Pranit is a 10-year-old incredibly loving and affectionate child. His birth in our family marked beginning of an unimaginable joyful journey that we are cherishing every moment today. As true with all Down syndrome children, he gives much more weightage to heart than brain and has built a strong emotional bond with people near and dear to him. We strongly believe that this is one of the major contributors to Pranit’s high happiness quotient and has made our lives as his parents much more meaningful.
Sharing and caring nature: Pranit loves to share his belongings with kids of his or younger age and greets them with a simple ‘hello’ or ‘hi’ with utmost care and absolute zero jealousy. We regularly receive this soothing feedback from his school and therapy classes and that too with a smile on the face of teachers and his friends’ parents mentioning it. Pranit has always been a frontrunner when it comes to giving away something of his own that can make any other sad child happy irrespective of whether he knows that child or not, and more importantly with no selfish expectations in return. Needless to say, he goes very much fine with the wise adults while innocently expecting a similar sharing and caring approach from them as well.
Strong family bonding: Upon being asked who all should accompany him for a trip or party, he ensures counting everyone in the family without missing even the person who might have opposed or hurt him just a few seconds ago. His unconditional intention is always to make sure that no one in the family should be left out. We are very fortunate to have a son with this intense sense of caring, humility and togetherness, which is on a sharp decline among the human beings.
Patience is the key: Every flower blooms in its own time. Similarly, children with Down syndrome need a little extra time and efforts for their development. However, certain admired qualities like being enormously humble, caring and trustworthy have been permanently imbibed in these kids to a much higher extent. After becoming parents, Pranit has most importantly taught us the untamed potential of patience, respect and acceptance. He may take longer to understand and learn new things but with consistent efforts, dedicated determination and lots of appreciation he has many a times surprised us with his achievements. At this stage, he often points out our mistakes and also makes us realize what we are missing while troubleshooting certain day-to-day issues. Every day with Pranit is full of learning and laughter. Life with a Down syndrome child may not follow the high IQ path but is a story filled with high EQ along with immense love, humour and happiness. He is a purely a blessing, our tiny miracle, Pranit.
Supportive therapies: As kids with Down syndrome develop at a pace slower than that of typical kids, they require additional support in form of therapies to build their language, speech, motor, social and self-care skills. We are glad to get these support therapies at all places we have stayed at – Mumbai, Bangalore and Udaipur. Speech therapy, OT and PT, along with our relevant homework as parents have been particularly useful. Regular medical check-ups with pediatrician and other healthcare providers have not only boosted our confidence while on the right path but also corrected our approach and provided a better direction at several instances. Here are certain approachable helpful institutions based on our experience: Mumbai – AIIPMR, Lilavati hospital, Hinduja hospital, Patwardhan children clinic; Bangalore – NIMHANS, St. John’s hospital, Narayan health city; Udaipur – Narayan seva sansthan, Sankalp pediatric rehabilitation center, ASG eye hospital.
The challenge of inclusion: As with all parents of children with special needs, we do face social stigma and discrimination almost at all fronts, but have fortunately found a small group of people everywhere who promptly support and make sure Pranit feels included. Like any other child, Pranit also has a heart full of love and joy but seeks a little more support and patience. Support from Indian government including legal rights, improving policies, national level institutes offering therapies at low cost, tax exemption, and online access to Unique Disability ID portal have been helpful during our journey.
Increasing awareness: We humbly request each and every person reading this article to spread awareness about inclusion with equal love, support, opportunities and care for all children with special needs. Believe us, it matters a lot and your efforts will definitely help these tiny stars to improve the enjoyment quotient of their gifted life.
People often underestimate Pranit’s ability because they have limited understanding about Down syndrome. There is so much more than just a diagnosis. When we see Pranit first and his diagnosis second, we can see all the good that comes with him. Unlike what some people are led to believe, it doesn’t and won’t limit him or his worth just because he is so much more than just a person who happens to have Down syndrome. Differences on the outside make no difference whatsoever; it’s our inside that shows true humanity, love and kindness.
WhatsApp support groups we are a part of: TNI/NDT Indian Parents; Karnataka Humsafar
Doctors supporting us colossally: Dr. Santosh J. Karmarkar and Dr. S. D. Patwardhan
– Roshni and Piyush
