A Child Lured Out By An Emotional Connection
Reprinted from South China Post, Canada
The unsuspecting dinner guest simply did not get it when Kilee’s parents praised her for hurling a toy at him. My niece laughed, spun around and hurled another, then stared at him intently, albeit briefly.
Kilee, aged 3.5, is autistic and her family is more accustomed to her avoiding eye contact and seeming oblivious to visitors. A year ago, Kilee was completely withdrawn and obviously unhappy, but things are changing. During the past 12 months, she has been involved in Son-Rise, a programme designed to help her become a willing participant in life.
Kilee’s introduction to the world begins with guests entering her playroom and her world, meeting her on her terms.
During the 10 to 12 hours of daily playtime, Kilee is in charge of the activities. There are no orders or reprimands and whatever Kilee chooses to do is fine. The goals of her ‘guests’ or ‘facilitators’ include developing eye contact, word or word approximation and extending the length of appropriate play, even if this means joining Kilee in body- painting or spitting juice on the floor. Kilee’s mother, Tammy
Patchell-Evans, said that before starting the Son-Rise programme, Kilee never responded to her name; now she responds 80 per cent of the time. ‘She’s gone from only noticing family faces to being intrigued by new faces. She’s just started to use words instead of just saying them. She’s expanded her eating habits, she’s potty-trained, and she’s 100 per cent happier,’ Ms Patchell-Evans said.
Parents and professionals helping children with special needs often have specific agendas: teach the child to talk, use the toilet, eat with utensils, read or perform practical skills.
The aim of the Son-Rise programme is to have every child realise those capabilities. But, rather than trying to control the agenda to teach a child specific skills, the goal is to encourage them to become a fully participating and motivated person on the precept that this has the greatest impact in the long term.
The programme’s power lies in the attitude of the ‘facilitators’ (who may include parents, friends, volunteer and paid workers): loving and non-judgmental.
Behaviour is not labelled as good or bad, right or wrong. The perspective is that each child is doing the best he or she can. Instead of pushing them to conform, the goal is to understand their world and encourage them to want to learn more and join ‘our’ world.
When Kilee was diagnosed with autism, her parents bought every book they could and logged on to the Internet. They also checked out what was available where they lived – in London in Ontario, Canada – which turned out to be behavioural modification therapy.
Ms Patchell-Evans participates in a support group of about 12 women, 10 of whom are using behavioural therapy and two following the Son-Rise programme.
Ms Patchell-Evans said: ‘Most [children in behavioural therapy] are verbal, with language skills ranging from ‘yes’ or ‘no’ only to a huge vocabulary, but they seem to have very little comprehension. They have knowledge of ‘appropriate’ information but are unable to apply what they have learned to daily living. They know that the fire truck on the flash card is red but they would not recognise a real fire truck.
‘It has been my experience that these kids are like well-trained animals and their responses are unnatural, almost Pavlovian. ‘Our thinking is that autism is an emotion-based disease that has some physical components but is largely to do with a lack of understanding relationships. We feel the Son-Rise programme is emotional in nature and therefore goes to the root of the problem.’ The Son-Rise programme is not available in Hong Kong; nor was it available where Kilee’s family live. They went to the
Option Institute, a non-profit centre in Sheffield, Massachusetts, in the United States, which runs Son-Rise.
They completed the one-week residential programme and returned to London where they started their own programme, keeping in contact with the Option Institute staff.
The institute was established following the successful experience of founders Barry and Samahria Kaufman with their son, Raun, who at 18 months was mute and totally withdrawn. Doctors and specialists told the Kaufmans that with an IQ of less than 30, Raun eventually would have to be institutionalised.
Defying the experts, the Kaufmans designed and implemented their unique, child-centred, home-based programme, working with Raun 12 hours every day, for more than three years. When they finished, Raun had evolved into a highly verbal, extroverted, loving and intelligent young boy with a high IQ. They say he bore no traces of his original condition and went on to graduate from an Ivy League university with a degree in biomedical ethics.
When Ms Patchell-Evans asked how many children are ‘cured’, the response was a little fuzzy. The Option Institute does not formally track the results of the programme because many parents do not want toparticipate in this data collection. They do not want their child stigmatised by the word autism or submitted for testing and re-testing. She was told that hundreds of children have been ‘cured or gone into remission’, but also that there is no guarantee.