It’s about nine years since the United Nations General Assembly declared March 21st of every year as World Syndrome Day, with effect from 2012, and invites all Member States, relevant organisations of the United Nations system, and other international and non-governmental organisations, as well as the private sector, to raise public awareness for, and observe Down Syndrome day in an appropriate manner.
It is really an unpleasing thing for a child to be denied of his/her right even before birth. But as unpleasant as this may be, it is the reality of many children with Down syndrome. Research statistics have also revealed that the estimated incidence of Down syndrome to be between 1 in 1000 to 1 in 1100 live births globally.
Down syndrome is a genetic disorder which occurs when there are extra sets of chromosome 21 in an individual which alters the course of development and causes the characteristics associated with the syndrome.
The origin of Down syndrome is traced back to English physician, John Langdon Down, who was the first to identify the external appearance of the genetic disorder in 1862 while working with a group of patients. Until then, nobody had identified this special group and over the next 20 years, he referred to the genetic condition as Mongolism and used the word “Mongolian/Mongoloids” to describe those whom we would now call people with Down’s syndrome.
Later in 1961, nineteen international experts which included Down’s grandson, Norman came together and wrote to the Lancet proposing that the name should be changed to Down’s syndrome. The World Health Organisation (WHO), then at the request of the People’s Republic of Mongolia, accepted and adopted the recommendation in 1965, thereby giving Down syndrome a global awareness and recognition. Normansfield in Teddington, South West London became the home where Langdon and his family used to cater for the needs of people with Down syndrome and others with learning disabilities.
Down syndrome is categorized into three types which are Trisomy 21 (non-disjunction) accounting for 95% of cases, Translocation which accounts for about 4% of cases, and Mosaicism which accounts for about 1% cases and against popular opinion, Down syndrome is the most commonly occurring chromosomal condition.
The Myths and the Truths about Down Syndrome
There are many myths that exist today concerning Down syndrome and those living with it. Here are a few common myths and their opposing realties:
Myth 1: Down syndrome is hereditary
Reality: Only 1% of all cases of Down syndrome are hereditary against popular belief. Translocation, a type of Down syndrome which accounts for 3 to 4% of all cases, is the only type of Down syndrome known to have a hereditary component and only one-third of those succeed.
Myth 2: Down syndrome children are born to older parents
Reality: Research has shown that most children with Down syndrome are born to women younger than 35 years old. However, the likelihood of having a child with Down syndrome tend to increase with the age of the mother, especially after the age of 35.
Myth 3: People with Down syndrome have a severe mental disability
Reality: The majority of people with Down syndrome have a moderate cognitive or intellectual disability. This is not indicative of the length of time it might take a person having a disability to learn, speak or get things done.
Myth 4: Students with Down syndrome can only learn through segregated special education programs
Reality: The current trend in education for students with Down syndrome is for full inclusion in social and educational settings by including them in typical academic classrooms in schools across the country as every other students. However, they are sometimes included in special courses but the truth remains that individuals with Down syndrome get educated and graduate from high school with distinction and as well participate in other extra-curricular academic and college programs.
Myth 5: Individuals with Down syndrome are not socially active in the society
Reality: People with Down syndrome are not only active members of the society participating in educational, social, and recreational activities, but are also valued members of their families and communities who make significant contributions to the society. Importantly, they also take up job roles in different corporations such as banks, hotels, hospitals, and restaurants, and are also found working in the entertainment, sports and the ICT industry, to name a few.
Celebrating and caring for children with Down syndrome
Are you raising a child with Down syndrome or you live with/around one? Living with a child with disabilities can sometimes be hard, but sometimes it’s not and when you realize this, you realize it is true for all children. What every child needs is a true mother’s love, which is not based on a child’s ability, but on your own ability to accept and give love.
Down syndrome affects all people differently, and as a result, they all have their own unique needs. When a baby is newly born, their caregivers can’t know exactly how Down syndrome will affect them until they begin to grow and develop. This is when their caregivers begin to understand their strengths and weaknesses, and will ultimately be able to better meet and support their needs.
Children with Down syndrome have differing needs such as heart defects, vision differences, hearing loss, feeding difficulties, thyroid differences, autism, seizures, and learning challenges. However, these needs and challenges are to varying degrees. Some children tend to experience multiple health or developmental challenges, while others may have or experience them to a milder degree. What is important is that they are seen first as children and not as children with disabilities. They need what all babies and children need – love and support.
It is therefore important to provide children with Down syndrome with an enriching and overwhelming love environment so they can grow to become significant adults in their communities, especially in this critical time when the world is faced with a viral epidemic in COVID-19. Be patient with them, encouraging and supporting them every step of the way. They are more like all of us than they are different. What makes them unique is about who they are as individuals, and not really about their diagnosis.
We hereby encourage all our friends and partners all over the world to join us in raising awareness for what Down syndrome is really about, while we also create a unique voice for advocating rights, importance, inclusion and wellness of people with Down syndrome in our lives and in the society we live.