The bright side of life
" Norah is considered a disabled person because of her genetic condition. In her disability I see so many abilities that outnumber mine, an able person. She has taught me to see a new world where you see abilities with a whole new frame of reference. True disability lies with us when we fail to recognise ability "
On December 3, the International Day of People with Disability, this was Instagram-influencer mom Pooja Khanna-Mittal's post about her three-year-old daughter Norah, who has Down Syndrome (DS).
When her daughter was born in Mumbai's Hinduja Hospital on July 2, 2017, she felt something was amiss. The staff did not offer the usual cake and candle light dinner given to all new parents, remembers Pooja. Her baby was born six weeks premature, had jaundice, and had difficulty breathing, she was informed the next morning. Distraught she walked towards the NICU. "DS was not in my head, I was thinking something worse," she says, adding that she was overwhelmed because there was no proper guidance, “other than telling me to have another baby. The doctors were neither subtle nor sensitive.”
On her way home from the hospital, she decided to name her child Norah, meaning light. Pooja struggled with post-partum depression and breastfeeding, along with the shock, denial, sadness, anger, grief and self-pity that those with children who will probably not ‘reach’ the typical babyhood milestones undergo.
She gradually learnt to accept and fight her fears. "I threw out all the negativity and embarked on a purpose-driven life practising gratitude. I looked at Norah's beauty and not just look for markers," she says.
Pooja's husband Vivek Mittal, who lived in Toronto earlier, decided to relocate to Mumbai. Here, she had the support of her parents and paediatrician Dr Ravindra Chittal (whom she calls a godsend). Her mentor-friend Ruth Zive in Toronto guided her into early intervention, given her own experience, and the American TV serial Born This way helped too. "What initially seemed like a lost dream became the beginning of another magnificent one," says Pooja, who started documenting every day, every activity, every milestone of Norah and posting it on Instagram (@pooja_and_norah ) .
She realised that a struggle for one person was a way of life for another, and her nuggets of information with audios and videos of Norah's progress from when she was three weeks old became a parental guide of sorts. From Norah's understanding of emotions, her daily physical activities, how she understands numbers and letters, develops reading skills, learns to balance, builds fine motor skills (through colouring, playing instruments), strengthens her muscles for better body functions and improves her speech, are all documented.
Aided by Falguni Kharwa's photography, Norah has been catapulted into fame. From a following of 10, her handle now has 20,000 followers and her posts exude positivity. It has proved to be a hub for many other parents of differently-abled children from all over the world, who exchange information and ideas not easily available or accessible to all. Brands too are willing to back the duo with their products.
In their own little way, Pooja and Vivek are building a constructive dialogue around developmental disability and their daughter is their warrior princess. "She is the one actually guiding us and teaching us to be strong," says Pooja. "I wouldn't change Norah for the world, but I would like to change the world for her," she adds.
Opening a different door
Gopika Kapoor has just written Beyond the Blue: Love, Life and Autism, about her experiences over the years after her child was diagnosed with the condition at age 3 . She began writing at the beginning of lockdown this year as her son Vir, now 15, started showing signs of independence. "He makes his bed, irons his clothes, goes out shopping for small things, fights and makes-up with his twin sister," says Gopika, adding that these “mark significant steps towards an upward climb.”
It has been quite a journey though. "As parents we were completely shattered for years. Exactly how Elisabeth Kubler Ross defines the five stages of grief, I went through denial, anger, bargaining, depression before accepting that every child is born with the ability to learn; only what and how much depends on the child," says Gopika.
She is thankful for therapy and acknowledges that she is one of the privileged few to get it, speaking of it as being important for both the child living with autism and for the parents and siblings. Parents are the first therapists in an informal and less structured way, she says.
The book is raw and honest and Gopika says while she started writing for parents of children with autism, it evolved into a larger canvass. "I hope everybody reads it to make the world more inclusive because when bringing up children with developmental disability, our equations constantly change with people: those who help us and those who feel uncomfortable in the presence of our children," she adds.
Lot of challenges are internal and even a diagnosis can take long, says Gopika. "I understood that Vir may be different from other children but he is no less. His milestones may be delayed but he too can be an achiever," she adds.
Gopika first volunteered with autism intervention team at Ummeed Child Development Center, a Mumbai-based NGO and rose to lead therapist and master trainer. In the last 10 years, she has provided therapy to over 400 families and conducted 100 training sessions on varied aspects of autism and its management.
While Gopika herself benefitted from Ummeed, she says there are very few Autism Intervention Training Programmes available in India, She quit the job this January to write a positive book on dealing with the condition and also on looking after the mental health of caregivers who are constantly worried about the source of support for their children after their time.
"My training helped me to raise Vir and over the years I have realised life is different and difficult but not bad. Writing about anecdotes and incidents that made me happy, angry or unsupported was very cathartic," she says.
Understanding Neurodiversity
A . Dr Nandita De Souza, Director, Developmental and Behavioural Pediatrician at Sethu Centre For Child Development and Family Guidance, Goa, tells why the focus is now on neurodiversity rather than disability. Excerpts from a conversation:
Q. What is a simple definition of developmental disability?
A . It is a manifestation of brain dysfunction that can lifelong affect cognitive functioning, communication skills and behavioral pattern. Like food, nature, culture, human beings too have diversity. The fragile X chromosome is responsible for this neurodiversity and can lead to autism, Down Syndrome, Attention Deficit Hyperactivity Disorde.
Q. How do we relate to those who are neurodiverse?
A. In your hands all fingers are not the same but you know how to use them together. Likewise those with the condition should be integrated and mainstreamed because they are no less, only their pace of grasping and doing things is slower than neuro-typical individuals. Be patient with them and behave the same as you would with others.
If somebody is unable to say hello to you, doesn't mean you will not say Hi. Or just say Hello and move on naturally instead of staying on to sympathise. Human connect is the best cure for every condition, so do not hesitate to give a hug as human touch heals better. Kneel down to their height to keep eye contact with them while speaking. Schools are the best places for early intervention. Children can share their tiffin boxes or observe what the neurodiverse children enjoy the most.
Q. What can we do to help a developmentally disabled family member at home?
A .Empower yourself with every piece of information and knowledge. Parents are the key to successful therapy. Do not be over-protecting about them, rather allow them to experience different emotions. Break into their comfort zones to make them flexible and independent. It is natural for every parent to worry about the child's future. Sibling bonding and networking within the community should be strengthened.
Q. How do development paediatricians (DPs) help in early intervention and better treatment?
A. There are about 100 of us in the country trained by the Indian Academy of Paediatricians in government medical colleges in cities and few select private centers across the country. The medical paediatricians are bogged down by the lack of time and treating common ailments such as jelly stomach, sore throat, cough or fever or other infectious/ communicable diseases.
DPs are trained to recognise the neuro-developmental condition. With a wider focus, they help to build the right support team around the child and child-specific skills; and collaborate with different stakeholders for better parenting of these children. Early recognition of symptoms of speech delay, behavioural problems, sensory processing, intellectual disability by them leads to awareness and helps in early diagnosis and treatment.
