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Kulera Ana Obadwa ndi Matenda Ozerezeka

Kulera Ana Obadwa ndi Matenda Ozerezeka

 Kulera Ana Obadwa ndi Matenda Ozerezeka

“Pepani, mwana wanu ali ndi vuto. Anabadwa ndi matenda ozerezeka.” Makolo amakhudzidwa kwambiri akamva mawu ngati amenewa kuchokera kwa dokotala. Bambo wina, dzina lake Víctor, amene mwana wake anapezeka ndi vuto limeneli, anati: “Sindinakhulupirire ngakhale pang’ono. Ndinkangoona ngati ndikulota.”

KULERA ana amene anabadwa ndi vuto lozerezeka kumachititsa kuti nthawi zina makolo azikhumudwa. Mwachitsanzo, Emily komanso Barbara, omwe ali ndi ana amene anabadwa ndi matendawa anati: “Tsiku lililonse munthu umamva mosiyanasiyana. Nthawi zina umasangalala kuti mwanayo wayamba kuganiza bwinobwino koma pasanapite nthawi yaitali umakhumudwanso ukaona kuti mwanayo wayambiranso kuchita zinthu zozerezeka.”—Count Us In—Growing Up With Down Syndrome.

Kodi matenda ozerezeka ndi otani? * Amenewa ndi matenda ochita kubadwa nawo amene ana amatengera kwa makolo. Akuti ku United States, mwana mmodzi pa ana 730 alionse amabadwa ndi matendawa. Ana odwala matendawa amavutika kuphunzira zinthu, kulankhula komanso kuchita zinthu zina zosiyanasiyana. Ngakhale akule amachitabe zinthu ngati ana.

Kodi ndiye kuti mwana amene akudwala matendawa sangatheretu kuphunzira zinthu? Jason, amenenso ali ndi matendawa, analemba kuti: “Sikuti munthu amene ali ndi matendawa sangatheretu kuphunzira. Vuto limangokhala lakuti amachedwa kuphunzira zinthu.” (Count Us In—Growing Up With Down Syndrome) Komabe mwana aliyense amene amadwala matendawa ndi wosiyana ndi mnzake ndipo amakhala ndi luso lakelake. Ndipotu ena amatha kuphunzira bwinobwino n’kudzakhala anthu odalirika komanso osangalala.

Palibe chilichonse chimene makolo angachite kuti asabereke mwana wozerezeka chifukwa vutoli limakhala la kumtundu. Komabe, iwo amakhudzidwa kwambiri akabereka mwana wodwala matendawa. Kodi n’chiyani chimene angachite kuti athandize mwana wawoyo komanso kuti iwowo asamakhumudwe kwambiri?

Kuvomereza Kuti Zachitika

Zimakhala zovuta kwambiri kuti makolo afike povomereza kuti mwana wawo ali ndi matenda amenewa. Mwachitsanzo, mayi wina dzina lake  Lisa ananena kuti: “Sitinamvetse ngakhale pang’ono. Dokotala atangomaliza kutifotokozera zoti mwana wathu Jasmine ali ndi matendawa, ine ndi mwamuna wanga, tinagwetsa misozi. Sindikudziwa bwinobwino kuti kodi tinkalilira mwana wathuyo kapena tinkadzilirira tokha. Mwina zinali zonse ziwiri. Komabe, ndinkafunitsitsa kuti ndimukumbatire n’kumuuza kuti mulimonse mmene zingakhalire, ndipitiriza kumukonda.”

Víctor ananena kuti: “Nthawi yomweyo ndinayamba kuganiza zinthu zambirimbiri. Ndinkaopa kuti anthu azitisala. Tinkaona kuti moyo wathu wasokonekera ndipo anthu ena asiya kucheza nafe. Koma ndikuona kuti ndinkalakwitsa kuganiza zinthu zimenezi.”

Maganizo ngati amenewa satherapo ndipo angamakubwerereni mosayembekezereka. Elena ananena kuti: “Nthawi zambiri ndinkalira ndikaona mmene mwana wathu Susana akuchitira zinthu. Koma ali ndi zaka zinayi anandiuza kuti, ‘Mayi musalire, tontholani.’ Iye sankadziwa ngakhale pang’ono chifukwa chake ndinkalira. Koma kuchokera nthawi imeneyi ndinasiya kukhala wokhumudwa komanso kuganizira zinthu zosathandiza. Kenako maganizo anga onse anali pa kuphunzitsa ndi kuthandiza mwanayo kuti azichita zinthu bwinobwino.”

Kuthandiza Mwana Amene Ali ndi Matendawa

Kodi kholo lingatani kuti liphunzitse mwana amene ali ndi matendawa? Akatswiri ena odziwa za matendawa ananena kuti: “Choyamba muyenera kumukonda kwambiri.” Pulofesa Sue Buckley ananena kuti: “Muzikumbukira kuti ana amene amadwala matendawa nawonso ndi anthu. Mofanana ndi anthu ena onse, iwo amachita bwino zinthu ngati akusamalidwa, kuphunzitsidwa komanso ngati akupatsidwa mpata wocheza ndi anthu ena.”

M’zaka 30 zapitazi, akatswiri apeza njira zosiyanasiyana zophunzitsira ana amene ali ndi matendawa.  Madokotala amalangiza makolo amene ali ndi ana oterewa kuti azichita nawo zinthu zonse zimene amachita pabanja pawo komanso kuwathandiza kuchita masewera osiyanasiyana. Makolo amalangizidwanso kuti aziphunzitsa anawo mwapadera. Maphunziro amenewa afunikira kuyamba mwanayo akadali wakhanda. Maphunzirowa amaphatikizapo kuthandiza mwanayo kuyenda, kugwiritsa ntchito manja ake, kulankhula, ndi chisamaliro china chapadera. A Gonzalo omwe ndi bambo ake a Susana ananena kuti: “Sitimusala ngakhale pang’ono ndipo timachita naye chilichonse. Timachita naye zinthu ngati mmene timachitira ndi mchemwali komanso mchimwene wake, ngakhale kuti nthawi zina timaganizira za zimene Susana sangakwanitse kuchita.”

Nthawi zambiri ana amene ali ndi vuto limeneli amaphunzira zinthu pang’onopang’ono. Ena amatha kufika zaka ziwiri kapena zitatu asanayambe kulankhula. Chifukwa cholephera kulankhula, nthawi zina ana oterewa amangolira kapena sachedwa kupsa mtima. Komabe makolo angamayesetse kuwaphunzitsa kulankhula. Angamagwiritse ntchito zizindikiro za manja komanso nkhope pothandiza mwanayo kulankhula. Mwanjira imeneyi makolo akhoza kumadziwa mosavuta zimene mwanayo akufuna. Mwachitsanzo angadziwe kuti akunena zinthu zotsatirazi: “Madzi,” “ena,” “ndamaliza,” “ndidye,” “ndigone.” Lisa ananena kuti: “Pabanja pathu tinkaphunzitsa Jasmine zizindikiro ziwiri kapena zitatu mlungu uliwonse. Tinkayesetsa kuti azisangalala ndi zimene tikumuphunzitsazo komanso tinkazibwerezabwereza.”

Chaka chilichonse ana ambiri odwala matenda amenewa amakayamba sukulu zimene ana ena onse amaphunzira ndipo amachita nawo masewera amene ana enawo amachita. Ngakhale kuti ana amenewa amaphunzira zinthu pang’onopang’ono, kuphunzira limodzi ndi ana ena a msinkhu wawo kumawathandiza kuti azitha kuchita zinthu zina  pawokha, kucheza ndi anthu ena komanso kuti akhale anzeru.

Popeza kuti ana odwala matendawa amaphunzira zinthu pang’onopang’ono, zaka zikamadutsa kusiyana kwa anawa ndi ana ena kumaonekera kwambiri. Ngakhale zili choncho, akatswiri ena amaona kuti ndi bwino kuti ana amenewa azipita kusukulu za sekondale zimene ana ena onse amapita malinga ngati makolo atagwirizana ndi aphunzitsi komanso ngati pasukulupo pali zipangizo zoyenerera zophunzitsira. A Francisco omwe ali ndi mwana wodwala matendawa, dzina lake Yolanda, anati: “Ubwino wakuti Yolanda azipita kusukulu ya sekondale pamodzi ndi ana ena onse ndi wakuti amadziona kuti si wosiyana ndi ana ena onse. Kungoyambira pachiyambi, ankacheza ndi ana anzake ndipo anzakewo sankamusala chifukwa ankachita naye zinthu zina zonse bwinobwino.”

Khama Limapindula

Kulera ana amene ali ndi matenda ozerezeka sikophweka. Kuchita zimenezi kumafuna nthawi, khama, kudzipereka, komanso kuleza mtima. A Soledad omwe ali ndi mwana wodwala matendawa, dzina lake Ana, anati: “Ndimaona kuti ndili ndi ntchito yaikulu yosamalira mwana wanga, Ana. Ndimafunika kumusonyeza chikondi komanso kukhala woleza mtima.”

Komabe, anthu ambiri aona kuti kukhala ndi ana oterewa pabanja pawo kwawathandiza kuti onse m’banjamo azigwirizana. Ana ena amaphunzira kukhala oleza mtima, okoma mtima komanso amamumvetsa m’bale wawoyo. Antonio ndi María ananena kuti: “Taona kuti tadalitsidwa kwambiri chifukwa chokhala anthu opirira. Marta mwana wathu wamkulu wakhala akutithandiza kwambiri kusamalira Sara [yemwe ali ndi matenda ozerezeka], ndipo amasonyeza kuti amamukonda kwambiri. Zimenezi zachititsa kuti Marta azithandizanso ana ena amene ali ndi vuto limeneli.”

Rosa, yemwe mkulu wake, dzina lake Susana, ali ndi matendawa, anafotokoza kuti: “Susana wandithandiza kwambiri kuti ndizikhala wosangalala ndipo amandikonda kwambiri. Wandithandizanso kuti ndiziwamvetsa anthu amene ali ndi matenda ngati amenewa.” Mayi ake a Susana, a Elena, ananenanso kuti: “Susana amasangalala anthu akamasonyeza kuti amamukonda. Anthu ena akamuchitira zabwino, iyenso amawachitira zabwino kuposa pamenepo.”

Emily ndi Barbara, omwe tinawatchula kumayambiriro kwa nkhani ino, anati: “Anthu amene ali ndi matenda ozerezeka amapitiriza kuphunzira zinthu moyo wawo wonse ndipo amafuna kuti pakakhala mwayi wochita zinazake zaphindu achite nawo.” Yolanda, yemwenso ali ndi matendawa, akulangiza makolo amene ali ndi ana oterewa, kuti: “Muziwakonda kwambiri. Muziwasamalira ngati mmene makolo anga amandisamalirira ndipo muzikumbukira nthawi zonse kuti mufunikira kukhala oleza mtima.”

[Mawu a M’munsi]

^ ndime 4 M’chingelezi matendawa amatchedwa kuti Down Syndrome chifukwa chakuti munthu woyamba kulemba nkhani yolondola kwambiri yokhudza matendawa, anali John Langdon Down. Munthuyu anali dokotala wa ku England ndipo analemba za matendawa m’chaka cha 1866. M’chaka cha 1959, wasayansi wina wa ku France, dzina lake Jérôme Lejeune, anatulukira kuti ana odwala matendawa amakhala ndi ma chromosome 47 m’malo mwa 46. Kenako ofufuza anapeza kuti chromosome yowonjezerayo inali yofanana ndendende ndi chromosome nambala 21.

[Bokosi/Zithunzi patsamba 20, 21]

Kodi Anthu Amene Ali ndi Matenda Ozerezeka Amasangalala ndi Moyo?

Zimene Iwo Amanena. . .

“Ndimasangalala kugwira ntchito yamanja, chifukwa imandithandiza kudziona kuti ndine wofunika.”​—Anatero Manuel, wazaka 39

“Ndimasangalala kwambiri kudya chakudya chokoma chimene mayi anga amakonda kundiphikira komanso ndimakonda kulalikira ndi bambo anga.”​—Anatero Samuel, wazaka 35

“Ndimakonda kupita kusukulu chifukwa ndimafuna kuphunzira komanso aphunzitsi anga amandikonda kwambiri.”​—Anatero Sara, wazaka 14

“Musamadandaule, mukhale ndi khalidwe labwino komanso muzicheza ndi munthu wina aliyense, ndipo pang’ono ndi pang’ono muziphunzira zinthu zambiri.”​—Anatero Yolanda, wazaka 30

“Ndimakonda kuwerenga, kumvera nyimbo, komanso kucheza ndi anzanga.”​—Anatero Susana, wazaka 33

“Ndimafuna kukula ndiponso kukhala ndi moyo wosangalala.”​—Anatero Jasmine, wazaka 7

[Bokosi/Chithunzi patsamba 22]

Zimene Mungachite Kuti Muzilankhulana Nawo Mosavuta

Malangizo otsatirawa angakuthandizeni kuti muzilankhulana ndi anthu odwala matendawa mosavuta.

● Mukamalankhula nawo muzionetsetsa kuti mukuyang’anana maso ndi maso.

● Muzilankhula mawu osavuta komanso afupiafupi.

● Polankhulana nawo muzigwiritsanso ntchito nkhope, manja ndi zizindikiro zina.

● Muziwapatsa mpata womvetsera zimene mukunena komanso mpata wokuyankhani.

● Muzimvetsera mwatcheru komanso muziwapempha kuti abwereze zimene mwanena.