Crystal Jones in her office at the Cerebral Palsy Association’s El Soccorro Headquarters. Make-up by Shenelle Escayg, photography by Mark Lyndersay
Originally published in Express Woman, October 16, 2016
My name is Crystal and I am the founder and President of the Cerebral Palsy Association of Trinidad and Tobago. It all started twenty years ago when I had my first child, a handsome little boy named Atiba Abdool. During my labor I kept telling the nurse that he was right in my passage way and she kept insisting, “No you are not ready”.
The duration of time that he was there caused lack of oxygen to his brain as these two nurses laid their heads on a desk in the wee hours of the morning. He finally came out and they then rushed to my side. It was too late. The damage was done but they still termed it as a normal delivery, no complications.
Three months later I took him to the district health center to get his immunization and my son was diagnosed with Cerebral Palsy. I was lost, I did not know what was Cerebral Palsy and the doctor advised me to look it up on the internet. No explanation, no brochure, nothing. I thought it was like a cold that would go away.
My son got his first seizure that same day, he was three months old. I came out of the car with my son shaking uncontrollably in my arms. I started to scream when his eyes turned up in his head and froth ran out his mouth. I thought he was going to die.
We rushed him to the hospital and they gave him valium to stop the seizures. The doctor believed that he was comforting me when he said, “Don’t worry, children like this don’t live too long”. I was literally in shock!
I left my job at St. Clair Medical as a Nursing Assistant because my son required full time therapy and care. His father thought of all the things I might have done that resulted in this and I thought the same towards him. Our relationship became strained and we blamed each other until it led to our separation.
I was now a single mother of a child that required all my attention. I also had two other children after my first son, so I understood that his disability was due to lack of oxygen and not because of anything that his father or I did. I was determined to help my son and to see him walk.
I needed counseling because I was mentally, physically and emotionally drained. I would never forget visiting the Social Welfare Department where I saw several mothers who also had children diagnosed with Cerebral Palsy. Two of them were crying, asking for help and the clerk treated them with scorn. I scolded her and told her to be more compassionate as she had no idea what these women were facing.
They were all attended to immediately and I vowed to never stop advocating and ensuring that our children and their families are treated with the dignity and respect that they deserve. The Cerebral Palsy Association of Trinidad and Tobago was then registered and attracted over six hundred parents who needed a forum to comfort, counsel and support each other.
My son was never afforded proper therapy because there was an age limit to access therapy at the centers that gave free therapy sessions. After seven years of therapy he was improving, but the reality of walking was a dream without the finances to pay for continuing those sessions. I became a “self-certified physiotherapist” trying everything that I learned from those free therapy sessions, but five persons were needed to attend to one child. His condition never changed and the cost of therapy became exorbitant. Most could not afford it.
Atiba succumbed to complications due to Cerebral Palsy, twenty years after being given three months to live. He was born with a purpose as the trials I endured during his life helped me empower hundreds of other parents. My pain made me push!!! I prayed fervently, advocated consistently and God heard our cries. We never gave up and I gradually saw the purpose in my pain.
When the National Enrichment Center was built, hundreds of mothers received monetary assistance and the services of the Social Welfare Department was very professional and swift. Our children and their families were prioritised. Hundreds of parents started socializing with their children. God did not heal my son but his purpose was to ensure every child with a disability is granted access to free therapy at modern facilities.
Most parents are forced to be unemployed because these children require a lifetime of care. We launched a Work Center where parents can work while their children are being attended to. My pain was not in vain. I understood and accepted my destiny. The work is still in progress.
We have been here for the past seven years, lobbying, advocating on behalf of persons diagnosed with Cerebral Palsy. It has been a real struggle because there is still a great lack of awareness and resources to assist these individuals. There is so much that can be done by enacting proper legislation and providing the facilities to ensure these children are given an opportunity to live, to survive and to grow.
When these children are accepted into the main-stream school system and a parent has the resources to properly care for their child, (which includes day-care facilities, work centers and therapy centers) then we can say that we are striving to reach first world status.
Persons with disabilities are people too and I pray that every creed and race find an equal place in this country and God will surely bless our nation.
The production of the Lioness series, highlighting the experiences of 12 mothers, is supported by Cause an Effect, Angostura Limited, First Citizens Bank and A Very Special Disabilities Forum.