{"id":26742,"date":"2016-11-18T13:17:32","date_gmt":"2016-11-18T12:17:32","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=26742"},"modified":"2016-11-18T13:17:32","modified_gmt":"2016-11-18T12:17:32","slug":"maji-otevrena-srdce-jiz-20-let","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=26742","title":{"rendered":"Maj\u00ed otev\u0159en\u00e1 srdce. Ji\u017e 20 let"},"content":{"rendered":"

Tuto organizaci s celost\u00e1tn\u00ed p\u016fsobnost\u00ed tvo\u0159\u00ed skv\u011bl\u00ed a siln\u00ed lid\u00e9, kte\u0159\u00ed se dok\u00e1zali vyrovnat s t\u00edm, \u017ee se jim narodily d\u011bti s chromozom\u00e1ln\u00ed aberac\u00ed (v\u00edce v rastru). Vzali to jako v\u00fdzvu.<\/strong> <\/p>\n

\u010cas a energie, kter\u00e9 v\u011bnovali sv\u00fdm potomk\u016fm od narozen\u00ed, p\u0159es d\u011btstv\u00ed, dosp\u00edv\u00e1n\u00ed a\u017e do dosp\u011blosti, p\u0159inesly ovoce – mnoz\u00ed z\u00edskali vzd\u011bl\u00e1n\u00ed \u010di \u0159emeslo, zapojili se do \u017eivota b\u011b\u017en\u00e9 spole\u010dnosti v prost\u0159ed\u00ed sv\u00fdch vrstevn\u00edk\u016f, realizuj\u00ed sv\u00e9 kon\u00ed\u010dky a \u017eij\u00ed \u0161\u0165astn\u00fd \u017eivot.<\/p>\n

\u00bbNa\u0161e d\u011bti s Downov\u00fdm syndromem (DS) jsou pro n\u00e1s zku\u0161ebn\u00edm kamenem na\u0161\u00ed vytrvalosti, trp\u011blivosti a na\u0161ich schopnost\u00ed. Jsou ale tak\u00e9 velk\u00fdm zdrojem inspirace a \u017eivotn\u00ed s\u00edly,\u00ab vyznala se v editorialu \u010dasopisu Plus 21, bilancuj\u00edc\u00edho dvacetilet\u00ed spolku (\u010dasopis je oknem do \u017eivota Spole\u010dnosti DownSyndrom CZ), Anna Kopeck\u00e1.<\/p>\n

Ob\u010dansk\u00e9 sdru\u017een\u00ed vzniklo v roce 1996 jako Klub rodi\u010d\u016f a p\u0159\u00e1tel d\u011bt\u00ed s Downov\u00fdm syndromem, o t\u0159in\u00e1ct let pozd\u011bji v n\u00e1zvu Klub zam\u011bnili za Spole\u010dnost. Zakladatelkou je speci\u00e1ln\u00ed pedago\u017eka Miloslava Star\u00e1, kter\u00e1 se cel\u00fd sv\u016fj profesn\u00ed \u017eivot v\u011bnuje pr\u00e1ci s d\u011btmi vy\u017eaduj\u00edc\u00edmi zvl\u00e1\u0161tn\u00ed p\u00e9\u010di. Je pam\u011btnic\u00ed za\u010d\u00e1tk\u016f klubu a inici\u00e1torkou mnoha aktivit. P\u0159i speci\u00e1ln\u00ed Mate\u0159sk\u00e9 \u0161kole \u0160t\u00edbrova v Praze vzniklo Speci\u00e1ln\u011b pedagogick\u00e9 centrum, ve kter\u00e9m pan\u00ed Milu\u0161ka s kolegyn\u011bmi za\u010dala s d\u011btmi s DS odborn\u011b pracovat, individu\u00e1ln\u011b \u010di ve skupink\u00e1ch.<\/p>\n

\u00bbKdo mezi t\u011bmito d\u011btmi a nyn\u00ed ji\u017e mnoh\u00fdmi dosp\u011bl\u00fdmi \u017eije d\u00e9le, pozn\u00e1v\u00e1 jejich schopnost d\u00e1vat l\u00e1sku, p\u0159\u00e1telstv\u00ed a vd\u011bk za pochopen\u00ed,\u00ab uvedla v knize Olgy Struskov\u00e9 O \u010dem se (ne)mluv\u00ed.<\/p>\n

Kniha samotn\u00e1, kterou tvo\u0159\u00ed rozhovory s mlad\u00fdmi lidmi s DS o tom, jak\u00e9 maj\u00ed sny a tu\u017eby, radosti a strasti, je vyzn\u00e1n\u00edm obdivu re\u017eis\u00e9rky Olgy Struskov\u00e9, je\u017e dlouhodob\u011b spolupracuje se Spole\u010dnost\u00ed rodi\u010d\u016f a p\u0159\u00e1tel d\u011bt\u00ed s DS a re\u017eijn\u011b a scen\u00e1risticky p\u0159ipravuje divadeln\u00ed p\u0159edstaven\u00ed, do nich\u017e jsou jako herci zapojeni pr\u00e1v\u011b mlad\u00ed s DS.<\/p>\n

A byla to ona, kter\u00e1 zre\u017e\u00edrovala do n\u00e1padit\u00e9 f\u00e9rie slavnostn\u00ed p\u0159edstaven\u00ed Dvacet let na cest\u011b, p\u0159i n\u011bm\u017e 22. \u0159\u00edjna \u010dlenov\u00e9 spole\u010dnosti a jejich p\u0159\u00e1tel\u00e9 oslavili kulat\u00e9 v\u00fdro\u010d\u00ed sv\u00e9ho trv\u00e1n\u00ed. Z\u00e1zem\u00ed poskytlo pra\u017esk\u00e9 Divadlo v Celetn\u00e9, a byl to jednozna\u010dn\u00fd sukces, kter\u00e9mu napomohli i mil\u00ed pr\u016fvodci \u2013 herci Jan Zadra\u017eil, patron Spole\u010dnosti rodi\u010d\u016f a d\u011bt\u00ed s DS, a Jan Potm\u011b\u0161il. Kniha byla pok\u0159t\u011bna na sc\u00e9n\u011b na z\u00e1v\u011br komponovan\u00e9ho po\u0159adu a m\u016f\u017eeme ji doporu\u010dit \u010dten\u00e1\u0159ov\u011b pozornosti.<\/p>\n

\u00bbNech\u0165 kniha otev\u0159e srdce lid\u00ed na cel\u00e9m sv\u011bt\u011b,\u00ab pop\u0159\u00e1l j\u00ed Jan Potm\u011b\u0161il.<\/p>\n

Pro\u017eili spolu stra\u0161n\u011b moc<\/p>\n

V\u00fd\u010det akc\u00ed a realizovan\u00fdch n\u00e1pad\u016f v pr\u016fb\u011bhu dvou des\u00edtek let je \u00factyhodn\u00fd. Zabral 16 hust\u011b popsan\u00fdch stran form\u00e1tu A4 v \u010dasopise Plus 21. Prvn\u00ed \u010d\u00edslo p\u0159edch\u016fdce tohoto periodika, Zpravodaje, jen\u017e poskytoval zejm\u00e9na rodi\u010d\u016fm d\u011bt\u00ed s DS \u0159adu cenn\u00fdch informac\u00ed, vy\u0161lo tak\u00e9 p\u0159ed dvaceti lety, tak\u017ee d\u016fvod na oslavu je hned dvoj\u00ed. Zpravodaj se postupn\u011b p\u0159etvo\u0159il v pestr\u00fd a vpravd\u011b reprezentativn\u00ed \u010dasopis Plus 21, na jeho\u017e str\u00e1nk\u00e1ch se mohou um\u011blecky p\u0159edstavit – fotografiemi, esejemi, b\u00e1sn\u011bmi, pov\u00eddkami \u010di obr\u00e1zky \u2013 d\u011bti a mlad\u00ed lid\u00e9 s DS.<\/p>\n

A co v\u0161echno nalezneme v dvacetilet\u00e9 bilanci \u010dinnosti Spole\u010dnosti rodi\u010d\u016f a p\u0159\u00e1tel? Setk\u00e1v\u00e1n\u00ed rodi\u010d\u016f a d\u011bt\u00ed, kter\u00fdch bylo nespo\u010detn\u011b, cvi\u010den\u00ed, p\u0159edn\u00e1\u0161ky, zimn\u00ed a letn\u00ed pobytov\u00e9 akce, pozn\u00e1vac\u00ed z\u00e1jezdy, vyd\u00e1v\u00e1n\u00ed knih autor\u016f s DS v\u010detn\u011b prezentace na kni\u017en\u00edm veletrhu, kurzy, spole\u010densk\u00e9 ve\u010dery, po\u0159izov\u00e1n\u00ed videodokument\u016f, semin\u00e1\u0159e pro lektory a pedagogy \u0161kol, dobro\u010dinn\u00e9 bazary, koncerty, \u00fa\u010dast na zahrani\u010dn\u00edch kongresech a konferenc\u00edch (Spole\u010dnost je od roku 1999 \u010dlenem Evropsk\u00e9 asociace DS jako jedin\u00e9 sdru\u017een\u00ed z \u010cR), program na Sv\u011btov\u00fd den Downova syndromu, aukce obraz\u016f d\u011bt\u00ed s DS, divadeln\u00ed p\u0159edstaven\u00ed… Klobouk dol\u016f!<\/p>\n

V \u010dele Spole\u010dnosti stoj\u00ed docentka Dagmar Dz\u00farov\u00e1. Zeptali jsme se j\u00ed, co j\u00ed osobn\u011b \u010dinnost v tomto spolku dala. \u00bbV prvn\u00ed f\u00e1zi, po narozen\u00ed na\u0161eho t\u0159et\u00edho syna (narodil se s DS), mi pr\u00e1v\u011b pr\u00e1ce pro druh\u00e9 jednozna\u010dn\u011b pomohla s vlastn\u00edm vyrovn\u00e1n\u00edm a p\u0159ijet\u00edm reality narozen\u00ed na\u0161eho d\u00edt\u011bte s \u201an\u00e1lepkou\u2018 DS. Sb\u00edr\u00e1n\u00ed zku\u0161enost\u00ed, t\u0159\u00edben\u00ed n\u00e1zor\u016f a seskupov\u00e1n\u00ed d\u0159\u00edve si zcela nezn\u00e1m\u00fdch lid\u00ed \u00fazce souviselo se vznikaj\u00edc\u00ed organizac\u00ed. Nem\u011bli jsme jako rodi\u010de nic, ale m\u011bli jsme p\u0159ed sebou jasn\u00fd c\u00edl – zm\u011bnit \u201asv\u011bt\u2018 tak, aby byl vst\u0159\u00edcn\u011bj\u0161\u00ed a vn\u00edmav\u011bj\u0161\u00ed k t\u011bm, co to pot\u0159ebuj\u00ed. Moc dob\u0159e jsme v\u011bd\u011bli, \u017ee n\u011bco zm\u011bnit m\u016f\u017eeme pouze tehdy, kdy\u017e se jako rodi\u010de spoj\u00edme a p\u016fjdeme k c\u00edli spole\u010dn\u011b. A to se tak\u00e9 stalo. Za dvacet let se mnoh\u00e9 poda\u0159ilo a my jsme spole\u010dn\u011b pro\u017eili stra\u0161n\u011b moc! Na\u0161e d\u011bti, a to nejen ty s DS, maj\u00ed v rodi\u010dovsk\u00e9 skupin\u011b siln\u00e9 z\u00e1zem\u00ed. A to je jist\u011b mimo\u0159\u00e1dn\u00e1 deviza.\u00ab<\/p>\n

A co bylo pro ni nejv\u011bt\u0161\u00edm o\u0159\u00ed\u0161kem za uplynul\u00fdch dvacet let? \u00bb\u00dam\u011brn\u011b v\u011bku na\u0161ich d\u011bt\u00ed jsme \u0159e\u0161ili integraci do p\u0159ed\u0161koln\u00edch za\u0159\u00edzen\u00ed, n\u00e1sledn\u011b p\u0159\u00edpravu na \u0161koln\u00ed integraci a posl\u00e9ze p\u0159echod ze \u0161koly do zam\u011bstn\u00e1n\u00ed. V ka\u017ed\u00e9 f\u00e1zi jsme p\u0159ekon\u00e1vali nejr\u016fzn\u011bj\u0161\u00ed p\u0159ek\u00e1\u017eky a z\u00e1rove\u0148 se radovali z drobn\u00fdch \u00fasp\u011bch\u016f. Ne nadarmo se ale \u0159\u00edk\u00e1: \u201amal\u00e9 d\u011bti, mal\u00e9 probl\u00e9my\u2018, a je to pravda i v r\u00e1mci \u010dinnosti na\u0161\u00ed rodi\u010dovsk\u00e9 spole\u010dnosti. Nyn\u00ed po dvaceti letech d\u011bti \u010dlen\u016f veden\u00ed organizace dosp\u011bly do dosp\u011bl\u00e9ho v\u011bku a my se je sna\u017e\u00edme co nejl\u00e9pe p\u0159ipravit pro \u017eivot v dosp\u011blosti. Te\u010f je p\u0159ed n\u00e1mi tedy tento \u201ao\u0159\u00ed\u0161ek\u2018 \u2013 naj\u00edt vhodn\u00e9 pracovn\u00ed prost\u0159ed\u00ed, kde by zam\u011bstnanci m\u011bli pochopen\u00ed a empatii pro spolupracovn\u00edka, kter\u00fd je trochu jin\u00fd, pomalej\u0161\u00ed, ale ka\u017edop\u00e1dn\u011b je \u010dlov\u011bkem s otev\u0159en\u00fdm srdcem pro v\u0161echny.\u00ab<\/p>\n

A to je i \u00fakol pro celou na\u0161i zemi a jej\u00ed p\u0159edstavitele. A\u010dkoli mnoz\u00ed mlad\u00ed lid\u00e9 s DS \u00fasp\u011b\u0161n\u011b absolvovali \u0161koln\u00ed doch\u00e1zku a z\u00edskali solidn\u00ed vzd\u011bl\u00e1n\u00ed, co\u017e je i p\u0159\u00edb\u011bh 29let\u00e9 sle\u010dny Kate\u0159iny z Prahy, maturantky a absolventky dvou vy\u0161\u0161\u00edch odborn\u00fdch \u0161kol, t\u011b\u017eko si hledaj\u00ed pracovn\u00ed uplatn\u011bn\u00ed. \u00bbMo\u017enost pracovat mezi b\u011b\u017enou spole\u010dnost\u00ed je naprosto v\u00fdjime\u010dn\u00e1. A tak dlouholet\u00e1 doch\u00e1zka do \u0161koly \u2013 mnohdy do 25 let \u2013 nen\u00ed vyu\u017eita a mnoz\u00ed z\u016fst\u00e1vaj\u00ed doma s invalidn\u00edm d\u016fchodem,\u00ab uvedla dosti zarmoucen\u011b Miloslava Star\u00e1\u2026 Zm\u011bn\u00edme to?<\/p>\n

I kdy\u017e sleduji ji\u017e n\u011bjak\u00fd \u010das, tak trochu zpovzd\u00e1l\u00ed, aktivity Spole\u010dnosti rodi\u010d\u016f a p\u0159\u00e1tel d\u011bt\u00ed s Downov\u00fdm syndromem (DownSyndrom CZ), je pro m\u011b v\u017edy velk\u00fdm p\u0159ekvapen\u00edm, co v\u0161echno \u00bbmal\u00ed i velc\u00ed\u00ab lid\u00e9, sdru\u017een\u00ed v t\u00e9to organizaci, dok\u00e1\u017eou vymyslet a zorganizovat, jak pest\u0159e vypl\u0148uj\u00ed spolu pro\u017eit\u00e9 dny. Dvac\u00e1t\u00e9 narozeniny, kter\u00e9 spolek pr\u00e1v\u011b slav\u00ed, jsou p\u0159\u00edle\u017eitost\u00ed se za jeho bohatou a velmi smysluplnou \u010dinnost\u00ed ohl\u00e9dnout.<\/p>\n

TRIZOMIE 21 Down\u016fv syndrom je nejobvyklej\u0161\u00ed vrozen\u00e1 chromozom\u00e1ln\u00ed anom\u00e1lie. Doch\u00e1z\u00ed k n\u00ed nej\u010dast\u011bji p\u0159i splynut\u00ed vaj\u00ed\u010dka a spermie, kdy hned v prvotn\u00ed bu\u0148ce z\u016fstane chromozom nav\u00edc a ka\u017ed\u00e1 dal\u0161\u00ed bu\u0148ka pak pokra\u010duje v d\u011blen\u00ed ji\u017e s touto vadou. Velmi vz\u00e1cn\u011b (asi v 1 % p\u0159\u00edpad\u016f Downova syndromu) anom\u00e1lie vznik\u00e1 a\u017e p\u0159i pozd\u011bj\u0161\u00edm d\u011blen\u00ed, a proto je nadbyte\u010dn\u00fd chromozom p\u0159\u00edtomen jen v n\u011bkter\u00fdch bu\u0148k\u00e1ch t\u011bla. V tomto p\u0159\u00edpad\u011b se jedn\u00e1 o takzvan\u00fd mozaicismus. V p\u0159\u00edpad\u011b Downova syndromu \u00bbp\u0159eb\u00fdv\u00e1\u00ab 21. chromozom. Ka\u017ed\u00e1 bu\u0148ka osoby s Downov\u00fdm syndromem tedy obsahuje t\u0159i 21. chromozomy (nam\u00edsto obvykl\u00fdch dvou). Proto se Down\u016fv syndrom ozna\u010duje tak\u00e9 jako trizomie (ztrojen\u00ed) 21. chromozomu, zkr\u00e1cen\u011b trizomie 21. B\u011b\u017en\u00e1 zdrav\u00e1 lidsk\u00e1 bu\u0148ka obsahuje 46 chromozom\u016f ve 23 p\u00e1rech, zat\u00edmco bu\u0148ka d\u00edt\u011bte s Downov\u00fdm syndromem m\u00e1 chromozom\u016f dohromady 47. Nadbyte\u010dn\u00fd 21. chromozom b\u00fdv\u00e1 nej\u010dast\u011bji voln\u011b p\u0159\u00edtomen v bun\u011b\u010dn\u00e9m j\u00e1d\u0159e. Zdroj: www.downsyndrom.cz<\/p>\n

Monika HO\u0158EN\u00cd
\nHal\u00f3 noviny<\/p>\n","protected":false},"excerpt":{"rendered":"

Tuto organizaci s celost\u00e1tn\u00ed p\u016fsobnost\u00ed tvo\u0159\u00ed skv\u011bl\u00ed a siln\u00ed lid\u00e9, kte\u0159\u00ed se dok\u00e1zali vyrovnat s t\u00edm, \u017ee se jim narodily d\u011bti s chromozom\u00e1ln\u00ed aberac\u00ed (v\u00edce […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":19903,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-26742","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/26742","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=26742"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/26742\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/19903"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=26742"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=26742"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=26742"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}