Little steps for a rewarding result

from the Hindu by R. Sujatha:

Several years ago, when Sujeet Desai visited the city, he performed exclusively for children with Down syndrome. The children were thrilled and the parents at the programme told me that there was hope, even for their children.

Sujeet’s mother told the audience how her son, who had Down syndrome, had discovered a new world, was independent and travelled around the globe for music performances. Sujeet spoke to the children and remained the star attraction on that day.

Last week, the Down Syndrome Association of Tamil Nadu organised a day-long workshop for 30 government school teachers, who were exposed to training methods of therapists from the United Kingdom. D. Sabitha, principal secretary of school education, inaugurated the workshop, and told the teachers that they would in turn, train their peers and colleagues. The aim is to address the needs of children in mainstream government schools, and those in residential centres.

Chronologically, the child could be a teenager, but may have the IQ of a pre-teen, explained Julie Hughes. Children with Down syndrome must be taught using visual cues, given their low attention span and their problems with hearing. Children often hear only the last syllables of a word and they have difficulty in retaining sound patterns in their memory. Suppose you have to teach the child the word ‘ball’. It would be better to use the word repeatedly in as many sentences as you can. So if you are too quick with the words, the child does not understand it.

Children with Down syndrome are at a higher risk for ear infections and hence have difficulty in hearing, ENT surgeon Mohan Kameswaran says. This leads to speech delays and unlike children without the condition, they are unable to understand verbal cues. “Hearing impairments and octological problems are found in 38 to 78 per cent of children with Down syndrome, compared to 2.5 per cent of other normal children. Such children must undergo audiological screenings at birth, and then every six months for three years,” Dr. Mohan said. However, appropriate evaluation and treatment can have a significant impact on the quality of life of children with Down syndrome, he added.

Down syndrome is a genetic disorder that affects one in 750 children in India, said Rekha Ramachandran of Down Syndrome Association of Tamil Nadu. The only way to ensure that such children are mainstreamed in schools is by training enough resource persons, she added.

When I asked her about Sujeet and his extraordinary achievement, she said independence comes with confidence in communication. In India we are still taking the first tentative steps towards teaching our children with Down syndrome to communicate. When this is achieved, we will have many Sujeets.

Advocacy for visual learners

From the Rocky Mountain Collegian:

It’s been a bad day for 6-year-old Maddie Gillespie if she comes home from school with just one sticker.

Every time she accomplishes an assigned task, her teacher places a star on a sticker board.

“My child learns from more visual cues versus just being told and given a directive,” said Randi Gillespie, her mom and family coordinator for the National Association for Down Syndrome. “If she comes home with a whole panel full of stickers, she knows it’s been a good day.”

But her daughter’s needs as a visual learner weren’t always met.

Maddie Gillespie was born with Down syndrome –– a genetic disorder described by the Mayo Clinic as one that causes lifelong mental retardation, developmental delays and one that varies in severity –– which, before moving schools, led some special education teachers to treat her the same as any other child with the disorder.

“Just because my kid has Down syndrome, and the kid next to her has Down syndrome and they look the same, doesn’t mean they learn the same. All children learn completely different,” she said.

Until the year 2000, researchers within the field of developmental sciences told educators to take a homogenous, “one size fits all” approach to teaching those with intellectual disabilities, said Deborah Fidler, a researcher in the Department of Human Development and Family Studies at CSU.

But she, alongside fellow researcher Lisa Daunhauer, recently received an $800,000 grant from a branch of the Department of Education to study how individuals with Down syndrome are predisposed to unique learning styles based on other genetic factors. Those with Williams or Fragile X syndrome, for example, predisposes children to very distinct areas of learning.

“In the world of developmental science, we’ve appreciated these developmental differences over a decade or two. We’re moving beyond a one-size-fits-all approach and toward a more tailored approach to special education,” she said. “That way, we can get much more innovative about teaching them.”

The duo applied for the grant in June of 2010 and survived a hypercompetitive application process to receive the funding in April of 2011. A panel of 20 experts in the field of developmental science reviewed Filder and Daunhauer’s proposal alongside stacks of competing applications and agreed their suggested study would best further public knowledge of Down syndrome.

The funding will be used to bring families in for lab visits and administer play-based tasks that will measure this cognitive domain of executive function, Daunhauer said. The money will also be used to gather information from parents and teachers, “So we can see a full picture of what these skills look like … and how these skills are being used.”

“As we get outcomes, we’ll be sharing them in peer review journals, conference presentations,” she added. “We’ve definitely offered our services informally as well.”

News of research explaining diversity in learning styles among children with Down syndrome is welcome to Gillespie, whose experience with special educators has left her questioning their expertise in the field of developmental science.

“In general, across the board, they just don’t have up-to-date and accurate information,” she said. “And from a parent point of view, it’s very frustrating.”