ABU DHABI // When Kelly Morrison gave birth to Isabelle, she was told: “You must be a very special person to have a special child.”
But the Abu Dhabi mother, whose daughter has Down’s syndrome, says: “That’s not the case. You just have to deal with a lot more than the average family has to deal with, and you need support.”
But support is not always available. “It’s very difficult to have a child with special needs,” said Mrs Morrison, who found few schools open to children with disabilities and not one centre for expatriates with nursery-aged children when she moved to the UAE in 2006.
“Most of the children are just left at home not doing anything,” she said. “When babies are born, the doctors basically say your child could have this, this and this. Take it home and love it. Families are given no support. And they have to go and deal with all of their emotions on top of caring for a newborn that has extra needs.”
Mrs Morrison started a support group for families with Down’s syndrome children, which she says is the first of its kind in the city. It has more than 45 members.
According to Dr David Saxton, medical director at Al Corniche Hospital, when babies are born with Down’s syndrome they are registered with a support service, given contacts for Ms Morrison’s group and provided with initial counselling by clinical staff in the neonatal unit. Information of other sorts is downloaded from the internet on an “as needs” basis.
Statistics from the National Association for Down Syndrome in the US indicate that the condition occurs in one in 800 live births. However, according to one 2007 study of 24,250 newborn Emiratis in Dubai, the rate was one in 319.
Keen to do more, Mrs Morrison, who is finishing a graduate diploma in inclusive (special) education, teamed up with Annelies Hedditch, a special-education teacher, to open an early intervention centre for disabled children in the capital.
“For some reason, special needs is an issue that many people don’t like to think about,” she said. “When you see how much money goes to help other countries build schools, you just think there are a lot of kids here that need that help.”
Resources are scarce for Emiratis as well. Mothers say that Abu Dhabi has only one special-needs nursery school for local children and it is not on the island. The Ministry of Social Affairs, which is responsible for such schools, did not respond to several requests for comment or confirmation.
“Children with disabilities cannot get into a normal nursery,” said Mrs Morrison. “You find some that will take a child, but that’s pretty much a high-functioning child.”
And, said Mrs Hedditch, “there are no special needs kindergartens either”.
Mrs Morrison and Mrs Hedditch want to fill the gap by creating a place that incorporates play and education for children as well as offering support to families. “Early invention is really important,” said Mrs Morrison. “Children with Down’s syndrome who receive early intervention function much better than children who don’t receive it.”
The centre will take children with Down’s syndrome, autism, hearing impairments, global learning delays, intellectual impairments, physical impairments, cerebral palsy and blindness.
One of the main goals is to set up a support network, allowing parents to share information, such as who are the best local speech therapists and techniques for raising their children.
“The idea is that when they come for a playgroup session they learn what to do with their child,” said Mrs Morrison. “They learn different methods of communication or activities they should be doing with their child at home.”
But Mrs Morrison and Mrs Hedditch see the centre as more than a playgroup. They say it will also be a place where parents can seek support.
“You can talk honestly to another parent who is in the same situation as you,” said Mrs Morrison. “If you speak to other people it’s more difficult because they don’t know what you’re going through.”
Early-intervention programmes typically focus on four major areas: motor skills, language, social development and self-help skills. Such programmes, which are readily available in the US, Canada and Australia, often receive state funding. Today, every state in America has a centre that co-ordinates such services.
Dr Lilly Tennant, the work-placement co-ordinator at Emirates College, said depriving disabled children of the benefits of early intervention could be detrimental to their development.
“Children develop at a faster rate during the pre-school age, from birth to five years,” said Dr Tennant. “Without early intervention for young children they can be at risk of missing opportunities to learn.
“Research has also shown that early intervention can help children become less dependent later on in life.”
Although Mrs Morrison and Mrs Hedditch will not be able to offer physical, occupational or speech therapy at the centre, Dr Tennant said it was a step in the right direction. “There isn’t even much awareness of the need for early intervention in Abu Dhabi,” she said.
“One of the primary reasons for early intervention is for the families to provide support, so that they feel there is potential for the child.
“That in itself is a big thing. Otherwise there are low expectations, and then they realise ‘my child is eight years old and not even toilet trained’. That’s where early intervention makes a big difference.”
However, Mrs Morrison and Mrs Hedditch have run into serious obstacles. Opening a new school – particularly one with such a special mandate – is not an easy task in the Emirates.
The pair initially approached the Ministry of Social Affairs, seeking a licence which would have allowed the centre to operate as a nursery. However, to run speech and physical therapy they would have to go through the Ministry of Health.
“Everyone was very supportive of the idea, but they said you need the funds upfront,” said Mrs Morrison. “To set it up and run it for about a year, we were estimating about Dh2 million (US$544,477).
Neither Mrs Morrison nor Mrs Hedditch had the money, so they decided to try another route. The pair found a sponsor and tried to register the Abu Dhabi Early Intervention Centre as a business, despite the fact that it would be run as a not-for-profit venture.
However, they were presented with another obstacle: according to Mrs Morrison the Ministry of Planning will not issue a business licence without premises. “You have to pay a year’s rent upfront and that’s the killer, that’s very difficult here,” said Mrs Morrison. “Everything is very expensive and hard to find,” said Mrs Hedditch. “To rent a villa, it’s Dh3-400,000 (US$81,671-108,895) and that’s before you even buy a puzzle or a book.”
Now, the pair will have to depend on the public’s goodwill if they are to realise their dream. “We’re depending on people to donate premises, to donate equipment, to donate money,” said Mrs Hedditch.
“We’d like people to realise it’s a community issue,” Mrs Morrison added. “Having a child with a disability can happen to anybody. It shouldn’t be a certain set of people who have to do everything, it should be a whole community effort.”
Kathryn Lewis