Caleb Cowie is, to use his mother’s words, “a charmer”.
The six-year-old is full of laughter; as happy playing with his toys and looking at his books, as he is running around with other children.
Today, he’s showing off for the Friday photographer. He beams at the camera, apparently both intrigued and eager to please.
“He has a spirit that’s infectious,” says mum Suzanne. “He can have a room of strangers all smiling within minutes. He has an ability to make people laugh – his teachers, my friends, other children, they all love him.”
There is a ‘but’ though. Because generally none of those people are there when the tantrums and the difficulties start. Caleb Cowie was, you see, born with a severe form of Down’s syndrome (DS).
He can speak only a handful of words and struggles with the fine motor skills many of us take for granted. His lack of dexterity means he needs help when eating or performing basic tasks like getting dressed. He is also susceptible to spasms. Sometimes other children are wary of him because he looks a little different.
All of which leads this little lad to becoming frustrated. That, in turn, leads to tantrums. There’s crying and stamping and hitting things. It is not uncommon behaviour among children with DS.
“It can be absolutely draining,” says 41-year-old Suzanne, who lives with husband Christopher, also 41, eight-year-old daughter Caitlyn, and Caleb in Satwa, Dubai.
“You work so hard to do everything to look after your child and keep him happy but he is unable to express himself properly. His only reaction in certain situations is to cry, and you just don’t know why or what you can do to stop it.
“It’s heartbreaking. For him and for us. And, yes, it becomes difficult to cope with. It can feel like an impossible job. Like whatever we do will never be enough, we can’t win.”
There is, however, good news. For Suzanne – and for the thousands of UAE-based parents in similar situations – help is at hand. After a growing groundswell of opinion that not enough was being done for mums and dads struggling with children with Down’s syndrome, a not-for-profit organisation has turned its attention to their plight.
The Al Jalila Foundation – which was established by His Highness Shaikh Mohammad Bin Rashid Al Maktoum, Vice-President and Prime Minister of the UAE and Ruler of Dubai two years ago – has created a programme unlike anything previously seen here. It not only trains parents in the skills needed to manage (and cope with) disorders like DS and autism, but also aims to empower youngsters themselves so they grow up capable of using their talents and becoming active members of society.
It’s called Ta’alouf – Arabic, for harmony – and earlier this year it ran its first Parents Training Programme. Suzanne was among 90 people who enrolled. She says life – and those tantrums – have been better since...
“I can’t praise the programme enough,” she says. “I learned so much, and met so many people in similar situations, and, because of what was explained to us, feel much better equipped to deal with things.”
When it comes to children suffering with DS in the UAE, one thing seems certain: Suzanne is not the only mother to feel the way she describes. Such genetic disorders have traditionally remained hidden. Yet there should be no doubt about their prevalence.
An estimated 6,000 children in Dubai alone have special needs. Figures from 2013 show one in every 319 Emirati babies born in Dubai has DS. That’s more than twice the global average of one in every 800, according to the Centre for Arab Genomic Studies.
It was such numbers that were behind the decision by the Al Jalila Foundation – based in Healthcare City – to set up the Ta’alouf programme.
“This is a big issue in the UAE,” says CEO Dr Abdulkareem Sultan Al Olama. “Right from when the foundation was started, we had parents asking if we would do something relating to disorders like Down’s syndrome and autism that would help their children become better equipped and more suited for life in society.
“The aim of the Al Jalila Foundation is to support medical treatment, education and research with regards to healthcare challenges that are prevalent across the UAE – obesity, diabetes, cardiovascular diseases, cancer and mental health – so we felt Ta’alouf would be an appropriate undertaking.”
It was decided that the best way to give these children the skills needed to mature into fully functioning adults would be through supporting and equipping their parents.
Hence, the first thing managers of Ta’alouf did was create a Parents Training Programme. As part of this, mums and dads are – for four hours a week, over three months – taught techniques that will enable them to manage their children’s disorders better, cope with the unique pressures that arise from their situation and understand their rights under UAE law.
When Suzanne first heard about the course she had her doubts about how helpful it could be.
She was told about it by staff at Al Noor Training Centre for Children with Special Needs, where her son is schooled, and she pondered going along but wasn’t sure.
She’s had six years’ experience with Caleb, read dozens of books on his condition, and had conversations and consultations with experts both here and in her native India.
“I wasn’t sure a 12-week course would be able to teach me anything that I hadn’t already learned,” she tells Friday. “I think, in the end, I just went along to see what it would be like.”
She’s glad she did, too. The course – run by Professor Eman Gaad from the British University in Dubai, an expert in special needs training – sees attendees taught academic theories around disorders, while also equipping them with practical advice, hints and tips. Home assignments are set and parents are asked to discuss their experiences during the sessions.
“With Caleb, he likes to hold two of the same objects – he really likes coat hangers – but sometimes he will go to the television and hit it with them,” explains Suzanne. “We’re not sure why.
“Previously we’d take the objects off him, and that would end in a tantrum. But what this course taught me is that we should enforce positive behaviour with a distraction. Hence, we now have books near the TV. We stop him hitting it, and start reading with him. It does take longer than just taking the objects off him but it’s far less energy consuming than having to deal with a crying child.
“Things like this, as a parent, you sort of already know, but having them reaffirmed to you in these classes is such a big help.
“Plus you meet other parents. You share stories and you can start to laugh about things. Knowing that you’re not alone, that there are others out there going through the same thing is consoling.
“It also made me more accepting of my relationship with Caleb. It taught me patience.”
She adds that, while dad Christopher was unable to attend the course so he could look after Caitlyn (who doesn’t have the condition) and Caleb, he has found what Suzanne passed on invaluable.
At the end of the free course, attendees were asked to hand in a portfolio of work they had completed. This included diaries and personal research done as homework during the programme. Those that did were honoured with a special graduation ceremony at the Mohammed Bin Rashid Academic Medical Centre.
Another attendee was Shalini Moosa, of The Greens, Dubai.
Her son Faraz is 13 and also attends Al Noor Centre. He was diagnosed with DS at birth and, like Caleb, is unable to speak properly or use fine motor skills to do small tasks.
The family – 47-year-old Shalini and dad Mustaq, 49, as well as Faraz and siblings Faiz and Armaan – moved to Dubai from the US five years ago; and Shalini reckons the course is as good as much of what goes on in the States. “You are always looking to learn more when you have a child like Faraz,” she tells Friday. “One of the things the Ta’alouf course really drove home was how you could almost reinforce bad behaviour without realising it.
“So if Faraz is behaving inappropriately to get attention – grabbing me or hitting things – and we respond to that, it’s reinforcing the bad behaviour. There are better ways to deal with that situation. Like by asking him to stop behaving inappropriately and showing, with actions, that we will respond more quickly when he’s communicating his needs differently.
“It sounds simple but when you live with this every day, you don’t always realise how important such techniques are; and how, even if they take more energy in the short term, they are better in the end.”
If such positive testimony isn’t enough, the sheer numbers attending the course are also perhaps proof of its success. A pilot scheme in 2013 – run in Arabic only – was fully booked out with 50 parents undertaking the commitment.
The first proper course this year, which was attended by Suzanne and Shalini, was run in both English and Arabic. Ninety parents attended.
Now, bookings have come in so thick and fast, separate courses will be run focusing on different conditions, including DS, autism and attention deficit disorder. It is hoped by the end of 2018, some 800 people will have taken the classes, which it is planned will be taught by up to a dozen Dubai-based experts.
Those are numbers that Dr Abdulkareem Sultan Al Olama is pleased about.
“Ta’alouf is growing beyond even what we could have hoped,” he says. “We continue to attract more nationalities and a wider base of disabilities as more and more parents are interested in the course.
“We also have an increasing number of fathers – testament to the inclusive nature of the programme.
“The feedback and the tangible results we are seeing are proof that it was right to set this up. We are giving these parents the tools they need to raise children who don’t need to be defined by their conditions. That can only be a good thing.”
Indeed, it is perhaps for that reason that donors have been more than willing to come forward to support the Al Jalila Foundation.
One of those is Siddharth Balachandran, an Indian-born tycoon, who has granted Dh1 million through his holding company Buimerc Corporation.
“I have always been a great believer in addressing the root cause of problems,” says the 38-year-old, who has lived in Dubai for 12 years. “Most of the time we seem to spend too much time being reactive when problems occur, rather than being proactive before hand. The Al Jalila Foundation seeks to be proactive. It’s looking to address these health issues in a holistic manner, which is the only way such challenges can be met.
“I believe in paying forward. The corporation is doing well, and I wanted to contribute to a cause that would benefit society – because by benefitting society it benefits us all.”
If the Ta’alouf programme is anything to go by, Siddharth is already being proven right. And parents such as Suzanne are sure to be thankful.
“The programme taught me so many things that were practical and helped in my everyday teaching with Caleb,” she says.
“I understood why he behaved a certain way and I adapted so I could deal with it positively. It made me realise that working with Caleb in a positive and healthy environment was good for his overall well-being and his eagerness to learn new things, and that would help him grow and truly reach his potential.”