Meet Aparna Nayak, a woman who dons multiple hats while juggling between different roles of a mother, a daughter and a wife. She is a mom to a teenage daughter with special needs whose caring takes up most of her time. To unwind, she manages to listen to music, paint, and read and review books. She has also authored a book titled Yours Truly – a collection of emotions. Her book comprises 32 short stories written in poem-prose format. She is also a home baker (goes by the brand name Chocodisiac) specialising in healthy and sugar-free cakes, cookies, chocolate truffles and snack bars.
Tell us something about your daughter
Prerna was born like any other girl child in India in September 2004; welcomed by some and not by a few people. But she is my Dad’s aankhon ka taara (the apple of his eye). She has my parents and her dad twisted around her little finger. She initially had me too but then I had to be a tough mom for sake of her benefit. At birth, she looked like a normal baby, cute and beautiful; one look at her cute angelic face and you would fall in love with her huge doe-eyes. But as days passed her milestones were delayed. To date, we are unable to identify her condition correctly in spite of the numerous tests she has gone through. To make matters easier for themselves, doctors say that she has cerebral palsy with epilepsy just because there is a small gap between the two hemispheres of her brain and she gets convulsions (fits). A few years ago, her doctor suspected that Prerna has some syndrome or genetic condition. However, the reports of all the tests came negative. So even now, her exact diagnosis is unclear.
When did you learn that she needed medical attention?
Since I was a young and new mom and this happened before the smartphone and internet boom in India, I initially did not realise that Prerna was special. She had issues latching on me, she was a light sleeper and her head holding had not happened even when she was six months old. Maybe it was our fate or bad luck that even the half a dozen doctors whom we consulted couldn’t pinpoint anything about her condition. Some said maybe since she isn’t breastfed she is weak and will take time, some doctors said some kids are slow so we need not worry. But when she was nearly eight and a half months old (around May 2005) she had to be admitted to ICU due to jaundice, double pneumonia, and severe viral infection. We had nearly lost her. But somehow we pulled through it.
One day, she was asleep on the hospital bed with her head tilted at an odd angle (as she was still not holding her head which usually happens within 3 months of birth), a senior paediatrician who was on his rounds came up to her bed, looked at her and questioned me, “Why is her head at an odd angle?” I told him that she had not started holding her head. Hearing that, he blasted me, “How come being educated you people have still not started her treatment?” I looked at him bewildered as I couldn’t understand what he meant. After his junior said something to him, he softened his stance and asked me some questions about her birth history and all and that’s when he told us about physiotherapy which could help Prerna. It was the first time that we heard the word – physiotherapy. Thus started the never-ending cycle of visits to numerous therapists, doctors, tests, and trial and error methods.
What treatments did you try / didn’t want to try and how did they help / didn’t help?
As soon as my daughter was discharged from the hospital, we were directed to a physiotherapist who examined her and told us that we needed to start therapy as soon as possible. But since she was weak from her recent near-death experience the doctor gave her a fortnight to heal and recover. After a couple of months, when she was not showing much improvement, we were directed to a well-known neurologist. This should have been done initially which sadly neither we knew nor the experienced doctors advised us. Then started the trial and error part with the neurologist recommending some or the other tests and medicines each time we visited for a follow-up, but we never got a proper answer.
Moreover, my husband’s job involves travelling and he is out of town most time of the year. So coordinating the doctor visits (which was at the other end of the city) and the tests and all was getting way out of hand and quite delayed. We tried most therapies like physiotherapy, occupational therapy, speech therapy and special education. While all the sessions did help to some extent, they didn’t make much difference because my daughter is smart and a bit lazy and, not to mention, most pampered. She didn’t want to make an effort. But her therapists were persistent and we were able to achieve many milestones for which I am grateful to them. Prerna did start holding her head a couple of days before her first birthday, she started coming from supine (sleeping position) to sitting on her own, sitting to kneeling, and then standing with little support from us. She had started walking with minimum support from us. But then fate intervened and the therapist left the job. The new one was not getting along with Prerna, and also she became smart and started to resist the therapist. Finally, due to my health issues, we had to start the home therapies, which to some extent was helping her maintain her body tone and posture. However, due to the covid situation, we had to discontinue everything now.
What are the biggest challenges as a child suffering from special needs / cerebral palsy?
First of the biggest challenge for any child and their parent is correct and timely diagnosis of the child’s condition. Nowadays, with advanced technology and science, most conditions can be diagnosed early. Cerebral palsy is a huge spectrum. Depends on the severity of the brain damage, part of brain damage and many other factors determines the severity of challenges. Another main challenge is ACCEPTANCE. I am saying that in bold, caps and underlined because unless and until you accept your child is a special needs child, no amount of medicine, therapy and treatment can help. The more you are in denial the more it hampers the healing. Once you accept it, your mind opens up and you can see the clear picture and it is easy to go on with life.
How do you help Prerna feel good and comfortable?
For most of us, food is comfort. So whenever she does anything good I pamper her with her favorite food. Sometimes praising her for the smallest effort she makes, hugging her, clapping on her success makes her feel good. Initially, I too fell on the bandwagon and used to dress her up like normal girls without realising that she has sensory issues, meaning she doesn’t like normal things like bangles and their noise, combing, shampooing hair, etc. She used to get irritated and fidgety but slowly I realised my mistake and started to avoid things that irritated her. This did cause some issues from some members of the family and even her therapists pointed that out to me, but for me, her comfort was more important than anything else.
Read the next part of the interview of this amazing mom in our next post. The next part of the interview, that will inspire moms of children with special needs, covers the following questions:
How do you help yourself stay strong?
What would you like to tell parents in the same boat?
How do you deal with the unsolicited advice by those around you?
Your voice: Tell us whatever you feel like sharing
Tell us something about Aparna before marriage and childbirth?
How has your life changed now?