6. A Rett-szindrómás gyermekek oktatása, lehetőségek, korlátok

„Rett-szindrómás gyermekekkel csak úgy lehet és szabad foglalkozni, ha elismerjük őket, mint értelmes, gondolkodni tudó egyéneket, csak lehetségessé kell tenni számukra az iskolarendszerbe való beilleszkedés, kihasználva a gyógypedagógia nyújtotta lehetőségeket.”
PharmDr. Šimaljak Mária
a Szlovák Rett Szindróma Alapítvány elnöke/

    Ha a RSZ-ás gyermekek oktatási lehetőségeiről kell beszélnem, mindig nagyon nehéz nyugodtnak maradnom. Szinte elképzelhetetlenül nehéz számukra megfelelő intézményt találni, olyat, ahol speciális oktatásban részesülhetnek, ahol szeretettel várják őket, biztonságban lehetnek, és még sorolhatnám. Ehelyett a szülőknek nap, mint nap meg kell küzdeni az adott helyért, és bizonygatni azt, hogy nekik is jár a megfelelő oktatás, fejlesztés.
    Borzasztónak találom azt, hogy manapság megfeledkezünk arról, hogy a gyógypedagógia körébe nemcsak a tanulásban akadályozottak, és az értelmileg akadályozottak tartoznak, hanem a halmozottan sérültek is! A gyógypedagógiában eddig eltöltött 13 év alatt sajnálatosan azt kellett tapasztalnom, hogy ezt a kollégák, és a felettesek egy része elfeledi (az állam is a törvényhozásnál…), hiszen az ilyen területeken végzett munka nem látványos, nincs egyik napról a másikra tapasztalható ugrásszerű fejlődés, s nem láttatják a mögötte rejlő hatalmas munkát, egyesek talán meg is kérdőjelezik, néhányan pedig feleslegesnek is tartják azt.
     Ezen a gondolkodásmódon változtatni kell, hiszen ilyen morállal olyan emberpalánták élete fölött döntünk, amiről fogalmunk sincs, megkockáztatom, még akkor sem, ha ilyen gyermekekkel foglalkozunk, hát még akkor, ha nem is ismerjük közelebbről ezt a csoportot. Gondoljunk csak bele: mi hogyan élhetnénk teljes életet halmozottan sérülten, a világtól elzárva, esetleg utálattal, undorral körbevéve, elutasítva, kitaszítva, meg nem értve? A kulcsszó minden szinten a SZERETET.
Tapasztalataim alapján a szakembernek jól kell ismerni, és főleg szeretnie kell a gyermeket! A sérült gyermek nem egy nyitott könyv. Hosszú út vezet a szeretet útján addig a pontig, amíg végre kinyithatjuk a „könyvet” - a gyermeket. S ha már megnyílt, ismét nagyon hosszú az út addig a pontig, sok-sok oldal elolvasása után, amikor végre azt mondhatom: már ismerem a csemetém, tudom mi a feladatom vele. Ezt minden gyógypedagógusnak meg kell tapasztalnia ahhoz, hogy jól tudjon majd együttműködni a gyermekkel. De ez szeretet nélkül nem megy!
    A RSZ-ás gyermekek fejlesztésének alapkövetelménye a minél korábbi életkorban
(rögtön a diagnózis után, vagy már akkor, mikor még csak sejtjük, hogy valami nincs rendben) elkezdett komplex fejlesztések sorozata, hiszen a tapasztalatok szerint jókora előnyben vannak azok a „rettes” lányok, akiknél már kora gyermekkorban odafigyeltek erre.

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