Haemon's Story

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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:

1 year

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.
 

2-3 years

Behaviors listed down in basic terms for simplicity

• Vocabulary – still limited to 5/6 words that he picked at 1 yr
• Spinning wheels endlessly
• Lining up toys – could spend hours doing that
• Name response – rarely but with reinforcement, it was 100%
• Sensory – hand flapping, jumping, fearing loud sounds of grinder, cooker, peeling dry skin to literally bleed, severe tantrums while cutting nails and hair, blabbering, stimming, would smell before taking any food(it had to be of the same composition, color else he wouldn’t eat), swallowing food that weren’t of his choice, avoiding all fruits and nuts 
• No interest in reading books, writing, coloring, 
• Socially wanting to play with kids but not meaningfully even when modeled day after day.
• Emotional – Though he liked being around people never connected after a few minutes. Couldn’t relate to their emotions.
• Constipated and fear to defecate – messed up his pants but wouldn’t go to the toilet
• Sitting tolerance was only limited to his interest
• Staring at vehicles' wheels, and people's legs while walking.
• Bad Waiting sense, adamant.

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.”

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.

6+ yrs
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.  

13+ yrs
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.

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. 

15+ yrs
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:

• All household chores (does his dishes, laundry, makes his bed, cleans his room, cooks basic food, bakes sometimes, makes tea for me – with help of machines though)
• goes to markets and manages money (can't send him independently as he doesn’t understand Hindi at all… that’s next on my agenda, Hindi proficiency)
• visits banks/ATMs and knows about basic money management
• studies for hours without reinforcement and takes short breaks every 45 mins
• enjoys company but still is a man of few words or one-liners.
• Is developing manipulation and negotiation skills
• Loves basketball, swimming, and cycling (solo, mind you)
• Meditates for 45 mins
• Still has some sudden temperamental eruptions which settle down in a few minutes with no extra effort (this is the top most on my radar now and like all other issues I know this will wean off with time)
• Conversation skills are limited to questions and answers (preferably one-liners) with strangers but can prolong a conversation with family and relevant/interesting topics.
• Computer proficiency (searching, navigating, MS, photoshop, etc)   
• Has some bit of quirky behaviors that peak and subside with time and we flow with it.
• From being sensitive to nail and hair cutting, a kid who does his own grooming proactively.
• From shutting his ears to now making milkshakes in grinders and using a cooker.
• From having perennial disturbed sleep to having sound sleep for 8 hrs.
• From a kid who didn’t call me mama to now telling me “ Momma you have beautiful eyes”
• From not chewing to now eating hard chewy meat too..has his cuisine preference and still doesn’t explore continental or Italian. But we are okay as long as he is fine with Indian and Chinese…you would get that anywhere across the globe.
• Blabbering has reduced significantly with speech.
• A kid with an oro-sensory issue now uses battery operated brush twice and flosses too (this I still have to remind)
• Highly constipated to regularized motion ( without Biomed or special diet. I give him a fresh, balanced meal as I believe food is fuel for the body and allow his junk once a week)
• A kid with no waiting tolerance now plans his vacation two months in advance and does all the groundwork and counting days too. 
• The kid who just mugged up everything to now who understands every word in his grey matter. 
• The kid is in terms of his physiological and biological changes.

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.