Fifteen-year-old Abhishree Agrawal seems just like another shy teenager when you first see her: she’s quiet, well behaved and does whatever work is allotted to her quite well. She also manages a bit of aerobics, though she is a little clumsy at it. But then, as if to compensate, she’s good at yoga – perhaps due to her early training since the age of three.
Abhishree attends a regular school but goes to its special needs department with functional classes (for children with special needs who do not really adapt much to conventional curriculum. The other choice being academics with a twist or individualized education plans for high-functioning children).
“Abhishree is not much into academics,” says her mother Dr Garima Agrawal, a dentist who lives in Faridabad. “She’s not fond of maths and English is okay, so far, though the curriculum is very basic. Therefore, she takes functional classes — where a lot of therapies like speech, OT [occupational therapy], ADL [activities of daily living] are also worked into the curriculum. These along with other vocational activities like cooking, baking and creating craft items suit her much better. She’s happy doing all that.”
Though Abhishree is a special needs child, she is not autistic. Her diagnosis — as per only a single, very expensive test, the chromosomal microarray analysis (CMA) that her doctor parents got done from a lab in Hyderabad — was a chromosomal problem or genetic mutation where a recessive gene causes certain kind of issues (like Abhishree has).
“This [condition] seems to run in families where many children [of the same family] can even be in mainstream classes and go on to get jobs and work and manage their lives fine, but there’s always a difference with other children,” says Dr Garima.
“In some, it could be that they are classified as special needs, like my daughter Abhishree, but it’s not autism. My family, and even my husband’s, has its fair share of such kids, so we were familiar with it. It wasn’t entirely a shot in the dark.”
Garima and her husband, Dr Abhilash Agrawal, a pediatrician, chose to follow the unconventional route when they first felt their daughter was not exactly ‘normal’ at birth. She was, indeed, quite different.
Firstly, Abhishree was a post-term baby, who was born a week late, but her birth weight was only 1.8kg and it was a struggle to get her to feed. “We did not keep her in the hospital after the birth despite her being such a low-weight baby,” says Dr Garima. “Her facial features did tell us that something was not right with her. Since both of us are doctors, we decided to use our knowledge when it was needed the most. We did not go to any experts or other doctors to ask about her extreme feeding issues. Instead, we invested extra time and effort, and also faced a lot of mental stress while dealing with this new development in our lives.”
It was at first alarming to discover that their baby never crawled and instead started walking; that she never learnt how to chew and instead swallowed the very little food she took in. But these missed developmental milestones did warn the parents of the difficult days ahead.
“I have struggled with her alone, and my job as a dentist too got sidelined since initially, I was so bogged down with her feeding disorder that months and years flew by with a lot of distress,” says Dr Garima.
Abhishree regressed after she turned 15 months old: she stopped chewing whatever little food she would have. All her foods had to be pureed in a mixie, which would travel with the Agrawals everywhere they went. For a good many years, the little girl would reject all foods and the mother would have to persist for hours. But there was some improvement in this after the child turned eight.
Abhishree is fully verbal and can communicate her needs to her caregivers. She is generally a happy child who also follows instructions, unlike most special needs kids. “She doesn’t like to study so we don’t really burden her with unrealistic expectations that most parents have,” says Dr Garima. “Instead, we choose to let her follow what she is good at, things such as cooking and baking. I hardly used to cook until my daughter was born. Now, when she is interested in this process, I started learning more about different recipes so that Abhishree has a lot of adventures with me in the kitchen.” She believes only parents can help their child since they understand them the best.
Like all parents who have a special needs child, the Agrawals too have been on a lonely journey, though their profession has proved to be a boon. “Of course, our family did try to help and support us, but I know what therapies my child needs and what to do about her feeding disorder,” says Dr Garima. “So, no matter how anybody might have wanted to help, at the end of the day it was me alone holding my child and getting her to eat — many times a day and with almost one-and-a-half hour required for each meal. That was tough.”
What does the future hold for the family? “Once she is out of the school that she is currently going to, we will put her somewhere where her interests are taken care of, and hopefully some kind of progress will be made there,” says Dr Garima. “Honestly speaking, we haven’t thought much of it, but today my daughter has come a long way from where she was. That’s the silver lining for us.”