Take a break

Breaks are vi­tal for the well-be­ing of care-givers of chil­dren with spe­cial needs.

The Star Malaysia - Star2 - - PARENTING - by LOH SIEW HAR

HELP Uni­ver­sity is of­fer­ing a free train­ing pro­gramme en­ti­tled Chil­dren’s So­cial Skills Train­ing Group. Based on the Uni­ver­sity of Cal­i­for­nia Los An­ge­les Chil­dren’s Friend­ship Train­ing Pro­gram, it aims to em­power par­ents to fa­cil­i­tate their chil­dren’s so­cial devel­op­ment. For de­tails, con­tact Ms Foo Pei Lynn, % 016-494 2159, e-mail: plyn­n_­foo@ya­hoo.com. > A half-day sem­i­nar en­ti­tled Sib­lings Are Spe­cial Too! will be con­ducted by speechlan­guage pathol­o­gist Melissa Peter on Oct 16 at Care Speech & Lan­guage Ther­apy Cen­tre in Kuala Lumpur. She will pro­vide an over­view of the fine emo­tional in­ter­play in typ­i­cal sib­lings of a child with spe­cial needs and of­fer point­ers for par­ents/fam­i­lies on how to strike a bal­ance. Fee: RM70. For de­tails, call % 0321616618 / fax: 03-21617617 / web­site: www.care­speech.com. > A 24-week bead­ing course to help teenagers with spe­cial needs en­hance their mo­tor and so­cial skills is be­ing of­fered by Senses-at-Play. Venue: Senses-at-Play Fun Cen­tre at 41-B, Jln SS2/75, 47300 Petaling Jaya, Se­lan­gor. To reg­is­ter, con­tact Anna Wong at 012-372 3776 or go to www.senses-at-play.com. > The Na­tional Autism So­ci­ety of Malaysia is host­ing a talk on De­vel­op­ing Lan­guage And Fa­cil­i­ta­tion Com­mu­ni­ca­tion For Your Child on Oct 16, in Kuala Lumpur. It will be con­ducted by speech and lan­guage pathol­o­gists Grace Koh and Ron­nie Tan. For de­tails, e-mail sec­re­tar­iat @nasom. com.my or call % 03-7710 4098.

IT’S Satur­day morn­ing and Peter goes to Pe­man­car House in Glu­gor, Pe­nang, as usual. He takes off his shoes, puts them on the shoe rack and pre­pares to walk straight into the house. He waves good­bye to his par­ents when they call out to him: “Pete, bye”. Then his par­ents leave with wide smiles on their faces, go­ing off for a few hours to spend pre­cious fam­ily time with their other chil­dren.

Peter, a 17-year-old with se­vere autism, is the sec­ond child of Mr and Mrs Lee. Ev­ery­day he spends his time roam­ing around his home as there are no avail­able care-giv­ing ser­vices suit­able for his age and needs.

His mother, the main care­giver, has not taken a break since his birth. She was able to get her much-needed respite only af­ter Pe­man­car House be­gan op­er­a­tions in March this year. Pe­man­car House Respite Care Sup­port Cen­tre is a joint project be­tween Asia Com­mu­nity Ser­vice (ACS) and Bold As­so­ci­a­tion for Chil­dren with Spe­cial Needs Pe­nang (Bold Pe­nang).

“There were times when we desperately needed some­one to look af­ter Peter so that we could at­tend to an emer­gency sit­u­a­tion. But we just couldn’t get the help. So ei­ther my wife or I will have to stay with him. As my elder daugh­ter grew older, she took up

Respite care pro­vides chil­dren with a change of en­vi­ron­ment and an op­por­tu­nity to so­cialise with other chil­dren. the emer­gency carer’s role. Still, this is a heavy re­spon­si­bil­ity for a 19-year-old,” said Mr Lee.

“Some­times we re­ally need a break to recharge our­selves and to spend more time with our other chil­dren,” he added.

Ja­son also goes to Pe­man­car House ev­ery Satur­day morn­ing. When he first started two months ago, he cried when he saw his mother leav­ing. Now he hap­pily waves good­bye to her.

“I was so wor­ried on the first day. I felt guilty for leav­ing him so that I could take a break,” said Vera, Ja­son’s mother. “But now I feel so re­lieved to be able to have a nice meal and do a bit of shop­ping with my vis­it­ing mother, know­ing that Ja­son is safe in Pe­man­car House,” said Vera, a sin­gle mother.

There are many more par­ents out there who need a short break from their spe­cial needs chil­dren, but are not able to find it.

For most of us, go­ing an out­ing with friends, shop­ping for gro­ceries, or even at­tend­ing a wed­ding, may sound triv­ial. But to fam­i­lies with spe­cial needs chil­dren, es­pe­cially those with se­vere dis­abil­i­ties, and to sin­gle moth­ers like Vera, these are lux­u­ries that are hard to come by.

Car­ing for some­one can be a full-time job. When the task in­volves look­ing af­ter a spe­cial needs child, the re­spon­si­bil­ity can be over­whelm­ing and stress­ful for the care­giver.

The care­giver needs to take a break some­times. Some care­givers may feel guilty or ap­pre­hen­sive about tak­ing a break.

How­ever, if the care­giver has been pro­vid­ing care for too long with­out tak­ing a proper break, she or he may be­come ill, anx­ious or de­pressed. This can make life even more dif­fi­cult for the care­giver and the per­son un­der his or her care. It is no won­der why some chil­dren end up in res­i­den­tial in­sti­tu­tional care.

What these care­givers need is “respite care” or “short break care”. This con­cept of pro­vid­ing tem­po­rary re­lief to fam­i­lies car­ing for a child with a dis­abil­ity is fairly new in Malaysia.

Can respite care meet the needs of Malaysian fam­i­lies who have chil­dren with dis­abil­i­ties? Are Malaysians ready to take up the role of respite carer? To get some an­swers, a small sur­vey was con­ducted last De­cem­ber. Based on the fam­i­lies’ re­sponses, ACS and Bold Pe­nang jointly pi­loted the Pe­man­car House Respite Care Sup­port Cen­tre.

Re­cently in Au­gust, we were for­tu­nate to learn more about respite care from Luke and Rachel Bul­pitt, a cou­ple from Read­ing, Eng­land, who are reg­is­tered fos­ter car­ers and ap­proved respite car­ers for chil­dren with spe­cial needs.

Luke (who works four days a week as a so­lic­i­tor) and Rachel got in­volved in respite care when they were fos­ter par­ents for a baby boy named Eric who had mul­ti­ple dis­abil­i­ties from birth.

Eric re­quired spe­cial care such as feed­ing through a tube, fre­quent mu­cous and phlegm re­moval through suc­tion, and had to be fre­quently car­ried. The Bul­pitt’s fam­ily life was se­verely af­fected by car­ing for Eric. They were stressed out and hardly had time for their two daugh­ters. They reached out for respite care.

Hav­ing ex­pe­ri­enced the ben­e­fits, they de­cided to take on the role of pro­vid­ing respite to other fam­i­lies af­ter Eric passed away.

In Bri­tain, lo­cal coun­cils are legally re­quired to pro­vide some kind of respite care af­ter a sur­vey dis­cov­ered that this is the most needed ser­vice for fam­i­lies of chil­dren with dis­abil­i­ties. Respite care can be cen­tre-based like Pe­man­car House, in a respite carer’s home, or in the home of the per­son with dis­abil­ity. The Bul­pitt fam­ily runs their respite care mostly in their home but Rachel some­times pro­vides respite care in the home of a per­son who is de­pen­dent on an oxy­gen ma­chine.

From their ex­pe­ri­ence as user and care­giver, the Bul­pitt fam­ily shared with us the im­por­tance of hav­ing respite care. Respite care pro­vides the par­ents with a break that helps them to de-stress and to recharge their bat­ter­ies. As a re­sult, respite care helps to re­duce abuse, ne­glect, and/or aban­don­ing of a child with dis­abil­ity. It also pro­vides the par­ents with op­por­tu­ni­ties to have qual­ity time with their other chil­dren.

Last but not least, it pro­vides op­por­tu­ni­ties for chil­dren with dis­abil­i­ties to have a change of en­vi­ron­ment and to have so­cial in­ter­ac­tion. This is par­tic­u­larly im­por­tant for those who are home-bound or come from sin­gle par­ent fam­i­lies. n All names have been changed to safe­guard con­fi­den­tial­ity. Asia Com­mu­nity Ser­vice and Bold As­so­ci­a­tion for Chil­dren with Spe­cial Needs Pe­nang are NGOs ser­vic­ing chil­dren and young adults with spe­cial needs. To learn more about Pe­man­car House Respite Care ser­vice, call % 04-658 7857 /017-478 5193 or e-mail: respite pg@gmail.com.

One Voice is a monthly col­umn which serves as a plat­form for pro­fes­sion­als, par­ents and care­providers of chil­dren with learn­ing dif­fi­cul­ties. Feed­back on the col­umn can be sent to onevoice4ld@gmail. com. For en­quiries of ser­vices and sup­port groups, call Malaysian Care (% 03-9058 2102) or Dig­nity & Ser­vices (% 03-7725 5569).

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