Today, allow me to introduce you to an actor – director on the Autism spectrum. Devayan is a multi-faceted personality. In this in-depth interview with Devayan and his mom, Sujata Upadhyay, she bares her soul about the struggles of an Autism parent and how unconditional love and undying spirit are the secret ingredients of their success. Let’s get started..
Q Would you like to share your autism journey with us Sujata?
Our autism journey began when Devayan or Jojo was 3 years old. Devayan was growing up fine or so we thought until around 2 years of age. He didn’t have any delayed milestones. He would imitate sounds of animals, recite rhymes and was very social etc. After his second birthday, our house help Raju ( a boy whom we had hired and who stayed with us) left us all of a sudden. Jojo was very attached to him as Raju had been with us since Jojo’s birth and considered him his elder brother. Jojo gets very emotionally attached to his loved ones. So it was a no brainer that this sudden disappearance of a family member shocked him immensely. He lost his speech, eye contact, response to name calling etc. Basically he had this perpetual lost expression on his face. Till another six months we kept thinking that things will be back to normal and took it easy. Jojo got admission in prenursery section of the city’s well known public school. And got lost on the first day of school. He didn’t bother to follow the queue that the class teacher had formed! (Restrospectively thinking that should have been the obvious red flag)…
By another three months we had started getting anxious as to why he lost his speech. In fact it was my mother who read an article on autism in the Times and urged us to go for a clinical evaluation. This is despite the fact that both me and my husband are in the medical field and way back when Jojo was only 6 months old I had received a regular mail from BabyCentre.com which I had enrolled in during my pregnancy about the possible warning signs of autism and I had rebuffed it thinking that such conditions happened only in the West!!! How ignorant and careless of me…
So our son was diagnosed with autism at the premier government hospital of the city and we went in for a second opinion at Action For Autism, Delhi. My husband couldn’t accept the diagnosis. Strangely I was very calm through it all and my acceptance started with day one. However I wasn’t at all prepared for the roller coaster journey that awaited us. My parents shifted to my place permanently. My social life became non-existent. My husband increased his tours and conferences and became highly career oriented and busy. My own career went for a toss ( though I could continue it due to permanent support from my parents). Nobody told us what to do next post the diagnosis. Our son seemed light years away from us though sitting in the same room.
I trained my maid and helper and parents how to walk and work without making a single sound. No ringing of the doorbell was a standing instruction to everybody coming to my place. I planned our park outings with four more persons who would run behind my son. I always had a box of chips and chocolate in my bag because my son wouldn’t eat anything else outside. I carried a whole suitcase of his preferred brand of snacks and DVDs when I attended the two weddings in my family .
At home Diwali turned out to be the most hated festivals and a fever meant paracetamol injections in the hospital because Jojo had huge sensory issues regarding smell and taste so administering medicines was a war like situation. Potty time turned into an anxiety phase after a bout of constipation and lead to the use of diapers as a makeshift toilet!! His haircut was done when he slept. And head bath and hair drying turned out to be a tug of war. And everywhere my presence was warranted because somehow only I could manage it all. As a result I suffered from spondylitis, exhaustion, depression, and alienation and became a walking-talking zombie.
Jojo became majorly attached to me and would never lose sight of me( this has improved only slightly now). I too became very paranoid. I couldn’t trust him with anybody. We put Jojo in the centre and they promised sensory integration ( about which we had no clue). The initial months were excruciating as Jojo cried a lot while going there and we were never allowed an entry. Slowly my son adjusted to their set up and things fell into a routine.
My son would go to a regular school in the morning, followed by two hours of sensory integration plus special education. We were showed some videos of his progress after every four months wherein he obeyed their commands like a robot. We didn’t see any noticeable change in him at home. He seemed the same boy except that he now had the so called “compliance” as the therapists termed it. Then came another shocker. DPS, Chandigarh called us for a meeting. We were told that our child has to leave the school as he couldn’t cope up. He was just in LKG. Though he was a sweet kid and didn’t do anything to disrupt the class proceedings, he didn’t gain anything, neither contributed much. My husband wanted to fight tooth and nail. After all what happened to “Right to Education”?? I again accepted it gracefully and argued that in any case everything in school was foreign language for our son. So it was pointless in any case. I was considered a stupid moron by everyone in my family. I enrolled Jojo in the school section of the same centre he was going to for his SI therapy classes.
Then one day when he was around six years old, I happened to see him flipping pages of a picture book ( My first 100 words). I sat down with him and casually said, “ Apple?” And he pointed it out correctly. Next I asked him about ten more words in the same book (names of things he liked) and he pointed out each of them correctly. I was shocked , and utterly happy at the same time and I literally started dancing up and down in joy; flapping both my hands in glee. I kept repeating “HE KNOWS IT! HE KNOWS IT!” over and over again. By the same night I had prepared a list of things I needed to buy to start Jojo’s foray into the world of awareness of self and the universe at large.
And thus started his homeschooling. I started with things he liked and/or loved. I made my own flash cards customized to his liking. I worked with only receptive language. I knew he was a visual learner but realized that the visual part of his brain was far from my comprehension. I came to know that he had a rich visual vocabulary which was much greater than any other kid of his age or even some adults. I surfed the net once again but this time my search was for more books on autism rather than therapy or respite centres in the city. I ordered the books via Amazon and started devouring them with my voracious reading abilities. Autism became my world. He was responding to me, looked forward to our evening one on one sessions and was still unhappy going to the centre.
Though I was only focusing on receptive language, very soon Jojo started naming the flash cards too. At that time internet was not such a big thing yet and FB and YouTube weren’t our family friends so I had zero knowledge about special education/ ABA/ sensory integration / autism terminology jargon like compliance, expressive & receptive language, stimming, echolalia, reinforcement etc. I just went with my gut instinct. And a book by Temple Grandin became my temple.
I shared about Jojo’s enormous progress with his therapists at the centre only to be met with a lukewarm response and a general apathy by their boss. I wanted them to participate with me in educating my child but they just asked me to provide them a list of words that he knew and then did nothing about it. Finally the time came. I wanted to take this decision for a long time now but everything happens at its own pace. I finally withdrew my child from the centre and made him stay at home.
We started to learn together at around 6 in the evening and continued till 10:30 in the night. Jojo would sleep late and get up only by 12 the next morning. As a result he was fresh and energetic in the evening to sit through with me. I could not teach him between 9-5 because of my college schedule and this seemed the only possible alternative.
The changes were very noticeable. The changes were not only in his awareness about himself and his world, they were also about his choices, his opinions, his sensory issues, his emotions and his responses. I started preparing or purchasing or downloading his flash cards and worksheets wherever I was: at home, in college, in a shop…. I prepared and printed my own books and workbooks sourcing them and culling them from various sites and spiral binding them. And all of it was worth. They reaped rich dividends.
Jojo improved tremendously. He vocabulary increased manifold. He could express everything he wanted. And he opened his world to me. His world was extremely visual and layered. It was mind blowing. Slowly I realized that he knew so much ; much more than what we assumed. His only problem was others didn’t know his preferred language. And obviously I couldn’t expect the world to learn it too! So Jojo had to learn our language to express his feelings, to communicate his desires, to interact with people he loved, to make others know that he knows it all.
Since the very beginning I had introduced my son to movies. My first purchase for him was the Disney animated classic :The Jungle Book. Jojo enjoyed it a lot. He was hooked to the TV screen seeing the antics of Mowgli and his friends. Post that I have bought a thousand DVDs I guess : all the Disney classics, the marvel superheroes, the mythology blockbusters, etc. The list is endless. We shifted from Hindi versions to English on his request. He literally enjoyed seeing them, watched them repeatedly and made me worry as to whether it was just another stim. But slowly I realized that he could understand them partly and it wasn’t completely meaningless. These movies increased his awareness about the world : be it history, geography, science, civics, art, culture, food, festivals, and off course language. The next turning point came in recently when I bought a new TV : a bigger flat screen exclusively for Jojo. I installed it in his room. And then the magic happened. It was not overnight. It was gradual but unmistakable. Jojo started speaking full sentences, even paragraphs, meaningful ones… He started asking questions, also answering them. He started understanding others. He started articulating his thoughts very beautifully. His expression became refined. He showed his emotions well. He started emoting what he spoke. He had the correct pauses, the correct punctuation and it was all so magical ( just like Disney’s tagline : Movies, Magic and more !)
What had actually happened was that the big flat screen displayed the English subtitles of each movie clearly and while watching these movies Jojo paused at the end of each sentence and repeated those lines by reading them again replete with the correct expressions. The phonics helped him to read. The dialogues helped him to pronounce. The cinematic scenes provide him the social situations. And he started generalizing it slowly. And the best part was that all of this happened without my intervention. When we were busy with odd jobs and thought that Jojo was just wiling away his time sitting before the TV he was actually learning, slowly and silently. I chanced upon this magical development one fine day when I asked him to read few lines from a ladybird series and my son smooth sailed through it in a jiffy. It literally caught me off guard but I soon deciphered who his super smart teacher was and my joy knew no bounds. Movies have been the real game-changer in my son’s life.
Since then it’s has been a great, great ride because every single day my son surprises me within his limitless knowledge; his uncanny ability to observe minutest details about situations or human behaviour ( he is very good at face reading); his out of the world questions; his boundless empathy for all things living; his quest to know and research whether using google image search, wikihow, books, newspapers, pamphlets, advertisements, etc; his newspaper cartoon strips drawings about everything he sees, feels and comprehends; his ability to write heartfelt letters to people he likes; his quest to know the meaning of every new word he reads; his amazing amazing acting skills and the way he modulates his voice to produce astounding sound effects (as if he is a one man movie machine!)
Autism has opened up my world to an alternate way of being that is so different than mine and yet far more perfect. Everyday my son teaches me something new. I see the world in an entirely new way, one that I couldn’t have ever comprehended about… Yes there are many times when I feel depressed thinking how my son will cope with life and it’s complexities but then those are my typical parental instincts and I do remind myself that it’s best not to lose sleep on what lies in the future because nobody knows what’s in store for tomorrow. Make the best of today and the rest can wait…
Q) How did you nurture Devayan’s acting skills?
Well I didn’t take Jojo to any acting classes. I just wanted to tell him stories. I am myself a movie buff. And I instinctively thought that to introduce classic stories to my son, childrens’ movies were a safe bet. So I started buying movie DVDs for him. Initially they were majorly based on human-animal interaction as Jojo is very fond of animals. Later on he himself started deciding what he wanted to watch. The acting skills matured by themselves as he soaked in every scene and dialogue with great interest and started enacting them in front of the mirror. Later he gestured his family members to participate in acting out favourite scenes as he realized that majority of them needed more people. Luckily all of us complied as we all are very kid friendly. Even my driver and house help joined in. As a result Jojo had a an entire home team at his beck and call: a home theatre production. As things progressed, he needed props for his production house. And I had to scourge local markets, toy shops and finally Amazon to buy him the appropriate ones. These props included masks, moustaches, wigs, hats, spectacles, and even retro telephones. With time his interests diversified and once he could read the dialogues and comprehend their meaning, his skills sharpened. Over the years his interest in movies and acting and direction has encompassed all film genres. He is particularly fascinated with black and white movies and introduced me to 40s classics starring Bela Lugosi and Boris Karloff!! He is a walking talking encyclopaedia on movies, and actors and has learnt enormously from them.
Q) Your advice for other autism parents…
Well I have met all kinds of autism parents : parents of newly diagnosed ones to stalwarts and advocates of this field. I am not someone who has any authority on this subject. I, for one was a natural. Acceptance came easy to me. I am good with kids. I always wanted to be a teacher. I have this empathizing streak in me. I have a natural care giver type personality. I am quite understanding, open, flexible, self-sacrificing and have very strong maternal instincts. But I am not trying to boast about my traits here. What I would like to say is that parents of autistic kids need to have at least some of these traits, if not all. For me it was easy. But for others it might be an uphill task. So my advice to fellow parents is “ Become a child again”. To enter your kid’s world you have to be to be their friend, their confidante. You have to let go and let loose. You have to forget about what others are thinking because they never think about you in the first place. You have to re-centre your life around your child and be open to seeing the world through their eyes. You have to remind yourself that language commands should be simple, play therapy is the best therapy, laughing for no reason is imperative, the milestones will be within reach someday, behaviour patterns have an underlying cause, comparisons are unhealthy, selective blindness to what same age neurotypicals are achieving is mandatory, age old believes need to be challenged, learning need not be always academic, learning styles can be highly varied, and that the diagnosis is not the last word, the labels conferred don’t matter and at the end of the day your kid is far more than his condition and that magic happens but it’s gradual, it’s needs patience.
Q) How old are you Devayan?
I am 12 years old.
Q) Amazing acting in the Sherlock Holmes video Devayan. How long did it take to make it?
My mom shot the video in an hour in the morning. I didn’t practice as I knew all the scenes and dialogues. She added music and special sounds in the afternoon. I wanted my video on YouTube. So she put it online by night.
Q) Did you help your mom with the direction?
My mom didn’t direct it. She only took the video and edited it. I directed it.
Q) Splendid! Have you made any other videos of other shows or movies?
We shot a video on Vlad the impaler. My mom hasn’t edited it till now. We also made a movie Halloween Squad.
Q) What are your favourite movies?
I love all movies. I cant choose.
Q) Who is your favourite actor?
My favourite actor is Anthony Hopkins.
Q) He is indeed a good actor, what else do you like to watch on TV?
I don’t watch TV. I only watch movies. I watch YouTube videos on the computer.
Q) Do you play scrabble often? With parents or friends?
I have started playing scrabble with my mom. I don’t have friends.
Q) What are your hobbies Devayan?
I like to draw. I like to find out about things in google images and Wikihow. I like to read books. I like to write letters and stories. I like to dance to Hindi songs.
Q) How do you spend your day ?
I go to school in the morning. I come home and eat lunch and watch movies. My mom comes at 5 in the evening. Then we study. After study is over, I play with my grandparents. Then I have dinner and I sleep. On sundays I don’t study. I go out with mom to the mall or a movie or the library.
Q) Do you like to travel? Which places have you recently visited?
Yes I like to travel. I went to Delhi, Agra and Gwalior. I saw the Taj Mahal. I went to the Language school in Delhi (AFA), Kingdom of Dreams and Ski India in December.
Q) Are you planning to act in more plays?
Yes I love acting. I want to make more movies.
Q) Would you like to share your future plans with us?
I want to be an author so that I can work sitting in home. And I also want to be an actor. And I want to go to America to meet Anthony Hopkins.
Well, what can I say, other than salute the mom who worked tirelessly. Devayan, our best wishes are with you son, may all your dreams come true and May God Bless You!
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