Anchored Well

Winning over mild cerebral palsy

Sujata Devadas, June 13  2020

Anirban’s parents have a splendid reason for their charming attitude. 

“Diminished oxygen supply resulted in foetal distress while I delivered my son in 1988,” Anirban’s mother Sokti Subhra explains, “40% of his neural network was damaged, impacting his movements, muscle tone, fine motor skills and posture adversely.”

Now, their son is a 32 year old bank manager at Union Bank of India gaining this position in April last year.

Gautam and Sokti Subhra Guha with their sons

Walking past ‘disaster’

Gautam and Subhra Guha’s younger son kept missing developmental milestones. The paediatrician diagnosed mild cerebral palsy when the baby was a year and 3 months old.

Monthly consultations with Dr S.K.Verma of All India Institute of Medical Sciences (AIIMS) helped the parents to comprehend their child’s health disorder. Step by step guidance helped them to parent him responsibly. 

 

Among the physical exercises, the doctor suggested swimming lessons. To initiate it, his parents constructed a 3 feet high metal tank on their first floor apartment’s balcony. But a jaundice attack brought further familiarisation with swimming to a halt.

Essential speech and physiotherapy sessions that began at age 2 proved very helpful. Hidden in this energetic enthusiastic child’s gestures was a thriving intellect. Anirban combined words from 3 languages - Hindi, English and Bengali - to communicate with his elder brother Arnab and his parents.

Like other toddlers, Anirban began attending preschool at age 3 in New Delhi suburb Gurgaon Sector 4 to keep pace with normal children. He could not walk. A helmet protected his head. To prevent his legs from bending at an abnormal angle, steel pads kept them straight and protected them.

He walked precariously by age 5 but fell over often. To keep their fun-loving son busy, his parents gifted him a tricycle with a lower base, taught him how to pedal, and put obstacles for him to cycle around. He loved this game.

Attitudes and delays

Special educator Anita Sachdeva’s recommendation caused them to consult occupational therapist Sandhya Deshpande in Jaipur. Sandhya assessed Anirban’s IQ to be high.

“Put him in a normal school” she said, “Call me if you run into problems. I know the rules. I can get him admitted to any school in India.” To reduce Anirban’s constant struggle with undeveloped fine motor skills, Sandhya gave functional tips: “eating food with a spoon is easier for him than eating with his hand. Rolled up Rotis are also easier for him to eat. Wear T-shirts instead of shirts with buttons. Flap shoes are better than shoes with laces.”  

 

Negative attitudes at educational institutions delayed admission to a normal school. Delhi’s St. Mary Higher Secondary School’s nursery section tentatively offered it in 1995. “My harrowing emotions turned to relief,” says Subhra, “when the principal said ‘my son is deaf and dumb. He just got married. Don't worry. I care about your son. Our nursery class has other differently abled children.’ 

Subhra became a scribe for another special child student in this nursery section. The parent of another special child wrote for 7-year-old Anirban. After assessing his performance for 3 months, he was promoted to Grade 1. Good grades in academics bolstered Anirban’s spirit and confidence. It made things easier for his family at home.

Arnab and Anirban

Critical Contributor 

Anirban has a strong bond with his brother Arnab largely because his sibling chose to play with him or took him to the park instead of opting to play with his own friends after school, leaving Anirban stranded, isolated at home. “My parents naturally had to do the shopping or stay abreast with different aspects of life, says Arnab, “my brother however was prone to accidents and injuries. I was a kid too but I just had to manage. This was critical because Anirban feels less physical pain than others. He was unaware of the seriousness of his injuries.”

“We lived in New Delhi” says Subhra, “but Gautam’s work in the banking sector kept him away in different parts of India - Simla, Kasauli and Himachal Pradesh. Our decisions and central focus always manoeuvred around Anirban, our special child. Arnab always helped out, making things easier. He shifted school closer to The Spastic Society of Northern India (now called A.A.D.I) in Haus Khas, Delhi so that his brother could benefit from this special attention.”

The wheel turns … 

Help comes from unexpected sources. A special child’s mother at Spastic Society turned Subhra’s distress completely around by saying, “you have the courage and capacity to bring your child up properly.” It strengthened Subhra’s determination to parent both her children with dedication, frequently seeking advice from counsellors.

The next decisive turn came when Anirban’s acumen for maths was deduced by Spastics Society’s special educator Aparna Das. Gautam decided to check this himself. He wrote answers to 20 simple maths questions on different cards, mixed it up and spread it across a table. As he asked the questions, Anirban tapped on the right answer every time. “My son drooled, he struggled to walk and talk, but he could certainly do maths. I was thrilled.” Even with severely affected fine motor skills, Anirban could write up to class IV. “Then he adamantly refused to write,” says Gautam. But writing is not equal to education. "So Purnima Choudhary and Riya Bahadur became my scribes," says Anirban, "so that my education could continue”

Learning to use a computer in Grades 8 and 9 surpassed Anirban’s inability to write. His hampered fine motor skills gave the mouse and keyboard a shorter life, but this did not fluster his parents. So their child became competent at accessing files, choosing different things to read, select a movie … on his own. 

Choosing French

 

He chose French as the second language in Grade 9.  Perplexed, Gautam asked Anirban why. He replied, ‘I shall earn as a qualified tourist guide and accompany tourists to places like Taj Mahal.’ “It says a lot about Anirban’s attitude, his aim to be financially independent,” says Gautam, smiling. “He has a great sense of direction, a strong photographic memory, ability to recollect what he reads on the newspaper down to the exact date of an event’s occurrence.”

Expelled

“When I chose to leave home to do my food technology post graduate course at a college in another city, my brother was devastated. He was 17, in Grade 10,” says Arnab, “my Mom was the only person who could calm him down.”

Anirban and Subhra

Dismal academic performance was the unfortunate result. He was expelled from the school. His parents took immediate charge of his education and appealed to the Education Ministry to permit their son to write the final exam in spite of his low school attendance.

The Ministry’s appraisal gave Anirban clearance to write the 10th board CBSE* exam. Any attempt by the school to block it was tantamount to confronting the Ministry. Anirban returned to school.  To cope with his brother’s absence, he socialised and went out to play after school hours. He graduated 10th Grade with first class marks.

Flexible Matrix

One evening a month later, the door bell rang and Gautam opened their apartment’s front door to be greeted by a teenager with the question: would you like Anirban to be admitted in the elite Sanskriti School at Chanakyapuri, Delhi? That teenager Rajat Kumar, the school’s Head Boy, could give such a recommendation.

Sanskriti School assumed arts as the right course for Anirban. Gautam requested that his son try commerce. Two years commerce course - Grades 11 and 12 - followed in a conducive educational environment. "Chartered accountant trainee Ishwar gave me extra tuitions," Anirban remembers, "I cleared 12th Grade with first division."

Hairpin bends

With these hairpin twists, Anirban cleared school at age 19 (3 more years than regular students). He graduated commerce from Deshbandhu College, Delhi University in 4 years. Arnab’s wife Neha constantly coached and supported him to complete his college education. Anirban built a good set of friends. He became more independent.

Writing the banking entrance exam was, in Gautam’s mind, the next logical step for his son.

Anirban and friends after college graduation 

All scheduled banks provide employment to differently abled citizens to earn their financial independence. After several attempts, Anirban got 2 job offers in 2015 - a clerical post from State Bank of India and as probationary officer from Union Bank of India. In his fifth year of employment in Union Bank of India, he was promoted to the managerial position.

“Naturally, Anirban benefitted, so did I” says Arnab. “After accepting the job, he stayed alone for the entire training course in Mumbai. The day he was to return to Delhi, Mumbai roads were flooded. He still made it to the airport and back home on his own.”

“Living at such close quarters with my brother and cerebral palsy, I know the critical value of nutrition. After a short corporate career stint, I combined my knowhow in food technology with my father’s sizeable agricultural knowledge, to begin a company that manufactures and sells gluten-free flour, sugar-free chocolates, black rice, red rice and millets.”

Arnab, Gautam and Anirban Guha

Indian Institute of Millet Research (IIMR), Hyderabad has virtually incubated his company Impeccable Innovations for millet-rich products. Arnab addresses upcoming nutritionists, dieticians, friendly gathering of parents with autistic children on the gluten-free, casein-free, soy-free (GFCFSF) diet. He has done this in the University of Mysore, in Bangalore and through a webinar to Food Technology department at Amity University, Noida, Delhi in the lockdown period.  Due to the high relevance of these products for diabetic, autistic and celiac patients, efforts to collaborate with agricultural institutes like Indian Institute of Horticultural Research (IIHR) and St.John’s Hospital, Bangalore are in progress.

“Make no mistake,” says Arnab, “my brother did it. So can others. After quitting their career to parent their autistic child, mothers’ gets frustrated when they face confrontations. I tell them of our own experience. The matrix is not rigid. Upgrade to better nutrition, crucial early intervention, select therapy sessions that benefits the child. Groom and coach your kid at home. The highest impact is upto age 8. The child can become increasingly independent by adolescence. Parents post anecdotes and testimonials on Impeccable Innovations Facebook link when this happens.”

Full Circle

Family that cheers him on (l to r): Arnab, Sokti Subhra, her grandson, Anirban, Kalpita, Neha and Gautam Guha

Anirban married recently. He and his wife Kalpita live with his parents and paternal grandmother. As circumstances would have it, his parents were in a different city when India locked down travel to prevent the spread of COVID-19. Anirban and Kalpita therefore cared and attended to his paternal grandmother’s well-being.

There were a lot of reservations when he was born. Today, Anirban is a caregiver.

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