ABU DHABI // When Fatima al Najjar left Al Corniche Hospital after giving birth to her daughter, Alaa, she knew her baby had been diagnosed with Down's syndrome, but was unaware of the implications. "At the beginning, it was very painful," said the Emirati. "When you don't know what you're dealing with, it's very hard. But now, I can't believe the joy we have. She's the centre of our universe."
Mrs Najjar wants to see Abu Dhabi adopt a system where mothers are referred to experts from the day the baby is diagnosed. "Not all the mothers are well educated, or have exposure to information, but all the mothers deserve to be guided, to be helped." The mother, she said, "has two pains. The pain of not having a perfect baby, which by itself is a big issue; everyone wants a perfect baby. The second pain is the future. Thinking about the future, how to deal with it, how to really play an effective role in getting the kid the required skills at the earliest."
Mrs Najjar learnt about Down's syndrome from a relative in the same situation months after Alaa was born. She also joined a support group. "At the beginning, people don't know anything, any piece of information helps," she said. "The first enemy to the new parent is ignorance. If they don't know what they're dealing with, of course they feel panicked." Mrs Najjar is now trying to find an early-intervention centre for Alaa. "I want to have peace of mind," she said. "I want to send my kid to one centre where she can learn everything. We see the potential in our kids, but we don't have the mechanisms to improve and use them. This is very painful. We are not professionals, we are not therapists, so we cannot know the best ways of getting it out. Down's syndrome specialists say the first few years is like a golden age for the kids. They are just like a sponge. If you wait their chances of getting skills and knowledge will be reduced."
But finding a centre is no easy task, even for Emiratis. "The governmental centre in Al Mafraq is very far away," she said. "It's really exhausting to go there for one or two hours of therapy. It's not worth it. For a working mother, it's a nightmare." Mrs Najjar has been trying to get Alaa into the Future Centre, one of a handful of private special-needs school in Abu Dhabi, but she has been turned away because Alaa is not yet four. "For four years, what should I do with my kid at home?" she said. "Being at home will not help her. And what about people who cannot afford to send their kids to private centres?"
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