They are down but not out…they are slow but steady…they are full of hope for a better tomorrow. Individuals with Down Syndrome in Oman look forward to a more inclusive society in the near future – a society where they have ample opportunity for education, vocational training, employment as well as the freedom to live life on their own terms.
Today (March 21) is being observed internationally as World Down Syndrome Day (WDSD) to raise awareness about this genetic disorder. Celebrations to mark this day in Oman, have, however, been reserved for the coming weekend (March 25) to ensure maximum participation.
The day – the 21st day of the third month – was selected by the United Nations to signify the uniqueness of the triplication of the 21st chromosome – trisomy 21 – which causes Down Syndrome, a genetic condition that causes delays in physical and intellectual development. Normal individuals have two copies of the 21st chromosome while the presence of a third copy of chromosome 21 causes conditions typical of Down Syndrome.
Down Syndrome (DS) is the most frequently occurring chromosomal disorder that occurs in approximately one in every 800 live births. However, recent statistics in Oman show its incidence to be one in every 400 births. Individuals with DS have 47 chromosomes instead of the usual 46 and it is not related to race, nationality, religion, or socio-economic status.
Disclosing this, the Oman Down Syndrome Association draws attention to the fact that, apart from experiencing developmental delays, individuals with DS also have many talents and gifts and should be given an opportunity, as well as encouragement, to develop them.
The association states that early intervention services should be provided shortly after birth for those with DS. These services should include physical, speech and developmental therapies.
The Oman Down Syndrome Association, which was started in 2014, is a voluntary, non-profit organisation that organises special training sessions and classes for children with Down Syndrome till they reach adulthood, so as to help them achieve normal linguistic and social development.
The association will be celebrating World Down Syndrome Day on March 25 at the farm of Sheikh Saleh al Maskary, in Falij Barka, between 4pm and 8pm. The event will be for children with DS and their families, and will include fun and games with cartoon characters, jumping castles, birds and parrots shows, live cooking demonstrations of traditional food, horse and pony rides, games, face paintings, and more.
The celebration has been postponed to the weekend to ensure maximum participation and to make it convenient for family members of individuals with DS to attend in large numbers.
Key queries on Down Syndrome
Ahmed Mohamed Hamed al Jabry, founder and chairman of Oman Down Syndrome Association, points out that internationally the birth prevalence of DS is estimated to be 1 in 600 to 1 in 800. However, as per studies carried out by the Ministry of Health in 2011, it was noted that in Oman, the incidence was 2.4 among 1000 births – that is around 1 in 400 births and around 120 cases per year.
What could be the cause for the high incidence of DS in Oman?
Studies conducted have not shown that blood-related marriages are a factor in babies being born with DS, although one of the most important risk factors of DS is advanced maternal age. A case control study showed that the mean maternal age of DS mothers was 33.50 years.
Maternal age-related risk factor alone, however, cannot explain the unusually high DS birth prevalence in Oman. Interestingly an earlier study conducted showed statistically significant differences in the occurrence between different geographical regions in Oman, he said.
What can be done to bring down the incidence of DS in Oman?
As DS is not a drug or abuse of health/physical well-being related cause, bringing down the incidence is insignificant. It is the will of God that our kids are born with DS and as such we must look forward on how we can improve their lives with similar fair opportunities that are bestowed on individuals born without a disability.
How could we improve awareness on DS in Oman?
Unfortunately, people with down syndrome are often still not included but they have the right to take part and be included. We must be bold enough to ensure ‘inclusive participation’ starting with education guidelines to be further developed in alignment with international standards to improve the availability and quality of education. We also need to provide employment opportunities to support those with DS to gain paid employment in open, inclusive and accessible environments. There is an Egyptian TV presenter – Rahma Khaled – who has this opportunity and has proven that it is possible.
We could develop and regularly publish (bi-lingual) real-life articles on achievements of persons with DS and have regular documentaries (TV, Radio, Social Media coverage) presenting the abilities of those living with DS in Oman. This coverage should include showcasing best practices related to the inclusive employment of persons with DS and/or best practice teachings developed to teach kids with DS Oman.
How does one tackle the social stigma associated with DS in Oman?
Sadly, some parents still believe having a child with DS is shameful. Some keep their children hidden away from others. Some go as far as ensuring the little contact the children have with others outside their immediate families is mostly with the housemaid. We must ensure improved communication between parents, family, community, and the health system. This can increase the satisfaction and the well-being of both, the children with DS and their parents.
Is there need for more school/institutions to educated DS individuals and make them independent?
A few studies were earlier conducted in Oman to determine the causes of the rise of cases of babies being born with DS and as a consequence understand to introduce more opportunities for those with DS. Special schools around the country exist as do special classes within mainstream schools.
Teachers have been and continue to be trained in this specialist area. I believe post school age and into adulthood is where we must also focus our attention as a nation as many, if not all, individuals of this age range are sitting at home with no active stimulation to develop their further cognitive abilities. Adults with DS in other countries are working, driving, marrying, living independently from their families, albeit in assisted accommodation.
What is your message to people in Oman on this day?
The Oman Down Syndrome Association is a non-government organisation that requires the community to work as one hand to guarantee those living with DS to be included into society from a young age. Let us look beyond the diagnosis and we must not be afraid to celebrate our children – they are, first and foremost, individuals who just happen to have Down Syndrome.