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By Fathima Riznaz Hafi
Through early and effective intervention, a child with autism or other disabilities can successfully integrate into society and grow up to be a productive, independent adult. A parent struggling to help a child achieve this would do much better with the support of society rather than its discrimination. When the society is better educated on what autism is and accepts the child without prejudice, the positive effects on this child are remarkable.
Reach Beyond Autism and Child Development Centre is a not-for-profit organisation that works towards helping children and young adults with disabilities integrate well into society by nurturing them through a holistic approach while at the same time offering support services of various forms to the parents.
Setting it apart from other intervention centres, Reach Beyond is run by four mothers of children with special needs – they therefore know first-hand the hurdles, stigma and rejection that the child and parents face. Their experience helps them create stronger bonds with parents and children who come to their Centre.
Also, having noted from the start how people look down on such children and their parents, these mothers go beyond training children at the Centre – they are working towards erasing stigma and educating people on the topic, aiming to create an inclusive environment for children with autism and other disabilities.
Nelun Guruge, Samantha Willatgamuwa, Tharsiny Markandu and Malathi Kahandaliyanage, have known the struggle for many years now – since their children were small and first diagnosed. They had each faced their own struggle, trying to find ways to help their children, who are now in their teens (one is in his early 20s). When their kids were growing up, diagnosis was available in Sri Lanka but therapy and intervention programs which are vital to help them learn, develop and be independent, were lacking. Finding a school that was inclusive and had the necessary programs to accommodate their children was not easy back then (even now there is only a handful).
Fortunately the four mothers had opportunities to travel and gain knowledge on intervention methods abroad. Tharsiny lived in Canada, so she got her assessment and therapy done there; Malathi went to India while Nelun and Samantha went to the US. They brought back ideas and material from other countries and used them here for their children. “We found immense guidance, intervention methods and support systems abroad. The systems we came across aim for life-long results, whereby the children could grow up to lead independent, productive lives as adults, and have gainful employment,” said Samantha.
The mothers left their jobs as engineer/director/manager, to re-direct and re-train themselves in a completely different line – special needs education – so that they would be better equipped to help their children.
“We saw what a big difference timely and effective modification could make for a child with disabilities. We saw how it empowered our children. Then we thought about the kids in this country – not everybody can go abroad to get the service that the children need. We wanted to make sure that children in our country also get the same quality treatment so we started working together two years ago; and then we launched the Centre last year,” said Tharsini.
“We are an intervention centre – not a school – we prepare them for school. We build relationships with the kids and teach them behavioural skills and help them with the transition to school. Kids who go to regular schools come to us in the afternoons for remedial lessons, in addition to which we offer speech therapy, play therapy, occupational therapy – whatever the child may need,” she added.
Apart from autism the Centre also caters to children with other disabilities such as speech disorders, learning difficulties and ADHD. Reach Beyond strives to provide multidisciplinary support services for the children and their families all under one roof. The Centre functions on three main concepts: Holistic development, support services, and advocacy and awareness.
Focusing on one aspect of the child’s problem is not productive; we should work on all aspects for the holistic development of the individual. “We need to look at the child holistically – in terms of what he needs – academic skills, self-awareness, motor development, socialisation, and so much more – those are often left out but are important because otherwise they can’t get integrated into society,” says Samantha.
To achieve this, their programs include early intervention, life skills, behaviour therapy, social skills, speech therapy, occupational therapy, play therapy, yoga, music and sports. The children receive individualised therapy of 1:1 or sometimes 1:2 teacher-student ratio. The goal of the holistic programs is to help the children develop self-awareness, independence, communication and cognitive skills – all of which are necessary to successfully integrate into mainstream school and into society.
“For successful integration, people need to make accommodation and they need to adopt certain things, even in employment. For example, they need to have ‘visual schedules’ so that it’s easy for our children to follow. We do workshops and give practical strategies that people can use for their children, such as the visual schedules which teach them how to use the bathroom by looking at the step-by-step visual guides that are pasted on the bathroom wall. It teaches them independence,” Malathi explained.
“Here at the Centre, we teach them the ‘learning to learn’ skills because our kids need that – they need to learn ‘how’ to learn things. So we need to structure it and break it down; any activity has to be broken down into smaller steps.”
Tharsini added, “We have to teach our children ‘how’ to play games; they don’t understand turn-taking, or even when playing ‘tag’, etc., most children just learn naturally by watching but our kids have to be taught how to play; we help them by breaking it down into small steps and letting them practice until they get it.” The Centre gives the kids those basic skills so later on when they go out into the society, or when they go to a school, they are able to learn.
“Our children have neurodevelopment disorders and these cannot be fixed by antibiotics or Panadol – it’s not something that will go away. Quite often parents come and ask us ‘When will this autism go away?’ There’s no such thing – it’s a lifelong condition but we can intervene and give them the right tools to cope with it so that the gap is very small. This starts at home – the parents have to accept the child’s disability and not be ashamed – they can set an example to society,” she says.
“Not everyone is strong in academics; that doesn’t mean that they cannot be successful. People can be successful in different ways and that’s what we want our kids to know, that’s what we want our parents to know. Even some of our regular kids struggle to find their own space, and so it is with our kids. They are the same as everyone else, it’s just that they may learn differently; they may have strengths and we have to develop those strengths and see,” Samantha noted.
Everyone is fixated on a rigid system where their children must go through a specific path and ‘O’ Levels is a must for a successful future. If the child cannot achieve this he feels he is a failure – naturally – because that’s how society will look at him. Malathi’s son did not do his ‘O’ Levels but is a chef now – he is living his dream. Nelun’s son is a musician. Their mothers are proud of them!
While we look carefully at what the child needs we also have to look at what the family needs; the family also has to be in a good place, to help the child. “Parents should know that it’s okay to take little breaks and spend some ‘me’ time. As mothers, and as time goes on, it’s a great stress to us; we worry about the future of our child – how do they find gainful employment, how will they live their lives when we are not there, etc.,” Samantha says.
Parents need to know that they are not alone; there are other parents with similar fears and experiences; talking to each other helps as they can learn from the experience of other parents and they can exchange ideas and advice. “That’s why we decided to start a support group called ‘Parents as Partners’ – so parents can help each other. Parents as Partners aims to educate and empower parents to become active partners in the treatment, education and inclusion of their children. Our ambition is to form an island-wide trilingual parent network of 10,000 members in the next three years to support parents and advocate for our children,” said Tharsiny.
The Centre’s third concept, advocacy and awareness, is directed towards the society. “We need to have enough voice to ask for changes in society. In other countries people with disabilities receive long-term care and benefits but those things come with policy; we too need policies but are still in the initial stage with this,” she says, adding that as a start we need to increase awareness – the public needs to be educated on the rights of our children and accept them without discrimination.”
“People with special needs deserve the same fundamental rights as everybody else – the right to education, employment and to live with dignity; and that is not happening. They have the right to go to a school and they have the right to get the best services possible but that doesn’t always happen; yes, there are kind schools that have taken our kids but that doesn’t happen for everybody; and it can’t just be a place in a school – they need to be accommodated according to their needs,” says Samantha.
Tharsiny added, “Most regular schools don’t want to take these kids. So, parents must advocate. The family has to stand by their children no matter what. That’s what all four of us did; we went to our kids’ schools and we had to advocate for our child, explaining their issues and asking for help to accommodate them a certain way and support them.”
When Nelun’s son started school, his school did not know anything about autism; her child was the first student with autism to go there. “After I spoke to the principal and the board, they took him and gradually he got into the mainstream class and last year he left school (now he’s 19). Since then, every year, that school takes a child with special needs; now they have so many children like that there!” she said.
Reach Beyond recently organised a walk with the aim of increasing awareness on autism. The Autism Awareness Walk, sponsored by Cargills, under the theme ‘Accept-Include-Empower’, was held around Viharamahadevi Park from 7 a.m. to 12 p.m. and was followed by several tri-lingual events including a talent show, funfair, kids’ performance and forum for parents.
“We organised this walk to say ‘accept our kids’ and ‘no child should be left behind’. Our children deserve the full fundamental rights all the others have; so make some space for our kids. The walk was also to help parents feel they are not alone – when they find other parents at the walk that they could talk to, that gives them strength,” says Samantha.
“This walk was not only for people affected by autism; it was for the general public. We wanted people to come out and show that they care. We want people to know that nobody gets left behind – whether it’s children with autism or any other disabilities; that as a society we care and provide opportunities for inclusion and acceptance; we must give the opportunity for them to lead an independent and happy life. To the parents out there, you are not alone – there are parents in a similar situation and there are services and help available – we just need to work together, and stand by our child,” Tharsiny concluded.
Pix by Gitika Talukdar
