Bittersweet journey for parents with special needs children in UAE

He was three months old when we first found out there was something wrong. And a bittersweet journey of challenges commenced ahead of us."
Abeer Ismail's third son Omar, who's now 11 years old, was born with Down Syndrome. Finding out about the condition was hard enough, but the hardest part was the low level of inclusion these children enjoy until today.

"We were very lost when we first found out as we didn't closely deal with children of Down Syndrome before. Early intervention helped with getting him the right skills on time," said Ismail.
For the first five years of his life, Omar was registered in Sharjah City for Humanitarian Services where he received physiotherapy among other kinds of speech and academic intervention. Being born with cataract and undergoing eye surgery at the age of six months, Omar struggles with his weak eye sight.
Dreams of enrolling him in a mainstream school to give the right education and include him with other children in the society ended after years of attempt.
"We went around different schools in Sharjah and Dubai for two years, but no one agreed to take him. Many schools turned us down without reasons or assessments. It was only because he was different," said Ismail, highlighting that schools are still not equipped for integration of special needs.
"There are still not enough teachers trained to accept special needs students in their classrooms, and not enough school facilities. Hiring a shadow teacher costs thousands more than the school fees, which is something not all parents can bear," added Ismail.
She highlighted the high costs of special needs centres that sometimes can go up to Dh70,000 per year, noting the few numbers of centres available and long waiting lists parents have to endure before enrolling their children.
"All we dreamed of as parents is to see our child receive an academic degree that would help him become an independent adult, able to get a job and make his own living." Ismail said that majority of the centres do not focus on providing academic education as much as therapies.
Currently enrolled in Al Ferdous Rehabilitation Of People With Special Needs Center in Sharjah that cost about Dh34,000 a year, Omar is also being home-schooled four times a week. The question is where will he go when he goes beyond 18 years old?
"Centres accept students until they are 18 years old. Then it becomes a very sticky situation for parents of adults with special needs. Where will they go? There are few activities available for them across the country," said Ismail.
This leaves mothers of the differently-abled in distress, searching for an outlet that would take their children away from home boredom.
Staying at home for long hours is the main drive of aggressive behaviour among children with special needs, said Ismail, urging for inclusive activities and jobs to be available for adults.
"As parents, we won't live for our children forever. We want to make sure they are fine and will be able to live independently without us," said Ismail.
'When life gives you lemon, make lemonade.'
Having a young man with autism has not been easy for an Emirati family, especially as he's raised in a community with relatively low awareness of the disorder.
Dedra Stevenson's autistic son Ibrahim is 24 years old. He was at Al Noor Training Center for Children with Special Needs from the age of 10, before he was forced to leave at the age of 19.
Looking around for centres that accept adults, the family failed to find a suitable facility, which prompted them into hiring two male helpers who designed a special home programme for Ibrahim that includes reading exercises, sports, arts and yoga. The costs for the family sometimes exceeds Dh9,000 a month.
"While Ibrahim is lucky to have a family that's capable of supporting him, imagine how many autistic adults are sitting at home, watching TV with nothing to do," said Stevenson.
"We had to take a proactive stance to provide him with something that gives him a purpose in life," she said of Ibrahim, her second among four children. While Stevenson said the early intervention is more advanced in the UAE than before, more attention needs to be directed towards the adult segment of the differently-abled to avoid their seclusion from the society.
With scarce job training and few activities, Stevenson said the ultimate goal is to have a centre for adults that doesn't only provide therapies but also a community life for them. "They need to feel there's a reason to wake up every morning go do something since they don't have jobs or universities to go to like other men and women of their age. They need to go somewhere where they have social events and sports."
Stevenson recently made a film called 'Lemonade' in collaboration with Emirati student Sarah Al Hashimi to tell her son's struggle as an adult too old to attend school.
Shedding light on the problem, Stevenson said families must make the best of what they have. "While Ibrahim doesn't have much access to facilities across the country, we turned it the best way we could. I hope our story gives an idea to families who don't know what to do to provide the best living for their children."
Stevenson also urged teaching school students and sending public messages to increase awareness of dealing with the differently-abled. She said people's stares in public and lack of understanding towards the special needs is what sometimes prompts families to keep their children at home.
"People need to understand that as parents of special needs, we need a break, we need help. And we hope we could get an inclusive community together," noted Stevenson.
What parents need the most is support
When Gulshan Kavarana first found out her daughter Zara had Dravet Syndrome, she felt stranded and needed to talk with other families in the same situation.
Turning to the Internet, she found no support groups in the UAE. That was back in 1999 when she decided to start her own Special Families Support Group (SFS).
"Families with special needs children don't always have the privilege of going out in public as they often feel unwelcomed. Once I was asked to leave a restaurant just because my daughter made a loud noise," said Kavarana.
She noted that support groups allow parents to feel accepted with their children and gives them a layout to have a good time, while sharing their experiences. Starting with six families, SFS has grown to connect over 500 families with special needs children and hosted several events over the past 18 years.
"We have no one to rely on but each other, and that's what the group has been really useful for. Families get to forget their pain, laugh and get exposure during our meetings," said Kavarana.
Kavarana said more awareness, support and integration must be established in the society. "The differently-abled are active members and they can add to the economy, but we have to keep in mind that everyone learns differently, and that's inclusion."
She noted that integration must be through equality and respect, which could be achieved by adding a subject to school that educates on the special needs.
 sherouk@khaleejtimes.com