x Abu Dhabi, UAETuesday 16 January 2018

Parents of special-needs kids push for more acceptance

Support groups for parents of children with special needs are encouraging parents who have children with disabilities not to be ashamed of them.

Mahmoud Omar Jarour, 13, left, and Abdullah Al Haj Nasser, 9, take part in an activity at the UAE Down Syndrome Association.
Mahmoud Omar Jarour, 13, left, and Abdullah Al Haj Nasser, 9, take part in an activity at the UAE Down Syndrome Association.

DUBAI // The challenges of raising a child with disabilities in the Emirates came into focus this week after police said they were looking for a way to file a legal case against parents who had abandoned their six-month-old baby in a Dubai hospital. The parents did so after learning that the boy suffered from epilepsy and neurological disorders.

For Emirati and expatriate parents of children with disabilities, this incident reinforces a message that they carry with them each day: that people need not be ashamed of special-needs kids nor hide them away at home.

Calling for a more inclusive society, doctors and support groups alike say that interaction, involvement and integration dramatically improve the lives of children with special needs.

"First, parents must accept the disability. Next, they must not feel ashamed," said Dr Manal Jarour, a paediatrician and the head of the medical committee of the UAE Down Syndrome Association.

"They must be told they don't have to hide their children. They must expose these children to society."

Dr Jarour helps mothers of disabled children who are struggling with acceptance.

"They actually come in to examine their child, then they talk for long and they cry," said Dr Jarour, who has five children.

Dr Jarour's youngest child, Mahmoud Omar, 13, has Down syndrome. The genetic condition is associated with impaired intellectual and physical growth.

"Some think it's the end of the world. Many don't absorb the shock completely. They go through different stages. For some, acceptance comes after months or a year," Dr Jarour said. "I struggled, too."

Dr Jarour began the support group with another Emirati family in 2001. The organisation was formally instated five years ago. It focuses on early intervention, speech therapy and occupational therapy to strengthen fine motor skills.

Currently, 563 children, including 350 UAE nationals, are registered with the association.

As Dr Jarour gave an interview recently in the association's Jumeirah office, her son furiously clicked photographs.

"Don't look at me, speak normal," Mahmoud instructed his mother in Arabic, urging her to focus on the interview.

"I will put you in Facebook," he said, laughing.

All across the emirate, mothers have read books and eventually formed support groups in the absence of information on their children's disabilities.

Nawal Al Haj Nasser already had three children before her son, Abdullah, was born nine years ago with special needs.

"My husband was my support," she said. "He made me strong and broke the news to me slowly after a month about how we must care for Abdullah more than our other children. But the doctors broke the news very badly to him. They told him Abdullah would die soon; that he was mentally retarded."

As the head of the association's family support committee, she is willing to offer her experience to counsel parents in hospitals.

Like several other mothers, she was turned away by many schools before Abdullah was finally accepted into a mainstream school, instead of a special-needs centre.

Abdullah and Mahmoud are among a handful of students who are being taught alongside regular students, in Arabic- and English-language schools. They share the same classrooms with other children, although the curriculum is tailored to fit their needs.

Instruction in a mainstream school comes with its own set of challenges: mothers initially accompany their children so they don't get overwhelmed in a big school. Either the parents or the schools will also appoint a shadow teacher to assist the child, which can double the cost of the education.

Yet inclusion has worked for Christine Dessa's seven-year-old daughter, who has Down syndrome and studies in a British curriculum school.

"These children learn a lot by copying and imitating," said Mrs Dessa, an Indian national and a founder of the All 4 Down Syndrome support group.

"It raises the bar for them to learn with other kids."

Sally Pearson, a British national with a 24-year-old son who has Down syndrome, said inclusion must be planned.

"If handled well it's great, but the most disastrous thing is putting a special-needs kid in the mainstream if the teachers aren't well prepared," said Mrs Pearson, who runs a programme for 80 teenagers with disabilities.

Along with teenagers from different colleges, the children with disabilities participate in picnics, beach trips and sailing.

Such interaction helps break barriers.

"Our teenage volunteers realise that not all kids have the privileges they do," said Mrs Pearson. "It helps the children develop a circle of friends. We do get people staring, but the more these kids get out, the more attitudes will change."