Ukunceda abantwana abane-Ehlers-Danlos syndrome baphumelele kwaye bahlale bekhuselekile
Ootitshala bangabancedana kakhulu ekugcineni umntwana wakho ene-Ehlers-Danlos syndrome ephephile kwaye ephumelelayo esikolweni, kodwa uya kufuneka uqinisekise ukuba banalo lonke ulwazi abayidingayo ukunceda. Ziziphi izinto ezibalulekileyo kufuneka uhlanganyele notitshala womntwana wakho ngaphambi kokuba unyaka wesikolo uqale?
Ukuze ukwazi ukuqonda ngokucacileyo oko ootitshala abakufanele bazi xa ufundisa umntwana nge-Ehlers-Danlos syndrome kuyakunceda ukuhlaziywa kokuqala kwiimeko ezisisiseko kunye neempawu.
Yintoni i-Ehlers-Danlos Syndrome (EDS)?
I-Ehlers-Danlos syndrome (i-EDS) ayikho enye i-syndrome, kodwa kunokuba iqela lemiqathango echaphazela izicubu ezinxulumene nolusu, amathambo, i- cartilage , i- tendon , imithana yegazi kunye nokunye.
I-Ehlers-Danlos syndrome yimeko ezuzelelekileyo ehlobene nokuguquka kwemfuza kwimizimba engama-12 echaphazelekayo ekwakheni izicubu ezinxulumene nomzimba. Ezinye iifom ziyi-autosomal eziphezulu kwaye ezinye zizenzekelayo. I-EDS inokuvela ngenxa yokuguquka kwintshukumo kubantu abangenayo imbali yentsapho yesi sifo.
Kubalulekile ukuqaphela ukuba kukho uluhlu olubanzi lweempawu ezingenzeka kubantu abane-EDS. Abanye abantu baxilongwa ngokukhawuleza njengabantwana abancinci, kanti abanye bengazi kakuhle i-syndrome de babe ngabantu abadala. I-EDS ingaba mnene nje ngokuba "amanxeba avulekileyo" (anokuthi "inzuzo" kwi-gymnastics) okanye inzima ngokwaneleyo ukuba isongela ubomi.
Iimpawu ze-Ehlers-Danlos Syndrome
Iimpawu ze-Ehlers-Danlos syndrome zingaquka:
- Amalungu amaninzi afanelekileyo ( ukudibanisa okuhlangeneyo ): Ngokwimigaqo ebekiwe , oku kungabhekiselwa kuye ngokuthi "ukudibanisa kabini." Ngenxa yokungahambi kakuhle, ukuchithwa kwezinto kuqhelekile.
- Isikhumba esinamaqabunga esinokuba sisithambile okanye si-velvet-like in texture.
- Isikhumba esikhathekayo: Ulusu lunokukrazula lula kwaye kaninzi lukhuni ukuguqulwa (ukutywala). Ukuqhawulwa kwamanzi nakho kunokwenzeka ukuba kubangele utywala.
Iintlobo ze-Ehlers-Danlos Syndrome
Kukho iinqununu ezithandathu ezinkulu ze-Ehlers-Danlos syndrome, kunye nezinye zezo zidibeneyo zize zenzeke kwii-syndromes ezahlukeneyo. I-subtype eqhelekileyo ye-EDS yi-hypermobility, kwaye ichaphazela ngokuyinhloko amajoyina. Amagqabantshintshi angakumbi aquka "isifo" sesifo apho imithana yegazi ingabhuqa, ngamanye amaxesha iziphumo ezinobungozi. Ngethamsanqa, ezi zintlukwano ezinkulu kakhulu aziqhelekanga. Ngelixa ukululaza okulula kuqhelekileyo kwi-subtypes ye-vascular, kunokuthi kwenzeke nayiphi na uhlobo lwe-EDS.
Izinto Ezifunekayo Ootitshala
Kukho izinto ezibalulekileyo ezifunekayo ootitshala ukuze bancede umntwana kunye ne-Ehlers-Danlos syndrome ahlale ephephile kwaye aphumelele. Siza kuthetha ngamanye amanqaku aqhelekileyo ukuba unomntwana onama-EDS eklasini lakho, kodwa kubalulekile ukuhlala phantsi nabazali bomntwana kwaye ufunde ngeengxaki zabo. Wonke umntwana onama-EDS uhlukile, kwaye abazali banokuba neengxakini ezithile ezingaxeliwe ngolwazi jikelele malunga nesifo. Yintoni omele uyiqonde ngabantwana abane-EDS?
Eminye Imisebenzi Yokwenyama ingaba yingozi
Imisebenzi yenyama ingaba yingozi ngenxa yobunzima bokukhupha kunye nekhanda elincinci. Eminye imisebenzi yomzimba kufuneka igwenywe njengezihlanganisi ezingavumelekanga kunokubeka aba bana engozini yokutshatyalaliswa.
Imisebenzi enokuthi ibangele ukutshintshiselwa kubandakanya imidlalo yokuqhagamshelana kunye nalabo abangela ukuphoqa ngokukhawuleza okanye ukuguqa, njengemidlalo ye-racquet. Ngaphandle kwinqanaba le-EDS, ubunzima beempawu ziyahluka, ngoko kunceda ukubuza abazali bomntwana ngemisebenzi ethile enokuthi idibene nayo kwi-classroom yokudlala okanye kwindawo yokudlala.
UkuBhala Kungaba nzima
Ngamanye amaxesha kulula ukulibala ukuba imisebenzi efanelekileyo ye-motor ingaba nzima njengemisebenzi yomzimba wonke. Ukubhala, ngokukodwa, kunokuba nzima kuba bantwana abane-EDS. Le ngxaki yeentlungu ngokusebenzisa ipeni okanye ipensela, kwakhona ichaphazela amandla omntwana ukuthatha amanqaku, ubhale iincwadana okanye uhlale ukhawuleza kwiimvavanyo.
Kukho izinto ezininzi ootitshala abanokuzenza ukuze bancede abantwana banenkinga yesandla kunye nentlungu yesandla ngenxa yokubhala. Ngamanye amaxesha kungase kube lula njengokungena ipenki. Kwabanye abantwana, ukuthayipha kwincwadi okanye i-iPad kunokulula kunokubhala. Enye inketho eye yanceda abanye abantwana kukubonelela nge-note-taker; nokuba ngumfundi ozimisele ukuthayipha amanqaku okanye amanqaku ukuba unotitshala unokubonelela.
Uhlobo lokubhala lungenza umehluko ngokunjalo, kwaye ngamanye amaxesha ukunyathelisa okanye ukuphinda kulula. Ukutshintshela phambili naphambili phakathi kwezi, nangona kunjalo, kunokubonisa umngeni.
Okubaluleke ngakumbi, mhlawumbi, ukuvumela umntwana ithuba elide lokubhala xa evavanya okanye egqiba umsebenzi wesikolo ekhaya.
Ukungabi Namaxesha Asoloko Unokuthi Unokwenzeka
Abantwana abane-EDS bahlala bengabikho, mhlawumbi ngenxa yokubuhlungu okungapheliyo, ukulimala okanye ukukhathala okuqhelekileyo. Ukuvuthwa kwe-apnea yokuvuthwa kuyaqheleke kakhulu , okuchaphazela malunga nesithathu kwabantwana abane-EDS, kwaye ukuba ingaphathwa kakubi kungabangela ukukhathala kwamalanga emini. Kunceda kakhulu ukusebenza kunye nabazali bomntwana ukuba agcine afikelele kwizabelo ngexesha lakhe ekhaya.
Iingqungquthela kunye neengcibi zesikhumba ziqhelekileyo
Kwintlangano esilungele ngayo ngoku kubakho ukuxhaphazwa kwabantwana, kubalulekile ukuqonda ukuba izibhamu kunye neentlungu zesikhumba ziqhelekileyo kubantwana abane-EDS. Ukuba unomntwana eklasini kwaye uzive uxhalabile ngokubona imivimbo okanye iinyembezi zesikhumba, khumbula ukuba into enokuthi ibhekisele kumntwana ngaphandle kwe-EDS ingaqhelekanga kumntwana one-EDS.
Iincwadi zinzima
Ubunzima obufanayo kubantwana abane-EDS ethwala iincwadi ezinzima nakwi-school. Iincwadi zinzima! Kukho amanyathelo amaninzi anokunceda kule nto. Ngamanye amaxesha, ukubonelela umntwana ngesethi yeencwadi ukugcina ekhaya ngokungezelela kwisethi esikolweni kunokunciphisa le nkxalabo. Ukuba kuyimfuneko ukuba umntwana athathe iincwadi phakathi kweeklasi, unako ukumnika umntwana umngane ukuba ancede. Ukusebenzisa inguqulo ye-intanethi yeencwadi zezifundo enye inketho.
Ukuxoxa ngokuxilongwa kunye nabanye abafundi
Abantwana banomdla kwaye kaninzi banemibuzo malunga nomfundi ongeke athathe inxaxheba kwimisebenzi ethile okanye ufuna uncedo oluthile (njengokuba ixesha elide lokugqiba uvavanyo). Ngaphambi kokuba uxoxe nabanye abafundi, qiniseka ukuba ubuze abazali bomntwana wakho ukuba bazincokola ngani nawabelana nabo. Abazali abaninzi bayayiqonda isenzo sokuzisa abantwana abafunda nabo ukuba baqhube ngokukhawuleza njengoko kuyenziwa ngendlela efanelekileyo nelula. Buza umntwana kunye nezinto ezikhethiweyo. Abanye abantwana abafuni abanye abantwana ukuba bazi "bahluke" kwaye kubalulekile ukuyihlonela. Abanye abantwana, ngokuchaseneyo, banokukhululeka xa uvumela abanye abantwana ukuba bazi ukuba uyintoni na.
Qaphela izidingo zomntwana
I-EDS inokubangela ukukhathazeka okukhulu kwabantwana, kwaye ukunciphisa esikolweni kunokuncedisa kule nkxwaleko. Thetha nabazali bomntwana malunga naluphi na ukukhathazeka okhethekileyo abanalo. Xa umntwana one-EDS eshiywe ngaphandle komsebenzi, cinga ngeendlela zokwenza indawo yezinto zentlalo zale ndawo ngenye into. Buza oko kukunceda umntwana uzive echaphazelekayo kunye nenxalenye yeqela ngaphandle kweklasi.
Uvulo oluvulekile luyimfuneko
Ukuvulwa koqhagamshelwano phakathi kwekhaya kunye nesikolo kubaluleke kakhulu kubantwana abane-EDS. Aba bantwana badinga bonke abadala ebomini babo basebenza kunye. Ukuba unemibuzo okanye ungaqiniseki, kukulungele ukubuza.
ILizwi
I-Ehlers-Danlos syndrome yinkalo yeemeko ezibandakanya ukuxhamla (izilwanyana ezivulekileyo), isikhumba esikhathekayo, ngamanye amaxesha nezinye iingxaki. Ukuba uya kuba ne-EDS eklasini, kubalulekile ukusebenza kunye nabazali bakhe ukuba bafumane iindlela zokumnceda ukuba baphumelele kwaye baphephe. Ngethamsanqa, amanyathelo alula njengokuphepha kwimidlalo yokuthintana, ukunika ixesha elide xa kubhala ubuhlungu, kwaye kunceda umntwana ahlale efundweni zakhe nangona engekhoyo, unokuhamba ixesha elide ukuqinisekisa ukuba ukhuseleko kunye nokuphumelela esikolweni.
Njengengxelo yokugqibela, ukuba uyaphawula ukuba umntwana eklasini yakho ibonakala enokungabikho komzimba kwaye unayo nayiphi na impawu ebhalwe ngasentla, khuluma nabazali bomntwana. I-EDS iqikelelwa ukuba ifuthe abantu abangama-50 000 e-United States, kwaye iipesenti ezingama-90 zalaba bantu azifunyanwanga zize zifumane uncedo lwezoxakeka lwezonyango olufuna ukunakwa.
> Imithombo:
> De Baets, S., Vanhalst, M., Coussens, M. et al. Impembelelo ye-Ehlers-Danlos Syndrome-Uhlobo lwe-Hypermobility, kuMama: I-Phenomenological Hermeneutical Study. Uphando malunga nokukhubazeka okuphuhlisayo . 2017. 60: 135-144.
> Kliegman, uRobert M., uBonita Stanton, uSt Geme III uJoseph W., uNine Felice. Schor, uRichard E. Behrman, kunye noWaldo E. Nelson. Ncwadana yeeNzululwazi. 20 Edition. Philadelphia, PA: Elsevier, 2015. Print.