Ibhulogi yakamuva Ukuvimbela kungcono kunokwelapha isilungele ukufundwa ku-inthanethi lapha https://www.fireflyfriends.com/uk/blog/prevention-is-better-than-cure/ Ngikhumbula kahle ngilethe owokugcina ekhaya lezingane ezintathu ukuze zihlanganyele iwele lakhe kanye nodadewabo. Kwaba impumuzo enkulu ekugcineni lapho sibona izingane zethu ezintathu ezinhle zihlangene futhi lapho zingakhona! U-Jacob wahlala esibhedlela amasonto ayisithupha (amane ngaphezu kuka-Ben no-Chloe) ezelwe izinyanga ezi-2 ngaphambi kwesikhathi. Unohlobo olubi kakhulu lwe-spina bifida eyaziwa ngokuthi i-myelomeningocele. Okusho ukuthi umgogodla kanye ne-meninges kwakuse "sakeni" emhlane wakhe. Lokhu akukwazanga ukuvalwa waze waba mkhulu, ngakho kwadingeka sidlale umdlalo wokulinda owesabekayo . Kwakumangalisa ukwenza okuthile 'izandla phezu' Ngikhumbula ngihleli eSCBU noJacob senza izivivinyo ezinikezwa i-physio ukusiza izinyawo zakhe ezazijikelwe ngaphakathi. Kwakumnandi kakhulu ukwenza okuthile "izandla" naye. Ngemva kwesikhathi esingaka sikhuluma naye nge-incubator. Kunzima kakhulu ukuzizwa uqhelelene nengane yakho. Ngakho, ngangizimisele kakhulu ukwenza noma yini ukuze ngisize! Lokhu kungenelela kusenesikhathi kusho ukuthi wakwazi ukuphonswa ama-splints esekhulile ngaphandle kokuhlinzwa. Lapho iqolo lakhe selivaliwe futhi kufakwe i-shunt ukuphatha i-hydrocephalus yakhe, weza ekhaya. Futhi ngokuzumayo saba necala ngakho konke ukunakekela kwakhe. Naphezu kwesizinda sami njengomhlengikazi, lokhu kwakungethusa ngempela. Ngangilokhu ngicabanga “Kuthiwani uma ngikuthola kungalungile? Kuthiwani uma ngiphuthelwa okuthile okubalulekile? Ngingasiza ngani?”. Sithole ukwesekwa okuhle okuvela emaqenjini omphakathi Siyabonga, sibe nokusekelwa okuhle okuvela emaqenjini omphakathi ahlanganisa ubuhlengikazi, i-physios, i-OT's, i-dietician, i-GP njll. Njengoba u-Jacob ekhula futhi nezidingo zakhe zishintsha, sizophinda sihlole futhi sifunde imisebenzi emisha ukuze simsize athuthukise amandla futhi avimbele ukukhubazeka okuqhubekayo. Ingxenye enkulu yalokho kwakuwukuphatha ukuma. Wonke umndeni wethu uyazi ukuthi ngikhethekile ngendlela uJacob abekwe ngayo. Lokhu bekulokhu kwenzeka kusukela esemncane futhi waba nenhlanhla yokubolekwa isethi yama-foam rollers njll nge-Velcro. Kufana nekaFirefly ethi “Playpak” engangingazi ngaleso sikhathi ukuze enze izivivinyo ezithile wayezokuthola kunzima kakhulu. Ngangisebenzisa lezi nsuku zonke. Ngokuvamile ukwenza ukwelula ekuseni bese emsekela ukuba ahlale eqondile ntambama. UJakobe wayefake ihhanisi likaPavlik le-hip dysplasia. Ngangihlale ngiqaphela kakhulu ukugcina i-pelvis yakhe isesimweni esihle kakhulu ngangokunokwenzeka. Lokhu kwakungelula ngaso sonke isikhathi ngezinye izingane ezimbili ezazikhula ngamandla futhi zifunda ukukhasa ukuze “zisize” noJakobe. Kodwa ngikholelwa ngempela ukuthi ukungenelela kusenesikhathi kubaluleke kakhulu. Kwakusabisa kakhulu ukuba nengane eneminyaka emibili ubudala esihlalweni esikhulu sabakhubazekile Ngenxa yawo wonke umsebenzi owenziwa yiwo wonke umuntu noJacob, wakwazi ukuthola isihlalo sakhe esinamasondo sokuqala esizihambelayo eqeda iminyaka emibili! Wayibiza ngokuthi “raa raa” ngemva komdlalo ayewuthanda ngaleso sikhathi. Wayemangalisa kuwo! Futhi umhloli wesihlalo esinamasondo wangitshela ukuthi wayeyingane yokuqala asebenze nayo eyayibonisa ikhono elinjalo lemvelo lokuqondisa. Lokhu kwakungenxa yokuthi wayenesihlalo esincane esizishayelayo, esifana nesikaFirefly “Scoot”, ayesisebenzisa nsuku zonke. Kwakungethusa kakhulu ukuba nengane eneminyaka emibili ubudala esihlalweni esikhulu sabakhubazekile esingahamba ngokushesha kakhulu kunalokho ebengingathanda! Wayenenhliziyo encane futhi wayevame ukungibheka njalo! Manje njengoba eseneminyaka eyisikhombisa, i-OT yakhe inginikeze uzwela lwakhe Sithole izindaba ezinzima zokuthi uJakobe une-scoliosis kanye ne-lordosis yomgogodla wakhe. Uthe kuyo yonke imindeni yakhe, ngihlala ngimkhumbula uma ecabanga ukugcina izingane zisesimweni esifanele ngangokunokwenzeka. Anginaso isiqiniseko sokuthi lokho bekuyiqiniso noma ubekusho ngomusa. Kodwa ngokuqinisekile kwayisiza inhliziyo yami ebuhlungu! Kuzwakala kungalungile ukuthi ubhekene nalolu daba olusha, kodwa lokho impilo edabukisayo. Silindele ukubona ukuthi odokotela bakhe abahlinzayo bafuna ukwenzani. Uma kukhona, ukusiza umgogodla wakhe ukuthi uqonde kancane okufanele kumsize athole amandla athile awalahlile. Angiphakamisi ukuthi ikhambi eliwumlingo, kodwa alikwazi ukulimaza futhi lingasiza Okwamanje, esingakwenza ukuqhubeka siqinisekisa ukuthi uhlezi kahle esihlalweni sakhe esinamasondo, isihlalo esithi “GoTo” noma isitulo seshawa. Nangempela ahlale nathi kosofa ngoba kumfanele ukuthola lawo mava. Kodwa ngenza isiqiniseko sokuthi umi kahle futhi aka "flop" ohlangothini olulodwa noma olunye. Uma ngibheka emuva, ngibonga kakhulu ngokuthi ngiye ngaba nokuhlangenwe nakho njengomhlengikazi. Ngakwazi ukuqonda ukubaluleka kokuvimbela ukukhubazeka okwengeziwe lapho kungenzeka khona. Angiphakamisi ukuthi ikhambi eliwumlingo, kodwa alikwazi ukulimaza futhi lingasiza. Kuyaqondakala kodwa ngicela ubuze ithimba lengane yakho ukuze likunikeze iseluleko ngasinye kunoma yini ongayenza ekhaya ukuze usize. Sikufisela inhlanhla futhi ujabulele leso sikhathi ne(aba) bakho abancane! Okuthunyelwe Ukuvimbela kungcono kunokwelapha kuvele kuqala ku-Firefly Blog . ************ https://www.fireflyfriends.com/uk/blog/special-needs/,https://www.fireflyfriends.com/uk/blog/special-needs/advice -sekela/
