Talking Fingers - Meet Tanya Joseph

    Dear friends, I am sure meeting the co-author families has been a wonderful experience for you as it has been for me. This is the last interview in the Talking Fingers Vol.2 series and we meet Tanya and her parents - Sini and Joseph Abraham and her amazing sister, Sarah. Let's start by chatting with the parents. 

 1. Please share your autism journey with us..

Tanya was about two and half when she was diagnosed. We were in Mumbai at that point of time.. We started with speech and occupational therapy. Meanwhile explored many other options as in homeo, ayurveda, acupuncture.. Nothing gave a solution that we desperately were looking for. It was becoming difficult to manage so we landed up in ICCONS, Shornnur. Tanya and her father spent about an year there undergoing therapies but we didn't see any desired improvement. In fact we think she developed separation anxiety which persists till date. From there we moved to Kolencherry medical college where they had an early development centre where Tanya did well in all activities other than speech. By five yrs of age she outgrew EDC and we put her in Govt UP school. They allowed me to be with her in the class. Meanwhile we discovered that she could write with support. But covid disrupted her schooling. She is in 8th std now. 

                                      

2. How did you develop communication skills in Tanya.

When Tanya was around 6yrs old we discovered she could write with holding my hand.. By then we realised she is non verbal. With practice she became better at writing.. She learns by observation. So her school stint was a big help in bringing about changes in all that she does. 

3. Please share your advice for other parents..

Have faith in your child and yourself. They are capable of more than what you think. Have patience and give them time. You know your child best and what works for her. Of all the people whom you will come across there will be very few who will not have an opinion on how you should handle your child and her needs. So be strong in shielding and respecting your child.

              Now let's meet the star of the interview - Tanya!

                                          

1. How old are you, Tanya..

I am 14 yrs old

2. Please tell us about your school..

I don't go to school now as my mother is not well

3. What are your favourite subjects/topics.

English and maths

4. Please tell us about your hobbies. 

I watch baking videos

5. Do you enjoy going on vacations, please tell us about your recent or favourite vacation..

We went to our native place

6. What is your preferred mode of communication - writing/typing. 

Writing

7. How was the experience of being a co-author in Talking Fingers book..

Yes. I enjoyed it.

         The interview will be incomplete without meeting Sarah, Tanya's elder sister, friend and guide. 

                                                          

1. Please tell us a little bit about yourself, what are you studying and do share your hobbies..

 Hi! My name is Sarah Joseph. I am an ordinary 18 year old that you would find anywhere, who has her own teenage issues. I'm Tanya's elder sister by 3 years and 8 months. I just completed my 12th.  I’m  a teenager with a passion for many things that I'm not sure about. Whether I’m diving into the latest video games, jamming out to my favorite tunes, or exploring the great outdoors, I’m always up for an adventure. School keeps me busy, but I thrive on challenges .

I love hanging out with friends, whether it's grabbing a bite to eat or just chilling and chatting about life. I'm a bit of a dreamer, always imagining what the world holds for me. I always have those small doubts regarding this world and it's people in my mind which never cease to exist.

Oh, and did I mention my love for Korean and Japanese culture? Kdrama, Kpop, Manga, Anime etc... It’s my little slice of happiness in this crazy world. So yeah, that’s me in a nutshell – just a teenager trying to navigate life .

2. How was the experience of growing up with Tanya, please share your thoughts..

Growing up with my nonverbal autistic sister in a society that often struggled to understand and accept neurodiversity presented its own unique set of challenges. We encountered ignorance, prejudice, and discrimination on multiple fronts, from schoolyard taunts to well-meaning but hurtful remarks from strangers.

One of the most difficult aspects was witnessing the isolation and exclusion my sister faced from her peers. It broke my heart to see her excluded from social gatherings, overlooked for opportunities, and treated differently simply because of her differences.

As her sibling, I often found myself advocating fiercely on her behalf, challenging misconceptions, and fighting for her right to be seen, heard, and included. It was exhausting at times, but I knew that standing up for her was not just important – it was essential.

Despite the challenges, growing up in a non-accepting society also taught me resilience, empathy, and the power of solidarity. It brought our family closer together as we rallied around my sister, offering unwavering support and love in the face of adversity.

And amidst the darkness, there were moments of light – small victories, acts of kindness, and glimmers of understanding that reminded me that change was possible, even in the most unlikely of places.

Ultimately, growing up with my nonverbal autistic sister in a non-accepting society taught me the importance of perseverance, compassion, and the transformative power of love. And though the journey was far from easy, I wouldn't trade it for anything in the world.

 She's may be the naughtiest person to me, the moody, never settling, prideful, parents' pet ..... but is also and forever my partner in crime, my confidante and best friend rolled into one. My grandmother used to call her "നിശബ്ദ മാലാഖ" or "silent angel" but i disagree . She may be silent but not thoughtless. she does not accept what she is given. She walks on her own choices. Her own interest ,likes, dislikes and thoughts. Society might consider her weak and pity her but she is strong , resilient and the most intelligent kid i have seen for her age. She observes everything , sees everything ,hears everything even though it might look like she is not concentrating. She makes her own opinion and does not rely on head things. She is the best sister I could ever hope for.

3. Your advice for other siblings please..

 Growing up with a nonverbal autistic sister in a society that struggles to accept neurodiversity was undoubtedly challenging, but it also provided me with invaluable lessons and insights. Here's some advice I'd offer to other siblings in similar situations:

1.Take the time to learn about autism and neurodiversity. Understanding your sibling's condition and the challenges she faces will not only help you support her better but also enable you to advocate effectively on her behalf.

2.  Stand up for your sibling and educate others about autism. Challenge misconceptions, confront discrimination, and advocate for inclusion and acceptance in your community.

3. Celebrate your sibling's unique strengths, talents, and perspectives. Recognize that neurodiversity is a natural part of the human experience and that differences should be celebrated rather than stigmatized.

4.  Surround yourself with understanding and supportive friends, family members, and allies who can offer encouragement, advice, and solidarity during challenging times.

5.  Put yourself in your sibling's shoes and strive to understand her experiences, emotions, and needs. Empathy is a powerful tool for building connection and fostering understanding.

6.  Remember to prioritize your own well-being and self-care. Growing up with a nonverbal autistic sister can be emotionally draining at times, so make sure to carve out time for activities that bring you joy and relaxation.

7. Celebrate your sister's achievements, no matter how small they may seem. Every milestone, whether it's learning a new skill or overcoming a challenge, is worth celebrating and acknowledging.

8. Don't hesitate to seek support from therapists, support groups, or other resources available to you. Talking to others who understand what you're going through can provide validation, comfort, and valuable insights.

Above all, remember that you are not alone. There are countless siblings out there who share similar experiences, and together, we can work towards creating a more inclusive and accepting society for individuals of all abilities.

              Blessed with an awesome family and great support, I am sure Tanya will continue to shine. God bless you dear Tanya and Sarah. 

To read the thoughts of our sixteen non-speaking Autistic self advocates, do purchase our book. It is available as both paperback and kindle edition in all Amazon stores worldwide HERE

DISCLAIMER: The views expressed by the guest in this interview are their own independent opinions and do not necessarily reflect the views of the host and owner of the blog. Readers are advised to exercise their own discretion and seek professional advice where necessary.

Talking Fingers - Meet Dyutit Gopinathan

Dear readers and friends, Talking Fingers co-author series is almost reaching an end but your love and support for our co-authors means a world to us. It encourages us to reach for greater heights and fills us with renewed energy to carry forward the self-advocacy so that we can create a better tomorrow for everyone. Today, let's meet our co-author, Dyutit and his parents - Mini Dwivedi Gopinathan, Suresh Babu Gopinathan and his little sister Devna. Let's chat with the parents:

                            

Q1: Please share your autism journey with us...

A: “As parents, when Dyutit was diagnosed with autism, our world shifted in unexpected ways. We found ourselves on a path we hadn't anticipated, filled with uncertainty and questions. But amidst the chaos, we discovered a newfound purpose—to create a sanctuary where families like ours could thrive. Thus, PlayStreet Specially Abled Educare Trust was born, a beacon of hope and acceptance in a world of challenges.”

Q2: How did you develop communication skills in Dyutit?

A: “Communication became the cornerstone of Dyutit's growth. From the earliest days, we knew that understanding his unique voice was essential. Through sensory integration and innovative tools like PlayTalk, we embarked on a journey of connection. With patience and dedication, we unlocked the door to his inner world, fostering a symphony of understanding amidst the challenges of autism.”

Q3: What hurdles have you faced in this journey and how did you overcome them?

A: “Our journey with Dyutit has been filled with hurdles, from dyspraxia to panic attacks. Each obstacle presented a new challenge, but with resilience and love, we faced them head-on. Through understanding and perseverance, we overcame hurdles, forging a path of growth and empowerment for Dyutit and ourselves.”

Q4: Your advice for other parents, please.

A: “To fellow parents on a similar journey, we offer this advice: believe in your child. Embrace acceptance, champion differences, and foster connection. Through coregulation and unwavering support, you can nurture your child's potential and foster a symphony of growth and understanding. Remember, you are not alone—embrace the journey, and let love be your guide.

This journey with Dyutit has taught us more than we could have imagined. Through challenges and triumphs, we've grown as parents and as individuals, guided by the unwavering love we have for our son. As we continue on this path, we hold fast to the belief that with love, understanding, and acceptance, anything is possible.”

Now, let's meet the star of the interview - Dyutit

 

Q1: How old are you, Dyutit?

A: "I am 17 years old."

Q2: Please tell us about your school.

A: "I go to PlayStreet. It's big, and I love coming here because I can learn and have fun with everyone. Everyone is very helpful and loves me for who I am. They've always helped me get things across even when it is difficult at times. I have learned many things here. My favorite is learning to type."

Q3: What are your favorite subjects/topics?

A: "I used to like science, but now I want to read real-life stories."

Q4: Please tell us about your hobbies. What inspires you to write?

A: "My hobbies are typing my thoughts, watching movies, and painting. I want people to understand what I think. I want to communicate with the entire world."

Q5: How do you spend your day?

A: "I have spent my days learning new things. I like to sleep, paint, sometimes play by myself, and watch videos."

Q6: Do you enjoy going on vacations ... Please tell us about your recent or favorite vacation.

A: "Yes, I like to go for vacations. In Pondicherry, I played in water and laughed a lot with papa and Devna. I like fun in the mall on trampolines on Sundays. I like the sky when I went to the forest with my family. I liked the cold mountains in Kashmir."

                                 

            

Q7: What is your preferred mode of communication - writing/typing? Please share a few details.

A: "Typing. Because I am not confident in writing as I feel everyone judges that and corrects it on paper, so typing calms me down."

Q8: How was the experience of being a co-author in the Talking Fingers book?

A: "Nice, I have liked the experience. I talked for all the nonverbal dyspraxic talent in the book. Echoes are not spoken; they are sounds of my voiceless friends."

Q9: Your thoughts on how communication is more important than speech?

A: "I feel even non-verbal individuals want to play, dance, and laugh, so why is not having a voice stopping them? I can have other ways of communicating to tell how I feel, how I want my life to brim like it’s my way… I like speech, voiceless!"

Dyutit's journey is a testament to the resilience of the human spirit and the boundless possibilities that exist within every individual. To read his responses and get to know sixteen such powerful self advocates, please buy and read our book - Talking Fingers. It's available in all Amazon stores worldwide, both as a paperback and kindle version - HERE

DISCLAIMER: The views expressed by the guest in this interview are their own independent opinions and do not necessarily reflect the views of the host and owner of the blog. Readers are advised to exercise their own discretion and seek professional advice where necessary.

Talking Fingers - Meet Saran Kumar

   Hi friends, thank you for reaching out and sharing how our co-author families are inspiring you. Carrying forward our series, let meet Saran Kumar's family and chat with his mom, Ambiga and his elder brother, Kiran Kumar.

                                  

Q) Please share your autism journey with our readers..

When i first heard about saran is with autism, the first question in my mind is "why"?

Then I asked the professionals, what will be the outcome, what is the prognosis.

From day one I wanted to go through this journey with saran, in spite of so many disputes, argument, heated words from near and dears.

I even talked about separation from my husband, to journey with saran.

I came to Chennai, wanted to understand more about Saran, took up diploma in special education in Clarke school, Mylapore.

Along with saran everyday I travelled 30 kms by bus to attend the course.

After a year saran's dad arranged a car for pickup and drop. I finished the course, and learnt about autism through a difficult journey.

One thing I decided I'll help my Saran to live on this society in spite of so many hurdles, because " Autism is not a disease, it's a condition. Communication and social interaction are the hurdles"

YES I'LL LIVE FOR SARAN.

Q) How did you develop communication skill in Saran?

Since verbal mode is a minimal chance, I decided to work on other modes of communication

I learnt that "Saran's lot of behavior issues is because of his communication issues.

First I started to observe him and noted down, why, when, how, what the behavior occurs.

What is the consequence

What all positive part of him

What all his negatives

Then I planned a schedule for his day to day activities, charts, timetable..

My elder son helped me a lot as he is a very good artist.

Started with picture communication

When his tantrums came down, slowly introduced word exchange communication

Then typing only "yes" "no" for simple questions

Reading with him whether he concentrates or not simple books.

Always on the working mode as special educator and not a mom.

Slowly he started typing simple one line answers, and he developed as such

Our schedule is very formal till he goes to bed.

My communication will be two way with him I'll ask questions, I'll answer for it.

Sometimes he will laugh endlessly,..

Saran is my son, that's all I knew. 

Q) What hurdles have you faced in this journey, how did you overcome it...

Hurdles are my road and path everyday.

Saran behavior in public places created a scene.

In family functions we were pointed out.

My husband has been posted outstation often.

Our outings became a nightmare for his brother and dad.

No one is happy when we were around, because Saran is crying, screaming, scratching and biting.

Some of our outing were, I and saran  have separate table when we go out for dinner with family

Stopped wearing sarees as it will be pulled out in public by saran

My mom, brother, his wife, kiran are my soulmates for few years till Saran was thirteen.

Every time I'll speak to my husband about Saran, how to handle him, understand and accept him.

On his thirteenth birthday Saran called "appa" on that moment.

My very big support is my husband.

I did my B-ed, became principal, worked for 15 years.

But my everyday scheduled is same from younger years.

First priority for everyday life skills.

Then communication through typing.

Then everyday outing to different public places

Learnt baking along with him.

Never turned back to "why me"

Only "how to"

Q) Please share your advice to other parents.

My advice as a mom "our son/daughter came from us.

We have to accept, understand, help, and love unconditionally.

If you show all the three, sure they'll respond back immensely and I believe they are God's children.

They are pure, true, and clean.

Mother is the first teacher and the best teacher.

We mother can transform our children lives 

Now, let's chat with the star of he interview - Saran

                               

1.How old are you?

I am quarter of 27.

2.Please tell us about your cafe?

The cafe blend and bite is a dream come true for my mom. She wants me to

be part of this society. It was designed by my anna(elder brother) and materialised by appa(dad)

3.How is experience of running the cafe? What are your duties there?

I am the owner as well the worker. I open the shutter my work is to arrange

the four chairs outside the table and benches inside, fill water cans and

arrange the work place, bring all needed utilities from cooler, clean up the jars with cloth as it will be dust free, cover the dust bin. I will attend the customers.

4.Please tell about your hobbies. What inspires to write.

My hobbies baking cooking. My voice is my writing.

5. How do you spend your day?

In the shop, at home with mummy helping baking, rest after lunch in the

shop, then back home. Enjoy my travel by car to my home.

6.Do you enjoy going on vacations? Please tell us about your recent or

favourite vacation.

I enjoy long drive in car ,to my chithi place. Recently to food expo dinning in

restaurant.

7.what is your preferred mode of communication - writing/typing. 

My mummy taught me typing.

8. How was the experience of being a co-author in Talking Fingers book?

Being a part, very proud moment my congrats to each one involved. I loved reading the book.

9.Your thoughts on how communication is more important than speech.

Communication is important irrelevant of speech but that mode is baseline.

The interview would be incomplete without getting to know Saran's elder brother - Kiran Kumar

                                    

1. Please tell us a little bit about yourself, and do share your hobbies.

I am Kiran Kumar, four years elder to Saran Kumar. I am a post graduate in construction management and am currently running a FMCG distribution network named Arcane Foods. We deal in distribution of cooking oils and food products. I am married to Priyanka who works as a software consultant in a private IT firm.

My hobbies are drawing, painting, cooking and playing badminton

2. How was the experience of growing up with saran, please share your thoughts.

Like every brother relationship! I didn’t see any difference as I was made aware of Saran’s way of approach to things by my parents at the beginning of ages. To take care of Saran, my mother made me self-dependent on day-to-day basis. I think it made me a lot focused and it’s a good thing that one is self-reliant on life these days. 

To be exact, my experience with Saran always included my mother as we three were always in the picture, whenever there was a situation. Every person has their own way of expressing their emotions in different ways. Saran has his own way. That is how I see him and I don’t care about others and how they perceive him.

3. Please share your advice for other siblings..

Accept them. Yes, they make mistakes, they make you less important, they make you angry. But it's not their intention, it's their way of showing their love towards you. We have a whole big world to explore, but we (you and your parents) are their world. Don’t reject them. Accept them of however they are, because they accepted us without giving a second thought.

With the love and support of such a loving family, I am happy that Saran is on his way to leading an independent life as it's a dream come true! To meet 16 such awesome self-advocates and read their thoughts, please buy our book. It's available in all Amazon stores worldwide HERE

Talking Fingers - Meet Soumya Upadhyay

 

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.

                                          

1. 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

1. How old are you, Soumya?

My name is soumya upadhyay. I am thirty years old.

2. 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. 

3. 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. 

4. 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.

5. 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.

7. What is your preferred mode of communication - writing/typing?

Typing.

8. 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.

              This interview is an inspiration to never give up and keep trying and one day, all the efforts will bear a fruit. God bless you dear Soumya, may all your dreams come true. To read the thoughts of 16 such amazing self-advocates, please buy our book. It's available in all Amazon worldwide HERE

                                                                                                                                                                                  

DISCLAIMER: The views expressed by the guest in this interview are their own independent opinions and do not necessarily reflect the views of the host and owner of the blog. Readers are advised to exercise their own discretion and seek professional advice where necessary.

Talking Fingers - Meet Gautam Panda

Getting to know the families of our co-authors has been a memorable experience for me and I hope you are as inspired as I am! Carrying forward our journey, let's meet - Gautam Panda and his family, Swarnalatha and Dr. Chitta Ranjan Panda and the sister, Bhavna.

                                 

1. Would you like to share your Autism journey with our readers..

 It was quite shocking when our 22yr old son Gautam(Chinu) was first diagnosed to have ‘Autism’ around the age of 2 and half years of age when he did not develop speech and had lack of socialization and communication. Although Gautam’s father is a doctor himself, we had little idea then about ASD. We we’re absolutely clueless about how we are going to deal with the child and his future. The initial part of raising our son, teaching him socialization, meaningful communication and fitting him is a school environment was the most difficult part of the journey. Subsequently after complete acceptance of his condition, we have started working on different aspects like controlling his hyperactivity, improving his focus in areas of his interest like sporting activities, expressing his thoughts by typing in computer etc. where his mother has the greatest role. Besides Gautam’s mother has formed a parent association and a therapy center under ‘Manage Autism Now(MAN) Trust’ to keep Gautam and the other Autistic children engaged in different activities along with various therapy as a part of their special need. She has a lot of future plan also for making a dedicated center for home stay and rehabilitation of the autistic children. 

2. How did you develop communication skills in Gautam..

 Since Gautam is non-verbal, we first started to make him respond to verbal instructions in our mother tongue Odia as well as in English. It in fact took many years for him to respond appropriately to our commands as well as to other caregivers in our Therapy center. Besides we encountered him to type his feelings on a computer, which he is doing in spite of taking a lot of time to do so.

3.  Please share about the hurdles you faced and how did you overcome them..

 We tried to take him to a normal school for formal education, but it was difficult for him to sit in the classroom, and also difficult for other children and teachers to adjust to his behavioral problems and tantrums. So we taught him at home, and subsequently his mother established a therapy center for carrying out various activities with other children affected with ASD, with the help of specially trained therapist and educators. All the children in our center have improved a lot. 

4. Please share your advice for other parents.

 Our advice to other parents is first to accept the child as he is, and to know that their children are much more intelligent, greater perception of things than most of us and have great hidden talents. Parents should work hard with passion and dedication in recognizing their special talent and nurturing them, to make them self confident and give them happiness and joy. Whenever possible, form a peer group for these children to engage them in group activities which they like. This is a life long mission which every parent should be prepared to undertake with positive attitude and dedication.

                   Now, let's chat with the star of the interview  - Gautam

                         

 1. How old are you, Gautam.. 

I am a 2001 born young boy, called by my nick name 'Chinu' by all my family members, school group and well wishers. It souds cool to me.

 2. Please tell us about your school.. 

I love my school " Autism Therapy Centre" near Sikhar chandi hill and temple, lovely environment, big, airy, well lighted class room, just suitable big playground, cool garden. I enjoy  all stretching activities like yoga, dance, outdoor games, especially running. I don't enjoy sitting activity class like art and craft except water games.

 3. What are your favourite subjects/topics Chinu

I like thinking a lot and talk to you all. Yes, reasoning studies I enjoy.

 4. Please tell us about your hobbies. What inspires you to write..

I love running under huge open sky like a bird. I enjoy playing cricket, tennis, football, also jumping sports. My cool thinking, environment, nature and of course my strong Mama, Nalini aunty, Usha aunty and few more inspire me to talk. 

5. How do you spend your day.. 

I go to our Kalinga stadium at 4:45AM and return by 7 AM with my Kabi uncle and play most of my games, specially enjoy my running on the synthetic track. Around 1PM, I go to my school with Mama, Kabi Uncle and return by 6PM. Then enjoy my shower bath, music, mail and talks with my family members.

6. Do you enjoy going on vacations, please tell us about your recent or favourite vacation.. 

  Definitely, enjoy outing on vacation. Recently, Phulbani trip was good. We enjoy school family picnic also.

 7. What is your preferred mode of communication - writing/typing. Please share a few details.

 I only communicate through talking on my desktop key board. Yes, sometimes by pointing few articles even. 

8. How was the experience of being a co-author in Talking Fingers book.. 

I don't know exactly but I like to answer questions always.

 9. Your thoughts on how communication is more important than speech..

Look, I need me to talk through my key boars with you all to understand, feel my wishes, needs and feelings, always. I can't do it when not in my control due to my uneven neural impacts on my skin and mind.

                A sibling plays a crucial role in the Autism family and this interview would be incomplete without getting to know Bhavna, Gautam's sister :

                           

1. Please tell us about your work and hobbies..               

 Hi. I’m Bhavna. Chinu’s elder sister by 8 years, 2 months and 10 days. Chinu calls me Guddi Nani. ‘Nani’ is elder sister, in Odia language. I am a doctor, pretty much introverted. My hobbies include reading miscellaneous subjects and topics, photography and discovering new genres of music. Gautam (or Chinu, his nickname) was my only prayer answered. I had always yearned for a younger brother. A constant friend and presence. Growing up with Chinu taught me the value of presence over futile, endless conversations. It taught me how to coexist in the same space, do our respective stuff without getting in each other’s way. I learnt ‘parallel play’ before it was theorised as a concept.

 2. How was the experience of growing up with Gautam..

Growing up with him has made me more empathetic as a person. I learnt to put myself in another’s shoes, imagine where they are coming from. Chinu got me out of my own head. Before him, I did not know how it would be like to always look out for another person. The camaraderie of sharing every meal and snack. Putting their comfort and convenience over one’s own. It took him a while before he got accustomed to sitting near me. Responding to me. Once he got comfortable, there was no looking back. I never used to go to the gents’ section for shopping before him. Growing up with him made me less awkward, and more assertive. I read more and more about neurodivergence and resonated with a lot of observations. There was never a lonely moment when Chinu was around. His effortless happiness and inexplicable joy brightens up my mood more than he could ever know. He is the best thing that has ever happened to me. 

3.Please share your advice for other siblings..

The interpersonal dynamics between siblings would always be different, subject to a lot of innate and environmental factors. The stability of family structures, individual equations with parents, social circles and so on. My only advice to others would be to cherish them. Because they are irreplaceable. If there is one person who has lived through, and weathered through all the madness and the highs and lows of your family - it’s your sibling. They take after you. They look up to you. It’s very rare to have a constant person in your corner. Your sibling would always be. So have their backs, no matter what. Amidst all the chaos in the world, it helps to be each other’s anchor. Take more pictures. Make more memories.

        God bless you dear Gautam and may all your dreams come true. Want to meet and get to know 16 such awesome non-speaking autistic individuals? Grab our book - Talking Fingers, it's available on all Amazon stores worldwide HERE

DISCLAIMER: The views expressed by the guest in this interview are their own independent opinions and do not necessarily reflect the views of the host and owner of the blog. Readers are advised to exercise their own discretion and seek professional advice where necessary.