World Down Syndrome Day 2022: Inclusion makes them better versions of themselves

Team Udayavani, Mar 21, 2022, 7:00 AM IST

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Have you heard of Sujeet Desai, a musician of Indian origin who lives in the USA, Madeline Stuart, a professional model from Australia? What about Pablo Pineda, an actor from Spain, or Chelsea Werner, an Olympic gymnast from the USA? Do you know what each of these individuals has in common?

They all have a chromosomal condition called Down syndrome, caused by the presence of an extra 21st chromosome, often known as trisomy 21. This condition has nothing to do with the parents’ actions prior to the child’s birth. The extra genetic material causes Down syndrome’s developmental changes and physical features. The common characteristic features of Down syndrome include low muscle tone, short stature, a flat nasal bridge, upward slanting eyes, and a protruding tongue.

Down syndrome is the most frequent cause of intellectual disability. It is associated with mild to moderate learning disabilities, developmental delays, vision, and hearing problems. Heart defects, gastrointestinal disorders, and other health problems are common in people with Down syndrome. However, the issues differ amongst each person with this condition.

World Down Syndrome Day (WDSD) is observed on March 21 every year. The day is marked to raise awareness about Down syndrome. The United Nations first officially observed the day in 2012. The triplication (trisomy) of the 21st chromosome causes Down syndrome. Thus, the date for WDSD has been selected as the 21st day of the third month to signify this uniqueness. According to recent statistics from the World Health Organisation, the incidence of Down’s Syndrome in India is 1 per 850- 900 live births.

Children with Down syndrome may struggle to reach the same level of independence and self-care as other children. Activities such as toileting, dressing, and feeding that come readily to other children can be a substantial problem. Balance, walking, running, and hopping are examples of gross motor skills that have difficulty performing.

Due to cognitive and brain developmental issues, children with Down’s syndrome are more prone to have fine motor skill deficits like difficulty buttoning, holding a pencil, tying shoelaces. They also have shorter fingers, making fine motor skills more difficult to learn. They frequently struggle to integrate sensory input from their surroundings into suitable reactions. They may require more assistance than other children to reach developmental milestones and gain access to everyday facilities such as the school curriculum and social networks.

Adults with Down syndrome may face difficulty completing complex tasks due to their intellectual difficulties; they may also struggle to secure suitable employment later in life. Families may also face inadequate facilities to care for their older relatives with Down syndrome.
There are some misconceptions about what it means to have Down syndrome that should be dispelled. People with Down syndrome, for example, can develop early reading skills and can grasp both spoken and written words. Their strengths include deep empathy for others, good social skills, good short-term memory, and visual learning skills.

People with Down syndrome are gifted with many talents. These could be poetry, creative art, or even reading other people’s emotions. People with Down syndrome want to be seen both as a part of a group and as unique individuals with their own talents. Parents much ensure to encourage children without putting too much pressure on them. You can help children find ways to promote their talents. For example, if they are interested in music, it may help to have instructions from an appropriate music teacher. It is in the hands of parents and teachers to mold these children and showcase their talents to the world.

An occupational therapist helps individuals with Down syndrome master skills required across their life span. They help them become independent in self-care skills, improve fine and gross motor skills, prepare for school, and improve participation in play and leisure activities.

When the child is very young, the occupational therapist may help the mother feed the child and may provide training in correctly positioning the child to help them do their activities. As the child grows older, the therapist may work on improving his strength and achieving age-appropriate cognitive skills to help them initiate schooling at the right age.

For school-going children, the occupational therapist may help in improving gross and fine motor skills, achieving typical motor milestones, improving participation in self-care skills, developing necessary skills for school, and, if required, providing them with adaptations that will facilitate their learning.

While working with adults with Down syndrome, the occupational therapist helps them develop skills required for prevocational or vocational training. They also do work simulations to determine which work environment is best suitable for them, whether they will need any supervision or can act in unsupervised environments, and develop safe work environments.

For this year, the theme of World Down Syndrome Day 2022 is “What does Inclusion mean?”. According to the United Nations, inclusion is the ‘full and effective participation and inclusion in society. Today, all over the world, people with Down syndrome and other disabilities are not given the opportunity to fully participate in society as compared to others.

Occupational therapists can also help work towards better inclusion for children and adults with Down syndrome in society.
According to the Rights of Persons with Disabilities Act of 2016, “inclusive education” in India refers to a system of education in which students with and without disabilities learn together. The teaching and learning system is appropriately adapted to meet the learning needs of diverse types of students. Inclusive education can provide sensitization to children with Down syndrome and equality in all aspects of the community, including employment opportunities.

According to studies, inclusion policies in schools have been demonstrated to foster optimal learning environments for children with Down syndrome. Mainstream schools are advantageous in the development of language skills over time. This requires the assistance of the school administration, teachers, family members, and other students. They should be treated with the same respect, fairness, and companionship that all children desire.

As adults, individuals with Down syndrome must be integrated and included in the community. This can be achieved by making adequate accommodations at workplaces and providing sensitization to the public.

By building awareness on Down syndrome, the strengths, and difficulties that individuals with the condition face, and making society more inclusive, occupational therapists can help them live a fulfilling and meaningful life.

( Written by Trisha Shefali Saldanha (MOT student), P. Keshavaram (MOT student), Sindhu Mukhi A (MOT student), and Koushik Sau (Assistant Professor Senior Scale, Occupational Therapy) of the Department of Occupational Therapy, MCHP, MAHE, Manipal)