Today, let’s meet a truly multi-faceted personality on the Autism spectrum, Ishan. He loves music and electrical circuits and painting. He is a thoughtful and loving child who sometimes asks questions related to God and life after death, reincarnation etc are at times way more matured than his age. He keeps questioning if God has his own close circuit Television to observe all, and questions why he can’t hear God as he knows, He helps and answers to prayers. Ishan lives in a wonderful world of imaginations, logical interpretations, electrical circuits to structure a house and channelizes his obsessions and anxieties into them.
Let’s start off by chatting with his mother, Aditi.
Q ) Would you like to briefly share your Autism journey with us….
Ans: My Autism journey started way back in 2003, which was five years before my son was born. I was in the final year of medical courses in MBBS, when I was introduced to Autism by one of my Professors in my medical college whose son had classical Autism and he and a group of parents had set up a parent support group named ‘Atma Pratyay’. At that time, I was having a parallel career in Indian classical dance (Odissi) and I was asked to train these children with Autism and other developmental challenges through dance and movements. At that point of time, I had no former training in it, but still I tried based on scientific articles that gave me an idea about how to work with them, and I staged a dance production of mine with four children, three of whom had Downs syndrome, and one had microcephaly, but to my dismay, could not make even one child with Autism Spectrum Disorder perform on stage. Autism and its management was a big question mark for me. In 2007, I went to US through marriage and was looking for research and job opportunities while I was working on preparations for my Licensure exams to practice medicine. My son was born in 2008, and like in all situations of families touched by ASD, I had no clue that he would be having ASD even after seeing and dealing with a quite a number ASD children since last 3-4 years. In 2009, I started my observership in Pediatrics in Thompson Center for Autism, under the guidance of a developmental pediatrician and got a hands on training on assessing children with Autism Spectrum Disorder. I met families and children and even adults with Aspergers coming for supportive therapies and medications and I had to study, each one’s clinical history, talk to their families and be with my mentor, throughout her outpatient clinic hours. When I used to return home from there or go to the day care to pick up my child, I could relate to most of the symptoms in my son Ishan. He had started speaking very early, but then stopped around 14 months of age. He was not talking at all, and seemed oblivious in his own world. A toy scooter would be turned upside down by him to roll the wheels with his hands and watch their motion than to actually ride on it. He would have a room full of toys but no toy could draw his attention for more than 30 seconds at the most. If taken on the lap, he would choose to be a wiggly worm and as if struggle hard in the clutches of loving hands except while sleeping.
I started questioning myself, if I was seeing all these features in him, as because I was finding them each day in other children visiting the Thompson Center or after listening to other Moms talking about the same experiences. But I sought help from the First Steps Program in Missouri, and the team of experts diagnosed him with speech and developmental delay, for which he started receiving early interventions in the form of speech and occupational therapy in Day care and at home. But, the situation was not easy to be handled with denial about his condition from his Dad and paternal Grandma. Under difficult family situations, me and Ishan had to return back to India in 2011, when from we started living in Kolkata, India with my parents.
Life was very hard to start from the very scratch, again for my career, and with Ishan having a huge change in his daily routine of life. I am thankful to Almighty for getting us connected to the right people and an excellent group of therapists, who worked with Ishan, me and my parents. I am indebted to Autism Society West Bengal and it’s Director Ms Indrani Basu, whom I consider as one of my mentors in my journey with Autism. Two other people who have guided and taught me and helped me seek and learn the different methods of Autism related intervention strategies were Ms Sarbani Mallick, Director of Bubbles Center for Autism, Bangalore and Dr. Sushama Nagarkar, Managing Trustee of Yash Charitable Trust, Mumbai. My parents were very supportive and their interest to learn and know about Autism management helped Ishan in a big way to beat the challenges. In the early years, after returning to India, for any workshop or training me and my parents were ready to attend, to understand Ishan and his issues. I started training myself in different courses, while I started focusing on neurophysiology of Autism through my ongoing post graduation studies (MD) in clinical Physiology and also trained myself in Dance and Movement Therapy (DMT) from Tata Institute of Social Sciences and Kolkata Sanved, where presently I am a guest faculty of ‘Therapeutics of Movement and Dance’. Thus with Ishan and his Autism, my life has completely changed and has become more channelized and goal oriented.
At present, I have formed a non profit trust with my founder trustees, Ms Bandhana Katoch and Mr. Asok Kumar Bandyopadhyay, a non- profit Trust named SAMYA Foundation for special needs, which envisions to set up clinical services for people with disabilities. At present it has regular batches for dance and movement therapy for children with special needs, and also conducts parent training programs, seminars and panel discussions for social awareness and other important issues. SAMYA has by now touched lives of about a hundred families living with Autism.
Q) Tell us more about dance and movement therapy and how it can help children on the Autism spectrum.
Dance and Movement Therapy (DMT) is a psychotherapeutic process used for addressing mostly mental health issues. It is an inner reflection and understanding of oneself. This is DMT for the general population.
I have modified the regular DMT model according to the requirements of children and adults with Autism. Very often children with Autism have difficulty finding their own space in the environment, the reason they might choose to move away from a crowd, push someone hard in an attempt to interact, run in front of a running vehicle being totally unaware of an impending danger, or push through a crowd and not be able to follow the pace of a moving crowd etc. The list is actually endless. Many would define them due to several causes ranging from sensory overload to behavioural issues. But in reality, the brain finds difficulty in executive planning and hence the reactions appear as awkward and odd. Through different group activities, I work on children with my methodology of DMT and try to make them adapt with those real life situations through regular practice.
DMT also helps people with Autism understand the fundamentals of non verbal communication. Actually a small percentage of verbal communication actually matters while the rest of our communication are mostly non verbal through, gestures, body language and expressions. People with Autism Spectrum Disorder have a hard time understanding other people even if they are very able having above normal IQs. The problem lies in their emotional understanding and response. Through DMT those areas are taken care of by the DMT program modified by me, trained at SAMYA Foundation for Special Needs.
In fact, different researches are on our way while we are trying to implement Dance and Movement Therapy as an important art based therapy, with needs assessment of every child.
Q) Your advice to other Autism parents…
Ans: My love to all parents of children with Autism at first. It’s a difficult journey to start with, a very difficult one indeed. But, with time even if challenges grow big as your child gets bigger, you get stronger and at a point of time you start enjoying this journey. For this journey, you will realize how you have emerged over time and made most use of your time in evolving as a better human, who might have sacrificed career, leisure hours, movie theatres, conjugal life but been a person strong enough to battle all odds.
Some practical suggestions now:
1. As soon as you feel your child is having some issues and not behaving like other regular children of his/her age, immediately go for screening for ASD. These days, M-CHAT is available online for all parents and then an expert in the field can always guide better. Don’t waste time paying heed to grandparents and relatives, who might ask you to wait and give you consolation with the phrase, ‘Einstein spoke at eight’. Your child is your child, and so you know the best. Seek early interventions in terms of behavioural modification, speech therapy, occupational therapy etc. A good guide will help you connect with the right persons.
2. Early intervention and only intervention can help your child. Trust your therapist and follow what he/she says. If you have a question, ask directly even if he/she seems offended. But again, please don’t be rude and keep asking questions for the sake of it, as that can be quite distractive and annoying for the therapist as it will interfere with the intervention. Always, try to be there with your child during therapy sessions, so that you can learn how it is done, assess the progress of your child and practice it at home. If you think the therapy is not yielding any result after months of practising it, and your money is going down the drain, seek a good therapist and move your child there. It’s your child and you are the best judge. But take the decision after proper observation. Parents, kindly keep your phone away during your child’s therapy sessions ☺
3. Get connected with Autism parents’ network and support groups available on social media. But, my sincere advice to you is not to spend your entire day over it. You should be there to seek specific help and judge the best option from the bunch of suggestions that will be offered to you, of course all out of good will. Also, please do not get into a competition of proving your child’s potential in these groups as that can create a very adverse effect on your mind and also some other parents’ mind. I would suggest not to do so, as I feel all children are equal.
4. Please try and pursue a hobby of your own and get that own space of yourself. It is important. I am a working Mom and I never advice any mother to leave her job and spend the whole day with her child as that actually helps none. It is more important, how much quality time a mother spends with her child than talking over the phone or texting when the child is left alone. The child needs to know that mother’s work is important too.
5. Try and get a group of parents together, to play, have fun, go out for parks and recreation get children involved so that they have a strong sense of bonding and start to feel important. Even getting your child involved in every household work, will develop independence of your child, engage the child meaningfully and develop a sense of responsibility in your child. Your child is on the spectrum of Autism, but he/ she is a human too. They should be respected as humans first.
6. Last and most important suggestion for you all is, please do not keep thinking ‘What after us?’ It’s a very natural thought, but trust me thinking of it will not help. If you can please start working on it. First of all, I feel in an attempt to raise the child it’s important to find the natural inclination of the child and try to channelize the child in that way so that it can become somewhere down the lane a happy and independent way of livelihood. For example, if a child loves to peel vegetables, then the parents can get the child effectively involved in cooking. Somewhere, down the lane this child as an adult may find a meaningful job where he can be happily earning a decent livelihood. Well, this was an example. I am very much a supporter of mainstreaming, and so I believe a supported living community should be there, but not secluded. This is completely my personal opinion. Parent groups together should start thinking on these lines, from the time their children are quite young and parents are able bodied. However, it is not as easy as it is said. I still feel, an ideal set up is yet to come up for adult rehabilitation.
Now let’s meet the star of the interview-Ishan. Thanks Ishan for taking out time to answer my questions
Q) How old are you Ishan?
Ans: I am ten years old.
Q) What are you studying?
Ans: I am studying in class IV in Apeejay School, Park Street, Kolkata.
Q) Your paintings are wonderful. What inspires you? Did you learn to paint/sketch? What medium do you use?
Ans: Thank you Ma’am.
All objects around me inspire me. I like to paint more than to draw. I draw mostly what I see. Clocks,houses, tables, chairs, fans and animals and birds. I don’t like to draw humans, except for some faces.
I do painting and sketch both, but I use watercolour mostly, and black dot pens, CD markers and white board markers. I can’t draw using crayons. I love to mix colors.
Q) Tell us more about the art exhibitions that featured your paintings...
My paintings were exhibited at
- ‘Colors of the spectrum’- Nehru Children’s Museum, Kolkata (2015) organized by Autism Society West Bengal
- ‘Aushadharon’- Victoria Memorial Hall, Kolkata (2016)
organized by Autism Society West Bengal
3.‘Colors of the Spectrum’- India Habitat Center, New Delhi (2017)
organized by Action For Autism.
4. ‘Art Exhibition on World Downs Syndrome Day’ – Nazrultirtha, Kolkata (2018) organized by Transcendental Knowledge Society
5. ‘Aushadharon’- Gaganendra Pradarshanshala, Kolkata (2018)
organized by Autism Society West Bengal.
6.‘Colors of the Spectrum’- India Habitat Center, New Delhi (2018)
organized by Action For Autism.
Q)That’s wonderful Ishan. How many paintings have you sold so far?
Ans: Till now five of my paintings have been sold at different exhibitions.
Q) Please tell us more about your love for music..
Ans: I love music more than songs. I like the music played on piano and violin. I like rhythm too. I learn to sing and how to play the Tabla. My music teacher is Ms Sampa Samaddar and my Guruji for Tabla is Pt. Tanmay Bose.
I am best friends with my art teacher Rajnarayan Haldar.
I love to sing Rabindrasangeet and patriotic songs of India. I also like country music.
Q) You also recently won a gold medal in international English Olympiad. Please share a few details
Ans: I like to study English and Maths. I find it at times difficult to write answers to questions tough, but I prefer objective questions with options for answers as in Olympiad. When I was selected for the state level and it was announced that for the next level my center will be in a different school, I was worried. My mother sought a letter from my school, and took permission to take me to the center a day before the exam to take a look all over the place. Change of place bothers me a lot. The new school where the center was, was very cooperative. The Principal’s room had two fans and I liked it a lot. The Principal Sir, upon knowing it immediately arranged that room for me for my exam on the next day. I love watching the spinning motion of fans, as that soothes my brain. I had a great time on the final day of the exams, in the room with my invigilator, watching the fans rotate while giving the exams.
Q) Tell us more about your interest in electrical circuits...
Ans: I love switches, switchboards, circuits, main switches, plugs and electrical gadgets since my very early childhood. I can remember which switch turns on which fan or light, in every house that I have visited even once. I like to know more about all kinds of main switches and circuit breakers. I wonder why in some main switches the red light flickers and want to know, can that red light ever get fused while the electric supply is still there. In fact, at times I can predict a power failure even a hour before. I can sense the smallest fluctuations of electric current and my ear picks up all that. By looking at a spinning fan, I can make out if it has four or five blades. I watch videos on You Tube on electric circuits, elevators etc. My dream is to have a big Birthday cake on one of my Birthdays with decoration of an entire electric circuit of a house on it. I am fascinated by elevators and their mechanisms too.
Q) Do you like traveling Ishan? What is your favourite or recent vacation?
Ans: I love travelling. I am always excited at the thought of it. I am never tired of long hours of travel by plane or by train or by road. I travel with my Mom, even when she goes for her conferences and workshops. I love to be her assistant while she trains others. I love sea and hills both. We will soon go to Kalimpong and I am looking forward to it. My Mom takes me every year for one long and one short trip for sure.
Q) What are your hobbies Ishan?
Ans: I love to listen to songs, read Ramayan and Mahbharata for children, see Disney cartoons, and watch the street lights going on and off in the evening and morning respectively. I love to watch the streetlights from our balcony. I like to practice Yoga too under the guidance of my Grandfather.
Q) You have already achieved so much at such an early age, what do you aspire to be as an adult?
Ans: I want to become an electrical engineer, an artist and a musician and make houses with my circuits someday. When I become 18, I want to get my driving license and when I am 30, I plan to marry and have one daughter and one son. 🙂 .
God Bless You Ishan and I am sure you have the blessings and good wishes of every one who has read your interview. With the help of a wonderful mom and family, I am positive you will realize all your dreams!
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