Talking Fingers - Meet Shiva Sanjith Vankamamidi

 Talking Fingers is a new series of posts, wherein, we will meet the authors of our book - Talking Fingers : Voices of Indian Non-Speaking Autistics. Talking Fingers is a path breaking book and the first of its kind in India that features the voices of Non-speaking Autistics. Today, let's meet the youngest of them all - Shiva Sanjith Vankamammidi. First, let's chat with parents - Sudhakar and Prashanthi.

 

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

 

Sanjith was a pre mature boy with low birth weight. We guess he is a fighter from day 1. He had developmental delays and was aloof from 11months. By the time he started walking, he was into spectrum. But got formally diagnosed at 2yrs. Like every parent, we were also running from pillar to post for every possible therapy with little focus on interaction(sadly). After an year, we realised what was missing and reduced the roaming. However, speech was always an issue.

With ABA, he learnt sign language. He could sign one whole sentence in signs. Slowly he could say two words “cookie” and “susu” …after that there wasn’t any progress. His motivation for speech is less. Also his health issues made it difficult. Tried many SLPs. But everyone insisted on verbal communication.

We wanted to implement AAC but sadly there was no help. Then pandemic happened. It opened doors to many online workshops. I got attended one such by Akhila Ma’am. Sanjith was always cranky during breakfasts. Once AAC system was in place, he seemed to settle down a lot. Mornings started looking good. Then we moved to dinner. Slowly, we started using for lessons, worksheets and academics. It just kicked off. Luckily, we could find a SLP (Anjana) who added to the momentum. Now we play games, converse, discuss and do anything just like a normal family.

                              

We have our share of ups and downs with his health issues with multiple regressions, anxieties, OCDs and countless sleepless nights. Coming this far is no less of a dream for us as a family. Sanjith means Victorious and he is surely emerging as one. We would like to thank Padma and Chitra for thinking of Sanjith as one of the contributors. Thank you!!!!

 

2.    Q) Such a wonderful journey and I admire your family's perseverance and attitude of never giving up when faced with challenges. It was an honour for us to be on this journey with Sanjith for our book. Would you like to share your message to other Autism parents..

For just diagnosed parents, please play a lot with your kid. Forget about all the tags. Kid is much more than a diagnosis. Once we lose their childhood, we never can see it again. Therapies are important but parent empowerment is equally important. With many online workshops and trainings, choose wisely and empower yourself. Communication is more important than speech. Whenever you visit a SLP, please don’t ask when will my kid speak. Instead ask them what are the strategies for developing communication. Avaz/PECS/sign language doesn’t take away speech. Infact they help in inclusion too. With proper planning, you can use them in classrooms also. Lastly, not all tantrums are behaviours. Kids do get health issues but they are brushed off as behaviours. Kid is trying to communicate something through these behaviours. Best wishes!!!

 

                         Now, let's chat with the star of the interview - Sanjith. Thank you for agreeing for the interview.

                                         

1.   How old are you Sanjith?

I am 12 yrs

2.   Where do you live?

I live in Hyderabad,Telangana

3.   I hear, you love listening to music. What language music do you prefer?

Soft and old Kishore kumar songs

4.   Please share a few favourite songs with us..

Pehla nasha, Ek ladki bheegi bhaagi si, Badi mushkil hain

5.   What is you favourite colour?

I like brown as cookies are brown.

6.   Favourite movie, please?

  Bhool bhulaiya 2

7.Do you remember the first word/sentence you communicated by typing?

No

8. That's ok. Do you communicate using pictures/or type words?

    I talk using pictures.

9. Please tell us about the prize you recently won for the poem you wrote, so happy and proud of you. Please share the poem

I feel very proud and happy.

                                         

10. Your art was recently selected for an art exhibition, please tell us about that. Share the art picture too.

Great!! I see many colours; I love it.

                                          

11. What medium do you use for your art ?

I use laptop and acrylic colours.

12. How was the experience of writing for the book - Talking Fingers?

I felt happy and it was amazing to tell people to be proud of me.

 

                 The one thing that I have time and again learnt from doing so many interviews is that family is the foundation on which the child's/young adult's confidence and personality is built. Surround your child with love, encouragement, understanding and support, they will blossom in spite of all the developmental hurdles. God Bless You Sanjith, may you shine bright and live a happy life!

 I hope you liked reading this interview. Sixteen such amazing non-speaking autistics share their thoughts and insights in our book - Talking Fingers. You can purchase the book on 

Amazon India

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.