Zamkatimu
Kuti kulengeza kwa Matenda a Down syndrome Zinachitika panthawi yomwe ali ndi pakati kapena pobadwa, makolo a ana omwe ali ndi matenda a Down syndrome nthawi zambiri amanenakumverera komweko kwa kusiyidwa ndi kukhumudwa pa kulengeza kwa chilema. Mafunso ambiri akudutsa m'mitu yawo, makamaka ngati sadziwa za Down's syndrome, yomwe imatchedwanso Matenda a Down : Kodi mwana wanga adzakhala ndi chilema chanji? Kodi matendawa amadziwonetsera bwanji tsiku ndi tsiku? Kodi zotsatira zake pa chitukuko, chinenero, socialization ndi chiyani? Ndizigawo ziti zomwe mungatembenukireko kuti muthandize mwana wanga? Kodi matenda a Down syndrome ali ndi zotsatirapo zilizonse pa thanzi la mwana wanga?
Ana amene ayenera kutsatiridwa ndi kuthandizidwa kwambiri
Ngakhale kuti anthu ambiri amene ali ndi matenda a Down syndrome amakwanitsa kuchita zinthu zina akakula, mpaka nthawi zina amakhala yekha, mwana amene ali ndi matenda a Down syndrome amafunika kusamalidwa kwambiri. kukhala, kenako, kukhala wodzilamulira momwe ndingathere.
Pachipatala, trisomy 21 ingayambitse matenda a mtima obadwa nawo, kapena kusokonezeka kwa mtima, komanso kusayenda bwino m'mimba. Ngati matenda ena sapezeka kawirikawiri mu trisomy 21 (mwachitsanzo: matenda oopsa kwambiri, matenda a cerebrovascular, kapena zotupa zolimba), kusokonezeka kwa chromosomal kumeneku kumawonjezera chiopsezo cha matenda ena monga hypothyroidism, khunyu kapena matenda obanika kutulo.. Choncho, kuyezetsa kwathunthu kwachipatala kumafunika pakubadwa, kutenga mankhwala, komanso nthawi zambiri pa moyo.
Pankhani ya chitukuko cha luso galimoto, chinenero ndi kulankhulana, thandizo ndi akatswiri angapo chofunikanso, chifukwa izo yotithandiza mwanayo ndi kumuthandiza kukhala ndi zotheka.
Psychomotor Therapist, physiotherapist kapena speaker Therapist ndiye akatswiri omwe mwana yemwe ali ndi Down's syndrome angafunikire kuwona pafupipafupi kuti akule bwino.
CAMSPs, zothandizira sabata iliyonse
Kulikonse ku France, pali mabungwe omwe amagwira ntchito yosamalira ana azaka zapakati pa 0 mpaka 6 olumala, kaya ali ndi vuto lamalingaliro, magalimoto kapena malingaliro: CAMSPs, kapena malo oyambirira a medico-social action. Pali malo 337 amtunduwu mdziko muno, kuphatikiza 13 akunja. Ma CAMSP awa, omwe nthawi zambiri amaikidwa m'malo a zipatala kapena m'malo a ana aang'ono, amatha kukhala osinthasintha kapena apadera pothandizira ana omwe ali ndi chilema chofanana.
Ma CAMSP amapereka izi:
- kuzindikira koyambirira kwa zomverera, zamagalimoto kapena zamaganizo;
- chithandizo chakunja ndi kukonzanso ana omwe ali ndi vuto lakumva, magalimoto kapena malingaliro;
- kukhazikitsa ntchito zapadera zodzitetezera;
- malangizo kwa mabanja mu chisamaliro ndi maphunziro apadera chofunika ndi chikhalidwe cha mwanayo pa kukambirana, kapena kunyumba.
Katswiri wa ana, physiotherapist, wolankhula mawu, psychomotor Therapist, aphunzitsi ndi akatswiri amisala ndi ntchito zosiyanasiyana zomwe zimakhudzidwa ndi CAMPS. Cholinga chake ndi kulimbikitsa chikhalidwe ndi maphunziro a ana, kaya ali ndi chilema chotani. Poganizira za luso lake, mwana wotsatiridwa mu CAMSP akhoza kuphatikizidwa mu dongosolo la sukulu, kapena sukulu yasukulu (nazale ya masana, khriche…) yanthawi zonse kapena yanthawi yochepa. Mwanayo akayamba kuphunzira, amakhazikitsa Personalized Schooling Project (PPS)., zokhudza sukulu imene mwanayo angaphunzirepo. Za kuthandizira kuphatikizidwa kwa mwana kusukulu, wothandizira moyo wa sukulu (AVS) angafunike kuthandiza mwanayo m’moyo wake wa kusukulu watsiku ndi tsiku.
Makolo onse omwe ali ndi mwana wosapitirira zaka 6 wolumala ali ndi mwayi wopita ku CAMSPs, popanda kufunikira kutsimikizira kuti mwanayo ali ndi chilema, choncho akhoza lumikizanani ndi mapangidwe omwe ali pafupi nawo mwachindunji.
Zochita zonse zomwe ma CAMSP amachitidwa ndi Health Insurance. AMPPS ndi 80% yothandizidwa ndi Primary Health Insurance Fund, ndipo 20% ndi General Council yomwe amadalira.
Njira inanso yotsatirira mlungu ndi mlungu kwa mwana yemwe ali ndi Down's syndrome ndi gwiritsani ntchito akatswiri omasuka, zomwe nthawi zina zimakhala zodula kusankha mwachisawawa kwa makolo, chifukwa chosowa malo kapena ma CAMSPs pafupi. Osazengereza kutero kuyitanitsa mayanjano osiyanasiyana omwe alipo pafupi ndi trisomy 21, chifukwa amatha kutumiza makolo kwa akatswiri osiyanasiyana m'dera lawo.
Kuwunika kolondola komanso kwapadera kwa moyo wonse koperekedwa ndi Lejeune Institute
Kupatula chisamaliro chamlungu ndi mlungu, chisamaliro chokwanira cha akatswiri a Down's syndrome chingakhale chanzeru, kuunika kulemala kwa mwanayo molondola, kuti mudziwe zambiri za matenda. Ku France, Lejeune Institute ndiye bungwe lalikulu lomwe limapereka chisamaliro chokwanira kwa anthu omwe ali ndi Down's syndrome, ndipo izi kuyambira kubadwa mpaka kumapeto kwa moyoBy gulu lachipatala lamitundumitundu komanso apadera, kuyambira dokotala wa ana mpaka geriatrician kudzera geneticist ndi dokotala wa ana. Kukambirana modutsana ndi akatswiri osiyanasiyana nthawi zina kumakonzedwa, kuti athetse matendawa momwe angathere.
Chifukwa ngati anthu onse omwe ali ndi matenda a Down agawana "majini ochulukirapo", lililonse lili ndi njira yakeyake yochirikizira kusokonezeka kwa majini kumeneku, ndipo pali kusiyana kwakukulu kwa zizindikiro kuchokera kwa munthu ndi munthu.
« Kupitilira kutsata zamankhwala pafupipafupi, zitha kukhala zofunikira pazigawo zina za moyo kuti muyesedwe kwathunthu, kuphatikiza makamaka. chinenero ndi psychometric zigawo zikuluzikulu », Kodi tingawerenge pa tsamba la Lejeune Institute. ” Kuwunika uku, komwe kumachitika mothandizana kwambiri ndi olankhula mawu, neuropsychologist ndi dokotala, kumatha kukhala kothandiza kuzindikira malingaliro omwe angagwirizane bwino ndi munthu amene ali ndi luntha laluntha pa nthawi ya magawo akuluakulu a moyo wake : kulowa kusukulu ya nazale, kusankha kokonda kusukulu, kulowa uchikulire, kukhala ndi luso laukadaulo, kusankha malo abwino okhala, kukalamba ... "The ndi neuropsychology chotero ndi yoyenera makamaka kuthandiza makolo kupanga chosankha choyenera ponena za maphunziro a mwana wawo.
« Kukambirana kulikonse kumatenga ola limodzi, chifukwa kukambirana kwenikweni ndi banja ndi kulamulira odwala omwe nthawi zina amakhala ndi nkhawa kwambiri ", Akufotokoza Véronique Bourgninaud, wogwira ntchito ku Lejeune Institute, akuwonjezera kuti" ino ndi nthawi yofunikira kuti mupeze matenda abwino, kuzama mafunso ndi kufufuza kwachipatala, kufufuza zofunikira ndi kupeza njira zothetsera chisamaliro chabwino cha tsiku ndi tsiku. Wothandizira chithandizo amapezekanso kuti azithandizira makolo a ana omwe ali ndi Down's syndrome pamachitidwe awo osiyanasiyana. Kwa Véronique Bourgninaud, njira yachipatala iyi ndi yogwirizana ndi kutsatiridwa kwa chigawo ndi ma CAMSP, ndi kulembetsa kwa moyo wonse, zomwe zimapatsa akatswiri a Institute a chidziwitso chapadziko lonse cha anthu ndi ma syndromes awo : dokotala wa ana amadziwa zomwe zimakhala za ana omwe wawatsatira, dokotalayo amadziwa nkhani yonse ya munthu amene amamulandira.
Jérôme Lejeune Institute ndi gulu lachinsinsi, lopanda phindu. Kwa odwala, kufunsana kumaperekedwa ndi Health Insurance, monga m'chipatala.
Kochokera ndi zina zowonjezera:
- 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/