Ingxenye yesizathu sokuthi ngiqale ukubhuloga futhi ukuthi ngifuna ukuqwashisa ngezidingo ezikhethekile zezingane engingakwazi. Njengomama oziqhenyayo we-Down syndrome kanye ne-Autism, ngifuna ukufundisa umphakathi ngezindlela eziningi ngangokunokwenzeka. Namuhla ngizizwe ngizogxila kwezinye izilwane ezifuywayo abazali abanazo, ikakhulukazi izinto abantu abazisho kithi esikhathini esidlule.
Enye yezilwane ezifuywayo ezinkulu kakhulu eziwumama kaJoey ngumuntu othi, "Abantu abane-Down syndrome bahlala bejabule kakhulu." Ngikholwe uma ngithi, lokhu akunjalo neze. Chitha imizuzu emibili noJoey lapho ekudokotela, lapho imuvi ayintandokazi yakhe isiphelile futhi kungekho muntu ozoshintsha isiteshi, noma lapho egcwele izinzwa. Umngane wami omncane angaba nokucasuka okukodwa! Futhi okufanayo uya imizwa yakhe elimala; ayikho into engiphula inhliziyo njengokubona umuntu engamnaki ngamabomu uma ezama ukumnaka. Iqiniso liwukuthi abantu abane-Down syndrome bahlangabezana nezinhlobonhlobo zemizwa enjengosizi, intukuthelo nenjabulo, njengawo wonke umuntu.
Lapho ngikhulelwe uJoey futhi esanda kuzalwa, ngangithi abanye abantu bathi, “Ngiyaxolisa,” kuyilapho engangikufuna ngempela ukuzwa ukuthi, “Halala!” noma “Muhle.” Ungangizwa kabi, benginabantu abasihalaliselayo, kodwa kwesinye isikhathi besiba nokungaboni ngaso linye.
Ngaze ngaba nomngane womndeni (manje owake washada) wathi, “Oh bewazi (okusho ukuthi ngisakhulelwe), kodwa awenzanga lutho ngakho?” Wayefuna ngenzeni, ngikhiphe isisu?! Lokhu cishe into embi kunazo zonke engake ngasho kimi njengomama kaJoey. Kwaba buhlungu futhi kusebuhlungu nanamuhla. Siyabonga ukuthi lowo muntu akasekho emndenini wethu.
- “UNkulunkulu unikeza abantu abakhethekile kuphela abantwana abakhethekile” noma “UNkulunkulu ukunika kuphela lokho ongakwazi ukukuphatha.” Lokhu kwakuvela komama abaningi, kuhlanganise nami.
- “Indodana yakho ikhubazekile ngokomqondo.” Cha, indodana yami ine-Down syndrome… enye evela kimi.
- “Oh, akabukeki sengathi une-Down syndrome.” Kusuka kimi noPatti.
- “Baqinisekile?” noma “Bazi kanjani?” lapho sixoxa ngezifo ezihlukahlukene izingane zethu ezinazo. UKimberly noJennifer bobabili basho lokhu!
- Abantu bathe kuLindsey, mayelana nokuthi indodana yakhe isesigabeni, “Kahle-kahle ibukeka 'ijwayelekile' pho kungani ingakwazi ukwenza 'ejwayelekile'? Ngokujulile, yini evamile? Ngoba ungumuntu ojwayelekile futhi ngeke ngimshintshe kunoma ubani!”
- UKim uthi, “Kuthiwani, 'Ubukeka sengathi une-Down syndrome encane nje.'” Lesi futhi singenza ngibe nesibindi, kufanele ngengeze...
- “Uzophuma kukho, akunjalo?” Kusho uJennifer lapho exoxa nge-autism.
- UPat uthi, “Abantu bathi, 'Ubukeka ejwayeleke ngokuphelele. Kwenzenjani ngaye?' Umndeni usola mina nodokotela ngokungazenzi kahle izinto. Abantu bathi, 'Konke kwenzeka ngesizathu,' futhi leyo yimbi kakhulu. Abantu babuza imibuzo yezokwelapha enemininingwane engeyona eyebhizinisi labo futhi banikeza izimpendulo ezilula ezinkingeni zendodakazi yami. Ngilahlekelwe umndeni nabangane ngoba abantu abaqondi nje ukuthi kunjani ukuhlala nokuphuma esibhedlela.”
- “O, myeke abe ingane! Ukungcola okuncane ngeke kumlimaze.” Indodana ka-Katie ine-Cystic Fibrosis, futhi ukungcola okuncane INGAYIlimaza. Kufanele babheke amagciwane ngempela, noma bavaleleke kumafinyila emaphashini akhe. Kufanele bagweme inhlabathi, izindawo zokudlala ezinabantu abaningi, njll.
- “Ngingathanda ukuthi abantu baqonde izinhlobo ezahlukene ze-autism, ezisobala nezingabonakali kangako. Indodana yami ine-Asperger's. Uvame ukubizwa ngokuthi uyinqaba noma wehlukile kontanga.”
- “O, zonke izingane zenza lokho,” kusho uMaralee. “Ezinganeni zethu ezinokukhubazeka okungabonakali, kuyasixaka uma abantu besho uma bengayiboni ingqayizivele yezinkinga esibhekene nazo. Zonke izingane zingase zijabulele ukwenza ama-roughhousing, kodwa akuzona zonke izingane ezizoshaya ikhanda lazo odongeni uma zingakutholi okokufaka kwezinzwa ezikudingayo. Kuyize ngempela, nakuba ngibona indlela abazama ngayo ukukhuthaza.”
- U-Lauren uthi, “Enye yezinto ezicasula kakhulu, kimina, yilapho ngitshela othile ngendodakazi yami, futhi ngokuzenzekelayo bavele badangele/bahawukele bese bethi, 'Ngiyaxolisa kakhulu.' Engathi uyibhadi elingehlele. Ngifuna abantu baqonde ukuthi ishubhu lokuphakelayo lingenye indlela yokudla, isihlalo sabakhubazekile singenye indlela yokuhamba, kanye nemishini yokusayina/AAC (Augmentative and Alternative Communication) ingenye nje indlela yokuxhumana. Nakuba kunezinselelo ngokuqinisekile, ayikho kulezi zinto emenza adabuke.”
- U-Alethea wathi, “Iseluleko esingacelwanga. Uma ngifuna iseluleko ngizokubuza, kodwa uma ngikutshela ngento enginenkinga nayo, ngifuna umuntu engizoxoxa naye, hhayi iseluleko.”
- UKathy uthi, “Ngiyakhungatheka lapho abantu becabanga ukuthi okudingeka ngikwenze nje ukufundisa ingane yami ene-autistic ukuziphatha okufanele futhi izophila. Cha, lena indlela ayiyo, lena yindlela afunda ngayo futhi azizwe ngayo emhlabeni. Akasoze alingana nesikhunta.”
- U-Bailey uyaphakamisa, “Ulimi lomuntu lokuqala. Bheka lowo muntu ngaphambi kokuthi ubone ukukhubazeka.” Lona OMKHULU emphakathini wethu! Ungasho ukuthi, “Ingane ye-Down syndrome” noma “Ingane ye-Downs”; lokhu kubeka ukukhubazeka ngaphambi kwengane. Ithi, “Ingane ene-Down syndrome.”
- UPam uthi, “Lapho bebuza ukuthi 'Ingabe une-Down Syndrome?' Noma uma bebuza ukuthi unayo yini, bese wenza ukuthi 'oh, ngiyaxolisa buso'. Angiyona! Uyisithandwa sempilo yami futhi angeke amshintshele emhlabeni!”
- Okuvela kumzala wami othandekayo uCorey: “Anginayo ingane ene-autistic, kodwa ezintathu ezine-ADHD, eyodwa ene-OCD enzima nokukhathazeka, futhi nginomngane onengane ene-autism. Ngiyakuzonda lapho abantu bethi siyabakhulisa (senza okuthile abakudingayo) noma sibaphakele/sibavumela ukuba babaleke…. NGIYAKUZONDA nalapho abantu bethi kubi nje ukukhulisa izingane.”
- U-Megan uthi, “Nginabafana aba-2, bobabili abaneziphetho ezihlukene ze-autism spectrum. Ngihlale ngicelwa ukuthi ngenze izinto izingane zami ezingakwazi ukuzenza. Nginezingane ezi-3 ezingaphansi kweminyaka engu-5. U-A una-5, u-L uno-4 no-R cishe u-3. Ngingedwa isikhathi esingu-75%, ngakho-ke izinto ezifana nama-zoo, amapaki etimu, amabhishi… angikwazi ukuzenza. Akuphephile. Ngifisa sengathi abanye omama baqonde ukuthi kungaba nesizungu kangakanani.”
Futhi khumbula, ngenxa yezidingo ezikhethekile zabazali igama elithi “ukuphelelwa yisikhathi” libuhlungu. Sicela ungabizi izingane zethu ngalelo gama noma ulisebenzise ehlaya. Sebenzisa ukuxilongwa kwabo kwangempela. Ngisho noma ulisebenzisa ngendlela yokuncokola, leli gama lisihlaba ngqo enhliziyweni futhi lisidabule.
Kusobala ukuthi angilindele ukuthi ukhumbule yonke into engiyifakile, kodwa uma unomuntu omthandayo noma omaziyo onengane enezidingo eziyisipesheli, ngicela ukuthathe lokhu akulona ukhahlo kodwa uyifake enhliziyweni yakho. Siyazi ezikhathini eziningi, abantu abasho ukuthi bayadumaza noma bayahlambalaza, kodwa kubuhlungu. Njengabazali abanezidingo ezikhethekile, singabavikela kakhulu izingane zethu. Sizochitha impilo yethu yonke sibamela futhi silwela lokho okulungele izingane zethu nabanye abafana nabo. Sifuna nje ukuthi izingane zethu zithole uthando nenhlonipho efana neyezingane “ezijwayelekile”.
Umthombo: https://herviewfromhome.com/things-not-to-say-to-special-needs-parents/
