In Nigeria and elsewhere in the world, people affected with Down Syndrome are naturally seen as individuals with disabilities and often times disregarded and discountenanced by their parents, family members and even the society at large. Students are discriminated against, especially in terms of education and employment opportunities.
Down syndrome (DS or DNS), also known as trisomy 21, according to Wikipedia, is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is typically associated with physical growth delays, characteristic facial features, and mild to moderate intellectual disability.
Explaining how the condition usually occurs, the National Down Syndrome Society, says in every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.
Down syndrome students enrolled in schools along with their kind do better than the normal child without disabilities. But unfortunately, nowadays, parents, particularly the educated ones, are shy to train their children born with such a condition
This additional genetic material, the NDSS further notes, alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm – although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all. Essentially, this condition causes physical and mental developmental delays and
disabilities.
So, educating the students of the condition and even providing employment opportunities for them after graduation from school are not without their challenges for the individuals themselves, their parents, family members and society at large. Providing better employment opportunities for the individuals with Down Syndrome, who have surmounted the hurdles of acquiring education, is usually a herculean task.
Investigations by our correspondent have revealed that children with Down Syndrome are happier when they are in the midst of their kind and also have the tendency to do better in such an environment.
Also, Down syndrome sufferers enrolled in schools along with their kind do better than the normal child without disabilities. But unfortunately, nowadays, parents, particularly the educated ones, are shy to train their children born with such a condition.
In the course of our correspondent’s investigations, the mother of a Down syndrome student, who pleaded anonymity, disclosed that a neighbour’s child suffering from Down syndrome was abandoned by her mother in the village.
She said, “I have a child with Down syndrome but he does better than I have imagined. I was able to send him to school with his mates and he is happy, but I weep for those who neglect theirs.
“A neighbour gave birth to a child like that and it was the woman that ran away. Normally, the husbands reject them. But the woman abandoned her child. The husband got married to another woman, who did not accept the child. The child is over 40 years now in the village. It was too late for them to train the child because they thought she would amount to nothing. But when they saw my child, they were shocked. My son is doing well now.”
A Down Syndrome graduate, Awele Mordi, in an interview with our correspondent, expressed delight that she was able to find her feet inspite of her challenging health condition.
According to her, she will want to become a lawyer, but because of her condition, she has to work for the Down syndrome Foundation, where she’s more useful, effective and happy.
Awele said, “I work for the Down Syndrome Foundation as Mrs. Mordi’s personal assistant. I make chin-chin, cookies, and more. I am into photography and I can paint.
“I am also into makeup. I schooled abroad. I want to be a lawyer. But in as much as I want to be a lawyer, I am still happy working with the Foundation. My siblings are outside the country. I also make beads.”
Another Down Syndrome student, who is, however, very talented, Solomon Omere, said he’s happy being with his peers in school.
Omere, who is a primary six pupil, won a medal after featuring in a basketball tournament in London. He is also a budding actor, who has featured in the popular Wale Adenuga production.
He has also learnt how to bake and can now make some confectionaries.
“I can dance very well and I love dancing. I am in primary six. I make cakes, puff-puff and chin-chin. I play basketball very well and I won a FIBA medal in London. I am happy with my friends around me. I want to become a boxer in future,” he added.
They’re not reckoned with in Nigeria -Down Syndrome Foundation president
On how she was able to raise her own child, who also lives in the same condition, the National President of the Down Sydrome Foundation, Mrs. Rose Mordi, said, “I would want to believe that my personal experience as a mother with a child with such a condition made me to develop passion for special students. I wear the shoe and I know what other parents go through.
“Raising my child was challenging because of this part of the world that we are in. There are so many superstition, poverty and lack. You find out that you will meet challenges all the way trying to put them together. They are a lot of discouragements from the family, the society, within and without. It is numerous but because I am someone that is very determined; I am more determined when I meet challenges. I thank God because with all the challenges, there are a lot of success stories to back it up.”
She said her experience encouraged her to take it upon herself to see to the well-being of other children in such a condition, especially since most parents neglect and even often treat them as outcasts.
She said, “What I did initially to get parents of these children to bring them to school was to go on air, go to churches and other major bodies, asking them for permission to talk about it. I made fliers for schools, hospitals and more. I encouraged parents to come in for counselling because Down Syndrome patients are predisposed to medical
challenges.
“In the past, many of them did not live long because they were not attended to on time. Our first plan was to address the issue of these children so that they would be taken to hospitals to avoid them being exposed to medical issues. This was how I was able to get parents.”
Mordi disclosed that only the poor parents brought their children to her because they needed help while the educated ones did not deem it fit to send theirs in such a condition to school.
She said, “Few parents were able to come out. Majority did not come out maybe because of shame. Particularly, the educated ones refused to come out, the elites refused to come out. Apparently, it didn’t sit well with their image. They did not want to be seen with a child who has disability.
“The poor and those who needed help were the only ones bold enough to come out. I must say that even up till now, we have quite a few elite coming out that they have a child with disabilities. Failure is an orphan but success has many friends and brothers. When we started, nobody seemed to reckon with us, but now that they have seen what the children are doing, a lot are now turning
up.”
The Down Syndrome Foundation boss said that she had to go for medical training to be able to effectively help these children to grow.
“Educationally, I can confidently say that I am more aware in the medical field than most professional medical people. I have attended so many seminars all over the world. I know the best practices. A lot of our medical professionals rely on their old knowledge but every year, there are new breakthroughs, new researches and lots more, which most of them do not even know. I am abreast because every year, I attend a minimum of two to four training sessions outside of this country and I learn the best practices. I am an administrator professionally, but I have learnt so many things in the medical sector,” she said.
Speaking on the challenges confronting these special children, she accused most Nigerian corporate and industrial organisations of refusing to reckon with graduates suffering from the Down syndrome.
“My daughter is 31years. So, I would say I started this school barely 31years ago. Yet, we do not have anyone of them that has been gainfully employed in Nigeria, but we have those employed outside the country. We have been speaking to the authorities to recognise them in Nigeria but we have not got approval. Five of our kids have graduated and we have written out letters to organisations to allow them to work.
“We have trained so many of them to be caterers and many more. There is a young man, Solomon, who went to London for a Basketball competition. He came back with a medal. He is also a Nollywood star, having featured in one of the Wale Adenuga’s series. He was a star actor in the movie because the story line was written about a young man with Down syndrome. They came to us that they wanted someone to act or if they could get someone who would pretend to be in such a situation. We told them we had one; he acted it.”
She said she had to recruit some of the graduates into working for the Foundation on salary, since they had yet to be accepted by the employers of labour in Nigeria.
“The five of them have graduated; so we employed them to work with us. One of them is a receptionist, one works as my personal assistant and the others work as classroom assistants. They all collect salaries. We hope that very soon they would be given the opportunity to work here in Nigeria,” she said.
Mordi also disclosed that the special people get married amongst themselves, maintaining that they were happy to live together as husbands and wives.
“We have a few of them who just got married. Although they have not got any children, they are together,” she said.
The Down Syndrome Foundation boss further disclosed that the organisation got much of its sponsorship from foreign charity bodies, adding that this had helped them move to their permanent site in Fagba, Lagos.
Quote: Down syndrome sufferers enrolled in schools along with their kind do better than the normal child without disabilities. But unfortunately, nowadays, parents, particularly the educated ones, are shy to train their children born with such a condition
