Mélange Accessibility for All Magazine April 2021 | Page 69

To Table of Contents in art where he entered and was placed 10th in a National Art Competition for children with special needs in Jamaica ( 2017 ). However , due to the limited availability of rehabilitation therapies ( Occupational , Speech and Physical ) in Jamaica , and the low availability of equipment such as adaptive wheelchairs , augmented communication systems , at 16 years old , Nathan is not able to walk , feed himself or brush his teeth . He carries low weight and is adaptive skills are well below is capability .
Since mid-2020 , we are living in the United States . Nathan has just started school and we are excited to see the possibilities when he is given the supports , he needs .
I have often shared that it was never Nathan ’ s disability which challenged me the most . It was the not knowing . Not having the information earlier on that would have helped me to be more intentional in the things I did with him . It was the fact that the view of my son was obscured by the “ specialness of his needs ”. It overwhelmed me for a while --- 2 ½ years to be exact . Time that I should have spent bonding with my son , was spent cowering in crippling fear that he would die . I didn ’ t know at that time that cerebral was not a “ death sentence .” I had no one to turn to .
Each day I would look at my child and because I didn ’ t understand what the disability meant or what I was seeing him do , it made me feel for a while that he was “ broken .” This eclipsed the joy of parenting a beautiful child , and I feel like I missed out on those early years . I guess that is partly why I am so passionate to talk parents , especially when they have just gotten the diagnosis . I wished someone had talked to me then . Since the day I learned to see him , to really see Nathan , he has brought me , our family and everyone who meet him so much joy . When he laughs , it is so infectious , that everyone laughs with him , even if the “ joke ” was all that funny ( smile ). Today as I look back , the way I see it , 16 years ago when my son ’ s Nathan was first diagnosed with a disability – cerebral palsy ( CP ), I thought my life was over . I thought that I would spend the rest of my days locked away caring for a “ disabled ” child . I had never felt such pain , despondence , and hopelessness as I did then . It felt like wherever I looked all I could see was despair . I felt powerless . Back then , there was no one I could turn to help me make sense of this diagnosis . I didn ’ t know how to pick up the pieces . Yet , somehow , my faith in God , my family and close friends and my village community of supporters saw me through .
Today , looking back I can see clearly how what came to my
family as “ tragedy ” became a beacon of hope for so many children , families , and people with disabilities . My son ’ s life has made a difference for thousands of children with disabilities and their families in Jamaica . He has inspired a movement to increase the participation , inclusion , and empowerment of people with disabilities in Jamaica and other countries that I have been to speak . He has taught me that every life matters ! I am thankful for the gift of my son Nathan .
I have often shared that it was never Nathan ’ s disability which challenged me the most . It was the not knowing .