How a die-hard mother found what her son with special needs required, and helped others as well
“He loves biryani,” she said, suppressing a giggle, her eyes twinkling, as she narrated her son’s story, at the neurology outpatient department on a hot summer afternoon.
As doctors, we routinely deal with personal stories of patients. Patients or their caregivers turn story-tellers for those few minutes, mostly recollecting sordid tales of pain, suffering and torment. They look expectantly at you at the end, for the story is still incomplete.
What would the final chapter be like? Not all stories will have happy endings, especially if you are dealing with neurologic diseases, where a sizable chunk of diseases have no permanent cure. Many children with brain injury are often left stranded; frozen on their developmental journey, drooling, blabbering and completely dependent on the parents. It takes a heavy toll on the family, too. Heart-wrenching stories of mothers sacrificing everything for their baby, who is sometimes wholly incapable of even recognising her as the mother.
Some stories, however, are not so bleak. Like this middle-aged lady who held forth in fluent Malayalam with a somewhat mellifluous accent typical of the Malappuram region of Kerala.
I sensed an enthusiasm in her voice, a fascination towards the predicament of her son who was truly a sight to behold. He had severe microcephaly — the smallest head that I ever imagined could be compatible with life. His father ran a small shop that sold chips and cold drinks. When they noticed his small head at birth, they hoped and believed he would catch up soon.
Alas, that was not to be. He was now all of seven years old, but had never walked or spoken a single meaningful sentence.
I expected the couple to be depressed about the state of affairs. Surprisingly, they had a refreshingly positive approach and were figuring out the best way to play the cards they had been dealt. They had come to terms with his condition and focussed on the things he could do.
“He doesn’t speak or understand a thing but laughs a lot,” she quipped, and expressed his love for biryani. “He never stops clapping once he smells biryani being cooked. If I could make biryani every day he would be the happiest kid in the world.”
Kids like him need special attention for their development. Rehabilitative facilities are not very robust in rural areas even in Kerala where the public health infrastructure is among the best in the country. Speech therapy and physiotherapy are often expensive or non-existent, particularly in rural settings. I was curious to know how this mother managed the rehabilitative measures that were necessary for the child.
Her reply left me amazed. The nearest rehabilitative facility was 60 km away from home. She faced a lot of difficulties initially and even made weekly trips to the centre to give her son the best chance of improvement. It was not easy carrying a child with special needs on a crowded bus. An alternative had to be found.
Not one to be disheartened, she decided to build her own facility. After convincing her husband about her bold idea, she started approaching local leaders, philanthropists and social organisations for funds.
It was not easy and took a lot of coaxing. Her painstaking efforts finally bore fruit and she is today the Principal of a special school that caters to 30 children with special needs in the region. It also houses a full-time speech therapist and physiotherapist. “My son loves the company of his friends in my school,” she beamed. Her never-say-die spirit had triumphed and in the process also benefited other families in the region.
After hearing her uplifting story, I briefed her about the treatment options and tests that had been planned for her and bid adieu to her, complimenting her entrepreneurial skills and promising to visit her school sometime.
The story of the boy has stayed with me. His name as majestic as his mother’s resolve — Sultan. The Sultan of the tiny head who inspired immense hope. The Sultan who loved his biryani.
Dr. Asranna is a neurologist pursuing a post-doctoral fellowship in Thiruvananthapuram firstname.lastname@example.org