Augmentative communication

 The Big Picture

#voicesforinclusion-9 

The Dey Family- Part 2. In conversation with Bratati, Malay and Aratrik.

1) What are your views on inclusion? 

Bratati: Inclusion means to have access to services. We want our children to have access to mainstream education services, health care systems, and facilities like gyms, swimming pools, clubs. At large, inclusion in the society. In a broader sense, inclusion, for me, is a mindset. People are not inclusive by nature, and we are quick to judge people. If we see a large gathering of people, you shall see conflicts of interest. Since exclusion comes naturally to us, inclusion must be actively practised for it to occur. Acceptance is very important. When our children grow up and become young people, things  differ greatly from what they were for us. We as adults are members of many organisations and travel to various locations. I am speaking from my personal experience. When you mention disability, then even gaining a membership becomes difficult.

 2) An Autism diagnosis is handled differently by various parents. What is your narrative?

Bratati: It is our responsibility to bring up our children irrespective of who they are. In the early days of the diagnosis, our social life took a backseat, but we never perceived it as a loss. A diagnosis of autism is sad, no one will claim otherwise. But we have always accepted him wholeheartedly. I can say with confidence that we gave it our all.

                                We started SENSE in 2012, primarily for his intervention, so he could have regular consistent intervention at home. We used a portion of our home for that purpose. Early on, we helped him to get used to people coming to our house, taking part in social activities, with him being at the centre of everything.

Malay: At first, both our social and professional lives were affected. Many parents feel they didn't receive help from family, friends, or therapists.  We wanted to give him a life just like ours. This is our narrative, and this is what we set out to do for him. We were determined to use our social connections to help him. Another thing that we realised was even with therapies, our engagement with him, he would still get bored. We also realised we could not give up our jobs as financial stability is also an important factor. We cannot engage him all the time. So, SENSE was a step in that direction. There would be teachers, children, parents, doing various things in an organised fashion in an establishment. We actively sought collaborations with clubs, schools, individuals to find activities that were both fun and engaging.

 3) Could you tell us  about SENSE

 Bratati: SENSE stand for Chinsura Sense Society. We work with people with autism and IDD. We stay 50kms away from Kolkata and services were not readily available. The commute was taking its toll on us. I was also working. Travelling once a week to get services for Aratrik was not effective either. We felt that if we establish a small set up at our place, he could get intervention and the company of his peers. These things were foremost on our mind, when we set up SENSE. Subsequently, we registered SENSE and is now managed by professionals. On my days off or during my holidays, I fill in as necessary.

 

 4) Aratrik mentioned his need for self-advocacy, comes from being a part of various social campaigns. What is your take on it?

         Bratati: Even before our marriage, both me and Malay were engaged in various social activities and continued to do so after marriage.  Aratrik accompanied us everywhere. Right from his childhood days, he was involved in all our activities. I thought he was a silent spectator; but he has been imbibing all these values silently. Once he started expressing himself through typing, we got to know his understanding and awareness of things.

Malay: When Aratrik was in his teens, 15-16 years, he needed the social outings, and it was not happening. We decided to involve him in many events, like taking part in sports events, blood donation camps, relief operation etc. all of which was spontaneously done. 

 5) In terms of parenting responsibilities, how do you handle the various commitments?

Malay: She reads a lot of autism literature and is well versed on the subject. I take on the social networking and administrative work. But other than that, we are mostly on the same page, as far as parenting responsibilities go

6) Could you tell us about your journey with Aratrik?

Bratati:   Aratrik was diagnosed as  low functioning autism. He regressed when he was around one and half years old. He could utter 2-3 words. His fundamental challenge was communication. He was communicating through gestures. He has been an avid music lover since childhood. His teachers told me he could write when we could hold his hand. I learnt about RPM from internet and incorporated some techniques in his sessions. We started with functional academics. In 2019 November, we taught him to type. He had a huge issue using his hands. My goal was extremely specific. We set a small task; he could type a bio data form. Initially, he needed a lot of physical support. In 2021 June, he started answering questions in single words. We understood he could comprehend. So, we taught him the English language and started with the Oxford English Primer, Science and General knowledge books. I sing and love poetry. We used a lot of singing when he was very young to engage him. In November 2021, he typed his first sentence. It was about a character in a movie. His subsequent learning curve has been rather steep. He wrote his first poem in Jan 2022.

At this point in our conversation, Aratrik joined us.

7) Aratrik, could you tell me about the book, Sophie’s world, that you are reading?

         Aratrik: Sophie's world is a book by Jostein Gaarder I am currently reading. It's a book on philosophy. Good books are like good friends.no one can take the friend from you. Understand that nobody can betray me if books are my friend.  Very much aware that nobody can be my friend because of my disability.

(Malay attempted to get him to refocus on the topic and revealed that he has been going through some turmoil the last 2-3 days.).

8) When surrounded by loved ones, where does the thought of betrayal come from?

             Aratrik: Understand that my friend loves another man.

                                    Aratrik stood up and left, and we concluded the interview on that note. It was a pleasure getting to know the Deys. Here is a family that has made the best of the circumstances.