accommodated within regular school curriculums as well.

Individuals diagnosed with Down Syndrome tend to have impulsive behaviors and short attention spans, thereby portraying behavior that is usually considered inappropriate and which would require disciplining. However, when dealing with kids with the condition it is important to give them utmost attention and care, and not giving them something that they want would only make way for more tantrums and them being stubborn in the future. 

Although the world is advancing in the knowledge of Down Syndrome and is trying to accommodate kids with Down Syndrome in regular schools, Sri Lanka is way behind on any of these developments. However, there are some Centres such as the Jinendhi Resource Centre For Down Syndrome in Kandy, Sri Lanka that focuses on Education, Advocacy, Family Support, Counselling and Teacher Training for children and adults with Down Syndrome. Thereby employing methods to allow them to integrate within our already present system, they require minute changes such as a quieter environment with fewer distractions, bigger fonts on their books and worksheets, bigger spaces for writing and less clutter in their educational materials. Including these small changes would ensure that kids with the condition can still go to regular school, move around regular kids and be well integrated into society.

References:

1. Bull, M. J., & the Committee on Genetics. (2011). Health supervision for children with Down syndrome. Pediatrics, 128, 393–406.
2. Down syndrome. (2012). In A.D.A.M. Medical Encyclopedia. Retrieved June 11, 2012, from https://medlineplus.gov/ency/article/000997.htm
3. Ulrich, D. A., Burghardt, A. R., Lloyd, M., Tiernan, C., & Hornyak, J. R. (2011) Physical activity benefits of learning to ride a two-wheel bicycle for children with Down syndrome: A randomized trial. Physical Therapy, 91, 1463–1477.
4. CDC. (2012). World Down syndrome day. Retrieved June 11, 2012, from https://www.cdc.gov/ncbddd/birthdefects/DownSyndrome.html. 
5. Jinendhi Resource Centre For Down Syndrome: http://geyef.org/jinendhi/index.html.