Ukukhulisa Ingane Ene-Down Syndrome—Kuyinselele Kodwa Kunomvuzo

“Ngiyadabuka ukunitshela ukuthi ingane yenu ine-Down syndrome.” La mazwi kadokotela akushintsha ngokuphelele ukuphila kwabazali. UVíctor ongubaba uyakhumbula: “Kwaba sengathi ngiphupha kabi, futhi ngifuna ukuphaphama.”

KODWA kukhona nokuhle kulesi simo. U-Emily noBarbara, omama ababili abakhulisa izingane ezine-Down syndrome, bachaza lokho ababhekana nakho ngokuthi “kuwukushintshashintsha komzwelo okucindezelayo usuku ngalunye.”—Count Us In, Growing Up With Down Syndrome.

Iyini i-Down syndrome (DS)?a Ngamafuphi nje, i-DS inkinga yezakhi zofuzo umuntu azalwa nayo ephatha ingane eyodwa kwezingu-730 e-United States.b Izingane ezine-DS zinokulinganiselwa okushiyanayo kwamakhono okufunda nokukhuluma kuhlanganise nawokulawula ukunyakaza komzimba, kuye ngezinga lenkinga. Kanti futhi zithuthuka kancane ngokomzwelo, ebuhlotsheni bazo nabanye nangokukhalipha.

Le nkinga ilikhinyabeza kangakanani ikhono lokufunda lengane? UJason one-DS, uyachaza encwadini ethi Count Us In—Growing Up With Down Syndrome, angomunye wabalobi bayo: “Angicabangi ukuthi lokhu kuwukukhubazeka. Kuwukukhinyabezeka kwekhono lokufunda nokwenza izinto ngoba kukuthatha isikhathi eside ukufunda into. Akukubi kangako.” Kodwa, ingane ngayinye ene-DS iyahluka kwenye futhi inamakhono ayo. Empeleni, ezinye ziyakwazi ukufunda ngokwanele ukuba zibe ngamalungu avamile omphakathi futhi zibe nokuphila okwanelisayo.

Ayikho into engenziwa ukuvimbela ukuphazamiseka kwezakhi zofuzo—ngaphambi noma ngemva kokukhulelwa. I-DS ayibangelwa yiphutha lothile. Kodwa ibakhungathekisa kakhulu abazali. Yini abangayenza ukuze bazisize bona nengane yabo?

Ukwamukela Isimo Njengoba Sinjalo

Akulula ukwamukela ukuthi umntwana une-DS. Umama okuthiwa uLisa uyakhumbula, “Ngashaqeka kakhulu. Ngemva kokulalela incazelo kadokotela wezifo zabantwana, mina nomyeni wami sakhala. Angazi noma sasikhalela [indodakazi yethu] uJasmine, noma sasizikhalela thina. Cishe sasikhalela kokubili! Noma kunjalo, ngangilangazelela ukumgona ngimtshele ukuthi ngiyohlale ngimthanda, kungakhathaliseki ukuthi kwenzekani esikhathini esizayo.”

UVíctor uthi, “Kuningi engangikucabanga, njengokwesaba nokungamukelwa abanye. Sasicabanga ukuthi izinto zizoshintsha, abanye ngeke besathanda ukuzihlanganisa nathi. Eqinisweni, lena kwakuyimibono yobugovu eyayibangelwa ukungazi ukuthi kuzokwenzekani.”

Leyo mizwa yokudabuka nokungaqiniseki ivame ukuhlala isikhathi, noma ingase ibuye nje kungazelelwe. U-Elena uthi, “Ngangivame ukukhala ngenxa yenkinga kaSusana [indodakazi yethu]. Kodwa lapho eseneminyaka emine wathi, ‘Mama ungakhali. Akunandaba.’ Kusobala ukuthi wayengazi ukuthi ngikhalelani, kodwa ngaso leso sikhathi nganquma ukuyeka ukuzidabukela nokuhlale ngicabanga izinto ezidumazayo. Kusukela lapho ngiye ngagxila emizamweni yokumsiza ukuba athuthuke ngangokunokwenzeka.”

Ukusiza Ingane Ithuthuke

Yini ebaluleke kakhulu ekuqeqesheni ingane ngokuphumelelayo? Uchwepheshe wenhlangano ethile ye-DS usikisela lokhu, “Qala ngokuzithanda izingane! Konke okunye kuza kamuva.” UProfesa uSue Buckley uthi: “Okubaluleke kakhulu ngabantu abane-DS ukuthi bangabantu. Intuthuko yabo . . . ithonywa yindlela abaphathwa ngayo, imfundo nokubandakanywa kwabo ezintweni ezenziwayo, njengoba kunjalo nangabanye abantu.”

Phakathi neminyaka engamashumi amathathu edlule, ziye zathuthuka kakhulu izindlela zokusiza izingane ezine-DS ukuze zikwazi ukufunda. Iseluleko sezazi zezokwelapha kubazali siwukuba lezi zingane bazihilele kuzo zonke izinto ezenziwa umkhaya futhi bazisize emidlalweni, basheshe nokuzifaka ezinhlelweni ezikhethekile zokuzifundisa ukuze amakhono azo athuthuke. Izinhlelo ezinjalo okufanele ziqale ngokushesha ngemva kokuzalwa—zihlanganisa ukwelashwa ngokubhucungwa, ukuyifundisa indlela yokukhuluma, ukuyinaka kakhudlwana kuhlanganise nokuyisekela yona namanye amalungu omkhaya ngokomzwelo. “USusana besilokhu simphatha njengamanye amalungu omkhaya,” kusho uGonzalo, uyise. “Siye samhilela kuzo zonke izinto ezenziwa umkhaya. Siye samphatha futhi sameluleka ngendlela efanayo nodadewabo nomfowabo, sicabangela ukulinganiselwa kwakhe.”

Intuthuko ingase ihambe kancane. Abantwana abane-DS bangase baqede iminyaka emibili noma emithathu bengakakwazi ukukhuluma. Ukukhathazeka kwabo ngenxa yokungakwazi ukukhuluma kungase kubenze bakhale futhi babe nesififane. Noma kunjalo, abazali bangabafundisa “indlela yokukhuluma ngezimpawu.” Ngokwesibonelo, bangase basebenzise indlela elula yokukhuluma ngezimpawu, okuhambisana nokukhuluma ngezandla nangokukhomba izinto. Ngalezi zindlela, umntwana angakwazi ukusho izinto azidingayo njengokuthi ufuna “ukuphuza,” ufuna “impinda,” “uqedile,” ufuna “ukudla,” nokuthi ufuna “ukulala.” ULisa uthi: “Njengomkhaya, uJasmine sasimfundisa izimpawu ezimbili noma ezintathu ngesonto. Sasigxila kakhulu ekuphindaphindeni nasekukwenzeni kujabulise esimfundisa kona.”

Unyaka ngamunye ziningi izingane ezine-DS ezingena ezikoleni ezivamile futhi zihlanganyele ezintweni ezivamile nezingane zakubo nabangane. Kuyiqiniso ukuthi ukufunda kuthanda ukuba nzinyana kuzo, kodwa ukufunda nontanga yazo kubonakala kuye kwazisiza ezinye ukuba zizimele, ziphathane kahle nezinye futhi izinga lazo lokukhalipha lithuthuke.

Njengoba zithuthuka kancane, igebe phakathi kwezingane ezine-DS nontanga yazo liya livuleka njengoba zikhula. Noma kunjalo, abanye ochwepheshe batusa ukuba ziye esikoleni esiphakeme esivamile, kuye ngokuthi othisha nabazali bayavumelana yini, nokuthi usizo olwengeziwe lokuzifundisa luyatholakala yini. “Into eyaba yinhle kakhulu ngokuya kukaYolanda esikoleni esiphakene esivamile ukuthi waba yilungu elivamile lomphakathi,” kusho uyise, uFrancisco. “Kusukela ekuqaleni nje, wayedlala nezinye izingane, nazo zafunda ukumphatha ngendlela evamile nokwenza naye zonke izinto.”

Ukwaneliseka Kudlula Ukuzidela

Ukukhulisa ingane ene-DS akulula neze. Kudinga isikhathi esiningi, ukuzikhandla, ukuzinikela kuhlanganise nesineke nokulinganisela kulokho okulindele. “Kuningi okuhilelekile ekunakekeleni u-Ana,” kusho unina, uSoledad. “Kumelwe ufunde ukuba umama onesineke, umnakekeli nokuba umbhucungi, ngaphandle nje kokwenza imisebenzi evamile yasekhaya.”

Kodwa, imikhaya eminingi imi kwelokuthi ukuba nengane ene-DS kuyenze yasondelana kakhulu. Ezinye izingane ekhaya zifunda ukungabi nobugovu nokuba nozwela, futhi zigcina seziyiqonda kangcono ingane yakubo. “Ukubekezela kwethu kwavuzwa ngokucebile, futhi njengoba isikhathi sihamba, siyayibona imiphumela,” kusho u-Antonio noMaría. “UMarta indodakazi yethu endala, ubelokhu esisiza ekunakekeleni uSara [one-DS], futhi umthanda ngempela. Lokhu kwamsiza uMarta waba nesifiso sokusiza ezinye izingane ezikhubazekile ngandlela-thile.”

URosa onodadewabo omdala one-DS, uyachaza: “USusana ungenze ngaba nenjabulo enkulu futhi uye wangibonisa uthando olukhulu. Ungenze ngaba nozwela ngabantu abakhubazekile.” U-Elena, ongumama kaSusana uyanezela: “Uyawazisa umusa. Lapho eboniswa uthando, ulubuyisa seluphindwe kabili.”

U-Emily noBarbara—omama ababili abachashunwe ekuqaleni kwalesi sihloko—bathola ukuthi “abantu abane-Down syndrome bayaqhubeka bekhula futhi befunda kukho konke ukuphila kwabo, kanti bayazuza nasemathubeni avelayo nasezintweni ababhekana nazo.” UYolanda one-DS, unalesi seluleko esilula kubazali abanengane ene-Down syndrome: “Yithandeni kakhulu. Yinakekeleni njengoba nje abazali bami beye banginakekela, futhi ningakhohlwa ukuba nesineke.”

[Imibhalo yaphansi]

[Ibhokisi/Izithombe emakhasini 20, 21]

Ingabe Abantu Abane-Down Syndrome Bayakujabulela Ukuphila?

Lokho Abakushoyo. . .

“Ngiyawuthanda umsebenzi wami esikhungweni sokuqeqeshwa, ungenza ngizizwe kukhona engikufezayo.”—UManuel, oneminyaka engu-39

“Ngikuthanda kakhulu ukudla i-paella ephekwe ngumama nokushumayela ngeBhayibheli nobaba.”—USamuel, oneminyaka engu-35

“Ngiyathanda ukuya esikoleni ngoba ngifuna ukufunda futhi othisha bangithanda kakhulu.”—USara, oneminyaka engu-14

“Ungakhathazeki, ziphathe kahle, udlale nabo bonke futhi uyofunda kancane kancane.”—UYolanda, oneminyaka engu-30

“Ngiyakuthanda ukufunda, ukulalela umculo nokuhlala nabangane.”—USusana, oneminyaka engu-33

“Ngifuna ukukhula. Ngifuna ukujabulela ukuphila.”—UJasmine, oneminyaka engu-7

[Ibhokisi/Isithombe ekhasini 22]

Amasu Okuthuthukisa Ukukhulumisana

Nakhu ukusikisela uma usebenzelana nabantu abane-Down syndrome:

● Babheke ngqo emehlweni.

● Sebenzisa ulimi olulula nemisho emifushane.

● Uma ukhuluma sebenzisa nobuso, ukunyakaza komzimba nezimpawu ezichazayo.

● Banike isikhathi sokuba bakuqonde okushoyo nesokuphendula.

● Lalelisisa, futhi ubacele baphinde okushilo.