Poornima R Bhat

Rising Above Down Syndrome

The only thing tougher than being born with a disability is having a child who is born with one! When Poornima's son Prateek was born with Down Syndrome, there was no Google to help her make informed decisions. It took her instincts, and aptitude to raise the boy, and further raise awareness about the disability in society. Here is a woman who went from young and ignorant to the founder of ARIVU TRUST®.

I heard the word "Down Syndrome" for the first time in 1990. It was written in a corner of my son, Prateek's prescription given by his pediatrician. I was a young 22-year-old mother at the time, and thought it was the name of the medicine prescribed to my child. And so I asked what the purpose of this Down Syndrome medicine was.

What came next, left me shocked, scared, and shivering to my bones. I was explained in few words that it was a type of mental retardation. And that marked the beginning of our rounds of genetic testing, assessments, therapies, special education, and more...
Fast forward to year 2017. I sit confidently in my office, day in and day out, providing therapy to children with Autism, Down Syndrome, Attention Deficit Hyperactivity Disorder (ADHD) and learning disabilities to name a few. During the course of this job, I meet a lot of parents of children with disabilities. I reassure them, teach them techniques to better understand their child, comfort them, and cheer them on as much as possible.

Under the banner of ARIVU TRUST®, an NGO established by our family and inspired by Prateek, I run the Arivu Early Intervention Centre for Special Children. The name of our organisation 'Arivu' means awareness in our mother tongue, Kannada.

When I compare myself to the young and ignorant mother I was in 1990, I realise that I've come a long way. It was truly a journey driven by dreams and hopes, and realised by determination and hard work. It was an evolution from being a scared and confused mother, to a confident professional.

Prateek was born at a time when the internet was not available to the average Indian. And so, there was no way to Google information about the disability. We started our journey looking for answers, and being met with none.

This left me depressed. I refused to move out of the house for the first 6 months after he was diagnosed. I never went to the park, I never socialised, and I was petrified by the thought of losing Prateek due to a lack of awareness on how to care for a child with Down Syndrome.
Practicing yoga helped me come out of depression. It wasn't a fad at that time. Rather, something I picked up to help me stabilise myself mentally, and emotionally. Now, yoga isn't just a part of my lifestyle, I also teach it to kids with disabilities.

This also helped me start tackling Prateek's behavioural problems head-on. So when he refused to socialise with other children, I made it a point to regularly take him to our neighbour's homes, and parks. Initially, he would throw tantrums. Then slowly, he began to sit and watch as the other children played. And eventually, with a ton of encouragement, he was able to find it within himself to play with the other kids. The process took 6 months, and a lot of patience and perseverance.

When Prateek was 2 years old, we were introduced to a special school in Hyderabad. He started attending the Montessori classes at the special school soon after. And I started working there as a volunteer, and assistant to the teachers. This was the beginning of my professional journey.
In the years 1996 and 1997, I gave birth to two beautiful daughters. Alongside, I was also advocating for disabled children and their families. But to my plight, my ideas and opinions were not being heard by anyone - not by therapists, not by special educators, not even by family and friends.

To add to that, the fact that I was not earning was also being criticized in my social circle. I was coming to realise that I was being sidelined and viewed as a useless lady. I would've loved to work, but caring for a disabled son and two daughters was a full-time job. And without any reliable support, this was an impossible dream.

This made me start feeling low on a psychological and intellectual level. It was like I was going down a dark hole with no exit. But I wanted to lift myself out, and so I kept on thinking of a way out. Eventually, I found one.

I decided that the best way to move forward was to go back to college, and obtain a degree in special education. My husband said he would support me whole-heartedly, and indeed he did.
God must've felt that my decision was right, because out-of-the-blue, in the year 2000, my husband got the opportunity to go to USA as a visiting scientist. Our entire family moved to Dayton, Ohio which was home to the Wright State University. This got me extremely revved up.
A year after that, I visited the university and met Professor Dr. Jan La Forge, the lady who changed my life forever. She compared me to a piece of stone, that needed a lot of polishing to shine. I gave all the entrance exams and did not just pass the tests, but was also given a scholarship. And so, at the age of 32, with Prateek and his two sisters to be taken care of, a busy husband, and no support system, I enrolled myself for the Masters program in Rehabilitation Counselling.

My youngest daughter and I started our classes on the same day - she for Nursery, and I for my Masters in Counselling. In a nutshell, my Masters program was hectic and difficult. My professor was extremely strict and made me work more than the others in the program. She gave me the best training, and I am forever grateful to her for that.

Through the course of the program, I came to realise that the path I'd chosen for Prateek's training was the right one. It also taught me the technical names of things I wasn't aware of.
I'd introduced Prateek to music when he was a baby, and I learnt that this was known as music therapy. I would often darken the room and hold a light in front of my son's eyes, and I now learnt that it was a method to teach eye contact. I had massaged his limbs and helped him learn to walk, and hold things, which I now knew fell under Physiotherapy.

Teaching him every skill was always a battle between him and me. So while he emerged having learnt a skill, I would emerge having learnt the art of patience. He would often go on a strike when I took him for a walk, so I would just go on a bigger strike in response. I wanted to teach him positive behaviour, and would take the lead and play with children just so that he could follow and learn from my actions. I was trying to be his role model.

In the year 2010, we decided to move back to India as we wanted to contribute to the field of disabilities in our home country. By the year 2015, my youngest daughter had completed her 12th Std. education, and I was starting to feel like my responsibilities towards my daughter had decreased.

And so, in the same year, ARIVU TRUST® was registered in Mangaluru in Karnataka. My Early Intervention Centre for Special Children was born, and I started down a new path of counselling and rehabilitation.

But running an NGO is a very challenging task. It became difficult to make professionals, parents, and society at large believe and trust an honest and sincere mother interested in helping special children and their families. I derived the necessary strength to do so from my family, friends, and of course, Prateek.

ARIVU TRUST® currently provides services to over 35 children with Autism, ADHD, and other learning disabilities. In my professional life, I have met hundreds of families with children having behavior issues, and Prateek had taught me to listen to them effectively. I learnt empathy from him, and am now able to guide these families with special needs children. I have armed the mothers with professional advice, so they don't enter the battle field under-prepared.
Prateek has helped me help mothers come out of their different stages of depression, including shock and denial. Through our journey as mother and son, I have come to believe that a woman can have personal growth, and a fulfilling life alongside taking care of her special needs child.
But over and above, Prateek has helped me create awareness among my entire community by following me everywhere and enjoying everyone's company. We think that he is the best gift that God has given us, as he was my first teacher in understanding the world of disabilities. I believe that God has a role for every individual, and that the role set for me was that of a care-giver. For that I feel truly rewarded and blessed.

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