Okuqukethwe
Ukuthi isimemezelo se Ukuxilongwa kwe-Down's syndrome kwenzeka ngesikhathi sokukhulelwa noma ngesikhathi sokuzalwa, abazali bezingane ezine-Down's syndrome bavame ukubikaumuzwa ofanayo wokulahlwa kanye nokudumala ngesimemezelo sokukhubazeka. Imibuzo eminingi igijima emakhanda abo, ikakhulukazi uma bengajwayelene ne-Down's syndrome, ebizwa nangokuthi I-Down syndrome : ingane yami izoba nokukhubazeka okungakanani? Lesi sifo sizibonakalisa kanjani nsuku zonke? Iyini imiphumela yako ekuthuthukisweni, ulimi, ukuhlalisana kwabantu? Yiziphi izinhlaka engingaphendukela kuzo ukuze ngisize ingane yami? Ingabe i-Down's syndrome inazo imiphumela empilweni yengane yami?
Izingane okufanele zilandelwe futhi zisekelwe kakhulu
Nakuba abantu abaningi abane-Down's syndrome befinyelela izinga elithile lokuzimela lapho sebebadala, kuze kube yilapho ngezinye izikhathi bekwazi ukuhlala yodwa, ingane ene-Down's syndrome idinga ukunakekelwa okukhethekile, ukuze kube, kamuva, ukuzimela ngangokunokwenzeka.
Ezingeni lezokwelapha, I-trisomy 21 ingabangela isifo senhliziyo sokuzalwa, noma ukukhubazeka kwenhliziyo, kanye nokukhubazeka kokugaya ukudla. Uma izifo ezithile zingavamisile ku-trisomy 21 (isibonelo: i-arterial hypertension, isifo sobuchopho, noma izimila eziqinile), lokhu kungavamile kwe-chromosomal kwandisa ingozi yezinye izifo ezifana ne-hypothyroidism, isithuthwane noma i-apnea syndrome yokulala.. Ngakho-ke ukuxilongwa okuphelele kwezokwelapha kuyadingeka lapho uzalwa, ukuthatha isitokwe, kodwa futhi kaningi phakathi nokuphila.
Mayelana nokuthuthukiswa kwamakhono emoto, ulimi nokuxhumana, ukusekelwa ochwepheshe abaningana kuyadingeka, ngoba kuzoshukumisa ingane futhi kumsize athuthuke kahle ngangokunokwenzeka.
Ngakho-ke i-Psychomotor Therapist, physiotherapist noma i-speech Therapist bangochwepheshe ingane ene-Down's syndrome okungase kudingeke ibabone njalo ukuze ithuthuke.
Ama-CAMSP, ukuze uthole ukwesekwa kwamasonto onke
Kuyo yonke indawo eFrance, kunezinhlaka ezisebenza ngokukhethekile ekunakekelweni kwezingane ezineminyaka engu-0 kuya kwengu-6 ezikhubazekile, kungakhathaliseki ukuthi ziyizinzwa, izinhliziyo noma ukushoda kwengqondo: Ama-CAMSP, noma izikhungo zangaphambi kwesikhathi ze-medico-social action. Zingu-337 izikhungo zalolu hlobo kuleli, okubalwa nezingu-13 zaphesheya kwezilwandle. Lawa ma-CAMSP, avame ukufakwa emagcekeni ezibhedlela noma ezikhungweni zezingane ezincane, angaba nezinto ezihlukahlukene noma akhethekile ekusekeleni izingane ezinohlobo olufanayo lokukhubazeka.
Ama-CAMSP ahlinzeka ngezinkonzo ezilandelayo:
- ukutholwa kusenesikhathi kokushoda kwezinzwa, motor noma ingqondo;
- ukwelashwa kanye nokuvuselelwa kwezingane ezinokukhubazeka kwezinzwa, motor noma ingqondo;
- ukuqaliswa kwezinyathelo ezikhethekile zokuvimbela;
- isiqondiso semindeni ekunakekelweni nasemfundweni ekhethekile edingwa isimo sengane ngesikhathi sokubonisana, noma ekhaya.
Udokotela wezingane, i-physiotherapist, i-speech Therapist, i-psychomotor Therapist, othisha nochwepheshe bezengqondo bayimisebenzi ehlukene ehilelekile EMAKHEMPENI. Inhloso ukukhuthaza ukujwayela kwezingane kwezenhlalo nezemfundo, kungakhathaliseki izinga lokukhubazeka kwazo. Ngokucabangela amakhono ayo, ingane elandelwayo ngaphakathi kwe-CAMSP ingahlanganiswa nesistimu yesikole, noma isikole sabasenkulisa (inkulisa yosuku, inkulisa…) isikhathi esigcwele sakudala noma itoho. Lapho imfundo yengane iqala, iPersonalized Schooling Project (PPS) iyamiswa, mayelana nesikole ingane engase ifunde kuso. Ngoba ukwenza kube lula ukuhlanganiswa kwengane esikoleni, isisebenzi esisekela impilo yesikole (AVS) kungase kudingeke ukuba usize ingane ekuphileni kwayo kwansuku zonke esikoleni.
Bonke abazali abanengane engaphansi kweminyaka engu-6 ekhubazekile banokufinyelela okuqondile kuma-CAMSP, ngaphandle kokudinga ukufakazela ukukhubazeka kwengane, futhi ngenxa yalokho thintana nesakhiwo esiseduze nabo ngqo.
Konke ukungenelela okwenziwa ama-CAMSP kungaphansi koMshwalense Wezempilo. AMAKHEMPU axhaswe yi-Primary Health Insurance Fund, kanti ama-80% axhaswe nguMkhandlu-jikelele athembele kuwo.
Enye inketho yokulandelela kwamasonto onke kwengane ene-Down's syndrome iwukuba sebenzisa ochwepheshe benkululeko, ngezinye izikhathi ukukhetha okubizayo ngokuzenzakalelayo kubazali, ngenxa yokuntuleka kwendawo noma ama-CAMSP aseduze. Ungangabazi biza izinhlangano ezahlukahlukene ezikhona cishe nge-trisomy 21, ngoba bangadlulisela abazali kochwepheshe abahlukene esifundeni sabo.
Ukuqapha okunembayo nokukhethekile impilo yonke okunikezwa yi-Lejeune Institute
Ngaphandle kokunakekelwa kwamasonto onke, ukunakekelwa okuphelele kochwepheshe be-Down's syndrome kungase kube okunengqondo, hlola ukukhubazeka kwengane ngokunembe kakhudlwana, ukuze uthole ukuxilonga okunemininingwane eyengeziwe. EFrance, iLejeune Institute iyisikhungo esiyinhloko esinikeza ukunakekelwa okuphelele kwabantu abane-Down's syndrome, futhi lokhu kusukela ekuzalweni kuye ekupheleni kokuphilaBy ithimba lezokwelapha elixube imikhakha ehlukahlukene kanye nekhethekile, kusukela kudokotela wezingane kuya kudokotela wezilwane nge isazi sofuzo kanye nodokotela wezingane. Ukubonisana okuphambene nochwepheshe abahlukene ngezinye izikhathi kuyahlelwa, ukuze kuphelele ukuxilongwa ngangokunokwenzeka.
Ngoba uma bonke abantu abane-Down's syndrome babelana “ngofuzo oludlulele”, ngayinye inendlela yayo yokusekela lokhu kuphazamiseka kofuzo, futhi kunokuhlukahluka okukhulu kwezimpawu kumuntu nomuntu.
« Ngaphandle kokulandelela okujwayelekile kwezokwelapha, kungase kube usizo ezigabeni ezithile zokuphila ukuze kuhlolwe ngokuphelele, okuhlanganisa ikakhulukazi izingxenye zolimi nezengqondo », Singafunda esizeni seLejeune Institute. ” Lokhu kuhlola, ngokuvamile okwenziwa ngokubambisana eduze nodokotela wezinkulumo, i-neuropsychologist kanye nodokotela, kungaba usizo bona ukuthambekela okuzofanela kangcono umuntu onokukhubazeka kwengqondo ngesikhathi sezigaba ezibalulekile zokuphila kwakhe : ukungena enkulisa, ukukhetha isikole, ukungena ebudaleni, ukujwayela umsebenzi, ukukhetha indawo efanelekile yokuhlala, ukuguga ... ”Uhlelo lwe- nge-neuropsychology ngakho-ke ifaneleka ngokukhethekile ukusiza abazali ukuba benze ukukhetha okufanele mayelana nemfundo yengane yabo.
« Ukubonisana ngakunye kuthatha ihora elilodwa, ngoba inkhulumomphendvulwano yangempela nomndeni kanye nokuthambisa iziguli ngezinye izikhathi ezikhathazeke kakhulu “, Kuchaza uVéronique Bourgninaud, isikhulu sezokuxhumana e-Lejeune Institute, wengeza ngokuthi” lesi yisikhathi esidingekayo ukwenza ukuxilongwa okuhle, ukujulisa imibuzo kanye nokuhlolwa komtholampilo, ukuhlola izidingo kanye nokuthola izixazululo eziphathekayo zokunakekelwa okuhle kwansuku zonke. Usonhlalakahle uyatholakala futhi ukuze asekele abazali bezingane ezine-Down's syndrome ezinqubweni zabo ezihlukahlukene. Mayelana noVéronique Bourgninaud, le ndlela yezokwelapha ihambisana nokulandelwa kwesifunda nama-CAMSP, futhi ibhalisela ukuphila konke, okunikeza ochwepheshe beSikhungo a ulwazi lomhlaba wonke lwabantu kanye nama-syndromes abo : udokotela wezingane uyazi ukuthi kwenzekani ngezingane azilandelayo, udokotela uyayazi yonke indaba yomuntu owamukelayo.
I-Jérôme Lejeune Institute iyisakhiwo esizimele, esingenzi nzuzo. Ngakho-ke ezigulini, ukubonisana kufakwa ngaphansi koMshwalense Wezempilo, njengasesibhedlela.
Imithombo nolwazi olwengeziwe:
- http://annuaire.action-sociale.org/etablissements/jeunes-handicapes/centre-action-medico-sociale-precoce—c-a-m-s-p—190.html
- http://www.institutlejeune.org
- https://www.fondationlejeune.org/trisomie-21/