Like many children, David (not his real name) was spending his Saturday morning watching TV.

Even though the eight-year-old has seen this episode of Barney (the large, friendly purple dinosaur) hundreds of times, he sits enthralled. When it’s over, he asks his mother to put on another familiar episode by yelling “Barney friendship!”

Redundancy is important to David. Every morning, he asks for either butter chicken (chicken in a red buttery gravy), palak paneer (cottage cheese in spiced pureed spinach), or dal (curried lentils).

He plays Angry Birds on his iPad for hours. TV shows are either Barney or a specific Youtube video of nursery rhymes.

When in a car, he constantly asks to go to “FFC” (Family Food Center, a popular local chain of grocery stores), “Amen,” his name for church, or “Ba’ab Al Rayyan,” the name of his housing compound.

Without context, it is easy to mistake David’s idiosyncrasies for stubbornness or a difficult temperament.

But David is not like other children. A few days after he was born, the bubbly, kind-hearted and curious child was diagnosed with Down Syndrome, a condition in which a genetic anomaly – an extra copy of chromosome 21 – causes structural, developmental and motor deficiencies.

Named after John Langdown Down, who first described the disorder’s symptoms in 1866, it is suspected to be the most common chromosome abnormality in the world, affecting one in around 1,000 infants annually.

In Qatar, David is part of a small yet growing group of children who are born with genetic and intellectual disabilities, who continue to lack the affordable facilities and treatment centers required to better their lives.

Meeting Deena

Before she had her son, Deena (not her real name) worked in India for 14 years as a special education teacher, helping children with autism, Down syndrome and other disorders.

When David was born, Deena, now 46, remembers being thrilled.

“My first reaction was excitement. He was the cutest baby in the world. So chubby, always smiling. We had no reason to suspect anything,” the expat recalled.

And then came shock.

“Everything was normal during the pregnancy. It was only after that he was born and the doctors had doubts that we did the test. It came back positive. My first thought was ‘why me’; after everything that I had done, working with special needs kids, why me.”

Seven months later, in 2007, when her husband got a job in Qatar, the family relocated.

But while India was home to many public and private facilities such as schools, clubs, sports and therapy sessions for children with special needs, Deena said in Qatar, she found a void.

After speaking to a specialist who expedited the process, Deena managed to skip a long wait list and enroll David at the Early Intervention Center at Rumailah Hospital within months of the family’s arrival.

The free sessions covered initial occupational, speech and motor therapy, but only lasted around a year and a half, so as to accommodate the large demand for services.

Despite this, David still could not walk, speak, or reach many milestones that most children his age had already passed. And his lifelong journey had only just begun.

Next steps

Over the next few years, Deena looked into private tutors to teach speech therapy, and special care centers to help facilitate her child’s development.

Life in Qatar, a forum run by Commercial Bank, lists seven centers for children with special needs, two of which are restricted to Arabic speakers, and one that deals primarily in learning, not physical disabilities.

And on its official e-government portal Hukoomi, Qatar lists only four centers, including the aforementioned two, which exclude most expats.

Over the past six years, David has been to four different educational institutions.

According to Deena, the moves have been prompted in large part due to the lack of effective and progressive teaching methods at the various centers available.

“The education is not up to the mark. Right from the when child is five or six years, he’s not given his priorities (in terms of education). The assessments are not based on where the child is.

It’s based on the generic classroom set up. They don’t test IQs, so they cannot determine where each child goes. It’s all based on arbitrary assessments that differ across centers.”

Other issues, she added, include a lack of customized educational programs.

David, for example, has extremely poor muscle tone and definition in his upper body. Writing is onerous, and even at his age, he struggles to draw basic lines and shapes, let alone numbers and alphabets.

He is unable to hold a pencil well enough to create coherent figures on the small pages that make up his notebooks, but, with some help, can write legibly on larger surfaces like chalkboards.

“The classrooms here don’t emphasize the message (being taught) through different mediums. Even in normal children, each is a different type of learner,” Deena said. “Some are visual, some are auditory. (David’s) fingers aren’t capable of holding small pencils. He needs large markers, chalk, big crayons, but the centers here don’t cater to these needs.”

Other problems include a lack of communication between parents and educators, a high turnover of professional teachers and staff, a lack of a somewhat standardized curriculum and exorbitant costs.

Currently, David is enrolled at HOPE Qatar, an organization that was founded by a mother with a special needs child, that caters predominantly to Indian expats.

The fees come out to QR1,400 per month, but there are supplementary overhead costs.

The Child Development Center, where David currently receives two sessions of speech therapy, one session of learning support and one session of occupational therapy a week, costs QR400, QR350, and QR300 per session, respectively.

The combined cost totals QR7,200 per month, or QR 86,400 a year, and excludes all other relevant expenses associated with bringing up a child in Qatar like food, clothing, doctor’s visits, fun and games and other extra-curricular activities.

Despite the costs, Deena considers herself to be one of the few lucky ones. Her husband’s company pays for a portion of school and therapy fees, largely mitigating the otherwise debilitating financial burden of bringing up a child with special needs in Qatar.

Common ground

David’s story is not unique. His is part of a larger collection of stories from expats, steeped in disappointment and anger, who lament a lack of options, support and affordable care here.

At the American School of Doha, a small group of families gathers every Friday during Qatar’s cooler months to play baseball.

Because sports options for special needs kids are limited, with most centers operating out of villas and lacking larger play areas, many parents have taken it upon themselves to fill this void for their kids.

With the help of three volunteers, the children, a motley crew of around seven, bat baseballs set atop a small podium and run around a miniature version of a baseball arena complete with inflatable plastic bases.

For some kids, it is the only real physical engagement that they experience all week.

For their parents, the hour-long session is a release.

As their kids play, they sit court side, swapping tales of their week, their plans and above all, details on the latest segment in their journey to find education and therapy for their child.

For most, there is no respite.

Frustrated by the high costs demanded by the handful of specialized centers here, one mother has taken to homeschooling her autistic child.

“The real crime is that big schools like these, with all the money to spend don’t even look at our children,” she said, gesturing around. “We are immediately turned away. So where do we go? To centers that cost upwards of QR5,000 per month where my son isn’t even happy?”

Her sentiment was echoed by everyone present.

But not everyone sticks it out in Qatar. Despite the economic incentives to remain here, people like Dr. Rajeev Thomas, a member of the HOPE Qatar board, have urged people to leave Doha and go back to their home countries in search of better, more affordable facilities.

Thomas, whose son also has Down Syndrome, is in the preliminary stages of setting up Village of Hope, a dedicated care facility for children with special needs based in the outskirts of Chennai, a city in southern India. Speaking to Doha News, he said:

“It’s a place where differently abled children can come rest assured that even after their parents or caretakers are gone, there will be someone to look after them, enable them, and ensure that they live fulfilled lives.”

“Your children have to be your first priority. Everything else comes second. If you’re not able to find a place for your child here, then the only logical thing would be to move to another place where they have a better chance.”

The ‘f’ word

For now, David’s life is stable and secure. But Deena, and many parents like her, said questions about their children’s future only bring anxiety.

Instead, she focuses on the present, reprising her role as a teacher, with the help of her four-year-old daughter, who is David’s biggest cheerleader.

“There are no words to express the fear that grips me when I think about his future,” Deena said. “I have no idea what his life is going to look like after I’m gone. Most times, I don’t even want to think of it.”

Thoughts?