My son Nathan is the last of my four children. He was born on May 4, 2004 in Kingston, Jamaica. If I were to think of one word or phrase to describe him, it would be ‘impish’. That is because he has a zest for life and living. He embodies a beautiful spirit and energy that is edgy, playful, and mischievous. An endearing little scamp at heart, he takes full advantage of the ‘last-child’ privileges, whether it is bossing around his older siblings, monopolizing the television, getting that extra piece of cake or just annoying his brother and sisters. His charm and special negotiation skills get him his own way almost every time. I would often respond to a call from one of his siblings complaining that Nathan did so and so, and would go to them to find Nathan straight-face, watching TV or engaged in some other activity, not paying them mind. The telltale grin tugging at the corners of his month would be the dead give-way that he was guilty as charged.
Nathan has the most beautiful eyes, his paternal grandmother often refers to them as ‘ackee-seed’ eyes, describing the contrast of the brown of his iris against the white of his cornea, surrounded by enviable long lush black eyelashes . . . His eyes flash with life and energy and when he adds his signature smile, he gets away with almost anything, whether at home or at school. While Nathan is typical in many ways to his peers and age cohort, he is different in one unique way. Unlike other children, and through no fault of his, he cannot walk; he cannot sit independently, dress himself or brush his teeth himself. He cannot run, kick a ball, or feed himself a cookie or communicate using words. This is because Nathan has cerebral palsy.
While not a single condition in and of itself, cerebral palsy is a group of problems that affect a person’s body movement and posture. Cerebral palsy is the most common childhood disability and is responsible for a high percentage of lasting disability in children. Recent research poses that 1 in 278 children globally has this condition
The disorder is related to brain injury in utero, at birth or in the early stages of life (between zero and three years of age). While the exact cause of cerebral palsy can’t always be pinpointed, some possible causes include premature birth, problems after birth, lack of proper in utero nutrition, a serious head injury or infection that could harm the brain or a genetic condition that affect’s brain growth and formation. In Nathan’s case, his infraction was caused after birth. He was diagnosed with congenital diaphragmatic hernia which required major surgery to correct the breach. He underwent surgery at just 2 days old. Ten days post-surgery he suddenly developed severe jaundice with hyperbilirubinemia (abnormally high amounts of bile pigment (bilirubin) in the blood) of 408. Though this was corrected within twenty-four hours by phototherapy, it is believed that the damage was done to his young brain cells in the motor cortex area of his brain, which controls movement.
Nathan spent 24 days in the hospital in Kingston, Jamaica, before he was discharged and sent home. I still remember the feelings of jubilation when he came home. We were so happy to receive our baby who we had been waiting for from the moment I found out and made peace with the fact that I was pregnant. He was discharged from the hospital and we were never given any information or prepared for what was to come. When we left the hospital with him that day, we thought the worst was over. None of the medical or healthcare personnel prepared or even alerted us that something might go wrong with his development because of what he had gone through.
Nathan came home and we noticed very soon that he was not developing typically like his siblings. For instance, at four months, he still behaved and responded like a newborn. He could not hold up his head, could not sit even when supported, had problems eating, could not track or focus on any objects and seemed unaware of the world around him. I brought this to his doctor’s attention during his post-surgery clinic visits, but the doctors didn’t respond satisfactorily. So, I stopped going to the Hospital’s pediatrician and took him to a private pediatrician. It was there that my concerns were taken seriously, and we started a process of tracking his development or lack thereof more closely.
At nine months he was still significantly delayed in almost all his milestones. He was referred to a pediatric neurologist, who diagnosed him with Cerebral palsy. Though we suspected that something was wrong with his development since he was months old, we never suspected anything this serious, let alone this debilitating. The diagnosis of Cerebral palsy came as a shock. I didn’t even know what this all meant, because outside of the name of the disability and what my son will never ever be able to do, no other information was given to us by the neurologist.
I went through a period of utter despair. I thought the diagnosis was a death sentence, and that my son would have died as an infant. I became very afraid of leaving him alone, let alone going to sleep. Fear was my constant companion for a long time.
From the time of the diagnosis until Nathan was 2 ½ years old, were the most difficult, as we struggled to find information to figure out what services he needed, where to find these services and what we… I could do as a mother to help him.
After two years, I was no closer to understanding this condition and the effect it would have on my child. I felt helpless, as I did not know how to help my child. I was shrouded with a deep sense of grief and loss, as all I was told by the local professionals who saw him was what he would ‘never’ be able to do. No one was able to tell me what he could do… no one gave me even a ray of hope.
This led me to go on a search for answers. The search led me to a pediatric rehabilitation hospital in Florida, where I received my first ray of hope. It was there that I learned to see my child, not for what he can and cannot do, but for who he is.
I learned what to expect from his condition, how to support his development and how to advocate for him.
I learned that my little Nathan represents a growing population of children in Jamaica and around the world with this disability and that 1 in 4 children has a serious visible or invisible disability.
I learned that every day parents receive the diagnosis of disability and that like me, they too struggle to find answers.
I learned that the information I gather can be useful to parents and teachers to help them understand and support children with disabilities.
I remember when we were finally taking Nathan home from the hospital an experienced matron told me the best gift I could have given my baby was the gift of siblings. She told me that he may be sick for a long time (though she didn’t explain what that meant, and I didn’t have the presence of mind then to ask). So, from the first day home, his siblings, though they were 8, 6 and 4 at the time, were taught how to hold him and how to help. This was the best advice I could have gotten, because it helped to create a remarkably close knitted family. We have become such a well-oiled machinery when it comes to supporting and caring for him. This has been instrumental in helping to normalize Nathan’s childhood and upbringing, even although very few rehabilitation services were available to him in Jamaica.
After the trip to Florida in 2007, I became fully aware of the huge gaps in information and services that existed in Jamaica. I now understood his disability and the possible ways it may impact his growth and development. I learned that he was not broken and learned what to expect from his condition, how to support his development, how advocate for him.
I became very frustrated upon my return when I realized that the services, laws, and mindset needed to help Nathan and other children like him was not present. So, in 2007, I formed the Nathan Ebanks Foundation to bring support to these children and their families in Jamaica. Through advocacy, training for parents and teachers and public education, the Nathan Ebanks Foundation works for participation, inclusion, and empowerment for children with disabilities and special needs.
Since 2007, the Nathan Ebanks Foundation has:
- Provided direct intervention services – in speech, occupational and physical therapy and screening services to 2000+ children
- Held over 8 annual disability and special needs conferences impacting 3,000+ teachers, policymakers, parents
- Created and delivered key Train-the-Trainer Inclusive Education Training Institute to the Ministry of Education. Impacted more than 2000 teachers.
- Hosted 4 Special Needs Resource Fairs connecting more than 8,000 persons to services
- Published 2 Children with Special Needs Guide to Resources Handbooks distributed free to 3000 in Print, Digital and Audio formats
- Contributed to policy changes by serving on 7+ high-level national boards and committees including the National Disability Advisory Board and the education and disability sector groups
- Hosted the inaugural Special Child, Special Needs Virtual Parenting Summit: 1200 + attended/viewed the recording from 23 Countries
Professional Work www.christinestapleebanks.com
Advocacy www.nefjamaica.org
Social Media: Facebook, YouTube, Instagram @raisingspecialneeds