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“I am learning painting and mehendi art. I love chatting with my twin brother every weekend”

In 1999, a year after they were married, Sukhminder and Geetinder Mann from Amritsar welcomed twins into their lives. The young couple were gifted a son and a daughter in one go – they couldn’t have hoped for more. Geetinder, however, began to notice that the girl, Mehareen, was behaving unusually even at nine months. She would bite her toes and fingers and jump on the floor. When she started walking she would tiptoe, never letting her heels touch the ground. The contrast between her and the twin, Amiteshwar, was what worried their mother.
 
Sukhminder had joined the Indian Police Services, and nine months into their marriage Geetinder had started teaching at the Khalsa College (where she is Associate Professor of Economics today). In 2001, when Mehareen was 15 months old, the Manns consulted the paediatrician at the Post-Graduate Institute in Chandigarh who pronounced her ‘normal’. A month later they got an appointment at the Advanced Paediatric Centre, Chandigarh where Mehreen was diagnosed with Cornelia de Lange Syndrome (CdLS), a rare genetic condition characterised by physical, intellectual and behavioural differences. Symptoms of CdLS are numerous and varied. Some common ones include differences in facial features, dental issues, excessive hair growth, and gastroesophageal reflux disease (GERD). Self-injury might be one of its manifestations, another being ADHD.
 
Understandably, Geetinder was shocked to hear the doctor say that Mehareen would never lead a ‘normal life’. She remembers how she came home and shut herself up in her room. Gradually the couple accepted reality and started looking for therapies. Finding no support in Amritsar, they explored options in Chandigarh and Delhi. They would travel every month to the speech therapy centre Udaan in Delhi and take home a programme they could continue to practise with Mehareen.
 
In 2002 Sukhminder got a posting to another city. Geetinder says she was lucky to have her mother and mother-in-law’s support; it was they who looked after Amitesh while Geet was running around with Mehareen. In the course of her Delhi trips, Geetinder visited Pallavanjali School where she met special educator Shaloo Sharma. Shaloo recommended a book that changed Geet’s perception entirely. She started reading widely about CdLS and gathered information that would help her understand her daughter’s condition. “If you don’t know the problem you can’t deal with it,” she says. In 2004 they attended a World Conference on CdLS in Italy and it was an eye opener. She met a lot of parents of kids with the same syndrome and found a community.
 
Schooling for Mehreen was the next step. She was admitted to nursery class in the mainstream DAV Public School which had children with disabilities but no special educator. She studied here for almost three years but showed little progress. Geetinder approached the management of Khalsa Public School and got them to open a separate wing for students with special needs. They had a special educator, and Mehareen studied here for three years.
 
Geetinder had read a book by American psychotherapist Glenn Doman who had founded the Institutes for the Achievement of Human Potential (IAHP) in 1955. She was fortunate to come in contact with a family in Chandigarh who had enrolled their son with special needs in a training programme conducted by IAHP. “The family shared their experiences and provided crucial inputs that sharpened Mehareen’s cognitive skills and improved her overall performance considerably,” Geet tells us. “They had opened a centre near Chandigarh which Mehareen attended for eight months.”
 
Today Mehareen spends her mornings engaged in various activities at Saksham, a vocational and rehabilitation centre for persons with disabilities. In the afternoon she practises painting and mehendi art before going for her evening walk. She loves painting with watercolours and crayons and has been taking painting classes. She is also getting trained in mehendi application, which can perhaps be a means of earning an income in future.
 
“We always have lunch and dinner together, during which we talk about how we spent the day,” says Geetinder. Mehareen likes Chinese, Italian and Punjabi non-veg cuisines. She watches TV, her favourite serial being CID, and she retires to her bedroom by 10.30. She enjoys her private space but her personal mobile and iPad keep her connected to the world. She loves going to her grandmother’s house and is very fond of her six-year-old twin cousins Yuvraj and Mehtaab. Their elder sister Inayat takes special care of Mehareen and makes it a point to catch up with her every week.
 
Amiteshwar graduated in computer science with an economics major from the University of California, Davis and is working in Fremont, California. The contrast between the twins and the differences in their personalities are all erased by the same love they have for each other. Mehareen looks forward to her long, weekend conversations with him when he updates her on what’s going on in his life and patiently listens to her stories. “There has not been an iota of sibling rivalry,” says Geetinder. “Amitesh never competed for my attention; rather, he would help me with Mehareen as her early years were characterised by GERD, nasal and chest congestion, and recurrent bouts of fever. Right from the beginning he has always been helpful, protective and cooperative.”

Geetinder will shortly be travelling on her own to visit Amitesh and Mehareen will have to manage with the help of her father and an assistant at home. “This will be a huge learning opportunity for Mehareen,” Geet says. We hope that step by step she walks on that long road to independence.