By: Lakshmi Kothaneth
MUSCAT: The Down Syndrome Parent Support Group in Oman will officially be known as the Oman Down Syndrome Association from March 21. The logo and the name will be officially announced at the event to mark the World Down Syndrome Day (WDSD) at a celebration to be held at the Sawadi Beach Resort and Spa. The parents support group for children with Down Syndrome was formed in 2003, and then reshaped itself again in 2006, and at present has eight elected parent members.
The parents are excited that the official status of the group as an association registered by the Ministry of Social Development is going to spearhead new ideas and projects.
Ahmad Mohammed al Jabri, Chairman of Oman Association for Down Syndrome, said: “Being a new association will enable us to have our own credible organisation independent of being attached under the umbrella of another body and one where we can set the rules and missions for the future goals of children with Down Syndrome.
The association will bring one common goal of sharing knowledge in different ways and where learning takes place according to the individual needs of the child including improving their speaking, communication and general skills.”
synHe added: “We welcome all individuals with this syndrome although the focus has been mainly on younger kids as they have been the ones to enter our group. So far no adult has been registered with us. A possibility being that their families are unaware that out association exists.
“Having said that each case will still be looked at thoroughly with a proper evaluation being made before any commitment is made. We strive for positive outcomes for the benefit of the person having Down Syndrome.”
“This event is being held with the primary objectives to promote and increase awareness of Down Syndrome in Oman, to support children and families of those children with the syndrome, and to host a fully sponsored fun day for all children and families,” Ayesha al Raisi, event organiser.
The United Nations have been observing March 21 as the global awareness day for Down Syndrome since 2012. The date for WDSD on the 21st day of the third month was chosen so to signify the uniqueness of the triplication (trisomy) of the 21st chromosome, which causes Down Syndrome. According to www.downsyndromeoman.com, it occurs in approximately one in every 800 live births with the recent statistics in Oman pointing out one in 400 births.
It is also considered as the most frequently occurring chromosomal disorder. Individuals with Down Syndrome have 47 chromosomes instead of the usual 46.
But societies have brought in vast development where individuals with Down Syndrome can contribute to the society with the assistance of speech therapists, sign language teachers, special needs teachers and physiotherapists.
Until now they have been operating under the umbrella of the Association for Early Intervention.
According to Zuwaina Hilal al Barwani, a parent member, at the moment they have just started with children. Almost 220 children are registered at the centre which is to be announced as an association this weekend. “The centre used to get specialists because early requirements are for speech and physiotherapists. At present our physiotherapist is also looking into the area of occupational therapy. Once recognised as an association and have our own premises we will be able to get more support and internally we can have more resources for the children. Once the association begins its operations we can have a specific program for adults.”
Some individuals with Down Syndrome are working at supermarket counters.
“The only thing is that we want public acceptance. Some families are still hiding their children because they do not know how the public will handle the situation. It is not all parents but some still have the fear of the reaction,” said Zuwaina.
She pointed out that the children with Down Syndrome can be very talented and can be very responsible and be contributing members to the family and society once given the right training and opportunity.
SOURCE: OMAN DAILY OBSERVER