An infinite journey whose inception happened in 2004 when my Babu was born, my only imp who garnished my eyes with chosen imageries of a common mother. But I was predestined to begin a new chapter where an uncouth domain was awaiting me. The first year of Babu’s birth didn’t raise any significant alarm and his milestones picked a usual pace. We officially named him Krishnendu Chatterjee a name that affixes glory to an individual’s personality.
When Babu was 15 months old l noticed his intentness to stand on his feet was lacking. Crawling any distance satisfied his requirements for free movements. Being worried I took him to his regular paediatrician for consultation. After examining him thoroughly she advised me not to be worried for his leg muscles are showing normal symptoms and to my relief within few days Babu started taking weeny steps as a beginning of his journey supported by free momentum of his childish steps.
Second alarm was raised when Babu started attending his kindergarten school. After observing him for few months the teachers reported to me that he lacks socialisation. He doesn’t interact with his peer group or with teachers concerned. He requires some extra help, and I must take him to doctor. Question was also raised on his hearing ability. To ensure we took him for — BERA test (Brainstem Evoked Response Audiometry). The test revealed that he has no difficulty with hearing, he can receive the sound frequencies normally. Rather he is suffering a condition called Autism. I was advised to consult a psychiatrist or psychologist and seek for sequacious advice to help the child.
To me the word autism seemed a term from distant land, an uncouth realm I never heard of or had any coherence. I was sinking into an undecipherable depth from where l flinched to see any speck of light. I explored, l battled, tried to accept and sometimes repulsed as well. Thus commenced my infinite journey with autism or autism spectrum disorder (ASD). It is a kind of intellectual impairment whereby an individual is stigmatized as differently abled or neuro divergent. A person born with such genetic disorders is differently conditioned but definitely not a diseased person. When my son was detected with autism in 2007, city Kolkata was then nescient and unaware of this disorder called autism and its outcomes. So I began to hit in the bush to get the right choice for him. Flabbergasted, disappointed, exhausted I was sinking into depression. But I kept fighting with my inner strength and reasoning power to keep myself steady.
Slowly I began noticing certain characteristics in Babu which were different from other kids. He had less eye contacts, refused to respond in words when question asked or react to any statement made. He mostly took the support of gestures to convey his matter and requirements. He avoided social interactions and preferred to be left alone. His natural propensity of echolalia whereby he meaninglessly repeated my words or words spoken by some other person. I started feeling feckless and confounded as in Kolkata at that time there were scanty service providers to help me with accurate solutions. It was an excruciating struggle to adjoin him to my world and myself peregrinating his alleys. Bridging the gap between us was a procrastinated process and I kept nurturing patience every second to reach my goal.
I came to know of a special educator in Kolkata from Babu’s school and with her support started introducing to him the variegated characters involved in his life and how he should address them. But l felt like his lessons weren’t still adequate enough and they lacked in proper techniques. At that point I got in touch with two special educators from Bangalore who arrived in Kolkata to conduct some workshops and they taught me much improved methods to help my child with his basic needs. Specifically, his attention span and speech, his fine and gross motor skills and cognitive skills. I still reminisce how impatient and anxious I use to become about his academics. They assuaged my motherly impulses saying what significance can academics have when the child can’t even express his elementary requirements. When he can’t communicate about his hunger, thirst, pain, happiness, frustrations to his parents or associates.
The only positive thing that happened is, he continued attending his kindergarten inclusive setup and could explore his surroundings with other neurotypicals. Days were slipping through trenchant plights and it seemed like a turbulence has turned my world upside down. When I was actually spinning the dreamy webs of my motherly affection, Babu was stealthily sinking into his world of autism a domain where I had ponderous access. I somewhat found myself to have cocooned into my limited world and along with Babu my social interactions too suffered a setback. I preferred to avert my attention and curl up to ignore all questions hurled at me.
Babu’s practices with his special educator and therapists from Bangalore helped to ennoble his comprehensive skill. The frequency of his eye contacts was also showing positive signs along with his sitting tolerance. But his inclination to express his necessities in words was still in a shadowy state. Meanwhile time and destiny took a twist and it was time for us to relocate from Kolkata to Bangalore. Because of my husband’s professional reasons it was an urgent decision made and we three had to set out for the new city and it’s unfamiliar patterns. But before we started for Bangalore I reached out to his regular psychiatrist once more for proper advice. She assured me that it has been a boon in disguise and Bangalore has better provision to help with individuals who are on the spectrum.
Bangalore was waiting for me with new surprises, new set of challenges. A city where intellectual disabilities were much in discussion but when it comes to lending a hand of cooperation or genuine concern not all places and predicaments are favourable.
The city seemed to me more of a business centre trying to extort money in pretence of service provider. One should step carefully to remain safe from getting misguided by fake individuals. As discussions are more so also innumerable advice. There are high chances to get bewildered whether you’re following the right track. The first disaster happened when we were compelled to admit him in a special environment. It was a complete transition from an inclusive set up in Kolkata to a special set up in Bangalore. Babu was tremendously upset with the severe behavioural disorders of other special children around him and use to throw tantrums when going to school. As Babu’s parents we had to sincerely consider about putting him in an inclusive environment.
The next crisis that sprang up was language for communication. Babu was closer to Bengali as in Kolkata most of his associates spoke to him in that language. He was not yet adequately acquainted and spontaneous in English. Whenever we approached any inclusive school, this issue was raised as a poignant cause to refuse his admission. Even if admission was granted in some of them they raised other issues like lack of eye contact, less attention span, poor cognitive and motor skills. School authorities suggested me to take external help to develop these potentials in him and also to get his assessment done. This would bring out the clarity about his level of autism. I was confounded and atrophied but still I didn’t surrender to the situation.
I started taking him for occupational therapies and ABA speech therapy. I also got his assessment done from reputed organizations like NIMHANS and Spastics Society of Karnataka. All this helped me to sort out the exact requirements of my son and how I should proceed about them. Another crisis that was raising great concern was trying to settle him down in a single inclusive environment. School changing became an annual affair and it hurled me into severe trauma. After much experiment I was compelled to reach the conclusion that I should put him in an absolute special environment. I succeeded to admit him in a school that is holistically meant for Autistic individuals. Even special educators there are being trained accordingly to handle every child as per their nature and requirement.
With time and experience one stringent truth kept floating before my eyes that I am the most perpetual pillar of strength for him. Like a dedicated warrior I have to battle undeterred and diligently till the end. I was determined to find a common pathway for both of us to traverse with exuberance and willingness. When all lights seem to have evanesced and there is pitch darkness, it is then some divine theurgy that indicates the spark to transform life. I found babu to hum melodies and in perfect tune. Sometimes from advertisement jingles, sometimes from recorded songs and also mobiles. He was so spontaneous and innate that no technique was required to push him for singing. I took a firm decision to promote his talent and penchant. I began teaching him the basic notes of Sa Re Ga Ma Pa. But I knew that my confined knowledge cannot take him a long distance. I started looking for a music guru who can guide and enlighten his path in this respect. Fortunately, I came across Mala Roy who was running a pioneer institution of various art forms named Malancha. She herself is an erudite music teacher with specialisation in Rabindra Sangeet. Thus began our musical quest under her veteran supervision. Ascending step by step we proceeded in this lyrical journey together. From the preliminary stages, then Junior Diploma, Senior Diploma and ultimately reached the facade of Graduation. This is a certified and recognised course affiliated under Rabindra Bharati University. Now I don’t wish to look abaft anymore. Our wings caught the right wind and we soared in the proper direction unwaveringly.
Now Krishnendu is an adult on the spectrum and attained his 18 years of age. He is doing his environmental and functional studies and religiously pursuing his lyrical journey. It is because of him that after a long hiatus I returned to the world of melody holding his hand. His divine gestures and unconditional love emblazoned my life with emotions that I never experienced before. While ambling these uncouth alleys with him I subconsciously started nurturing creative impulses within me and at certain point they started exuding in patterns of poesy and ornated me with the title of a poetess. If agony and dubiousness is one facet of my journey with him then living in a world of ingenuousness devoid of materialistic allurement is another. He is also a potential cyclist and is able to ride his cycle in speed.
I can’t drop this narration of Infinite Journey without mentioning Babu’s father, a silent warrior who furtively supported all decisions and initiatives I framed for Babu. He stood by, sculpting the entire lucid sky for us to explore. He is the man who enfolded us in protective shield and extended his hand of support to propel ahead. We boldly consider ourselves to be proud parents of Krishnendu and eulogize every occasion where he displayed his talent and got felicitated for the same defeating all biased norms of community and its ignorance about his different condition. Just one incertitude still pricks my heart….. Who shall embrace him when I shall not be there any more?
Indrani Chatterjee
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