Fixing disability

Tuesday, 31 December 2013 00:01 -     - {{hitsCtrl.values.hits}}

  • Margaret Nathan believes that care, right therapy, love and patience can fix a child’s disability
Recently Singapore Divinity Intervention Centre Proprietor Margaret R. Nathan came to Sri Lanka to speak at a workshop about a subject even the educated were uneducated about – disabilities and how to help and deal with those disabled. She was invited by Enable the Disabled (ETD) organisation, which has for the past few years focused on making Sri Lanka a disable friendly country. Nathan has been passionate about helping disabled children for the past 12 years when she believed she had a calling to be a part of something more than working in the corporate world. She spent a year at a special state school in Singapore and noticed that teachers were ignorant and did not know how to deal with disabled children. “It was more like babysitting,” stated Nathan. After receiving her Masters in Special Education in Australia, she came back to Singapore and joined various special schools, but not one school lived up to what she had in mind – a special school that improved the life of a disabled child. She believed that a disabled child can be fixed to a certain extent and that’s when she opened the ‘Divinity Intervention Centre’ in Singapore. Currently she has 40 disabled children under her program. Defining a disabled child How does the public define a disabled child? They would say, ‘It is a child who is retarded, abnormal and not fit for the abled community.’ Some would even go to the extent of calling a disable child a ‘burden’. While that is untrue and offensive, Nathan stated: “A disabled child is someone who is not able to do things accordingly to the child’s normal timeline.” In that case, it makes you think of each and every one of us because some of us would have been late to walk or even talk as toddlers. Speaking on disability, she said: “Disability is something for the moment. It’s not a lifelong moment unless it’s a physical disability.” Nathan specialises in finding out in which area the child is disabled. She explained that disability is a natural occurrence for many people. For an example, if you went to China for a holiday and tried to find your way in the country, the chances are you will find it very hard to do so because you do not know the Chinese language. Aren’t we disabled in speech then? Many centres in the world don’t focus on the particular area in which the child is disabled. Instead they focus on the child as a whole and term the child ‘disabled’ when that’s not the case. Nathan has managed to change that at her centre where she and a set of qualified teachers focus on the things a child can’t do. Divinity Intervention Centre When a child comes to her intervention centre, the first thing she does is place the child on a 10-day assessment. This 10-day assessment is extremely important in determining which area the child is having a disability and what areas need to be fixed. The assessment includes academics, checking of motor skills, sensory integration, behaviour and language, just to name a few. Once the assessment is done, the child is put onto a program. She suggested: “If you want results, put the child on a seven-hour program from Monday to Friday,” which is currently the program handled at her centre. After the child is fixed, he or she is placed in Preschool followed by Kinder 1 and Kinder 2. The Sri Lankan problem Nathan added that her seven hour program will produce more results than once a week therapy which is usually seen here in Sri Lanka. Having recently visited the Lady Ridgeway Hospital, she was able to find out that many disabled children come for therapy once a week and aren’t getting sufficient therapy. The lack of use of therapy in the country was the problem Nathan saw: “Sri Lanka has therapies that we don’t have. The problem is they don’t know how to use it. What the world is hungry for right now is therapy. Physiotherapy can work in all needs and not just special needs.” Nathan added: “No one knows how to do therapy or what to do. How come most children are classified as Down syndrome in Sri Lanka?” She also revealed how a five-year-old Sri Lankan Down syndrome child moved to Singapore for three months for this kind of therapy due to Sri Lankan hospitals and centres not knowing how to use therapy and also due to the lack of schools that support disabled children. Dealing with disabled children Disability is one whole subject, so dealing with children with disabilities cannot be jotted down in a book. As you know, love and patience cannot be given by following a book! Parents, teachers, physiotherapists and others who deal or want to deal with such children should make sure that they are capable of possessing and providing the following four: Passion: Nathan explained that you need to have that need in you to help these less fortunate children battle their disabilities. Love: “You have to smell and breathe the child. Think about the child,” stated Nathan. By showing that you love the child, he or she can make tremendous improvements. Creativity: It is necessary to have this trait because you can get a child to do something he does not want to do. For instance, you give a box of colours to a child and ask him to colour all the circles in red. Once he’s done, you can get him to colour all the squares in blue. He might not like colouring or the colour blue, but he’ll do it because it’s challenging and interesting. A lot of patience: It’s only human to sustain a certain amount of patience, but with disabled children it’s different. If your child is autistic, he or she would do something that will annoy you, but your child would not know that because of his or her capacity to understand due to being affected with autism. Other syndromes and miracle stories Autism and Down syndrome are the most common conditions known to mankind. According to the UN website on Down syndrome, 1 in 1000 to 1,100 live births worldwide is affected by Down syndrome. Approximately 3,000 to 5,000 children yearly are born with the chromosome disorder. Autism has a different story. reported 1 in 88 children are born with Autism out of which 1 in 54 are boys. There may be no cure for these conditions, but there are ways in overcoming them to a certain extent. While many people have heard of these common conditions, hardly anyone has heard of the following conditions: Angelman Syndrome A child is said to have the Angelman Syndrome if there is a deletion or inactivation of the maternal chromosome No. 15. Children of this nature can hardly walk or talk, may have seizures at a later stage, have light skin pigmentation, slanted eyes, constipation issues and are usually extremely happy and full of smiles, stated Nathan. By giving the right therapy, Nathan was able to make one little girl walk. When she first came to the intervention centre, she was two years and eight months old and could hardly walk or talk. Today she is five years old and can walk. Prader-Willi Syndrome This is the sister to Angelman Syndrome where there is a deletion or inactivation of the paternal chromosome No. 15. A child who has the Prader-Willi Syndrome tends to be on the obese side, cannot walk or balance. One boy came to her intervention centre at two years old and now at age four, he can walk with support. Cornelia de Lange Syndrome (CDL) This is also known as the Amsterdam Dwarfism or the ‘Monkey’ syndrome where multiples genes have been associated with the condition. Nathan explained that children having this syndrome have the physical movements and features of a monkey like the teeth of a monkey. They usually walk like monkeys do, have constipation and speech issues and are usually very hairy. One such girl was five and she was able to talk by the age of six. Whatever she was lacking in appearance, it was made up in learning. She was intelligent and very willing to study. Global Development Delay (GDD) A child can be classified with GDD if there are two or more developments delays. Usually the development delays can be vision, fine and gross motor, speech, hearing, language, personal and social skills. Nathan mentioned that one boy who came to her centre had similar issues. He also had anxiety issues, writing issues and wasn’t always there in presence. However, he was good at puzzles. After going through the seven hour program for five days for a number of months, he has improved in many of these skills and is now set to move to Kinder 1 in January. Intervention centre in Sri Lanka After having seen the lack of proper intervention centres in Sri Lanka, Nathan added that she has plans to open an intervention centre in Sri Lanka with the help of ETD. What’s the conclusion? Children with such conditions can be responsible adults one day, if and only if they are exposed to the right care and environment. Nathan said: “Teachers have to know the child because every child is different.”