Par­ents take charge

The Malaysian mother of a child with autism works closely with a lo­cal coun­cil in Lon­don to im­prove the qual­ity of life for spe­cial needs chil­dren.

The Star Malaysia - Star2 - - FAMILY - By WONG LI ZA star2@thes­

THE teacher’s in­struc­tion was straight­for­ward enough: “Go wash your hands in the toi­let.” How­ever, to then-three-year-old Naresh, that re­quest did not reg­is­ter in his mind. In­stead, it caused a huge out­burst.

“At home, the toi­let was a place where he eased him­self. So when the teacher told him to ‘wash his hands in the toi­let,’ he freaked out and threw an ab­so­lute tantrum,” re­calls his mother Man­jula Nithiananthan of the in­ci­dent that hap­pened two years ago.

“The teach­ers at the nurs­ery could not calm him down and I had to go there, hold him firmly and re­as­sure him that every­thing was all right.”

Naresh, the younger of her two boys, had just started nurs­ery school in Lon­don then, and was not yet di­ag­nosed with the autism spec­trum, also known as autism spec­trum con­di­tions or dis­or­ders (ASDs). (Ac­cord­ing to the web­site of the US-based Cen­ters For Dis­ease Con­trol And Pre­ven­tion, ASDs are “a group of de­vel­op­men­tal dis­abil­i­ties that can cause sig­nif­i­cant so­cial, com­mu­ni­ca­tion and be­havioural chal­lenges”.)

“Chil­dren with autism take lan­guage very lit­er­ally,” ex­plains the Alor Se­tar-born Man­jula, who has been liv­ing in Bri­tain for al­most a decade and is ac­tively in­volved in the parental move­ment for spe­cial needs chil­dren.

The mother-of-two ad­mits that it took her fam­ily some time be­fore they re­alised and ac­cepted Naresh’s con­di­tion.

“For a long time I was not aware of his con­di­tion ... I was busy ig­nor­ing the sig­nals, as it is never easy to ac­knowl­edge that your child has prob­lem,” she says can­didly.

It was only when he was four that they de­cided to do some tests, which put him on the autis­tic spec­trum as a “high-func­tion­ing autis­tic” (a child who has a high level of skills and abil­i­ties, and can func­tion in so­ci­ety, given the right coach­ing and sup­port),

Now five, Naresh is study­ing in a main­stream school in Bar­net, North Lon­don. There are 32 chil­dren in his class and he has a ded­i­cated teacher’s aid.

“Look­ing back, I wished I had known ear­lier what I know now so as to in­ter­vene sooner. Hav­ing re-learnt my parenting style and work­ing with my hus­band, we are slowly learn­ing what the world looks like from his eyes,” says the 46-year-old who grew up in Kuala Lumpur.

Fol­low­ing her son’s di­ag­no­sis, Man­jula be­gan to make it her aim to spread aware­ness of autism and how par­ents can make a big im­pact on their child’s life by be­com­ing the child’s ex­pert.

She not only sits on a par­ent part­ner­ship ad­vi­sory com­mit­tee with a lo­cal coun­cil in the Bri­tish cap­i­tal, she also vol­un­teers at a spe­cial school for chil­dren with autism. Apart from that, she is a mem­ber of the Par­ent-car­ers Par­tic­i­pa­tion For Dis­abil­i­ties And Additional Needs Bar­net (PP4Dan Bar­net), a non-gov­ern­men­tal or­gan­i­sa­tion for chil­dren with spe­cial needs.

Man­jula was back in KL in Au­gust to hold two work­shops for par­ents on how to cope with the chal­lenges of autism in the fam­ily.

“Par­ents need to be very alert to their own child’s be­hav­iour and un­der­stand what works best for him or her. You are the child’s ex­pert. If be­havioural ex­perts tell you some­thing you feel will not work with your child, don’t be afraid to tell them. You know far more than you think you do, so trust your in­stincts,” she em­pha­sises dur­ing our meet­ing in KL a few days af­ter the work­shop. Ac­com­pa­ny­ing her were her hus­band and their two kids.

“We also know a cou­ple of par­ents back in Lon­don who do not feel con­fi­dent enough to deal with their child and hire the right peo­ple to work with the child, which is per­fectly fine; but you need to be in con­trol.”

Build on strengths

Man­jula points out that a com­mon­mon is­sue about autism is that the med­i­cal per­spec­tive tends to of­fer a prog­no­sis but not con­sider the pos­i­tive in­flu­ences, be­hav­iour mod­i­fica-mod­i­fi­ca­tion and strate­gies that a child is ex­posed to.

Her ad­vice to par­ents? Use your child’s strengths to en­hance ar­eas he or she is weak in.

“For ex­am­ple, if your child is good at read­ing, then use lan­guage to teach him maths,” says Man­jula.

An­other im­por­tant as­pect in rais­ing chil­dren with autism is reg­u­lat­ing their emo­tions.

“One rea­son chil­dren have be­havioural is­sues is that they are stressed out and don’t know how to deal with it. Autism is so com­plex and there could be a num­ber of trig­gers that cause a child to stop speak­ing, or con­tinue speak­ing, or be­have in a cer­tain way,” she says.

Man­jula, whose other son Din­ish is aged six, ad­vises par­ents to keep a diary of their child’s be­hav­iours and tantrums at dif­fer­ent times, places and sit­u­a­tions.

Some aspects of autism will need treat­ment, oth­ers man­age­ment, or adap­ta­tion, re­spect and ac­cep­tance. As the child grows, de­pend­ing on the sup­port and in­flu­ence of their par­ents or car­ers, and the environment, strate­gies can be built around the child’s ar­eas of strength to ef­fec­tively help in his or her think­ing pat­terns.

“What is im­por­tant is early in­ter­ven­tion, pa­tience, buck­ets of love for all – the child and you – and fam­ily sup­port,” says the en­ergy ther­a­pist who teaches Theta­heal­ing, a tech­nique that fo­cuses on thought and prayer to cre­ate phys­i­cal and emo­tional heal­ing.

In Bri­tain, early in­ter­ven­tion is given much em­pha­sis and lo­cal coun­cils play a big part in sup­port­ing chil­dren and par­ents, says Man­jula.

“There is a spe­cific chil­dren’s ser­vice sec­tion un­der each lo­cal coun­cil and it gives sup­port by pro­vid­ing teach­ers, early in­ter­ven­tion pro­grammes, so­cial work­ers and so on.”

Along with that are var­i­ous char­i­ties and par­ent-carer net­works that not only sup­port par­ents but also play an ac­tive part in chang­ing poli­cies and prac­tices that are no longer rel­e­vant.

“There are also a lot of play-re­lated ac­tiv­i­ties that help chil­dren build con­fi­dence in so­cial set­tings,” she adds.

Learn­ing to­gether

Af­ter grad­u­at­ing with an MBA from the United States’ Lin­den­wood Univer­sity in Mis­souri in the mid-1990s, Man­jula re­turned to Malaysia and worked for a lo­gis­tics com­pany in or­gan­i­sa­tional de­vel­op­ment for five years.

She then took a break and went to visit a friend in Lon­don. It was there that she met her fu­ture hus­band, Mohd Salim Ja­malud­din, now a se­nior ex­ec­u­tive with a Malaysian bank­ing group in the city. Man­jula moved to Bri­tain in 2002 when they got mar­ried and she soon landed a job as a hu­man re­source strat­egy of­fi­cer with a lo­cal au­thor­ity in North Lon­don, where she worked un­til 2009.

In Jan­uary last year, she started her own hu­man re­source con­sul­tancy firm, round about the same time Naresh got his di­ag­no­sis.

“Naresh is an amaz­ing kid who learnt strate­gies to cope so his con­di­tion was never picked up un­til he was about three,” she says, adding that the lad is ac­tu­ally a few years ahead in terms of his read­ing skills.

“We have fun learn­ing and dis­cov­er­ing new things with lots of praise and hugs. We, as a fam­ily, are learn­ing from him as much as he is learn­ing from us,” says Man­jula, who calls her hus­band the an­chor in her life.

“We just need to fol­low Naresh’s rhythm, flow and di­rec­tion. He is very ob­ser­vant and con­stantly sur­prises us with the many de­tails he sees in things.”

Man­jula is con­stantly en­cour­aged and in­spired by par­ents who work tire­lessly to cre­ate a con­ducive grow­ing and learn­ing environment for their chil­dren with ASDs.

“That gives me a lot of hope for my child and gets me out of any neg­a­tive think­ing that my child is go­ing to be dis­abled. It re­as­sures me that all I can do for him is give him the right tools and guid­ance,” says Man­jula, who hopes to pur­sue a diploma in child­care in the near fu­ture. “Look­ing ahead, I know it will be a long road but we are de­ter­mined to make the most of it and have as much fun along the way teach­ing each other the need and strength of di­ver­sity.” n For fur­ther de­tails, e-mail man­jula.nithi@ bt­in­ter­

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