Changing lives with the all-important F-words
The smiling achievers with SLACD President Dr. Samanmali Sumanasena, Founder President of the SLACD Prof. Hemamali Perera and WHO Representative Dr. Jacob Kumaresan
Triumphant smiles, a single whoop of joy and even a silent, unshed tear in an emotion-filled ceremony, as the audience rises in unison in a standing ovation.
As eight youth, both male and female, proudly walk up or are wheeled into the spotlight to receive ‘Reaching for the Stars’ Awards, happiness over their achievements is tangible.
These awards are the highpoint of the inauguration of the 3rd Biennial Conference spread over four days of the Sri Lanka Association for Child Development (SLACD) on the theme ‘Opportunities for All Children to Participate’ on January 20 at the Orchid Room of the BMICH in Colombo.
“Inclusivity,” has been the mission of the SLACD, a young association born in 2012, but according to its President Dr. Samanmali P. Sumanasena, has now become a “mighty” force.
The SLACD is the first professional association in Sri Lanka dedicated to Child Development, which aims to promote, facilitate and support advancement of knowledge and skills; research and interest in child development and developmental disorders in children. It is striving to make a change not only in the lives of children, but also their families and the community.
‘F-words’ were the start of the address by Keynote Speaker Dr. Peter Rosenbaum which was video-cast live from Canada just before the ‘Reaching for the Stars’ Awards, making some members of the audience sit up straight with looks of disbelief.
Of course, these F-words that Dr. Rosenbaum was harping on were not the commonly used polite word for an obscenity. They were the F-words in childhood disability which he stressed is a strengths-based approach to children’s health and development.
Giving a warning that “there will be challenges”, this Professor of Paediatrics at McMaster University and Co-Founder of CanChild Centre stressed that what he proposes are things that they strongly believe in, can be supported with research evidence, may cause people some discomfort because these ideas challenge what has been learnt, done and been taught to others.
“Many of us were taught to believe that biomedical interventions and doctors’ prescriptions can ‘fix’ medical problems. ‘Normal’ was the correct approach when treating children with developmental challenges and service providers were the ‘experts’,” he said, pointing out that our classic assumptions were to diagnose and treat. This was not wrong, just not fully considered.
Referring to the traditional thinking, Dr. Rosenbaum said it flowed in one direction, from left to right — disease, impairment, disability and handicap. Negative language was used and there was implication that handicap was inevitable, a consequence of having an impairment.
Peter Rosenbaum
However, by 2001, these ideas were reframed and the ‘International Classification of Functioning, Health and Disability’ opened a world of opportunities, for it is health for everyone, the words are neutral, everything is connected to everything else. “This is a dynamic system of interconnected parts – where we start, the prescription is less important than we used to think, with a major focus on what people can do,” he said.
Picking up the ‘F-words’ in the Childhood Disability Framework, he cited health conditions such as Cerebral Palsy and Autism Spectrum Disorder and linked them to – Fitness, Function, Family, Friendships, Fun and finally the Future.
According to Dr. Rosenbaum:
* Everyone needs to stay fit and healthy, but this is a neglected aspect of childhood disability. So there is a need for recreational opportunities and health-promoting orientation to children’s lives.
* Function would simply mean what people can do and how things are done is not important. Function replaces activity. The children first learn to do things in their own way and then maybe they develop good skills in those activities. This then is achievement and away from ‘normal’ as the main goal.
* Family is the central environment in children’s lives and as such needs to be treated as equal partners. Traditionally, services have been very paternalistic and we have not engaged well with families, the world’s expert on their child. This misses opportunities to be helpful. Engagement with parents as partners works very well.
* Friends to have fun with, to learn with and to grow old with. Social development is an essential aspect of ‘personhood’. It is the quality of relationships rather than the number that is important. There is a need to recognize trade-offs between more therapy and lost opportunities for children to be social.
* Fun is what childhood is all about. Life is about doing stuff. Find out what the child wants to do, adapt those activities as needed, don’t worry about doing things normally and build the child’s confidence, competence, sense of achievement and capacity.
“The Future is now. Tomorrow is what I make of today. I don’t want opportunities to pass me by. Help me achieve what I can today,” was Dr. Rosenbaum’s appeal, as he urged that we need to de-emphasize fixing, normality, disability etc.
Promote development, child and family strengths, achievement and being family-centred. This is the challenge, he underscored, with a word of advice to service providers.
Start every visit to you by these families with the question: What do you want to brag about? Then think about how your proposed plans and therapies fit within the F-words.
The Chief Guest at the inauguration of SLACD’s 3rd Biennial Conference was the World Health Organization’s Country Representative in Sri Lanka, Dr. Jacob Kumaresan.
The conference, sponsored by the WHO, the Health Ministry and the National Science Foundation saw many important topics being discussed at length including: The future employment opportunities for children with specific developmental needs; Early intervention; From evidence to practice; Education for all; Are we ready for inclusion; Cerebral Palsy; Establishing a Cerebral Palsy Registry; Autism Awareness; and Establishing services in Sri Lanka.
| The stars The ‘Reaching the Stars’ Awards 2017 aptly celebrated achievements and as the Keynote Speaker said this what the winners had to ‘brag’ about. |