I think we hear differing perspectives on how to meet the needs of children with certain types of disabilities. What is often not seen is the persevering love, commitment, patience and support from their parents who have fought battle after battle in support of their child.
The challenging journey with a neurodevelopmental disability
It takes a very special parent to advocate and care for the needs of a child who has to struggle to fit into the world. This article by parent Charmaine Edmonson-Nelson is illuminating as she presents her perspective on her son’s journey and development.
MY last child, the baby of the family, turns 17 this year. In many ways he is the baby of family as he still gets hugs and kisses, and his actions still elicit oohs and aahs. You see, my son has a neurodevelopmental disorder, so although 16, he is at the intellectual level of a five-year-old. Every new word he learns, every concept grasped, and any increased awareness of the world around him is a moment of joy for the family.
The biggest joy is that there is always some progress, which gives us hope and drives us to continue trying new approaches. Over his 16 years he has attended six schools, each contributing to some aspect of his development. He has benefitted from speech therapy, occupational therapy, listening therapy, ABA, brain-balance therapy and nutrient supplementation. At various stages in his development, he has been assessed by different professionals – developmental paediatrician, speech pathologist, neurologists, audiologist, clinical and educational psychologists. He is currently in a therapeutic programme, based on the science of neuroplasticity, and we are seeing positive results.
But what of the parent who does not have the resources and the networks to access these kinds of interventions?
Article 23 of the Convention on the Rights of the Child commits States to ensure that assistance extended to a disabled child is designed to provide effective access to education and training to allow the child to achieve the greatest possible social integration and development. Article 24 of the UN Convention on the Rights of Persons with Disabilities (PWDs) contains similar provisions.
The discourse on access for PWDs, however, has often focused on physical access. For a child with an intellectual disability, such as my son, access means specialised schools, specialised curricula, specially trained teachers and highly specialised equipment and technologies. This calls for significant investments, which in the absence of State resources, falls on the parents to identify.
It has been acknowledged by policymakers that lack of access to quality education, training and income-earning opportunities, has fuelled the numbers of PWDs falling below the poverty line. Despite this, interventions targeted at PWDs continue to take a welfare-based approach. It may be timely for the model to be inverted, with an approach based on empowerment underpinning future programme design.
My son currently attends the Randolph Lopez School of Hope for children with intellectual disabilities. I would love to see some of the interventions I have been exposed to being mainstreamed in this school, so that every child could benefit regardless of their social status.
I dream of bringing the brain-based therapy programme he is currently participating in to Jamaica. If this were to happen, families would not have to travel to Florida, but could remain at home, access the programme at a more affordable cost, and potentially experience the breakthroughs in communication, cognition and behaviour that I have witnessed. Major funding is required for such ideas to become reality.
Given effective access, appropriate to their type of disability, PWDs will have a greater chance at living at their fullest potential, resulting in fewer persons requiring State social assistance. Although the approach will not cost the Government less in the medium term, the positive impact on families like mine would be significant.
Not only are brain-based interventions helpful for kids with learning problems but also kids like this who are struggling with significant neurodevelopmental disorders. These children need these interventions to help them continue their progress to grow to their capacity. Both our children and parents need the kind of hope of brain-based interventions.
Below is more information about this courageous Mom who has advocated so well for her child and others. Thank you, Charmaine, for persevering care for those with intellectual disabilities.
Gerry Vassar, President/CEO, Lakeside Educational Network
Charmaine Edmondson-Nelson is the parent of a child with intellectual disability. She is founder and director of the Emerging Minds Foundation Jamaica, which is a charitable organisation seeking to support persons with intellectual disabilities. Visit the Emerging Minds Foundation Jamaica on Facebook or contact them at emergingmindsja@gmail.com.
