COUNT­ING THEIR BLESS­INGS

Against all hope, one mum is do­ing all she can to help her pre­emie twins – who have a host of de­vel­op­men­tal chal­lenges – shine. She shares her story with EVELINE GAN.

Young Parents (Singapore) - - Contents -

Against all hopes, one mum is do­ing all she can to help her pre­emie twins – who have a host of de­vel­op­men­tal chal­lenges – shine.

En­ter the Perez home and the first thing you will no­tice are its walls, al­most all of which are cov­ered with chil­dren’s draw­ings.

The floor-to-ceil­ing home­made col­lage might be noth­ing more than just a bunch of kiddy doo­dles to most peo­ple. But for Chris­tian Perez – or Chris as she is known to fam­ily and friends – they are a pre­cious re­minder of her 12-year-old daugh­ter Amor’s de­vel­op­men­tal progress over the last few years.

Amor suf­fers from mul­ti­ple de­vel­op­men­tal de­lays, which have af­fected her co­or­di­na­tion and mo­tor skills. Chris, 42, re­calls how at the age of seven, her daugh­ter’s draw­ings of happy smil­ing peo­ple had straight lips be­cause she couldn’t draw curves.

“But she kept draw­ing and even­tu­ally had a break­through. It was my hus­band’s idea to paste the draw­ings on the walls to mo­ti­vate her,” the stay-ath­ome mum says.

It took Chris a while to get used to the idea. “I al­ways thought a home should be cov­ered by nice can­vas paint­ings, not chil­dren’s draw­ings. But we will do any­thing the kids want to do – even if it means cov­er­ing our walls with their draw­ings – be­cause we be­lieve it gives them the mo­ti­va­tion to keep try­ing,” she says.

The Perezes be­lieve this pos­i­tive and en­cour­ag­ing method of par­ent­ing has helped their daugh­ter Amor and her twin brother, Nathan, trudge on amid their nu­mer­ous de­vel­op­men­tal chal­lenges.

A MUL­TI­TUDE OF HEALTH IS­SUES

Born pre­ma­ture at 32 weeks fol­low­ing a com­pli­cated preg­nancy that left Chris on bedrest for two months, the twins suf­fered mul­ti­ple med­i­cal and de­vel­op­men­tal is­sues at birth.

Be­fore con­ceiv­ing the twins, Chris had three heart­break­ing mis­car­riages.

At birth, Nathan was born blue and had a “hole” in the brain, caus­ing cere­bral palsy that af­fected con­trol of his lower limbs.

“The doc­tor told us he may never walk,” shares Chris, re­count­ing the ter­ri­ble di­ag­no­sis that left her shat­tered. She has a younger son who is nine year old.

At the age of four, Nathan was di­ag­nosed with se­vere autism. He was un­able to re­spond to his name, speak, in­ter­act so­cially or main­tain any eye con­tact.

Amor, on the other hand, had ap­peared healthy at birth, but her prob­lems showed up over time.

At five months old, she was found to have spas­tic mus­cles and was later di­ag­nosed with global de­vel­op­men­tal de­lay (GDD) when doc­tors saw de­lays in her phys­i­cal, speech and so­cial de­vel­op­men­tal mile­stones.

GDD is a term used to de­scribe sig­nifi­cant de­lays in two or more ar­eas of devel­op­ment – in­clud­ing mo­tor skills, com­mu­ni­ca­tion, cog­ni­tion and so­cial skills – in chil­dren un­der five.

Amor also suf­fered fre­quent seizures from the age of four to seven, as well as touch and hear­ing sen­sory is­sues that af­fected the way she pro­cessed touch and sounds.

“Since Amor could not hear prop­erly, she could not sing prop­erly. At three, she sounded like she was recit­ing Harry Pot­ter spells when she sang. But of course, we never told her (how out of tune she was). It was enough for us that she had the in­ter­est to sing,” Chris says.

While their de­vel­op­men­tal is­sues are likely due to their pre­ma­tu­rity, Chris some­times won­der if they are linked to the med­i­ca­tions she was pre­scribed dur­ing her preg­nancy or the med­i­ca­tions the twins took af­ter birth.

“But I guess we’ll never know for sure. I don’t want to keep think­ing about what went wrong but fo­cus on help­ing them,” she says.

BAD NEWS YEAR AF­TER YEAR

Re­call­ing the twins’ early years, Chris shares how bad news was thrown at them at ev­ery doc­tor’s check-up de­spite their ef­forts of early in­ter­ven­tion ther­a­pies.

“Ev­ery year, we kept hear­ing the same thing at their check­ups. It was es­pe­cially bad for Nathan,” she says.

Al­though con­ven­tional ther­apy meth­ods worked rel­a­tively well for Amor, Nathan’s progress was dis­mal. For in­stance, af­ter go­ing through a year of in­ten­sive ther­apy, Nathan was as­sessed to have pro­gressed only two months in his devel­op­ment.

“At four years old, his cog­ni­tive devel­op­ment was that of a one-year-old. At five, it was one year and two months. I re­mem­ber ask­ing my­self, is this how it is go­ing to be like for him for the rest of his life?” Chris says.

Re­al­ity hit her hard when the kids started at­tend­ing preschool. Chris had pinned high hopes on Amor as she did not seem to have prob­lems tak­ing in­struc­tion, un­like her brother, who was in his own world.

She thought Amor would “some­how catch up” with her peers over time. Look­ing back, Chris now re­alises it was denial.

“Com­pared to her twin brother, who needed a lot more help, I had high ex­pec­ta­tions for Amor. But when she started main­stream preschool, and you see the rest of the kids in school do­ing what four-and-a-hal­fyear-olds do, the re­al­i­sa­tion that she needed so much more help with her de­vel­op­men­tal is­sues

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