Public misconceptions about children with special needs
poses such an important conversation, that in my first book – Raising Nathan: Every Life has a Story, I dedicated an entire chapter to the topic. I have found for myself and countless other parents I have spoken with over the years, that these misconceptions play out negatively for the children and messes with the family’s acceptance of the child as a person. Two of the most significant ones are:
(1). A child’s disability happens because of something the parent has done wrong in the past that God is punishing them for.
(2). Children with disabilities aren’t worth the investment. All they need is to be fed, clothed, and kept at home. They are not viable human beings.
I remember having a specialist in Jamaica tell us “Not to bother with this one as he will never, ever…”, there was also the owner of a company which sells rehabilitation equipment who told me that “I am to stop giving parents false hope into thinking their child with disability can become more”.
I cannot stress enough how wrong these are. Much of my speaking work has been about shifting mindsets around such thinking and helping parents to see beyond their disability and learn to see the gift that is their child.
In my book, How to Cope: Parenting a Child with Special Needs which was released earlier in 2020, I invited my husband and older children to share their experience of having a son and brother with disabilities. In carrying out their interviews, it was the first time that we were ever having this discussion, though it had felt like Nathan’s disability was all we talked about over the years. I was moved by the depth of the feelings of each member of my family following the diagnosis and beyond. At the time of Nathan’s birth, his siblings were very young – 8, 6 and 4. Yet the impact was profound, and what was worst, I was so wrapped up in my own grief that I didn’t realize how much they were hurting.
I am grateful that before Nathan was born, we were already a close-knitted family. Somehow, we were able to transcend the challenges and grow even more close, so that Nathan has an impenetrable wall of support surrounding him. Today, his siblings are 24, 22 and 20, and I have to jokingly remind them that Nathan has only one mom, because they all act like they are his parents (it brings a smile to my face every time I think about this).
Nathan is a much like a typical child in many ways. He is brilliant, vivacious, and social young man. Though he has gone through more health issues than most and lives with a very debilitating disability (cerebral palsy), he is joyful and wears a “million Dollar Smile!”. He is extremely passionate about life, love to go on trips (we were once lost for 14 hours in Florida and while the rest of us panicked, it was merely an adventure for him). He likes school of the social activities, hate schoolwork and his favorite pastime is watch TV. We have always tried to give him as many opportunities as his siblings, so he has his own special brand of swimming (one leg beating the water at a time), athletics -he participated in the wheelchair at his old school in Jamaica (was the only person who went backwards in his chair) and tries his had at floor ball (football for children with disabilities). He was in the dance club at his old school in Jamaica and dabbled 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