Cop­ing with Down’s syn­drome? It’s a walk in thepark

Friday - - Event -

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

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