Ho Wai Keen performing on the
violin.
The Star Online > Lifeparenting
Thursday April 13, 2006
Standing tall
People with Down Syndrome worldwide have made March 21 their day of recognition and awareness, reports M.L. WONG.
MARCH 21 was chosen to signify the uniqueness of Down Syndrome in the trisomy or triplication of the 21st chromosome. This means that instead of just a pair or two strands of the 21st chromosome, people with Down Syndrome have a third strand of this chromosome. It is this extra chromosome that results in the characteristics associated with Down Syndrome, from similar facial features to certain health and mental conditions.
| |
|
Ho Wai Keen performing on the
violin. |
For me, World Down Syndrome Day marks the coming of age of Down Syndrome in Malaysia.
Eighteen years ago, when my paediatrician explained to me about my son’s mongoloid features, there was an air of finality about it.
I was told that I have a child with special needs. But I was not offered any kind of support. I was just told to take him home and handle him with tender loving care.
Today, a new parent can either go online to source for information or approach organisations like the Kiwanis Down Syndrome Foundation. This is a far cry from the scenario a decade or two ago when information was scarce and support systems even fewer.
It was an emotional struggle to raise a special child then, mainly because we did not really know what to do or what to expect in bringing him up.
Fortunately I found a role model when Life Goes On was aired over TV3 in the early 1990s.
The ABC show Life Goes On starred Chris Burke, a teen with Down Syndrome, as Charles “Corky” Thatcher.
Apparently Life Goes On was created after Burke landed the role of a boy with Down Syndrome on the ABC movie Desperate. His work so impressed the network executives that the show’s producer was asked to write a show with Burke in mind. Life Goes On, which earned Burke a Golden Globe nomination, aired on ABC from 1989-1993.
The critically acclaimed drama series was inspiring and put a face to Down Syndrome. It showed me a future where children with chromosomal disorders can grow up into teens with normal feelings, fears and achievements.
It was good to follow Burke and know that after the four-year show ended, he went on to perform with his two friends and music mentors Joe and John Demasi at concerts, schools, festivals, conferences and conventions. He even cut a few albums including A World of Kindness, released in 2002.
And we do see him in his role as Taylor, the angel of faith, on the hit CBS show Touched By An Angel.
Another inspirational role model from the special world is Sujeet Desai.
Born in New York, the young musician was invited by the Kiwanis Down Syndrome Parent Support Group to come to Malaysia and perform at Krystal Ballroom, Hilton Petaling Jaya, in 2000.
Sujeet was articulate and confident, and could play four instruments – violin, piano, clarinet and bass clarinet – with ease.
Sujeet eventually graduated from Fayetteville-Manlius High School in Syracuse, New York, and was on the honours roll. He was the first special education student inducted in the Oak Chapter of FM High school as a National Honour Society member which, by the school’s standards, is pretty special.
Come July, Sujeet and his Down Syndrome fiancée Carrie Bergeron, will be getting married. Sujeet, 24, and Bergeron, 29, are planning to settle down in Rome.
On March 21, I realised that our children with Down Syndrome have come of age and we now have role models of our own.
Charmaine Chan gave a stirring speech at the World Down Syndrome Day celebration at Subang Jaya Medical Centre. The 16-year-old was clear and concise in her message: let special needs children take their place in our society – without fear, pity or charity.
And it was a joy to watch her handle the press interviews that followed with poise and confidence.
We also have our own musician Ho Wai Keen, 15, who gave a beautiful violin performance at the same event. For parents of special children like me, the joy is not just in watching him perform but also in seeing the responsibility he displayed in taking care of his equipment, before and after the event.
Down Syndrome in Malaysia has come a long way indeed as seen in the support new parents today can expect from NGOs like the Kiwanis Down Syndrome Foundation and the Malaysian Down Syndrome Association.
As I sat in the audience and watched the commitment and enthusiasm that the parents showed in organising the event, I could not help thinking that this was a definite sign that parents are now more willing to come forward and acknowledge that they have a special child. They will be the role models for new parents with special kids.
Information on Down Syndrome is available from the following websites;
Kiwanis Down Syndrome Foundation
http://www.kdsf.org.my/
E-mail: info@kdsf.org.my
Persatuan Sindrom Down Malaysia
http://www.mysindromdown.org/, http://www.sindromdown.org.com/
E-mail: rumahPSDM@yahoo.com, psdm@tm.net.my
Penang Down Syndrome Association
http://www.dsapenang.org/
E-mail: dsapenang@dsapenang.org
Kumpulan Sokongan Sindrom Down
Email:chitchatsc@yahoo.com
Kiwanis Disability Information & Support Centre
http://www.disabilitymalaysia.com/
One Voice is a monthly column which serves as a platform for professionals, parents and careproviders of children with learning difficulties. Feedback on the column can be sent to dignity@tm.net.my For enquiries of services and support groups, please call Malaysian Care at 03 90582102 or Dignity & Services at 03-7725-5569.