Coping with Down’s syndrome? It’s a walk in thepark
All 4 Down Syndrome Dubai, a support group, is helping parents cope with issues in raising a child with this chromosomal condition. The walk it is holding in Safa Park today is an initiative to raise awareness, its founder tells Shiva Kumar Thekkepat
A s Georgina Corey starts slowing down, her legs aching, she spots a crowd in the distance. Pushing herself to walk faster again the 15-year-old sees a throng of people holding banners and clapping her across the finishing line. She grins and, encouraged by her minder, turns to cheer the others still taking part. “Wasn’t that fun, Mummy?” she smiles.
While the teenager is happy she’s finished the 3.4km-long walk, she doesn’t think of it as the Annual Awareness walk organised by All 4 Down Syndrome Dubai, the support group her mother founded in a bid to help others like her. “For her, and most children with Down’s syndrome who are participating, it is a social event,” says Rebecca. But she points out it’s much more than a social occasion; it’s about raising awareness.
For most parents it is a shock to discover they’re expecting a baby with Down’s syndrome. For others, who only find out after the baby is born, it can feel like their whole world has come crashing down around them.
The shock and sadness is still visible on Mary’s* face as she watches her eight-year-old daughter Julie* playing in their Sharjah home. The 34-year-old still can’t get over the fact that her only daughter has the chromosomal disorder.
Children with Down’s syndrome have an extra copy of chromosome 21 and will have cognitive impairment and be at risk for other abnormalities,
from heart defects to leukaemia to early dementia. They could also have poor physical coordination and learning problems.
“It was a shock,” says Mary. “I was 26 when I had Julie and because there was no history of special needs in my or my husband Nathan*’s family I was not particularly concerned that there could be something wrong with my baby. I didn’t have any special antenatal tests done and the doctors didn’t spot anything unusual during the routine tests.”
Mary had her baby at home in Trinidad. “We were thrilled as Julie was the first female to be born into our family after a long time,” she says. But the joy lasted only until her doctor came in some hours later looking concerned.
“He told me that the hospital had run some tests and discovered that our daughter had Down’s syndrome. He also said, ‘If you are uncomfortable about looking after her the hospital could arrange fostering’.
“I went numb with shock. I couldn’t believe that my beautiful baby had special needs. A hundred thoughts came rushing to my mind – would my husband be able to accept her; what if we had other children; would they care for her?
“But whatever her condition I was clear on one thing: I would never leave her.”
Mary, a homemaker, admits that the first few months were harrowing and stress-filled. “There were days when I would just stare at her face and wonder if my beautiful daughter really had this condition. I still do.”
Her husband came to terms with Julie’s condition more easily, says Mary. “But then he doesn’t have to be in the house all day,” she adds with a trace of bitterness. Her social life has been impacted severely, she hardly meets her old friends, and she’s always afraid how people will react to her daughter if she takes her out.
Guilt was a constant. “I was never sure if I was doing the right thing,” she says. “During the first year, four therapists visited our house on a weekly basis. I kept a chart of all the exercises they suggested, and I wrestled with constant guilt when I didn’t cycle through the whole list as the week went on.”
“I go half mad every time I think of what Julie will have to face after our death,” she says. “Then there are the expenses related to her checkups and physiotherapy and speech therapy which are truly exorbitant.”
It is for parents like Mary that Rebecca’s support group was created.
Bringing up a child is not easy for any family. But for the parent of a child with special needs, especially Down’s syndrome, worries about their future can be overwhelming. That’s why 10 years ago Rebecca and a few others got together to set up a help group, All 4 Down Syndrome Dubai.
“Back then there were hardly any support groups for parents with special needs children,” says Rebecca. “I found that not only is it three times more expensive to raise a child with a disability here, but parents often lack professional and moral support. Sometimes, it is good to sit down and chat with other mums in the same situation, and give each other tips.”
Like Mary, probably the biggest worry for parents of a child with Down’s syndrome is how that child will cope after they have gone. In the case of the Coreys, both of their other children, Emma, 14, and Thomas, 10, are hands on with Georgina, playing with her and helping her to learn.
Even so, Rebecca still worries. “Georgina’s very sensible, and would never do anything really dangerous,” she says. “But if the doorbell went, Georgina would not understand the importance of not talking to strangers, while my younger son Thomas would.”
The support group, which has 100 members from all over the UAE, is gearing up for its ninth Annual Awareness walk at Safa Park today on World Down Syndrome Day. “We have been observing World Down Syndrome Day since we set up the group,” says Rebecca. “It’s an opportunity to educate people about the condition and to help parents to take better care of children with special needs.”
Rebecca, quoting figures from a study done by the US Center for Disease Control and Prevention says that there has been an increase in the number of children with Down’s syndrome. “That’s why it is more important to educate the world as to what Down’s syndrome is, how capable many people are despite having it. The walk is to educate people. It’s also a family occasion so people who have some connection with Down’s syndrome, whether it’s a relative or a friend, can participate.”
Christine Dessa, 45, and her husband, Abid Siddiqi, 48, are looking forward to participating in the walk. Christine explains that when she found out their second daughter, nine-year-old Alina, had the condition, “Initially I used to think in terms of Alina’s whole life. You think of what’s coming, all that can possibly go wrong, and that’s definitely not a good thing to do. It can be selfdefeating.”
She says that one of the most important pieces of advice she received from the support group was to focus on the now. “Look at what the child needs today,” she says. “That’s what I do. I don’t think whether Alina is going to get married, I just focus on the here and now. And now, I can deal with it much better.”
But once a parent has accepted their child has the condition, they have to push them to do their best, she says. “When Alina was a baby, I concentrated on feeding her and stimulating her visually and through touch, like you would with any other child. Had we known of the difficulties that were to come, we would have felt more daunted by the enormity of what we were taking on.”
Mary agrees. “Not that we have ever regretted Julie’s birth, but the problems, both practical and financial that come with her condition have been never-ending,” she says. And Rebecca reiterates the point. “When
‘Look at what the child needs today… I just focus on the here and now. I can deal with it much better’
I meet new parents I tell them, ‘if you want your child to succeed, the first thing to do is treat them like any other child you may have, and secondly, push, push, push!’” says Rebecca. “When you start feeding the child when the child could be feeding itself, you are delaying the child from having any chance of succeeding in life. We have to be tough. It they get used to people doing things for them they are never going to be independent.”
The stresses and strain of raising special needs children are immense, Rebecca says. “Firstly, it’s the expenses. Especially when they are young. Apart from all the regular expenses, there will be bills for physiotherapy, occupational therapy and speech therapy, all of which are very expensive. Then there’s the battle to get them into a good school, the right school. Education is a really massive issue where children with Down’s syndrome are concerned.”
Rebecca’s daughter, Georgina, was one of the first children in the UAE to go to a mainstream school, the Jumeirah Primary School. She is now at a special needs school, Rashid Paediatric Centre, because they couldn’t find a regular secondary school to take her.
Rebecca says, “Eighteen children from our Down’s syndrome group are now in mainstream schools, but there are very few secondary mainstream schools that will accept them. It is a major issue because these children are high functioning.”
Rebecca says, “The key issue for me as a parent who fights for the rights of children with Down’s syndrome is that everybody, from nursery to secondary schools to the workplace should see them as individuals, and not see their disability before their capability.”
She adds that over the past five years there have been massive improvements in the UAE for parents of children with Down’s syndrome. “If you have a baby or a very young child with the condition, then I think Dubai has a lot to offer. Financial security is important though as you have to pay for everything yourself.”
Rebecca is grateful that her two other children help with their big sister. Her son, Thomas, says “At times, she’s better than a ‘normal’ sister would be. Because she’s cuter than a normal child would be, isn’t she? She’s kinder than my other sister, I have to say that!”
Thomas teaches Georgina maths, along with table tennis and badminton. “If I didn’t have a sister with special needs I wouldn’t really care, would I? So I feel like its almost a good thing because she’s teaching me how it is to be different from normal,” he says.
Georgina understands her condition. “I am ‘special needs’ and my mother is always telling me to hurry up as I am slow in the mornings,” she says. “I like to help with cooking. I like singing and dancing. Because I have special needs I have a lot of special needs friends and I enjoy going to parties. I’d like to be a famous star when I grow up and leave school.”
Rebecca smiles at her daughter. “You have to keep pushing them on,’’ she says.
“It was heartbreaking at times, but when Georgina was taking those first steps, saying those first words, the satisfaction was so unbelievably amazing, something every parent takes for granted with a mainstream child.” Alina’s father, Abid, agrees. “Every child is a blessing, and every child has her or his own strengths and weaknesses,” he says.
“Once we understood what we had, it was like having our elder daughter Ayra. Alina has her strengths. Whenever I come home from work she’ll stop whatever she’s doing and tell me ‘Abu, I need a hug’. It takes away whatever stress I have. That, I believe, is a great gift given to us.”
Rebecca with daughter Georgina
Georgina during last year’s walk
MAKING A DIFFERENCE Abid, Alina, Ayra and Christine
Rebecca, Thomas, Georgina and Emma petting Keilo