Investing in empathy

Down Syndrome (DS), or Trisomy 21, is a genetic condition where an individual has three copies of the 21st chromosome, leading to a total of 47 chromosomes instead of 46. It causes delays in both physical and mental development of the child.

Women aged 35 and older are at a higher risk of having children with DS. Children with DS have a flat facial profile, an upward slant to the eyes, small ears, and a protruding tongue. Low muscle tone (called hypotonia) is also seen, and such children reach developmental milestones much later than their normal counterparts.

Down syndrome affects kids' ability to learn in different ways, but most have mild to moderate intellectual impairment. Their IQ remains at the levels of 8 and 9 year-year olds, though many manage to finish school and even get jobs to sustain themselves. Problems with vision and hearing, congenital heart defects and pulmonary hypertension are common in children born with DS.

Terry Dawson was extremely upset. He looked at his classmates, talking and laughing, excited at the prospect of graduating from High School. He wasn’t upset about leaving school; but being the brightest student of his batch, with Physics and Mathematics as his favourite subjects had got him the label of a ‘nerd’.

Despite being a very nice person, Terry had few friends. Everyone assumed that he was boring, simply because he spent a lot of time with his books. The only things that kept him going were his dream to become a scientist at NASA, and the coveted ‘Best Student Award’ that would fetch him a place in the best University.

While his classmates spent their days playing baseball, going to parties and hanging out with friends, Terry worked hard at his books. But his long-cherished dream shattered that morning when he heard that the Principal intended to give the Best Student Award to Lewin, the star player of the school baseball team. Lewin was a tall, well- built, handsome boy, who was a bully, but managed to remain in the teachers’ good books.

“Why didn’t I just enjoy myself like the others? I invested in hard work all these years, for nothing. I hate being Terry Dawson! I wish I were Lewin”, thought Terry, as a tear slipped out. “Want a handkerchief, cry baby?” came a voice. Terry turned to find Lewin and his cronies standing nearby. “Loser!” they jeered.

Terry ignored them, but he was seething with fury. Hoots of laughter followed him home. Terry burst into the living room, banging the door behind him. “Terry? Is that you?” his mother called. “Yes, Mom”, Terry called back, as he bounded up the stairs.

“Come down soon, your aunt Lisa and your cousin Nick are here to see you!” But Terry had already locked himself up in his bedroom. He had looked forward to meeting Aunt Lisa, a scientist herself. He had always been in awe of her, for he had heard his parents praise her highly.

She had committed herself to research, so much so that she had kept her personal life on the back burner, marrying very late. Terry had never met her, or her son, whom he only knew to be a boy his own age. But he didn’t want to meet anyone anymore.

A soft knock came at his door.

“Go away!” shouted Terry.

“But I want to come in”, said a gentle pleading voice, like a child’s.

Surprised, Terry opened the door. A boy, somewhat shorter than him, stood there, but he was definitely not a small child. He had a strange flat face with upward slanting eyes. The boy smiled happily, his tongue protruding, and Terry couldn’t help thinking that something was wrong with him.

“Nick?”
The boy nodded eagerly, and caught Terry’s hand. “You.. are.. Ter- riee” he pronounced carefully.

Suddenly he turned and ran down the stairs, pulling Terry with him. “Hey… wait!” Terry said. But the boy didn’t stop. Terry noticed that he waddled rather than ran.

When they reached the kitchen, Aunt Lisa came forward and gave Terry a warm hug. “How are you, Terry?” she asked. “You’ve grown up to be a smart young man. Your mom was just telling me how well you’ve done at school. I’m so proud of you!”

Then she turned to Nick, and almost as if she were talking to a small boy of six or seven, scolded him, saying, “Why did you run down the stairs, Nick? You could have hurt yourself.

Mummy has told you never to do that!”

Nick covered his face with his hands, and peered at his mother through his fingers.

“You’ve been a naughty boy, Nick”, said Aunt Lisa. Suddenly, Nick began to cry. Terry’s mother patted him reassuringly. “There, there, that’s okay. Come with me and I’ll give you some cookies.”

Terry was annoyed. Here were two perfectly sensible adults, treating a boy of his age like a small kid! And Nick was no baby, yet seemed to act like one!

“Nick… seems a bit queer”, Terry said hesitatingly, trying not to sound rude.

“He is, isn’t he?” Aunt Lisa said, with a sad laugh. Nick meanwhile, was taking cookies out of the cookie jar. “Take just two, Nick”, Aunt Lisa called. Nick proceeded to take out four instead.

“Nick is a special baby, Terry. He has Down syndrome- a genetic disorder, which affects both his physical and mental development.”

Terry was shocked. “But.. how?”

“I have just myself to blame, I suppose”, smiled his aunt. “I married late, and had Nick late. As a woman ages, the children she bears are at a higher risk of developing genetic problems.”

Terry stood rooted to the spot, dumbstruck.

“I took my brains for granted, you see”, continued Aunt Lisa. “Studying was a piece of cake for me, and I used to look down upon those who couldn’t.

All the laurels I won were everything to me. After I had Nick, I suddenly realized how blessed I had been, and how I hadn’t been able to recognize it. Forget graduating from high school, I’ll be happy if he could just learn what’s necessary to survive.”

The entire evening, Terry saw Nick being treated specially. Aunt Lisa helped him with his napkin during dinner, wiped his mouth after the meal, helped him brush his teeth, and change into his bedclothes.

Aunt Lisa told Nick over dinner what a brilliant cousin he had. And yet, Nick only smiled, not at all offended by the praise that went to Terry. He seemed to admire Terry all the more for it, and did not resent his superiority at all. Terry could hardly sleep that night.

He realized how silly he had been earlier that day. Just for the sake of a school award, he had wanted to become an insensitive bully like Lewin!

The next few days, Terry took over from Aunt Lisa in caring for Nick. He took Nick around, and patiently tried to teach him, entertain him, and give him company. Nick was overjoyed, and Aunt Lisa noticed how much of good Terry had done him.

When the time came to say goodbye to Nick, Terry felt really sad, for he had grown fond of him. Just before they left, Aunt Lisa stopped to have a word with him. “I heard that you missed out on the school award, Terry.

But believe me, being a sensitive human being is a much better quality than being the best student at school.” Terry smiled sheepishly. “I have written to the University you wanted to join”, called Aunt Lisa as the car sped away.

“You’ll hear from them soon!” A grateful Terry waved back, thankful that he was Terry Dawson after all.

By Sneha Verghese