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Carta a Padrinos – Primer Semestre de 2015

Bella unión 10/8/15 Queridos padrinos, queridos compañeros todos: Con atraso va el balance del primer semestre, o mejor dicho ya de los primeros 7 meses. Les contamos que fueron unos meses muy ricos, con muchas dificultades, con niños nuevos, algunos con patologías muy severas, con dificultades económicas, pero también  muchísimas cosas positivas, los niños que mejoran en su rehabilitación, los padres mas comprometidos. Bueno, yendo por partes, tenemos más niños y cada día se nos arrima una familia nueva. Siguen los niños y jóvenes que ya iban y estos meses ingresaron niños nuevos. Benjamín y Santiago, 2 años, gemelares muy prematuros, con parálisis cerebral, uno habla y no camina y el otro camina con dificultad pero no habla, los 2 van a fisioterapia, fonoaudióloga y equinoterapia. Son dos tiernos y se están integrando bien. Ingreso también Devora,  una nena  de 6 años con mielomeningocele e hidrocefalia severa (la misma enfermedad que Raquel) camina con andador, operada ya varias veces y con todas las otras complicaciones de su enfermedad, problemas urinarios, intestinales. Pero también tiene una fuerza tremenda y con su andador logra hasta correr. Va a fisioterapia y gimnasia especial para niños con problemas motores.                                                                                                                                                                Se sumo Aldo  joven de 26 años no vidente, Aldo toca el órgano y canta muy lindo,  todo de oído. Canto con león Giecco cuando estuvo en Bella unión.                                                                                       En el caso de el estamos tratando de que mejore lo que él sabe hacer y le gusta que es la música. También estamos estimulándolo para que complete liceo.                                                                                       Otra chiquita nueva es Elsa, niña de 6 años autista muy severa, no está 1 minuto quieta, no se concentra y tiene reacciones muy violentas, no habla, solo da gritos.                              La habían rechazado en otros institutos aquí y en Salto. Nosotros decidimos aceptarla, trabaja con ella la fonoaudióloga, el psicomotricista y el profesor de baile, estos 2 últimos lograron un mínimo vínculo, la fonoaudióloga todavía no.  Es un caso muy difícil. Queremos probar con la equinoterapia. Nos paramos en contarles detalles de las patologías que tiene y como ingresaron para que después puedan seguir su evolución. Y hay 3  niños más que recién pusieron los papeles en el BPS y están para entrar, quizás el mes que viene. Entre las dificultades estaba la económica que ya la hemos comentado. Cuando los técnicos subieron el costo de las secciones, se puso difícil y 1 mes nosotros tuvimos que sacar un préstamo para pagarles a todos.  El susto fue grande, la realidad nos decía que no se podía seguir sosteniendo, no podíamos sacar más préstamos, habría que cerrarlo.     No se podía bancar, porque lo del BPS da para pagar un técnico y todos tienen mínimo 2 técnicos.  Este tema nos quito más de una noche el sueño.                                                                                                                                                                                       Pero a su vez  ni pensar en cerrarlo,  todos nos negábamos a pensarlo, quedarían todos los niños en banda, lo más cerca es Salto.  Había que encontrar una salida.                                                                                                       Y ahí el equipo que es voluntario, los talleristas y las familias todas juntas, redoblaron los esfuerzos y se ha podido bancar el presupuesto, el aporte de ustedes ha sido muy importante.   Y retoños sigue en pie y creciendo en niños y jóvenes.                                                      Hicimos un bingo, una olla criolla, y juntos todos estamos preparando el día del niño y ya la próxima actividad de finanzas, que será otro bingo.                                                                                                         Otra actividad linda fue que Jonathan pudo hacer un curso de instructor de zumba  en Montevideo, con el apoyo de Padrinos, curso que ya lo está volcando en los niños                                                                                                                                                                  Si tuviéramos que resumir diríamos que el balance es muy positivo, cada día el equipo está más comprometido con los niños, vemos todos los casos en conjunto, los difíciles como el caso de Elsa lo vemos en equipo, leemos, estudiamos, entramos en internet buscando casos parecidos. Los padres comprometidos con las actividades, a pesar de que son padres con su vida muy complicada por la enfermedad de sus hijos. Claro como todas las cosas hay algún padre que te cuesta arrimar, está en su problema, pero la mayoría responde. Y el saldo positivo es la experiencia de organizarse y luchar juntos.                                                                                                                                                                 Tienen claro que el estado tendría a apoyar más la rehabilitación de sus hijos, pero al mismo tiempo hoy hay que rehabilitarlos, mañana es tarde, de ahí la necesidad de sumar esfuerzos. Y respeto a los niños y jóvenes no solo queremos que logren hablar bien, o mejoren su marcha. Tratamos de que a pesar de su discapacidad logren encontrar su vocación. Logren descubrir en que se pueden desarrollar más. Porque todos tienen un área donde son más capaces En esa búsqueda los acompañamos.                                                                                       Muchas veces creamos, otros aprendemos por internet. Nos paso que buscando mas información actual sobre mielomengocele, yo tuve un hallazgo casual, veo “niño con mielo meningocele baila en silla de ruedas”, a partir de ahí logramos entrar en una serie de video de danzas en silla de ruedas, concursos internacionales etc. Aquí en Uruguay no hay nada y lo que hacían Raquel y Jonathan era todo inventado por ellos. Ya pasamos el fin de semana con mucho entusiasmo, Jona y Raquel viendo los videos  buscando figuras, y otras técnicas que ellos pueden probar de hacer.                                                                     ¿Que nos proponemos para adelante? Seguir mejorando la rehabilitación de nuestros niños y jóvenes, acompañándolos en su búsqueda de herramientas para lograr cada día más autonomía.   Y respeto a la infraestructura, nos planteamos un nuevo desafío, ampliar el centro infantil de “retoños”, hacer 2 piezas una para que la fonoaudióloga trabaje tranquila y otra para la maestra de apoyo.   Todo esto luchando siempre por la inclusión, pero en base a organizarnos mejor y  sumar pequeños- grandes esfuerzos. Y en todo este proceso de los que más aprendemos es de los mismos niños, son soles, están siempre luchándola y ellos te dan fuerza. Nos paramos en contarles todo esto porque ustedes son parte muy activa de la familia de Retoños, son parte de este esfuerzo, y por eso queríamos compartir a fondo lo que estamos viviendo.                               Gracias por estar cerca a pesar de la lejanía.                                                                      Gracias en nombre de todos estos chiquitos. Seguimos juntos Un abrazo que los abarque a todos

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