Ukukhulisa Izingane Ezinezidingo Ezikhethekile

NGUMLOBELI WE-PHAPHAMA! EFINLAND

UMarkus oneminyaka engu-20 (kwesobunxele) akakwazi ukudla, ukuphuza, noma ukugeza ngaphandle kosizo. Akalali kahle futhi udinga ukunakekelwa ubusuku bonke. Njengoba elimala njalo, uhlale edinga usizo lokuqala. Kodwa abazali bakhe bamthanda kakhulu. Bayamthanda ngoba umnene, unomusa futhi unothando. Bayaziqhenya ngendodana yabo nakuba ikhubazekile.

I-WORLD HEALTH ORGANIZATION ilinganisela ukuthi cishe amaphesenti amathathu abantu emhlabeni banokuphazamiseka okuthile kwengqondo. Ukuphazamiseka kwengqondo kungabangelwa izinkinga zofuzo, ukulimala lapho umuntu ezalwa, ukungenwa yizifo zobuchopho esemncane, ukungondleki kahle, kuhlanganise nokuchayeka ezidakamizweni, otshwaleni, noma kumakhemikhali. Ezimweni eziningi, imbangela ayaziwa. Kunjani ukuba umzali wengane enezidingo ezikhethekile? Bangakhuthazwa kanjani abazali abanjalo?

Lapho Nitshelwa Izindaba Ezibuhlungu

Inselele iqala lapho abazali bethola ukuthi ingane yabo ikhubazekile engqondweni. “Lapho mina nomyeni wami sizwa ukuthi indodakazi yethu ine-Down syndrome, kwaba sengathi indlu yethu idilikele phezu kwethu yasigqiba,” kukhumbula uSirkka. Unina kaMarkus, u-Anne, uthi: “Lapho ngitshelwa ukuthi wayezokhubazeka ingqondo, ngazibuza ukuthi abanye abantu babezombheka kanjani. Kodwa ngokushesha kwadlula lokho ngabe sengicabanga ngezidingo zakhe nalokho engingamenzela khona.” U-Irmgard wasabela ngendlela efanayo. Uthi: “Lapho odokotela besitshela ngokukhubazeka kwendodakazi yethu u-Eunike, engacabanga ngakho nje ukuthi ngingayisiza kanjani intombazanyana yami.” Ngemva kokutshelwa ngokukhubazeka kwengane, yini abangayenza abazali abanjengoSirkka, u-Anne no-Irmgard?

“Enye yezinto zokuqala ongayenza,” kweluleka i-U.S. National Dissemination Center for Children With Disabilities, “ukuqoqa ulwazi—ulwazi mayelana nokukhubazeka kwengane yakho, usizo olutholakalayo, nezinto ezikhethekile ongazenza ukuze uyisize ikhule ngokugcwele ngangokunokwenzeka.” Ukusebenzisa lolu lwazi kungakwenza uwazi kahle umsebenzi wakho wokuyinakekela. Kunjengokubheka indlela osuyihambile ebalazweni nezindawo osuzibonile bese ukubhala phansi.

Inhlansi Yethemba

Naphezu kwezinselele, ingaba khona inhlansi yethemba nakuba ingane ikhubazekile engqondweni. Kanjani?

Okokuqala, kungabaduduza abazali ukwazi ukuthi iningi lezingane ezinjalo alibuzwa ubuhlungu. Encwadini yakhe ethi The Retarded Child, uDkt. Robert Isaacson uyabhala: “Eziningi ziyakwazi ukujabula, ukujabulela ukuba nabanye abantu, umculo, imidlalo ethile, ukudla okumnandi nabangane.” Nakuba zingase zifeze okuncane futhi zilinganiselwe kunezingane ezivamile, ngokuvamile ziyajabula kunazo.

Okwesibili, abazali bangaziqhenya ngempumelelo ingane yabo eyifinyelela ngokuzikhandla. Noma yikuphi okusha ekufundayo kufana nokukhuphuka intaba, futhi ukubona leyo ntuthuko kuyajabulisa kubazali nasenganeni. Ngokwesibonelo, uBryan unezimila engqondweni nasezithweni zangaphakathi (tuberous sclerosis), uyaquleka futhi akakhulumi. Nakuba ehlakaniphile, akakwazi ukukhuluma futhi akakwazi ukulawula izandla zakhe. Kodwa, kancane kancane uye wafunda ukuphuza ngenkomishi engagcwele kodwa angakuchithi okuphakathi. Ukukwazi ukulawula izandla zakhe ngale ndlela kwenza uBryan ajabulele ukuphuza isiphuzo sakhe asithanda kakhulu—ubisi—ngaphandle kosizo.

Uyise nonina kaBryan babona le ntuthuko njengendlela encane nje akunqoba ngayo ukukhubazeka kwakhe. Unina uLaurie uthi: “Indodana yethu siyibheka njengesihlahla esiqinile ehlathini. Nakuba lesi sihlahla singakhuli ngokushesha njengezinye, sikhiqiza amapulangwe ekhethelo. Ngokufanayo, izingane ezikhubazekile nazo zikhula kancane. Kodwa kubazali bazo ziba njenge-oki nomkhangala wezinga eliphakeme.”

Okwesithathu, abazali abaningi bayajabula ngenxa yezingane zabo ezinothando. U-Irmgard uthi: “U-Eunike uthanda ukusheshe alale, futhi uye aqabule ilungu ngalinye lomkhaya ngaphambi kokuyolala. Uma elala ngaphambi kokuba sifike, ubhala incwadi encane axolise ngokuthi akasilindanga. Wenezela nokuthi uyasithanda nokuthi ulangazelela ukusibona ekuseni.”

UMarkus akakwazi ukukhuluma, kodwa wazikhandla wafunda izimpawu ezimbalwa zolimi lwezandla zokutshela abazali bakhe ukuthi uyabathanda. Abazali bakaTia, ongakhuli kahle, baveza imizwa yabo ngale ndlela: “Wenza ukuphila kwethu kuchichime uthando, imfudumalo, futhi uyasanga asiqabule.” Kusobala ukuthi kudingeka ukuba abazali bazo zonke izingane ezinjalo bazibonise uthando kakhulu—ngamazwi nangezenzo.

Okwesine, abazali abangamaKristu baneliseka ngokujulile lapho ingane yabo iveza ukholo lwayo kuNkulunkulu. Isibonelo salokhu uJuha. Emngcwabeni kayise, wamangaza wonke umuntu lapho ecela ukuthandaza. Emthandazweni wakhe omfushane, uJuha waveza ukholo lwakhe ekutheni uyise usenkumbulweni kaNkulunkulu nokuthi uzomvusa ngesikhathi esifanele. Wabe esecela uNkulunkulu ukuba asize amalungu omkhaya wakubo, wabala ngalinye ngegama.

Ukuthembela kuka-Eunike kuNkulunkulu kuyabajabulisa abazali bakhe. U-Eunike akakuqondi konke akufundayo. Ngokwesibonelo, wazi abantu abaningi eBhayibhelini, kodwa akakwazi ukubahlobanisa nezenzakalo zeBhayibheli—kunjengezingxenye zemfumbe engahlangani. Noma kunjalo, uyaqonda ukuthi ngelinye ilanga uNkulunkulu uMninimandla onke uyoziqeda zonke izinkinga emhlabeni. Ubheke phambili ekuphileni ezweni elisha likaNkulunkulu elithenjisiwe, lapho eyoba nengqondo ephile ngokuphelele.

Ukuzikhuthaza Ukuba Zizenzele Izinto

Izingane ezikhubazeke engqondweni azihlali ziyizingane—ziyakhula zibe abantu abadala abakhubazekile. Ngakho-ke, abazali benza kahle ngokusiza izingane zabo ezinezidingo ezikhethekile ukuba zinganciki kakhulu kubantu kunokuba kufanele. U-Anne, unina kaMarkus, uthi: “Kwakulula futhi kushesha ukwenzela uMarkus yonke into. Kodwa senza konke okusemandleni ukuze simsize azenzele lokho ayengase akwazi ukuzenzela kona.” Unina ka-Eunike uyanezela: “U-Eunike unezimfanelo eziningi ezinhle, kodwa unenkani. Ukuze simenze enze okuthile angafuni ukukwenza, kufanele simncenge ngokumkhumbuza ngesifiso sakhe sokusijabulisa. Noma esevumile ukwenza into ethile, kufanele simlandelele simkhuthaze aze aqede.”

Unina kaBryan, uLaurie, uhlale efuna izindlela zokwenza ukuphila kukaBryan kwanelise. Esikhathini esiyiminyaka emithathu, uLaurie nomyeni wakhe baye basiza uBryan ukuba afunde ukubhala ngomshini. Manje uBryan uthumelela abangane nezihlobo ama-e-mail, okumanelisa kakhulu. Kodwa udinga othile ozosekela isihlakala sakhe lapho ebhala. Abazali bakhe bayamsiza ukuze afinyelele eqophelweni lapho eyodinga ukusekelwa endololwaneni nje kuphela. Bayazi ukuthi uma sebesekela indololwane nje kuphela kuyosho ukuthi usezimele kakhudlwana.

Nokho, abazali akufanele balindele okukhulu noma baphoqelele ingane ukuba yenze okungaphezu kwamandla. Ingane ngayinye inekhono layo. Incwadi ethi The Special Child iyasikisela: “Kuhle ukuba abazali bazame ukulinganisela phakathi kokukhuthaza ukuzimela nokunikeza usizo olwanele ukuze kugwenywe ukukhungatheka.”

Umthombo Wosizo Omkhulu Kunayo Yonke

Bonke abazali bezingane ezikhubazekile badinga ukubekezela nokukhuthazela. Njengoba izinkinga zinqwabelana, abazali abaningi balahla ithemba ngezinye izikhathi. Ukukhathala kuvame ukubathena amandla. Bakhala izinyembezi, futhi ngezinye izikhathi baqale ukuzidabukela. Yini engenziwa?

Abazali bangacela usizo kuNkulunkulu, ‘uMuzwi womthandazo.’ (IHubo 65:2) Unikeza isibindi, ithemba namandla okukhuthazela. (1 IziKronike 29:12; IHubo 27:14) Ududuza izinhliziyo zethu ezidabukile, futhi ufuna ukuba ‘sijabule ethembeni’ elinikezwa yiBhayibheli. (Roma 12:12; 15:4, 5; 2 Korinte 1:3, 4) Abazali abesaba uNkulunkulu bangaqiniseka ukuthi esikhathini esizayo, lapho ‘izimpumputhe sezibona, izithulu zizwa, izinyonga zihamba, nezimungulu zimemeza ngenjabulo,’ ingane yabo eyigugu nayo iyojabulela ingqondo nomzimba ophelele.—Isaya 35:5, 6; IHubo 103:2, 3.

LOKHO ABAZALI ABANGAKWENZA

◼ Fundani ngokukhubazeka kwengane yenu.

◼ Zamani ukulondoloza isimo sengqondo esihle.

◼ Sizani ingane yenu ukuba ikwazi ukuzimela ngangokusemandleni ayo.

◼ Celani isibindi, ithemba namandla kuNkulunkulu.

LOKHO ABANYE ABANGAKWENZA

◼ Khuluma into enengqondo nengane, ungayenzi umuntu ongahlakaniphile, futhi yiba qotho.

◼ Khuluma nabazali ngengane yabo futhi ubancome.

◼ Yiba nozwela futhi ucabangele imizwa yabo.

◼ Hlanganyela ezintweni ezithile nabazali nemikhaya enezingane ezinezidingo ezikhethekile.

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Indlela Abanye Abangasiza Ngayo

Njengoba izibukeli zibabaza ukukhuthazela kwabagijimi bebanga elide, ungase umangale lapho ubona ukukhuthazela kwabazali abanakekela ingane ekhubazekile—usuku lonke, isonto lonke. Ngokuvamile izibukeli ezimi eceleni komgwaqo zinika abagijimi amanzi ukuze bakwazi ukuqhubeka begijima. Ungabenza yini baqabuleke abazali ababhekene nomsebenzi wokuphila konke wokunakekela ingane enezidingo ezikhethekile?

Enye indlela ongasiza ngayo kungaba ukuxoxa nendodana noma nendodakazi yabo. Kungase kube nzima ekuqaleni, ngoba ingane ingase ingasabeli nhlobo noma ukusabela kube kuncane. Nokho, khumbula ukuthi iningi lalezi zingane liyathanda ukulalela futhi lingase licabangisise ngalokho okushoyo. Kwezinye izimo izingqondo zazo zifana nenguzunga yeqhwa efihleke ngaphansi kwamanzi, nobuso bazo bungase bungayibonisi imizwa yazo ejulile.a

UDkt. Annikki Koistinen, wezifo zezinzwa zezingane, usikisela indlela ongakwenza kube lula ngayo ukuxoxa: “Ungase uqale uxoxe ngomkhaya wakubo noma ngezinto ezizilibazisa ngazo. Khuluma nazo ngokobudala bazo, hhayi njengokungathi ukhuluma nomuntu omncane kunazo. Xoxa ngendaba eyodwa ngesikhathi, usebenzise imisho emifushane. Zinike isikhathi sokucabanga ngalokho okushoyo.”

Nabazali bayakudinga ukuxoxa nawe. Uyozwelana nabo kangcono lapho sewuzazi izinselele ezingokomzwelo ababhekana nazo. Ngokwesibonelo, unina kaMarkus, u-Anne, ufisa ukuyazi kangcono indodana yakhe ayithandayo. Kumphatha kabi ukuthi ayikwazi ukukhuluma naye imtshele ukuthi icabangani. Ukhathazwa nawukuthi angase afe ngaphambi kwendodana yakhe, isale ingenanina.

Kungakhathaliseki ukuthi abazali bazidela kangakanani ekunakekeleni ingane yabo ekhubazeke engqondweni, ngokuvamile baba nomuzwa wokuthi kufanele ngabe benza okwengeziwe. Unina kaBryan, uLaurie, uyazisola ngawo wonke amaphutha awenzayo lapho enakekela indodana yakhe. Uzizwa enecala nangokuthi akakwazi ukuzinakekela kahle nezinye izingane zakhe. Isithakazelo sakho nenhlonipho ngabanjalo nemizwa yabo, kubenza babe nesithunzi futhi kubasekele bona nezingane zabo. Kulokhu u-Irmgard uthi: “Ngiyakujabulela ukuxoxa ngendodakazi yami. Ngiyabathanda labo abakulungele ukuhlanganyela nami izikhathi ezijabulisayo nezibuhlungu zokuphila kwami no-Eunike.”

Kunezinye izindlela eziningi—ezinkulu nezincane—ongasiza ngazo. Mhlawumbe ungamemela abazali nengane yabo kwakho noma ubacele bahlanganyele nomkhaya wakho ekwenzeni okuthile. Ungakwazi nokuchitha amahora ambalwa nengane lapho abazali besaphumule.

[Umbhalo waphansi]

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Ukubonisa ukukhathalela okuqotho kwenza bazizwe benesithunzi abazali nengane

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Njengo-Eunike, izingane ezikhubazekile engqondweni ziyaqhubeka zidinga uthando njengoba zikhula

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ULaurie uye wasiza indodana yakhe, uBryan, ukuba ifunde ukubhala ngomshini, okuyikhuthaza ukuba izimele