My name is Kerbanoo D'Rozario, my husband and I are the proud parents of a 23 year old son and an 18 year old daughter. I would like to share my experience of what brought me here today to be a part of Parent to Parent.
After a perfect story book pregnancy with my first born, my son had the most traumatic birth. Yohaan came into this world paralyzed due to a clavicle break, aspirated and had asphyxia' causing him to have multiple seizures. I had no concept of what his life was going to be, the medical accident had left my husband and me so astounded & emotionless. I mechanically began doing everything to get him into a peaceful space. I had been an educator who had volunteered at schools for Children with Special Needs but was not educated enough to understand the depth of my challenges.
I had left home straight after high school, and after my education drowned myself into a career of Art and Design that I was always passionate about. Walter, my husband and I had wanted to settle in India as close to our parents as possible. Yohaan's birth changed our thought pattern and when, Walter got his next offer to work in New York we moved uprooting ourselves from our accustomed lifestyle and ambitious careers but leaving India and my parents was most devastating.
Yohaan's greatest teaching to me has been do not look at what a person cannot do or to worry about what he is going to be able to do but, to enjoy what he can do and embrace it. Yohaan is a young man who is physically challenged, in a wheelchair, completely dependent, non verbal and is fed by a g-tube. He has gone through school in an inclusion program, spoken with an augmentative device with his peers and has walked at the special games strapped in a device with complete support. His humor and yet serious personality have made me understand so much as we as a family have crossed over several medical hurdles.
In return, his sister has taught me to enjoy life with Yohaan like driving on an open road journey with a couple of bumps and a slight curve but the scenic view does not change. Life has not been as easy as it is written and we have had to go through our erratic times bringing up two children in two different styles of life and yet trying to bring about as much normality and harmony as possible without any emotional or physical family support. Socially we have included both our children equally and tried not to deprive our daughter with the emotional could haves and would haves but that, has been a stepper and more challenging hill to climb.
The Big Apple is culturally so similar to India but landing in New York was so emotionally cold and lonely, I had to make new attachments with people, build a space to call home, learn how to achieve a better medical and educational life for Yohaan. I was thankful for my upbeat personality and positive outlook that gave me the strength to move on this journey, now Yohaan was my educator. When I met up with the first evaluation team and support systems, I was oblivious of the fact that, I was getting involved with families taking them through the similar paths with me as I learned. I joined every group at school level PTA, SLT, support teams and attended every meeting that I learnt about at the State or city level, I made sure I was seen & heard because this was opening doors for me to be a better advocate.. The medical and school staff that I came across sent me contacts to reach out to advocate in different ways. I took these opportunities was able to support families and guide them about the correct language and respect of this new world that I had stepped into.
Being appointed as a NYC Regional Coordinator by Parents to Parent of NYS gives me an opportunity and a platform to be able to walk this walk with other parents and be able to reach out emotionally and advocate to even a larger population. It give me the good fortune to share what I have learnt to be able to make a difference in the lives of others. No one should ever have to take this journey alone.
Commencement address made by Kerbanoo D’Rozario, Regional Coordinator for Parent to Parent of NYS, New York City office on June 20, 2013
Good morning, to all Administrators, Teachers, Staff, Parent, Caregivers, Family & Friends Special Shout out & Congratulations to the Graduates of Q811 at QHST
Last Wednesday, I was at a Committee for Day Hab meeting, and at the end of the meal I opened a fortune cookie. It read… "You will receive some high prize or award soon”
I had just accepted this most honorable invitation to talk to a class of graduates and that too from Q811. What better award could I have been given?
I have it etched in my memory, the day I visited Q811 Marathon parkway in 1995. It has been an extension of Yohaan’s life for over 16 years, hence making it a part of our family. He had the opportunity to attend three of their sites and eventually graduated from QHST.