Cover Story
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Christmas photo of John (left) and the author taken in 2001. |
A daily blessing: Living with Down syndrome
By Francis Dee
A child at heart, Edward John is an innocent soul, and bringing happiness to everyone is what he does best. Shopkeepers, waitresses, and store managers alike light up at his ready smile when he enters their establishments. His humor captivates the whole family as he cracks one jokes after another in tandem with our collective laughter and support.
John is my brother. He is 23 and blessed with the gift of innocence: he has Down syndrome.
At 17, I have lived with John all my life; we even share a bedroom. This has molded my personality and changed my outlook in life.
He has grown to be my model because he has no complications and hang ups in life. John is a person of peace… he holds no grudges nor judges anyone.
He has taught me to have a stout heart, to be more forgiving and respectful of all. One can see it through the way he interacts with everyone: genuine.
In fact, he is quite sociable – more than I am! He loves being around people and is a natural. My mother takes him everywhere she goes: errands, luncheons, prayer meetings, exposing him to the real world, making new friends in the process.
I cannot stress the importance of his environment for his overall development.
As well, total acceptance and unconditional love from family and friends have given him confidence, far beyond what most of us have.
Speech therapy was of primary importance; he only knew a few words when he was three years old, but that didn’t stop him from learning to express himself. By seven, John could converse in complete sentences, surprising those he met.
John attended mainstream classes in a Montessori school from age three until 14. There he blossomed with the realization that he was no different from the others. He could sing, dance, create artistically, read and write, play with them and get into a little mischief.
From 14 years onward, he has been on a home school program to enhance his life skills and work towards independence.
Being six years younger than John, I take on the roles of being his younger and older brother at the same time. I look up to him as my role model and I also check on him as if he is younger.
He is a young man with a distinct sense of direction, likes his routine and does everything like clockwork in a disciplined manner.
We as a family bolster his self esteem by expressing love and support. I vividly remember an evening in a restaurant in San Francisco. It was crowded and the karaoke microphone was being passed around; each table had a chivalrous representative to share a song.
But no one wanted to steal the night and serenade us all…until John stood up with immense confidence and reached for the mike.
He pointed to the disc jockey and requested Dancing Queen by the Swedish singing group ABBA. On cue, with eyes of some 150 patrons on him, John sang the piece while swinging to the beat. He commanded everyone’s full attention now.
How the patrons applauded! As the song progressed, the room was swept away by a tide of good cheer and camaraderie. That boosted my brother’s self esteem and this got him to dance. The patrons started to sing along and everybody was so happy! It was a magnificent experience for John and most especially for all of us!
John is an example of what steady, loving support from the family can do to help someone with Down syndrome.
Many parents of babies with Down syndrome are confused and uncertain of what to do. The condition is associated with mild to moderate mental and physical impairments.
It happens in every 800 live births. It is caused by chromosome mutations resulting in chromosome 21 having an extra chromosome (Trisomy21). This gives someone with Down 47 chromosomes instead of the normal 46.
No one really knows why this happens. Contrary to some beliefs, it has nothing to do with the age of the pregnant mother, or anything she did during pregnancy.
The condition can be passed to future generations. This is Translocation, and happens with three percent to four percent of individuals with Down syndrome. On rare occasions, individuals with the syndrome inherit a number of genes from chromosome 21.
However, only a percentage of cells in the body inherit the traits, thus resulting in an individual with Mosaic Down Syndrome – the individual will not possess all the physical and mental traits of one with the full syndrome.
Various symptoms are associated with people who have Down syndrome. They generally are short, have low muscle tone, and learning and speech delays. Moreover, they also have congenital heart defects.
I love my special brother – he’s the best thing that ever happened to me!
The writer is a high school student at British School Manila, Taguig. – Ed.