There is a special group of people across the world. Regarded as a special few, theirs is not as a result of an absence of anything, but having an extra copy of chromosome 21. You may know them for their face slightly flattened, short neck, eyes the shape of an almond slanting up, ears sometimes as tiny as those of a baby, and that single iconic line drawn across the palm. For some others, their cute and tiny fingers curving inward the palm and tongues that stick out are ways to identify them. For centuries, this group suffered a social stigma by a society that lacked knowledge. The condition is better known as Down syndrome.
While the world has gradually gained awareness of understanding the uniqueness and special traits of individuals living with Down syndrome, there’s still a long way to go. As we mark World Down Syndrome Day today, March 21, we speak to some parents who have continued to stand by their kids and walk the path with them, as well as expert opinions and advice on dealing with Down syndrome. The story of two women caught our attention.
“My daughter understands so much, but can’t verbally communicate her feelings. She tends to get angry and frustrated. If she has a bad day or is under the weather, she can’t sit down and talk to me about it. She tends to get more physical or yell her lungs out. I know when she gets in that state that something is wrong, and I try my best to figure out the problem. It’s a very long process, and it breaks my heart every single time,” says Nalbari-based Mahendra Haloi.
“Within hours after learning my son had Down syndrome, I thought of the future. My son was ostracised and bullied in primary school. I’ve walked behind him in the halls and teachers and classmates would simply ignore him. He grew up to be a lonely boy. I thought that every institution was equipped with empathetic special needs educators. I didn’t realise until I had to fight for my son’s rights. I now offer free evening classes to such kids and counselling to their parents,” Ritu Aribam from Imphal.
Nima Kaushik from Raha, Nagaon, is an inspiration to millions across the world. She has surpassed expectations and proved medical calculations wrong by doing what everyone thought was impossible. “Doctors, relatives, and known ones told my parents that I wouldn’t be able to lead a normal life and do things independently. However, I have learned how to balance my academics and to cook meals, and play. I’m proud to say that I proved all wrong in all those areas! When I was old enough to go to school my parents decided to keep our lives as normal as possible. I went to school like everyone else and got good grades. I worked to graduate from high school. It was an exciting and eventful year.
“After I graduated, I enrolled in a PR and Communication course at the YMCA, in Delhi. While many were reluctant to hire me because of my condition, few of them were empathetic and gave me volunteer jobs during weekends. Now I have a full-time job at an art community space as a co-ordinator. While I’ve had some trouble dealing with changes in my life, I have learned how to talk through problems. My yoga teacher helps me improve my balance, physically and emotionally. I’m now a more focused, confident, and strong person. I’m proud to say that I made it this far. I’m glad to have found good friends along the way. And I want all the kids out there battling with this condition to believe that if I can do it, you can do it too!” says Nima.
Named after the British doctor, John Langdon Down who was the first person to clinically identify the condition as far back as 1886, Down syndrome is not a disease. It is not caused by lifestyle or anything the carrier did. It is simply a genetic condition where an individual expresses the abilities or otherwise of having an extra partial or complete copy of chromosome 21. Any child with Down syndrome is likely to experience some delays in mental and physical growth, visual and auditory impairments and other health-related problems that vary from one person to another.
While we may not see people with Down syndrome everywhere we look, it is not a factor of rareness, but perhaps, the fact that most of them live in isolation. According to available data, Down syndrome occurs in one out of every 1,000 live births across the world. In India, 32,000 cases are recorded every year. While the condition cannot be prevented, tests and screenings can help detect it during pregnancy. Increased maternal age was considered a risk factor for many years before extensive research proved otherwise. There are indications that younger mothers are also at risk of giving birth to a child with Down syndrome.
There have been incredible advancements in pregnancy screening to detect complications. From the Serum Marker testing like the Combined Test, Double Marker, Triple Marker, and even the Quadruple Marker Test to the cytogenetic procedure which can test foetal samples using an invasive procedure- and often led to the risk of miscarriage. Today, there is the Next Generation Sequencing, an advanced approach to DNA-Sequencing. It is non-invasive and searches the maternal bloodstream for freely floating foetal DNA. This revolutionary technology has increased the accuracy rate from about 65% decades ago to more than 99% today.
In India, Rashtriya Bal Swasthya Karyakram (RBSK) is an important initiative under the National Health Mission aiming at early identification and early intervention for children beginning at birth to 18 years. It seeks to diagnose the 4 ‘D’s – Defects at birth, Deficiencies, Diseases, and Development delays including disability. Child health screening and early intervention services envisage covering 30 selected health conditions (including Down syndrome) for screening, early detection and free management.
The Mrinaljyoti Rehabilitation Centre in Duliajan, Assam, has been doing tremendous work for children with special needs. It seeks to improve the lives through the services it provides with the positive outlook to inclusiveness into the mainstream society, minimise and prevent impairment, facilitate access to participate in daily life, improve educational and occupational outcomes, general well-being and quality of life, and educate others about impairments, intervention and management.
“We have around 100 children with special needs enrolled in our centre. We truly believe intelligence and other human capacities are not fixed at birth, but they are rather shaped to some extent by environmental influences and through learning. For the past few years, Mrinaljyoti Rehabilitation Centre has been persevering to identify and detect children with disabilities at an early age, so that we can provide them with the necessary interventions to mainstream them in society.
“Our early intervention services include early detection, physiotherapy, speech therapy, occupational therapy, counselling, school readiness program, open school coaching, counselling sessions for both children and parents etc. We all know Down syndrome doesn’t have a permanent cure but we can help in terms of development. We have been closely monitoring the children who have been already mainstreamed and are keeping an eye on their development for their good performance to the highest level”, says Amiya Pathak Borpujari, co-founder, Mrinaljyoti Rehabilitation Centre.
Speaking about the scope of the centre, she says, “The school managed by Mrinaljyoti has two compositions, they are special education and inclusive education. The school is governed by a School Management Committee (SMC) as per the School Management Scheme which was constituted according to Section 12 of Assam Non-government Educational Institution (regulation & management) Act 2006 and rules 2007. Several students from our school are studying in colleges now. We also have a Vocational Training Centre for providing skill development pieces of training such as sewing, weaving, embroidery, knitting, block-printing, food processing etc.,” Amiya adds, even with a daughter with special needs.
Guwahati-based Hope Multispeciality Rehabilitation Center has a special unit and school for children where they ready pupils for open base education systems and also train teenagers and adults in different vocational activities to give them positive direction in life. “Integrated programs with mainstream schools are organised, so that the special children may achieve their much-desired individual self-esteem and ultimately grow into independent citizens. We have several facilities and treatments for children with Down Syndrome such as inpatient treatment, psychotherapy, physiotherapy, sensory integration therapy, behavioural therapy, special education, speech therapy, individual counselling, family counselling, yoga centre etc.,” a spokesperson informs.
Dr Dimpy Mahanta, founding head of the department of psychology, Cotton University and a trainer, life coach and counsellor feels that to achieve a friendly, inclusive society, adults need to act as role models for the children. “We need to work towards de-stigmatising Down syndrome by creating awareness and sensitisation amongst the children, youth and older people. We need to train our children to be more emotionally intelligent so that they can empathise with the special children and cooperate with them whenever they need any assistance and also make them feel a part of them.
“I strongly feel that people with Down syndrome have an inherent right to be accepted and included as valued and equal members of the community. It is important to raise public awareness of this common disorder with the help of mass media both print and electronic, workshops, and lecture series in educational institutions. Besides this, the government needs to take policy decisions and advocate for the acceptance and inclusion of people with Down syndrome. Moreover, the voice of people with Down syndrome and those who live and work with them needs to be heard, valued and respected,” she says.
Explaining in detail how the condition affects physical and mental growth, she shares, “Children with Down syndrome tend to grow and develop physically and cognitively at a slower pace as compared to other children. However, socially they tend to be similar to kids without the condition. They are slower in reaching important developmental physical milestones like crawling, walking or talking. It mostly takes twice as long for children with Down syndrome to reach these physical milestones compared to other children. For instance, it usually takes around 8.5 months for a normal child to start crawling while a child with Down syndrome may not start crawling until he or she is 18 months.
“Moreover, they don’t develop motor skills the same way as other normal children do because of certain physical characteristics, including low muscle tone and strength, and increased joint flexibility. Just like with physical developments, cognitive development is also slower for children with Down syndrome. Because of their physical difficulties, they aren’t able to explore the world around them as other children do, and that can lead to slower learning. Moreover, their development is also intellectually and psychologically delayed. Children with Down syndrome also approach learning a bit differently and benefit greatly from visual learning. They may face trouble in speaking clearly and grasping grammar and sentence formation. Reading comes relatively easily, but number skills and holding verbal information in their short-term memory can be more of a struggle.”
While there’s no permanent cure to it, however, one can opt for certain therapies, treatments, and educational support to improve quality of life. Early intervention produces the best results. “Even before a child with Down syndrome reaches school age, various therapies can help. Like speech-language therapy which addresses communication and language skills by focusing on articulation, cognitive skills, and strengthening the oral muscles (tongue, lips). Speech-language therapy can be employed at the infant and toddler stages. The overall goal is to improve the child’s ability to communicate. We also need to watch out if there is any hearing loss in the child as that can lead to life-long difficulties in speech and understanding.
“Due to anatomical differences in children with Down syndrome, they are prone to fluid retention behind the eardrum that can cause hearing loss. Even though the fluid can be drained, this sometimes-chronic condition exemplifies how a child’s learning of auditory language can be disrupted. Secondly, physical therapy focuses on improving how a person moves. Because children and adults with Down syndrome commonly have poor muscle tone and smaller hands, physical therapy can go a long way in removing any difficulties caused by these traits. A physical therapy regimen will likely include strengthening and toning muscles, improving overall coordination and balance, and correcting posture.
“Thirdly, occupational therapy is designed to improve the day-to-day skills necessary for living a healthy life and successfully navigating society. Unlike physical therapists, occupational therapists work on improving fine motor skills and the performance of daily tasks like getting dressed, brushing one’s teeth, and eating. As the child gets older, the focus will shift to skills like writing and using a computer.
“Fourthly, assistive technology is a term used to describe devices that help a person with a disability function better. These devices can be anything from hearing aids, pencil/pen grips, seat cushions and walking aids to large-button mobile phones and large-letter keyboards. Touch-screen tablets and computers are useful for children with Down syndrome who struggle with performing fine motor movements. Educational software approaches learning via interaction and implementing sight, sound, and touch, which can make lessons more accessible and appealing. Finally, special education should be provided to such children,” Dr Dimpy concludes.
Bal Bharatis Public School in Guwahati is one of the few schools that encourages inclusive education. Children with Down syndrome sit with the mainstream students in the same class and there are teachers to take care of them. Principal Ashoka Sarma is against the idea of having a separate class because since many schools refuse to take in children with special needs, how would these kids get a normal childhood with normal school experience. The syllabus remains the same but the special kids get a different set of questions – all objective types. Later on, they sit for the National Institute Open Schooling (NIOS) secondary examinations under the HRD Ministry.
To make them feel important and loved, teachers and the Principal even have lunch together with the special kids. And the result: mainstream students are making an effort to understand the needs and behavioural approach. They play together, help them eat their lunch and take them to the washroom, help them copy notes, take out books from their bags. The school now sees students coming from places as far as Darrang, Hojai, Golaghat, Jorhat, and Dibrugarh. Regular workshops are also held for parents from time-to-time.
Dr Shabina Ahmed, director, Assam Autism Foundation, Guwahati; national chairperson, neurodevelopmental paediatrics, Indian Academy of Paediatrics, and paediatrician at Guwahati Children’s Clinic sharing her insights says, “Children with Down syndrome generally have slower physical growth in achieving the milestones. They look the same all over the world and have certain physical characteristics: flat faces with Mongoloid look, short stature, short broad hands with small fingers, single palm crease, and increase space between the first and second toes called the sandal gap. They are very sociable and nice to be with.
“Cognitive growth too takes a similar trajectory, though socially they tend to be similar to normal children. Their approach to learning is more visual. They are usually fond of music and can be trained in those lines as a vocational career. Though they are mild to moderately behind in their intelligence they are trainable and educable. But sometimes one may find them having aggressive behaviour as their reasoning capacity is low. So one must always understand what they are annoyed with and what makes them happy. They are very sensitive emotionally and have to be handled with care; they need a lot of love and support. Parents must teach them about the social circle as they cannot assess their limitations.”
While there’re no scientific proofs that any particular diet can in any way improve the condition, a good nutritious diet can smoothen the lifestyle to a greater level. Dietician Dr Pooja Biswas says, “Children with Down syndrome are prone to constipation. The recommended daily intake of water for children varies depending on their age. Up to eight years of age, they should be drinking 1 litre of water. That amount increases to 1.5 litres up to 12 years of age, and up to 2 litres when they’re teenagers. In addition to drinking water, foods with fibre can be of great benefits, such as apples, berries, avocado, lentils, bananas, oats, popcorn, and sweet potatoes.
“Sodas, sports drinks, chocolate milk, and fruit juice have exorbitant amounts of sugar — which makes it easier to gain weight and makes your child more prone to developing Type 2 diabetes and heart disease. It’s important to be mindful of how much sugar your child is drinking since beverages are the biggest source of added sugars in children’s diets. A gluten-free diet can be fulfilling. It includes fruits, vegetables, eggs, quinoa, wild rice, beans, legumes, fish, poultry, and whole grains, to name a few,” she adds.
Speaking further, she says, “Your child may often have eating and drinking difficulties. Many of them have a smaller mouth, larger tongue, or a higher palate. All of these conditions can make coordinating spoon-to-mouth movements frustrating. Make an effort to set aside time for your family to sit together with your child so that they can look at everyone and emulate them at his or her own pace,” she advises.
As with many other conditions that give a second meaning to “normal”, Down syndrome is perceived differently by different people. For some, it is a tough challenge to deal with, but for many others, it is an opportunity to embrace the differences that make us humans and lend a hand to fight the stigma and make people living with the condition feel as comfortable as possible.