PARENTS AS PARTNERS’:
Empowering and Enabling Parents of Children with Disabilities



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We have read about children with autism exhibiting sudden spurts of brilliance, or having a marvellous ability in some brain activity like multiplication of numbers. Autism is a complex neurobiological disorder. The specific nature of the condition in affected children differs but there is almost always a deficiency mainly in social behaviour and communication


Worldwide statistics show that 1 in 69 children are autistic. In Sri Lanka the figure is 1 in 93. If autism is diagnosed early, the functional activity of the child can be improved. That holds out hope. Parents are the key persons to initially identify the condition. They also play the most important role in intervention programmes and in inclusion. Most importantly, molly codling the differently-abled child through sympathy and enhanced love has to be stopped. It is detrimental to the child and will stall his/her striving to be more like other children.


Sri Lanka shows an increasing awareness of the difficulties faced by individuals with disabilities and their families. Commendable efforts have been taken to screen and diagnose disabilities and developmental disorders, though diagnostic services are not as thorough as in the western world. What is completely lacking are effective interventions, treatments and therapies that are holistic and coordinated.


Reach Beyond – Autism and Child Development Centre is a newly formed "ONE STOP SHOP" Centre that provides holistic and evidence-based treatment, therapies and intervention for individuals with disabilities. Its mission is to make pathways and provide opportunities for differently abled individuals to reach their full potential, to find joy and to be successfully integrated into society. The center has been formed by parents of children with disabilities, and its other major goals include empowering parents, increasing awareness at grass root level across the country, and advocacy. I spoke with four of the founding members. One said that her autistic child is now a good chef thanks to timely and effective intervention and her family’s continuous efforts. His hidden talent was discovered.


 


Workshop for parents


On 26th November a full-day workshop was held by them at the Sri Lanka Medical Association Auditorium, Wijerama Mawatha, , titled ‘Parents as Partners’/, ‘MawpiyaSaviya’: A Workshop to Empower Parents, Teachers and Caregivers of Individuals with Disability. It had guest speakers of distinction and was well attended by parents of children with autism and other developmental concerns, teachers and caregivers.


The purpose of this first in a series of workshops was to educate, encourage and empower parents to become active partners in the treatment, care, education and inclusion of their differently-abled children. Also to emphasize the role parents and caregivers ought to play in the lives of children with disabilities. Parents know their children best and are their greatest support and helpers.


The goals were to enable parents and teachers to embrace and celebrate differences; share their difficulties and successes; and to form a support network and be active partners in the treatment, care, education and inclusion of their differently-abled children of all ages. Over 140 parents, caregivers and teachers attended this well-organized, informative and bi-lingual workshop, which offered Tamil translation on a need basis.


 


Content of workshop


The topics discussed included the role of parents; strategies to motivate parents, calming and coping strategies for affected individuals; tools to improve independence and organizational skills; advocacy at schools, work and society. Discussions were focused on educating and empowering parents and care circles to assist their children in different environments including schools and social settings and to encourage active participation in all aspects of life as individuals with equal rights. It was highlighted that disability should not be viewed as a lack of ability; instead, it should be regarded as different abilities that need careful nurturing as each person is unique..


Guest Speaker, Dr Hemamali Perera, a former Professor of Psychological Medicine at the University of Colombo and pioneer in child and adolescent psychiatry in Sri Lanka, emphasized the need for parents to practice and reinforce the skills taught in therapies at home and elsewhere. She also spoke of the use of behavioural and holistic therapies for hyperactive and inattentive children vis a vis the traditional use of medication.


Dr. Swarna Wijetunga, senior consultant in child and adolescent psychology at Lady Ridgeway Hospital for Children, discussed co-morbidities that often exist parallel to observed disabilities and developmental disorders. Individuals with disabilities face multiple challenges that prevent them from developing and reaching their full potential. The various changes in those with disabilities need to be fully understood and accommodated accordingly.


Dr. Nimisha Muttiah stressed on the importance of developing communication skills for children with autism, be it verbal or non-verbal. She showed how the effective use of augmentative and alternative communication methods and tools have successfully helped develop communication in Sri Lankan children with autism. She also pointed out the need for literacy.She emphasized the need to teach literacy skills, especially for non-verbal children.


Dr. Lalith Mendis spoke of the brain being wired for multiple intelligences and the importance of developing different areas of abilities, not only academic skills. Parents need to change their mindsets.


A highlight of the workshop was the sharing of experiences and insights by parents of differently abled children. Two parents shared their story of successfully integrating their daughter with Down Syndrome into school and she completing her O-level examinations with the necessary accommodation. They did not let the disability hold their child or them back in life. Instead, they were determined to bring about the changes their daughter needed to be included and enjoy her life to the fullest. The founder of Cerebral Palsy Lanka Foundation and a key figure at the National Centre for Cerebral Palsy and Developmental Disorders had his son with cerebral palsy sit for the O-Level examinations with the necessary modifications. A mother shared her success of finally hearing her son call her "mom" at the age of 8. Her faith, sheer hard work and commitment along with appropriate interventions and tools have finally helped her son to communicate and utter his first words and sentences. There were other such success stories.


 


Parents must take on the


following roles:


Parents should be the strongest pillar of support, showing unconditional love; give treatment, therapy and be intervention coordinators; advocate for their children at home, school, work place and society; build a bridge to span the gap between what is available and what ought to be available for individuals with disabilities; be promoters of awareness and inclusion


So Reach Beyond calls parents to join hands to support each other and make the necessary changes at home, school, work places and on a national level such that individuals with disabilities are given their rightful opportunities and support to reach their full potential and lead lives of dignity.


There is increasing awareness on the multitude of challenges faced by individuals with disabilities. However, the process of acceptance and inclusion of these individuals into the fabric of Sri Lankan society is yet to make major breakthroughs. Hence, Reach Beyond strongly believes it is time to be a voice for children in today’s society, to inculcate the importance of accepting individuals with any disability and to bring about changes needed.


A tri-lingual Parent Support Group was thus launched as the first step towards forming a support network for parents and to advocate and bring about changes for children with disabilities. Parent Support Group meetings will be held by Reach Beyond on a monthly basis at different locations to enable parents across the country to form a network of support. Reach Beyond aims to connect with 10,000 parents in the next three years.


 
 
 
 
 
 
 
 
 
 
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