My wife Inderjeet and I welcomed our first child Samarpratap into this world 8 years ago. He was born with a tumor in his brain and was diagnosed when he was 3 months old. It broke our hearts to have to see him through brain surgery at that age. At 4 months, he developed hydrocephalus, an accumulation of cerebrospinal fluid within the brain, and required yet another surgery to insert a shunt to relieve the pressure in his brain.
After the surgery, he had sunset eyes, where he was unable to focus, or move his eyes up and down. He spent those early years mostly in the hospital, with multiple surgeries and loads of medication. He missed all his milestones. While most children start walking at about 10 months, he took his first steps when he was about 18 months old. He also couldn’t speak.
Samar was prone to seizures and infections. I remember coming so close to losing him when he was 3. He had a very high fever, was convulsing, and had to be put on a ventilator. We were so afraid he wouldn’t make it, but thankfully our prayers were answered and he recovered. I told myself then that we cannot allow him to get sick anymore. From then on, my wife and I restricted his outdoor activities and kept a close watch on his diet to reduce the chances of further infection. We tried our best to be with him at all times.
When he was a little older, we sent him to a pre-school for children without disabilities near where we live, in the state of Punjab, India. At the time, we thought that he would eventually catch up, and remained hopeful that he wouldn’t need special care.
It was only when Samar was 4 that we realized he would need extra help. He still couldn’t speak and would only make noises. We enrolled him in an integrated school for children with and without intellectual disabilities. There, we found out about the Special Olympics Young Athletes Program, an early intervention sport and play program where he took part in simple games to help his physical and social development. It gave him the foundation to get started on skating when he was 5, and within a month he was balancing well and was really comfortable on his wheels.
Samar has found a meaningful outlet for his energy and can now focus better. The great thing is that these sport and play activities are so easily replicated at home, and have been really useful in keeping Samar engaged, especially when we were in lockdown during the pandemic.
Previously, he would be absorbed in his own world, playing with his own toys, walking around distracted, unable to pay attention when we spoke to him. He struggled to follow instructions, and wouldn’t interact with strangers. There was a time when we even resorted to tying him loosely to his chair to help him learn how to stay still.
We invented a little game, by getting him to balance small objects on his head, shoulders and hands, to help him focus and concentrate. These days, he can sit still for up to 40 minutes. He’s also able to follow a series of simple instructions. For example, if we are going out, he is able to fetch the car keys, unlock the door and sit in the car by himself.
About 3 months ago, we started him on speech therapy, and recently just before his 8th birthday, he spoke his first words, “mama” and “papa”. We were overjoyed when he crossed that milestone.
He’s also more sociable and confident now. Although Samar is non-verbal, he shows his affection in different ways. He gives his speech therapist a hug after every session. When we get visitors, he always pulls them to the swing outside our home to play with them.
We are blessed that we have never been the subject of discrimination here in Punjab. People are open and willing to help our special children. At Samar’s school, the children are treated with respect. There is no bullying. It gives us confidence that he is in safe hands.
We’re also comforted that his health and fitness has improved over the years, thanks to the Young Athletes activities. He still gets minor seizures now and then and is on medication to control that, but he’s not been hospitalized for almost 4 years now.
All I want now is for my child to grow up happy, healthy and safe. As parents, we do not want our expectations to burden him. We hope for him to be able to speak, express his thoughts, and be independent. Just one day at a time, with baby steps forward as we go, and that’s enough.