Dear reader, let's carry on with our journey of getting to know the families of Talking Fingers Vol.2. Today, we chat with Soumya and his dad, Soumen Upadhyay.
Please share your Autism journey with us..
Only seven days after he was born Soumya had a mild convulsion which we could not understand. A reputed paediatrician was immediately called at our residence, but he too could not diagnose that it was a convulsive attack. Now, when he was three and a half months old, series of convulsions forced us to hospitalise Soumya to a reputed hospital at Durgapur. The doctors there could not stop his convulsions through medications and after five days referred him to a hospital at Kolkata. Treatments continued but his convulsions in different forms also continued for years together. We took him to NIMHANS at Bengaluru when he was three years. It was there at NIMHANS he was diagnosed as a boy having Autism. Obviously we were also told there that it had no connection with the ongoing convulsions. Coming back to Durgapur, we admitted him to the only special school there. His treatments for convulsive disorders continued. We were consulting several doctors for that in Kolkata. We were lucky to get ample support from my sister and her husband in Kolkata. We consulted a very experienced doctor in 2001-02 and as per his medication the continuing convulsion of Soumya was stopped. He was ultimately diagnosed as a person with “Autism and also having mental retardation (Intellectual Disability)” by the Psychologists.
I heard the word Autism for the first time at NIMHANS. My wife knew it and she broke down as she came to know of that. In the early days of his life neither he could sit nor stand. We had to take him in our lap for years. He took years to walk. A three pronged wheeled device was made for him to walk. One day, when he was almost five-year-old, he started walking on his own. Our joy knew no bounds. He
He was extremely hyper and could not be seated in one place for minutes. He liked MUSIC and that was the key which I tried to increase his sitting span. I seated him and started singing the popular songs those he liked. Initially after listening to one or two songs he will move away but gradually I could increase his interest by choosing his most liked songs. Finally, I used to sing twenty-five songs at a stretch to increase his sitting span. His hyper activity was slightly controlled for this exercise.
We came in contact with Madam Merry Barua in 1999 and attended her several workshops. We learnt many things on Autism from those workshops. My sincere gratitude to her. But right from his early days we were swayed because of his severe disabilities and thus we also did not believe in his academic trainings. Some experts were also not keen for Academic training. The special educators in his school were also in the same boat. I realise today how much ignorant we all were! Rather I took him to a Speech Therapist. Soumya was so hyper then that he was not at all compromising with the Therapist. Even his eye to eye contact was very poor.
He liked to go to school every day but because of his severity in different spheres his trainings were very much neglected in the school too. He used to take his particular seat in his class and was very obedient to the teachers. But the teachers of the school were not Autism trained. Yet he was taught a little bit of functional academics. Amongst the best that he learnt in the school was the Socialisation. But at home his best friend was the Tape Recorder. He was always listening to several songs. He liked the songs of 50s, 60s, 70s mostly. Her mother was quite intelligent. She attended several workshops on Autism but was very serious about his food, clothing, health. Ironically she was not keen about his training. Myself was busy with job and other social works. After my return from outdoor works I looked after him. It was various social stories which really helped him. I also read out occasionally different small stories to him but to be truthful I was not at all regular. So his training at his early days were not properly oriented. His hyper activity continued. Moreover, her mother gradually lost all hopes in him and left us in June 2006. We had our mutual divorce in August 2007. I lived together with the family of my brother at Durgapur.
From then on his hyperactivity was significantly reduced. It was a great relief for all of us associated with him. His learning ability also increased.
I introduced Synthesiser to him in 2007. Since he loves Music, he became a good student of Synthesiser. I was taught to play the Synthesiser and in turn I taught him to play. It also helped him to reduce his hyperactivity. He has played synthesiser in several local functions here.
He loves to tour. We started to tour different places all over India since 2011. It helped him to get exposures and socialisation a lot. He regularly befriends with Tom Dick Harry mainly through gestures. It is an enjoyment to have him with me everywhere I go. Now-a-days I take tab for his communication.
After retirement from my service in January 2013, I came to Kolkata in March that year and that was the best decision I have taken so far. Here he got several exposures. His understanding level was good and that has increased a lot now. My journey with him is still continuing.
2. How did you develop communication skills in Soumya..
In regard to the communication skills, Soumya was communicating very much in his own style mainly through gestures. But those were not understandable to everyone.
During the middle of 2006, the computer was introduced to him. Since he was very fond of songs and music, several songs were stored there and he used to play them on his own. Later, he himself started playing songs in you tube. I understood that he has the learning ability and loves to be with computer all through the day. I started introducing him with typing. That was in 2007. Just a few sentences he used to type then, his name, his father`s name and the names of his close relatives. But as usual, it was occasional.
After my retirement from service in January 2013, I came to Kolkata in March. After settling here, I was much regular with him for typing but the matters were stereotyped. The COVID period made all the difference. I was having much more time with him. I started to show him different small stories visually through you tube and was making it understandable in Bengali also. I was encouraging him to type what he was told. Initially prompts were given in Bengali; he was writing in English. It was from the end of October 2020 that he began to type bigger sentences. Astonishing fact was that there were no spelling mistakes. Yes, much time had to be given. He was very slow. But now he is faster. But still now, in many times, he is made to understand the topic in Bengali. But he types on his own in English.
I gifted him a tab in 2021. When he learnt to use Jellow, he was ecstatic! He found that what he is typing there that was being heard in the speaker mode. The tab helped me more. Whenever he is angry or he is in off mood, I ask him to type that in tab. As he expresses there his mood changes. I heard from my father, “Express your wrath, you will be cleaned.” I realise how much true is that statement! Communicating properly makes wonder.
I really repent that I was very late to explore this potentiality of Soumya. He proved that I too underestimated his ability.
3. What hurdles have you faced in this journey and how did you overcome them?
My heart was broken when many of my close friends who showed their love and fondness for Soumya were not believing that Soumya is typing on his own. I am grateful to Bratati and Malay, who were strongly beside me then. Even some came out openly in Facebook Live creating opinions against these achievements of Aratrik, Soumya and others. I learnt to ignore them. I am learning to excuse them. Nothing is easy for our Children. It is hard for them to break the barriers of their disorder. We should respect their hard work.
4. Your advice for other parents, please.
Many children having Autism do not have speech. Their parents are trying hard for their speech and run for Speech Therapists. I would not discourage them. But there are many Alternatives these days. AAC is one of them. Why not try other mode of communication early? Even who have little speech they may also start this mode of communication. It is much easier for them once they pick up.
Now let's meet the star of the interview - Soumya Upadhyay
How old are you, Soumya?
My name is soumya upadhyay. I am thirty years old.
Please tell us about your work in a cafe, what are your duties there and your thoughts on it...
I am doing my internship there in that café. I am learning to work from the basics at the café. In last four months I learnt first to clean all the plates and dishes one by one, then spoons and glasses one after another. I also learnt to dry them. Then I was taught to keep all the utensils in order. Additionally, now I am learning to fold the tissue papers and cleaning the tables. I am enjoying my internship there.
What are your favourite subjects/topics?
My most favourite is to listen to good songs. My favourite topic is to write about my experience of the tours with babi. I love to write in a diary form.
Please tell us about your hobbies. What inspires you to write..
In most of my leisure time I sing the tunes of the songs. I love that. I can express myself by typing. By that, others can understand my expressions. This inspires me to write.
How do you spend your day?
After getting up, I clean up my bed and also the bed of my dad. Then I undergo exercise with my physio sir for one hour. Then after my breakfast I sit with babi to type and handwriting for almost two hours. After that I work with my aunt Mou some craft work. Then I go for a short walk with babi. After taking bath and lunch I take rest for some time. In the afternoon I go to the café with my aunt Mou for three days in a week for my internship. In other two days I go to my special educator during the afternoon. In the evening I go for a walk with babi for an hour. Rest of the time in the evening is my own leisure time. I play music in you tube at that time. I also play synthesiser for two to three days in a week.
6. Do you enjoy going on vacations, please tell us about your recent or favourite vacation.
I enjoy to tour very much. In last December I attended a nature study camp at the Himalayan range at kalimpong. Babi was with me there. We stayed in the tent for five days. I trekked in the mountain up and down for those five days with my guides. I came to know about many plants, flowers and birds. It was full of excitements. After the camp we went to a beautiful spot Jhandi from where I saw the mountain Kanchenjunga. It was excellent.
What is your preferred mode of communication - writing/typing?
Typing.
How was the experience of being a co-author in Talking Fingers book?
It was excellent. Many uncles and aunties congratulated me.
9. Your thoughts on how communication is more important than speech...
To me speech is also a mode of communication. I will like to speak if it was possible.
