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Unusual programme for special needs children

 
  Monday, 16 l 08 l 2010 Source:  The Straits Times   
By: Liew Hanqing
     
 

Some parents here turn to controversial method by US institute for help

SOME parents of children with special needs here are looking to a controversial American programme to help aid their childrens’ development.

The programme, developed by the Philadelphia-based Institutes for the Achievement of Human Potential (IAHP), was introduced in Singapore in 2004.

Since then, about 300 Singaporean parents have attended courses run by the institute on how to help what the IAHP refers to as “brain-injured” children, with conditions including cerebral palsy, autism, Down’s syndrome and mental retardation.

The IAHP’s methods, however, have been widely criticised by organisations including the American Academy of Pediatrics (AAP), the American Academy for Cerebral Palsy and the Canadian Association for Retarded Children, all of which have issued cautionary statements about the institute’s therapies.

Among other things, the statements questioned the efficacy of “patterning” – one of the therapies for brain-injured children used by IAHP – which involves the repeated manipulation of a child’s limbs and head in a rhythmic fashion.

In its statement, the AAP said patterning was based on an “outmoded and oversimplified” theory of brain development.

“Current information does not support the claims of proponents that this treatment is efficacious, and its use continues to be unwarranted,” it added.

Currently, 30 Singaporean families are participating in the institute’s Intensive Treatment Programme, which aims to treat children with these conditions.

One of them, Mrs Katy Tan, 39, whose four-year-old daughter Chang was diagnosed in-utero with Dandy-Walker syndrome, a congenital brain malformation that involves the absence of part of the brain, said she has seen marked improvements in her daughter’s development since she started on the programme in 2006.

“When my daughter was born, she couldn’t see, hear or feel,” Mrs Tan recalled, adding that Chang would not
flinch or cry even when she was pricked by needles in hospital.

She started her daughter on the IAHP programme at the age of six months, which involved intense sensory stimulation.

“One day, when pricked by a needle, she just cried,” Mrs Tan said, adding that she was amazed by her daughter’s progress.

Now four, Chang can read and is just learning to crawl, but cannot speak or walk yet, Mrs Tan said.

She estimates the family has spent almost $50,000 on the programme, including three trips to the IAHP’s US headquarters, where they met with experts who customised a programme for her daughter.

“Each time we go back there, we learn something new we can apply,” Mrs Tan said.

Another parent, Mrs Tung Soo Sian, 37, who started her four-year-old son Wei Xuan on the programme last year, said it has worked like a charm.

Her son, who has Corpus Callosum Hypogenesis and Oropharyngeal Dysphagia, was immobile and could be fed only through a tube, but can now crawl and eat some food orally, six months after he started the programme.

She added, however, that the programme can get taxing for caregivers. “It’s very intensive, and lasts from morning till night, seven days a week. It can get stressful, but we’ve seen results – which is what matters,” she said.

Other parents opt simply to attend IAHP seminars conducted here every year. The five-day seminar costs $2,430 for a single parent or $4,400 for both. It teaches parents the programme’s basic techniques.

Dr Chong Shang Chee, head of the child development unit of the University Children’s Medical Institute at the National University Hospital, acknowledged that physical manipulation of the limbs could benefit children with motor impairments by improving strength or reducing spasticity.

She said, however, that parents who are anxious for a cure for their children’s conditions may be misled by the programme’s claims, and could be disappointed if targeted outcomes are not achieved.

“There are also other parts of the programme which are used adjunctively with patterning which may even be harmful – for example, masking, dietary manipulations in epilepsy treatment and withdrawing anti-epileptics for epileptic children.”

Responding to the AAP’s criticism, Ms Janet Doman, director of the IAHP, said the institute had repeatedly invited AAP representatives to observe their treatment methods for themselves, but that the offer has not been taken up “for more than 40 years”.

“Parents are quick to realise which organisations really care about their children and want to help them and those that do not,” she said.

Ms Katherine Wee, director of GD Baby’s Programs, the company that brought the IAHP’s programmes here, said she felt Singaporeans would benefit from it.

“We started running the programmes at a time when parents didn’t really know where to look for alternative treatments for their children,” she said. “It had worked very well for one particular family, so we decided to bring the programmes here.”

Dr Chong advised parents, however, to first discuss treatment and therapy options with an experienced doctor who can advise on what has been shown to work based on best evidence and practices.

“It is not a ‘one-size fits all’ approach and the underlying neurological deficits in each are distinct, and vary from child to child,” she said.

     
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