Contents
Cewar sanarwar Fahimtar cutar Down's syndrome ya faru a lokacin daukar ciki ko lokacin haihuwa, iyayen yara masu fama da Down syndrome sukan bayar da rahotoIrin wannan jin watsi da damuwa a sanarwar nakasa. Tambayoyi da yawa suna yawo a cikin kawunansu, musamman idan basu saba da ciwon Down ba, wanda kuma ake kira Ciwon mara : Wane mataki nawa nawa yaro zai samu? Ta yaya cutar ke bayyana kanta a kullum? Menene illarsa ga ci gaba, harshe, zamantakewa? Wadanne tsarin da zan bi don taimakawa yaro na? Shin ciwon Down yana da wani sakamako ga lafiyar ɗana?
Yaran da dole ne a bi su da ƙarin tallafi
Yayin da yawancin mutanen da ke fama da ciwon Down suka sami wani matakin yancin kai a lokacin girma, har ya kai ga wani lokaci su iya zama shi kaɗai, yaron da ke fama da ciwon Down yana buƙatar kulawa ta musamman. don zama, daga baya, mai cin gashin kansa kamar yadda zai yiwu.
A matakin likitanci, trisomy 21 na iya haifar da cututtukan zuciya na haihuwa, ko ciwon zuciya, da kuma rashin narkewar abinci. Idan wasu cututtuka ba su da yawa a cikin trisomy 21 (misali: hauhawar jini, cututtukan cerebrovascular, ko ciwace-ciwacen daji). Wannan rashin daidaituwa na chromosomal yana ƙara haɗarin wasu cututtuka irin su hypothyroidism, epilepsy ko ciwon barci na barci.. Don haka ana buƙatar cikakken duba lafiyar likita lokacin haihuwa, don yin lissafi, amma kuma sau da yawa yayin rayuwa.
Game da haɓaka ƙwarewar motsa jiki, harshe da sadarwa, ana buƙatar goyon bayan ƙwararrun ƙwararru da yawa, saboda zai motsa yaron kuma ya taimaka masa ya ci gaba da kyau.
Masanin ilimin halin dan Adam, likitan motsa jiki ko likitan magana don haka ƙwararru ne waɗanda yaro mai ciwon Down zai iya gani akai-akai don samun ci gaba.
CAMSPs, don tallafin mako-mako
A ko'ina a Faransa, akwai tsarin da ya ƙware wajen kula da yara masu shekaru 0 zuwa 6 masu nakasa, ko suna da nakasu, na motsa jiki ko na hankali: CAMSPs, ko cibiyoyin aikin medico-sociala na farko. Akwai cibiyoyi 337 na irin wannan a kasar, ciki har da 13 a kasashen waje. Waɗannan CAMSPs, waɗanda galibi ana girka su a wuraren asibitoci ko a cibiyoyi na yara ƙanana, na iya zama iri-iri ko ƙware wajen tallafawa yara masu irin nakasa.
CAMSPs suna ba da ayyuka masu zuwa:
- farkon ganowa na azanci, mota ko na hankali;
- jiyya na marasa lafiya da kuma gyara yaran da ke da nakasu na hankali, motsi ko tunani;
- aiwatar da ayyuka na rigakafi na musamman;
- jagora ga iyalai a cikin kulawa da ilimi na musamman da ake buƙata ta yanayin yaron yayin shawarwari, ko a gida.
Likitan yara, likitan physiotherapist, mai ba da magana, mai ilimin psychomotor, malamai da masana ilimin halayyar dan adam sune sana'o'i daban-daban da ke cikin CAMPS. Manufar ita ce inganta zamantakewar zamantakewa da ilmantarwa na yara, ko wane irin matakin nakasarsu. Dangane da iyawar sa, yaron da ke bin CAMSP ana iya haɗa shi cikin tsarin makaranta, ko preschool (ranar gandun daji, crèche…) na cikakken lokaci ko na ɗan lokaci. Lokacin da karatun yaron ya taso, an kafa wani Aikin Makaranta na Musamman (PPS)., dangane da makarantar da yaron zai iya zuwa. Domin sauƙaƙe shigar yaro cikin makaranta, ma'aikacin tallafawa rayuwar makaranta (AVS) ana iya buƙatar taimakon yaron a rayuwarsa ta makaranta.
Duk iyaye masu yaro a ƙarƙashin 6 tare da nakasa suna samun damar kai tsaye zuwa CAMSPs, ba tare da buƙatar tabbatar da rashin lafiyar yaron ba, don haka za su iya. tuntuɓi tsarin mafi kusa da su kai tsaye.
Duk ayyukan da CAMSPs suka yi suna cikin Inshorar Lafiya. CAMPS suna samun kashi 80% na Asusun Inshorar Lafiya na Farko, da 20% na Babban Majalisar da suka dogara da shi.
Wani zaɓi don bin mako-mako na yaron da ke da Down syndrome shine yin amfani da kwararrun masu sassaucin ra'ayi, wanda wani lokaci zaɓi ne mai tsada ta hanyar tsoho ga iyaye, saboda rashin sarari ko CAMSPs kusa. Kada ku yi shakka kira ga ƙungiyoyi daban-daban waɗanda ke wanzu a kusa da trisomy 21, domin suna iya tura iyaye zuwa ga kwararru daban-daban a yankin su.
Daidaitaccen kulawa na musamman na rayuwa wanda Cibiyar Lejeune ke bayarwa
Bayan kulawar mako-mako, ƙarin cikakkiyar kulawa ta kwararrun masu fama da ciwon Down na iya zama masu hukunci, don tantance nakasar yaron daidai, don samun cikakken ganewar asali. A Faransa, Cibiyar Lejeune ita ce babbar cibiyar da ke ba da cikakkiyar kulawa ga mutanen da ke fama da cutar Down, kuma wannan daga haihuwa har zuwa karshen rayuwaBy ƙungiyar likitoci masu yawa da ƙwararrun likitoci, kama daga likitan yara zuwa likitan geriatric ta hanyar likitan kwayoyin halitta da likitan yara. Ana shirya shawarwari tare da ƙwararru daban-daban a wasu lokuta, don kammala ganewar asali gwargwadon yiwuwa.
Domin idan duk mutanen da ke fama da ciwon Down suna raba “wutancin kwayar halitta”, kowanne yana da nasa hanyar tallafawa wannan dabi'a ta dabi'a, kuma akwai babban bambanci a cikin alamun bayyanar cututtuka daga mutum zuwa mutum.
« Bayan bin tsarin likita na yau da kullun, yana iya zama dacewa a wasu matakan rayuwa don samun cikakkiyar kima, gami da musamman. harshe da kuma abubuwan da suka shafi tunanin mutum », Za mu iya karantawa a shafin Cibiyar Lejeune. ” Wadannan kima, waɗanda ake gudanar da su gabaɗaya tare da haɗin gwiwa tare da mai ilimin hanyoyin kwantar da hankali, neuropsychologist da likita, na iya zama da amfani ga gane alkiblar da za ta fi dacewa da mai nakasa ta hankali a lokacin muhimman matakai na rayuwarsa. Shiga makarantar renon yara, zabin sanin makamar karatu, shiga balagagge, ƙwararru, zaɓin wurin zama mai dacewa, tsufa… "The tare da neuropsychological saboda haka ya dace musamman don taimaka wa iyaye su yi zaɓin da ya dace game da ilimin yaransu.
« Kowane shawarwari yana ɗaukar awa ɗaya, don ainihin tattaunawa da iyali da kuma horar da majinyata wadanda wani lokaci sukan damu matuka ", ya bayyana Véronique Bourgninaud, jami'in sadarwa a Cibiyar Lejeune, ya kara da cewa" wannan shine lokacin da ake buƙata don yin ganewar asali mai kyau, don zurfafa tambayoyi da jarrabawar asibiti, don tantance buƙatun da kuma samo ainihin mafita don kyakkyawar kulawa ta yau da kullum. Hakanan akwai ma'aikacin zamantakewa don tallafawa iyayen yara masu ciwon Down a cikin hanyoyinsu daban-daban. Véronique Bourgninaud wannan hanyar likita ta dace da bin yanki tare da CAMSPs, kuma ya yi rajista har tsawon rayuwarsa, wanda ke ba wa Cibiyar ƙwararrun ƙwararrun ƙwararrun Cibiyar a ilimin duniya na mutane da ciwon su : likitan yara ya san abin da ya faru na yaran da ya bi, likitan geria ya san dukan labarin mutumin da yake maraba.
Cibiyar Jérôme Lejeune tsari ne mai zaman kansa, mara riba. Don majiyyata, shawarwarin suna rufe da Inshorar Lafiya, kamar a asibiti.
Tushen da ƙarin bayani:
- 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/