On the occasion of World Down Syndrome Day, which falls today, March 21, ‘T Weekly’ discusses with caregivers, volunteer organisations and parents in Oman to find out how they address Down Syndrome and what’s being done to ensure for them a happier, fuller lives.
Sometimes, it’s easy for us to take for granted just how lucky we are to live completely normal, ordinary lives. We always aspire to do better, aim to provide a better life for our children, so that they do not have to endure the same hardships that we did, and in turn provide better opportunities for those who come after.
But truth be told, many of us are blessed with faculties that have been sadly taken away from others through no fault of their own.
While most babies are typically born with 46 chromosomes, the little ones who are born with Down Syndrome (DS) have an extra copy of their 21st chromosome. To the children who grow up with this genetic condition, simple things such as taking a walk, talking to someone or even going to the toilet is an arduous challenge that requires plenty of patience, time and dedication for them to learn to do this properly.
Down Syndrome is a lifelong condition. Services early in life like speech, occupational and physical therapy will often help babies and children to maximise their abilities and to reach their full potential. Children with DS may also need extra help or attention in school, although many children are included in regular classes.
Medical studies have shown that the prevalence of Down Syndrome increases with the mother’s age.
We spoke to Zuweina Al Barwani, a senior member of the Oman Down Syndrome Association, to find out what life is like for children with DS and their parents. “Down Syndrome is a condition where you have an extra chromosome, particularly the 21st chromosome,” she said. “Normally, it is duplicated, but for Down Syndrome, it is tripled. It is not yet known why this could be; there has been a lot of research done in this area, but until now, the exact cause is not known.
“It shows in the face, when the child is born. The child has diamond-shaped eyes, and the nose and hands are also affected, so the doctors will know straight away,” added Al Barwani. “There are tests that can be done to check a child for Down Syndrome when still in the womb, and you can also find out through MRI scanning.”
The Down Syndrome Association was started back in 2003, when there were not enough facilities in Oman for parents whose children had the condition. Herself a parent of a DS child, Zuweina has been very active with the group, whose aim is to provide more information about Down Syndrome, raise awareness and provide other parents with support. Simple services like speech therapy, physiotherapy, and special needs teachers are also available.
At the beginning, the Down Syndrome Association had to work under the umbrella of the Association of Early Intervention for Children with Special Needs because, as an unregistered association, they could not operate alone. They raised their own funds and arranged for part-time specialists to come in on a weekly basis to help the children who needed assistance.
“ Many people say that the children are suffering from Down Syndrome, but they are not suffering – it is not an illness, it is a condition,” revealed Al Barwani. “There is no medication that you can get for this. They are born with this condition and they will remain as they are. But the truth is that they are very loving and kind.”
Al Barwani, a mother to three children, first found the Down Syndrome volunteer group in Oman shortly after her middle child, Roya, was diagnosed with the condition. Although her genetic disorder did initially come as a shock to Zuweina, she has credited the Oman Down Syndrome Association for providing her with invaluable help when she needed it the most.
“At the beginning, when I found out I had a daughter with Down Syndrome, of course, it was a shock,” recalled Zuweina. “I didn’t know much about it, just like anyone else. I had to learn quickly and find information about the condition. I was so worried about her...would she learn? What would happen to her? What is her future? All of that was in my mind. It was then that I found the support group; they gave me a lot of reassurance and help.
“My daughter, Roya, she grew up well, by the grace of God, she is well, and she is my favourite – I don’t want to say that, because her siblings will be jealous – but even her siblings are very fond of her,” she added. “I have a daughter who is older than her and a son who is younger. Roya goes to a rehabilitation centre, she loves school and she is very sociable . She attends different activities – she goes horse riding, she enjoys roller skating, and last March, she went to the Special Olympics in Abu Dhabi, where she came back with two silver medals – I was so happy about that!”
Zuweina’s advice to those who are unaware of Down Syndrome and the problems that arise because of it is to forget any stereotypes or prejudices one has about DS, and think about how important it is for children with the condition to learn. She urged people to give children and their families the support they required, in addition to encouraging them to engage in activities that helped stimulate their minds.
“The most important factors for a Down Syndrome child are speech and physiotherapy,” she explained. “When they are tiny, they are floppy and unbalanced. They experience delays in walking and crawling so a physiotherapist working with them is essential. DS children also need special materials in school as they learn more through visual aids such as pictures or signs. Roya learned really well when she associated signs with sounds, for example”.
“I would say that she is mentally younger than her age. She likes to play with younger children, but we are trying to encourage her to mix more people of her age,” she added.
“I try to tell her that she is growing up now, and it is time for her to leave aside her toys and one day, she told me, “Mama, today I have had enough. I am throwing all my toys away because I am a big girl now” According to the World Health Organisation, children who suffer from Down Syndrome often develop other health problems too.
The estimated incidence of Down Syndrome is between 1 in 1,000 to 1 in 1,100 live births worldwide. Each year approximately 3,000 to 5,000 children are born with this chromosome disorder. 60 to 80 per cent of children with Down Syndrome have hearing problems and 40 to 45 per cent have congenital heart disease. Intestinal abnormalities also occur at a higher frequency in children with Down Syndrome and they often have more eye problems than others.
Nutritional aspects can also cause concern in children with the condition as, while some fail to thrive in infancy, obesity is often noted during adolescence and early adulthood. These conditions can be managed by providing appropriate dietary counselling and guidance. Thyroid dysfunctions and skeletal problems have been noted at a higher frequency in DS children as well as other important medical issues including immunologic concerns, leukaemia, Alzheimer’s disease, seizure disorders, sleep apnoea and skin disorders - all of which may require the attention of specialists in their respective fields.
“Any parent worries about their child’s future: who will take care of our children if we were to die? Will they be able to go to school?,” said one parent, who did not wish to be named. “Once the children are older, we parents then worry about their adaptive skills, their learning issues, their skill development, things like that. As a parent of a child with such a condition, you are going to worry about their speech, their toilet training and a million other things.”
However, while providing aid to children who have Down Syndrome is vital, reinforcing their support structures is equally necessary. Often, it is the parents of these children who bear the brunt of the responsibility of taking care of their child’s special needs. This can be overwhelming at times and, to help parents deal with this in the right manner, the Psychology of Youth Volunteering Team recently decided to set up programmes that help parents learn how to look after their own mental health.
“ We started this programme recently because we saw that parents who require to do a lot to help children with health issues are more likely to face mental health concerns themselves,” said Abeer Al Mujaini, a psychologist with a degree from the University of Edinburgh, and the co-founder of the Psychology of Oman Youth Volunteering Team. “We don’t help the children directly, but we do provide support for parents to help them manage anxiety, depression and stress. Some parents have trauma issues, because of the way in which the news that their child had Down Syndrome was broken to them.”
“This is an holistic approach that teaches them how to take care of themselves, because a parent’s mental health will have a direct impact on a child’s development,” she added. “If the parent is not okay, then they won’t manage the child well, and its development will be affected. The source of energy here is the parent. We get a lot of parents who say ‘I have no time for myself’ : they get burned out and so stressed and overwhelmed that, in the future, they might be prone to more health problems, more depressive symptoms, and they might develop a mental health disorder. So we tell them that they have to find time for themselves and relax. You cannot fix the child in a day, but a day for yourself might make a difference for a whole week.”
Abeer explained, “We also organise a support circle for them. We are not teaching them through this, but rather are enabling parents to learn from other parents. For example, if you have a mother who has had a child with Down Syndrome for 20 years, you can learn from her how she dealt with her anxiety and her child. This group therapy helps, because you can learn how someone else experienced what you are going through and how they coped, rather than from a psychologist: we always don’t know what it’s like for a parent. We are not in their shoes.”
P.S. Lakshmi Sarkar, a senior occupational therapist at Khoula Hospital, has been for many years now actively helping children who have the condition, and told us about the different exercises she planned for them.
“ In DS there is impairment in all three areas of physical, intellectual and cognitive skills, and we normally deal with the cognitive aspect and the social skill development,” she said. “Usually, Down Syndrome children are very friendly and approachable people, but in schools, they sometimes wonder about how acceptable they are and that makes them nervous. We look into social skills, and train them to develop their academic skills. The therapy also includes fine motor skills, because there is a lot of laxity in their muscles and joints.”
“Occupational therapy is all about healing through activity, and our activities depend on what the child will need to develop at that moment,” added Sarkar.
“For example, if the child needs to learn how to use a spoon or a knife, then our activities will see us give the child something similar or we will do a lot of exercises with different objects of varying sizes and shapes. Fortunately, Down Syndrome can be detected during antenatal screening time, and the features are so evident that it can be established in about three or four days. The parents are counselled at that time, so from the first day onwards, they are geared up for it. We start working from day one, where we teach the baby how to achieve rolling, crawling, sitting and standing, so we work right from that stage onwards.”
Sadly, those who do have this condition are also met with prejudice and stereotypical assumptions from people who have not educated themselves or do not understand the problems faced by both those who have Down Syndrome and their families. Zuweina Al Barwani, however, urged people to help dispel these stereotypes by coming together and learning from each other.
“The stigma exists due to ignorance, a lack of information and awareness,” she admitted. “We try to raise awareness, but we need to get people to be interested in Down Syndrome and other such conditions. We are trying to do a lot of events, and we work with schools. Al Sultan School have done a lot of events for us, and one of the American schools has helped us out as well. We are also trying to reach out on social networks at the moment”
“We have a centre in Azaiba, where we welcome anyone to come and visit the association,” she said. “If they want to volunteer with us, we would be very happy. We would ask everyone, not just families and friends to take an interest in learning more about Down Syndrome. I am sure that once you get to know a child with Down Syndrome, you will not find it easy to let go.”
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