Before Haemon, my child - I couldn’t have asked for anything better in life. Had a highly rewarding and successful holistic journey - merit student, enviable relations and family, high-flying career, the peak of health, and then I decided to add another feather to my hat of being a doting mother.
Everything was smooth in the pregnancy phase and then the lightning struck the night before Haemon was born. Got complicated due to medical negligence as my gynecologist overslept. The consequences of this had to be borne by my baby who was on strong lifesaving drugs and neonatal ICU for a week. Probably, Autism came as a side effect (vetted by NIMHANS). That day we cracked a deal with the almighty to get my child back and in return, we would always keep him happy. By the grace of divine power, we could get Haemon back home.
Haemon was an extremely happy active baby and developing with time. I will list down his issues age-wise as most of us would relate to that:
He started speaking 5/6 words (identifying, naming a few animals, and calling me and his father by initials). He wasn’t interested in books but loved playing outdoor sports. Liked running behind the big boy's gang. Zero sitting tolerance, loved watching screen though I would restrict it.
Behaviors listed down in basic terms for simplicity
Now with so many issues, I am sure you must be wondering why didn’t I start with intervention. My husband’s family has high IQ individuals. Most of them were late bloomers and introverted people who consider books to be their best friends over people. They all are well-to-do in their domains mostly as individual contributors- Scientists, Innovators, and patent holders. My hubby and extended family assured me that my son is just like the other members of the family and I shouldn’t be worried. So I decided to wait until he turned 3 yrs.
So finally decided to get him assessed in NIMHANS since we were based in Bangalore. Hell broke loose and that’s when I was confronted with AUTISM. So the screening, diagnosis, training, and counseling went on for 2/3 months and then they suggested exploring intervention programs privately. This was the phase when I was depressed, hurt, blanked out, hibernated from the rest of the world including my husband, and cocooned myself in all Wh questions to which I had no answer too…….WHY ME ?????? WHAT WENT WRONG???? I would hold my child and cry for hours and curse myself for being such a blinded mom. Was deeply sinking into my clueless and directionless self. While I was in clear depression my husband was figuring out the best therapist and treatments possible across.
After two months of constant fighting with myself, one day I met a god-sent stranger(in a public bus) who saw my miserable condition and made me speak to some random NRI who actually was an autistic adult working for NASA. I remember every word of the stranger, who actually happened to be a Special Educator, and every cell in my body has it ingrained even now.
MIRACLE Statement “Your son will precisely be what you believe he can be. if you think he would be a sweeper he will become a sweeper. if you think he can be a scientist he will be a scientist. what you manifest would directly impact your efforts to achieve it. never treat him like a special child and you will see wonders.”
I never had seen miracles happening then but something within me compelled me to listen to this lady. After this incident, I never looked back. Immediately started giving him the best therapy that Bangalore had then. That would mean me leaving my house at 8 am with all meals packed and running helter-skelter to therapy centers, almost driving 60/80 km in Bangalore's maddening rush and only returning by 10 pm. My car was my second home. I did this to expose myself to all the possible people who have in some ways healed and improved their autistic life. After 2/3 months of exposing my child to everything possible OT, sensory, speech, play, music, and group intervention we finally found a center with good repute and having passionate therapist under one roof. So we decided to put him in Comdeall, under the guidance of Dr. Pratibha Karanth. This was the second-best decision of my life. This center gave him holistic stimulation. It obviously wasn’t easy as Haemon, my son was a difficult and aggressive child then. He was a challenge for the entire team but they held on to his nuisances and never gave up. Neither did I give up. My whole and sole goal in life were to fix his issues to give him a better quality of life.
One fine day (3.7/3.8 yrs) he on an autorickshaw ride of 20 mins identified and spoke 27 new words which I never heard from him before. That was my first victory and then there was no looking back. With time and consistency, his speech developed which in turn reduced his aggression as no strangers could understand his needs. He was in the group intervention program for 2 years and then followed by 1 year of advanced pragmatic/ language sessions. Comdeall made him and in turn, me infamously famous. He became a case study and was discussed in consecutive batches to give hope to younger parents. I consider myself fortunate and will always be indebted to that team for their equivocal support provided to hone my child.
As his parents, we were clear that we wouldn’t succumb to societal pressure and only put him in formal school once he is ready and had all the prerequisites. Once he was taken off Comdeall 4 hour group intervention program and we got a go-ahead from Dr. Karanth, we explored three play schools ( regular and special). Unfortunately, both kinds of schools always undermined his potential as he was verbal but wouldn’t communicate with teachers. Simultaneously, I was prepping him for formal school readiness. Finally, by 6.5+yrs he got through Euro School(CBSE). That school was under-sourced for special needs and had only one Spl Ed. So it was compulsory for every non-neurotypical to have a shadow teacher. So with school, my son got into the regular grove like any other student. By then sitting tolerance had come in and the school was fine with that. I had to teach him everything back home even though he would sit in class, he would be absent-minded. The shadow eventually started working with him and aligning him with the norms. The teachers realized his potential only after seeing him perform in the written papers. So here was a kid who didn’t focus, and didn’t answer in class but would get good grades in written exams. I wouldn’t say this phase was smooth for me as on and off I would be called to school for managing his meltdowns, and all the learning was on my shoulder. But somehow sailed through. Schooling along with a lot of social mingling took away most of the day. Therapy now had stopped as by then I had gathered substantial knowledge and confidence to handle any new issues.
Fast forward six years and he somehow managed to continue till grade 6. Their academic scores were decent (the last annual percentage was 96.23%) and he is pretty good with math and science. We got an exception from a second language, Hindi. He had only one friend for so many years. Now with the onset of puberty and maturity, his best friend too started alienating him due to peer pressure. A kid who never missed a single day of school until grade 6 now started crying and pleading to avoid school. 2020 was a life-altering change for us even before the onset of COVID. The management changed and came a new principal and new Special Ed. Suddenly we started seeing that special needs parents from mid-school were asked to pull their wards as the school didn’t want to continue with autistic kids. They were absolutely okay to have a child with diverse needs minus the behavioral challenges. Also, Haemon started having behavioral issues probably due to hormonal changes, shattered self-esteem as his only friend parted ways, and immense academic pressure as they did not have an individualized education plan. So in Jan 2020, we were asked to consider a special school for the management. Though the session ends in March I choose to take my wards out of school that day itself as I do not believe in force-fitting anyone. If the intent is right even an uneducated person can groom your child but educated people with zero intent and crushing kids' self-esteem is lethal. So we decided we would just send him for taking the exam.
And the Universe had its own way to support my homeschooling decision through COVID. I empathize with the huge loss that COVID bought but to me, it was a blessing in disguise. To the world, homeschooling became the norm. I could spend all the time in grooming my child and desensitizing him to the biological changes. Slowly his temperament got regulated. With the shadow teacher accompanying him full-time over years he got so used to prompts that when I would just give him assessment sheets he wouldn’t even write his name independently. That’s when I realized my mistake and started focussing on him being independent even in academics. So from grade 6, I demoted my child to nursery level. I wanted him to solve everything with minimum intervention. With time he gained confidence and started attempting worksheets that wouldn’t say age-appropriate, but skill-based.
Later that year we decided to move to Noida for a lucrative work assignment. Also, I wanted to see how Haemon would take his uprooting as he has been in Bangalore since birth. To our surprise, he was far more accommodating and transitioned smoothly with this geographical change.
Now when I started homeschooling, I felt a lot of topics especially abstract concepts, social studies, etc. were just not getting into his head. That’s when in a brainstorming session with my hubby this idea clicked why don’t we teach him functional academics? After speaking to a few stakeholders with autistic adults we decided to follow this. To those of you who are new to functional academics, it is all the academic skills/knowledge one needs to survive in this world. E.g. If you don’t know trigonometry you can survive but if you don’t know basic addition and subtraction of money you will be cheated and that reduces your survival chances. So instead of wasting time behind a concept that my son may never use in daily life l would prefer focussing on all the aspect of math that deals with money. Another example: When he does an addition sum, he next validates the answer in mobile/calculator followed by checking in an excel sheet. So looking at all means that he may have to use it in the future.
So then came extensive research and formulating my own curriculum on what he should know and once he masters them, he can choose to widen his knowledge in his domain. I must confess it's not an easy task and you have to full time align yourself to this cause. But I enjoy doing it as I get handsome returns, his progress.
So here is a young bright teenager who I wouldn’t say is perfect as per societal norms but an evolving boy going through his metamorphosis. A young man who does the following:
This is a long writeup and some of you may be bored to death but the reason for me to pen it down is to show you all a live example of evolution.
My son is still not perfect. He is still no match to any teenager his years but his competitor is him and not anyone else. I still don’t know what the future holds for us. I don’t know whether he will be employable or if would we set up something for him to get the financial wheel rolling. I don’t have answers to what's after us. Will he lead a regular life? Will he have his family? There are a lot of questions still unanswered and probably time would bestow the answers.
All I know is I NOW have a beautiful child whose smile melts my heart and me and my husband are his ardent fans and cheerleaders. He may not have friends but he has a powerful set of biased parents. We believe in taking baby steps and celebrating every small positive change in him. My tomorrow is better than today. And with this hope and faith that your child will be a better version tomorrow, I would request you to, “MAKE THIS MIRACLE HAPPEN BY BELIEVING AND WORKING TOWARDS IT.”
Happy Parenting All !!!Kuheli & Ansuman Majumdar