Guest Post by Priya Sasi Murali
When Pranav was diagnosed with Pervasive Developmental Disorder (PDD-NOS) as an 18-month-old baby, his father and I felt lost and disheartened. But as the days passed, we were able to gather our courage. We began working through the emotional turmoil bit by bit. And it was around this time that we began our search for answers to how we could support Pranav to live his best life.
The Beginning of our Journey
Initially, we were overwhelmed by the range of therapies and interventions, especially since not many of them seemed to be scientifically proven. As my search for more proven and sophisticated approaches continued, I came across a diploma course in Special Education with a focus on Autism Spectrum Disorders (ASD) from a reputed school. I immediately enrolled in the course. This gave me a better understanding of ASD. Learning about the various conditions, characteristics, behaviors and proven teaching methodologies for children on the spectrum helped me better formulate ways in which I could support my son.
As Pranav grew older, so did my desire to empower my son. I continued to educate myself. I used to read a lot of books – from autobiographies of high functioning autistics to parent experiences, research articles, blogs, and other related writings. My thirst for knowledge and my will to empower my son led me to attend a lot of conferences. I interacted with senior professionals and experts in the field and gained many valuable insights.
My Goals
When Pranav was about 9-years old, I formulated two primary goals for us. One for Pranav and one for myself.
- For Pranav, the goal was to make him independent, functionally and financially.
- For me, it was to support Pranav as he worked to develop his personality and individuality.
With these goals in mind, we began working on a few areas we felt were essential to achieving them.
Functional Independence
To work towards independent living, we started with functional independence. We realized that his sensory issues are a huge hindrance for his Activities of Daily Living (ADL) independence. He was highly sensitive to some simple activities like washing his face, cutting his nails, a haircut among others. The loud sounds from a pressure cooker and blender also bothered him. We worked on normalizing these sensitive activities through constant modeling. Today Pranav has come a long way from where he started. He now helps me with chopping vegetables and watches calmly as I make chutney (a spicy Indian relish that requires the use of blender). At times he even operates the blender on his own with my presence.
Financial Independence
The next area of focus is financial independence. When Pranav was 10, I requested his school to move him to the vocational stream. I believe that this will enable Pranav to learn the skill set required for him to be financially independent. He is now getting trained in 3 or 4 vocational skills in his school and I make sure to work closely with his teachers in building those skills.
Safety
Safety is another area that is important while learning to be independent.. We started teaching him about household safety to begin with. Initially, we taught him not to touch anything that was hot. Steam was, therefore, a useful indicator for us. Pranav learned that if steam is coming out of any object/item, he should not touch it. Next, we moved to handle stoves. After a lot of hard-work and modeling, Pranav can now safely operate the stove by himself.
Road safety is something we practice regularly. I personally believe that every child should be taught road safety measures. Every day, we go for a walk for about half an hour and I never hold his hands. He walks straight on the footpath. Pranav has also learnt to cross manual signals and he is learning to cross automated signals as well. He is used to traveling in all sorts of public transport with an adult and loves it!
Working to Develop Pranav’s Personality
I want Pranav to be a self-regulated individual and to achieve this, I am teaching him to take care of his emotions. I have enabled him to understand, over time, to take NO for an answer. Especially if they involve his favorite items. This has enabled him to adjust to every situation he encounters. For instance, when our relatives visit us, he has to sleep in our room and has to give up his bed. Through regular work, we are now at a place where such requests do not trigger him.
Also, as I was teaching him to identify and make do with his emotions, I realized music helped him. That it was serving as a coping mechanism for him to regulate himself. Now he goes for regular music therapy sessions in a reputed musical team which works for children with special needs.
Pranav’s Rights
As Pranav works towards leading an independent life, we are working to create an awareness in him that he should be proud of who he is. That he has a whole community of people he can take support from. And that he, unfortunately, would have to work harder than others to secure his rights.
To this end, we make it a point to participate in all awareness drives and activities. We want him to bring to light with all pride and dignity that he is autistic. As a mother and as a person committed to social justice, I’m determined to enable Pranav to fight for his rights and create an inclusive society.
This is What Independence Looks Like
This year, on World Autism Acceptance Day, Pranav and I went shopping at Big Bazaar. He had his shopping list with him on Avaz. I had helped him create the list with options so that he could choose between two items of his choice. He was able to pick the items of his choice and get them billed. He also interacted with a couple of people around the store! Through the whole experience, Pranav remained calm and he thoroughly enjoyed himself. Truly, given a supportive environment and the right tools, children with autism can happily socialize and interact.
Did I mention that this was his first-ever shopping experience?
I took immense pride in what Pranav was able to achieve that day. It was an indication to me that we are moving in the right direction. That I am bringing up my child in a way that empowers him. I also feel blessed and pray to God to guide me in bringing him up in a way that he empowers himself as well as his community!
Priya is a qualified Special Educator specializing in Autism Spectrum Disorder (ASD). She lives with her family in Chennai, India. Her son Pranav is 14. He is non-verbal and has been diagnosed with a pervasive developmental disorder (PDD-NOS) which is one of the four Autism Spectrum Disorders.
We are grateful to Priya for having shared her story with us. Her journey would give some of us new ideas to try with our own children while opening the eyes of some others to the possibilities.
We would love to hear your thoughts and the kind of journey you are on personally or with someone you care for! If you or anyone in your circle is interested in sharing their story, do drop us a line! We’re listening! 🙂
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