By Abha Ranjan Khanna
For any parent, finding out that their child has Down Syndrome is a shock. And understandably so as right now there is no ‘treatment’ or ‘cure’ to reverse the effects of the extra genetic material that causes Down Syndrome. However, research over the past 25 years is heartening and provides a way forward to understanding how the syndrome affects individuals and families and about how to promote early and appropriate development.
A baby with Down Syndrome has the same needs as all babies and will develop by being cared for and interacted with in the same way all babies do. Many families of such children say it’s like setting out on a journey into the unknown with little idea about what to expect; yet, these are the very same challenges and excitement that every parent of a newborn faces.
A key priority in a baby with Down Syndrome’s first few months of life is that the parents have enough time to adjust to the diagnosis, receive the right information and support that helps them understand the needs of their infant. There are no rules and no rights and wrongs – some parents adjust quicker to the steep learning curve and others find their emotions take much longer to settle down.
Even though barely any children with Down Syndrome now die in the developed world, it is associated with high mortality in India, largely because of lack of information and support for the new parents, outdated advice many doctors give and because of discriminatory social practices and educational systems.
Children with Down Syndrome as well as other children achieve their potential with:
- Effective health care for survival and well-being.
- Early intervention to promote good parenting skills.
- Every day routine family activities like feeding, playing and communicating.
- Good education at primary school, secondary school and further education.
- Sports, arts and recreation.
- Skill-building and paid work.
The first years of life are a critical time in a child’s development. All young children go through the most rapid and developmentally significant changes during this time. During these early years, they achieve the basic physical, cognitive, language, social and self-help skills that lay the foundation for future progress, and these abilities are attained according to predictable developmental patterns. Children with Down Syndrome typically face delays in certain areas of development, so early intervention is highly recommended. It can begin at any time after birth, but the sooner it starts, the better.
Physical therapy, speech therapy and occupational therapy teamed together with the parents and the school system will provide appropriate supports for any child…and especially for a child with Down Syndrome.
(The writer is an occupational therapist.)