March 21 is World Down Syndrome Day, a poignant reminder to embrace diversity and foster inclusion within our communities. The recent past has revealed a gradual but commendable shift in mindsets as more people come to realise that inclusion benefits everyone. It’s hard won progress, thanks to the efforts of disabled self-advocates, their families and organisations across India. Sethu Centre for Child Development and Family Guidance, a pioneer of inclusion in Goa since 2006, gives a professional perspective of what it’s like to live with Down syndrome
Dr Nilanjan Majumder, paediatrician
Down syndrome, in which an individual is born with an extra copy of chromosome 21, is a neurodevelopmental disability that affects the individual’s balance, posture, strength, flexibility and planning. People with Down syndrome often display strong early social development, good short-term memory and visual learning skills.
Medical issues vary in severity among individuals. As muscle tone is often affected, babies with Down syndrome take longer to hold up their heads, roll over, sit up and walk. Some have eye problems. They tend to be more prone to colds, ear infections, and sinus infections than other children, and are more likely to have thyroid and hearing issues. They may also have heart defects, which can be tested with an echocardiography evaluation. Some are born with blockages in their stomach or intestines. Some have a propensity to develop joint dislocation at the neck, so that must be ruled out before they participate in physical training or sports.
Down syndrome cannot be cured because it is not a disease. Intervention begun in infancy or toddlerhood maximises the chances of children attaining their highest potential. The sooner, the better, with a team involving a developmental paediatrician, occupational therapist, physiotherapist, and speech therapist for coordinated and holistic care. A caring home environment, supportive family and healthy communication make a big difference to positive outcomes for a child with DS.
Anjali Barretto, speech and language pathologist
Children with Down syndrome tend to be strong in their social development and understanding, non-verbal communication and use of gestures. Speech and language tend to be delayed because of their oral-motor difficulties. Early intervention with a speech language pathologist (SLP) is essential for promoting their mental and social development.
An SLP will begin by assessing the child’s communication abilities, strengths and challenges. A speech and language therapist (SLT) can support a myriad of needs and more difficulties can be addressed in therapy. Some ways in which speech and language therapy is conducted for children with Down include gestures, songs, modelling speech, reading aloud every day, augmentative and Alternative Communication.
Laxmi Jogdand, physiotherapist
Babies with Down Syndrome achieve their physical developmental milestones later than typically developing children due to low muscle tone and lax or unstable joints. Uncorrected, abnormal postures and movement patterns while standing, sitting or walking can develop into orthopaedic problems in adulthood. Physiotherapy can help children strengthen their muscles, and avoid, correct or optimise their movement patterns. Physiotherapy for Down syndrome includes exercise programmes, postural advice, strengthening and stretching exercises, balance exercises and aqua-therapy.
Physiotherapy programmes and approaches must be individualised to the child’s unique physical, mental and emotional makeup. The physiotherapist determines the therapeutic approach by observing the child’s movements, behaviour and response to stimuli and environment. This provides a holistic understanding of the child’s temperament and thought process, based on which their physiotherapy can be customised.
Anusha Doshi, special educator
Children with Down syndrome learn differently from their typically developing peers. Learning must be functional, meaningful and motivating, in an environment that recognises and maximises strong visual awareness and visual learning skills.
Functional learning pertains to life skills and concepts that are of immediate value and promote independent living. Functional skills must be inculcated early as good personal hygiene and the ability to do things for oneself is a huge morale booster that percolates into every other aspect of learning. Learning must be meaningful and motivating. The more meaningful the lesson, the more motivated the child is to learn. Basic math and reading skills are necessary for navigating the world. Introducing calculators early on helps make learning math easier and connecting concepts, to daily life makes them meaningful, encouraging the child to learn.
Functional reading includes learning to read one’s name, family and personal details typically required to fill forms, as well as sight words in the child’s surroundings, such as ‘toilet’, ‘stop’, ‘go’, ‘exit’, ‘hospital’, ‘pharmacy’ and ‘shop’. Using activities and objects that interest the child make learning fun and rewarding. Once a child sees that reading is interesting, it is much easier to work on more advanced reading skills.
Family and friends speak
“Jonah is a gift in our lives. His additional needs sometime require us to exercise patience and problem solving. Overall, he’s like any typical child. He has his own interests, talents and challenges. We treasure him for the unique individual he is and he reminds us to appreciate each person for who they are,” says Leslie Lakhia.
“You will find that children with Down syndrome are loving and caring, but they are much more than that when you spend time with them. One of the smartest girls I know is my friend’s sister. She is fiercely competitive whether we are playing board games or even just going for a simple run; she won’t give up until the other players are exhausted. She defines “smart” and “special” in her own unique way. She is a true sweetheart who shows her love to everyone she meets,” says Valzera Rodrigues
“Our son, our sunshine! Most parents would look at big milestones of kids like crawling, walking, talking, etc. but for us parents even the smallest milestone is an achievement because we have 100 fears and when these fears are proven wrong by our kid’s resilience, it is a celebration! Many people tend to be judgemental about kids with special needs and their parents. The World Down Syndrome Day is one such day where we hope to take one step forward on a long journey, to raise awareness amongst all parents - those who have a loved one with Down Syndrome and are finding it difficult to accept the diagnosis, and those who have typical children to be more inclusive. Trust us “all is well”; it is neither the child nor the parent’s fault that the child has an extra chromosome. If you want to know the true definition of unconditional love, have a bond with a child or an adult with Down syndrome and your perspective will change,” says Nikhil Sarup.