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Sol, que día lindo, ¿verdad? Oh! El día está bello. Bello.

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Gracias por invitarme a este restaurant hoy. ¿Tú vas a pagar por la comida?

3
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No, no, no.  ésa la pagas tú...ésa la pagas tú.

4
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Ay, Dios, no...Pero, yo siempre estoy pagando, chica.

5
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No, no, no. No me digas eso. No me digas eso. Además, tú eres de esta area.

6
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Yo soy de Harrisburg...Tú conoces...Bueno, pues está bien...Entonces yo invito hoy.

7
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Así, así está bien. Pero, qué bueno encontrarnos otra vez en Gettysburg.

8
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¿Te acuerdas del programa que tuvimos aquí la última vez?

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Sí. La última vez que grabamos, esto,

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lo hicimos, pues...Me parece que la información que se compartió estuvo...estuvo buena.

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Un poco formal, pero ése era el formato que teniamos en mente.

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No, y que queríamos dar información.

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La información que dimos fue una información bastante buena para la comunidad de aquí de Adams County.

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Sí, y yo personalmente aprendí mucho también sobre algunos de los problemas que hay y obstáculos que enfrentan los padres.

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Adriana me ha mencionado muchísimo...Ella tuvo que salir un momentito, pero...

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De hecho, ella fue la que me hizo la invitación para,

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para venir aquí a encontrarnos nuevamente a hablar, esto...sí. Qué bueno. Está bien; qué bueno.

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Yo creo que ese seguimiento que nosotros tengamos aquí en Adams County va a ser

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bastante bueno para el programa que ellos están empezando. Sí, sí definitivamente.

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Así que tenemos que seguir viniendo y dándole el apoyo a ellos porque lo van a necesitar para poder empezar.

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Sí, sí. Y para mi es un placer venir a una comunidad que nos han dado la bienvenida con las manos abiertas.

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A mí también. No, y que tú sabes que estamos trabajando para, para las pers-  para nuestra gente

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y también para lo que nosotros hacemos personalmente ahora, actualmente. So,

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Sí, definitivamente. Adriana mencionó que quizás Yeimi y Rosemary, iban, iban a venir.

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¿A venir? ¿O sí? Sí, sí, sí. Qué bueno. Pues vamos a tener el comité completo.

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Sí. Vamos a tener el grupo, el grupo completo nuevamente. Adiós y de hecho...

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¡Mira, mira! Mira quiénes, quiénes están aquí. ¡Hola!...¡Hola!

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¿Cómo están? Bien. ¿Y, usted? ¡Qué milagro! Bien, bien gracias. Qué bueno encontrarnos aquí nuevamente.

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Un día hermosísimo. Bellísimo, bellísimo.

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Y de pura casualidad que estamos aquí, aquí hoy. Mjum

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Esto, que les...Han pasado unas cuantas semanas del último programa. ¿Qué pensaron sobre eso después del programa?

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Bueno, fue un programa bien informativo.

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Este, ahí las personas pueden conseguir, este, información y

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las organizaciones que son las que trabajan con los diferentes tipos de problemas para que puedan llamar.

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Además, está Yeimi que tiene mucha información ahí, este...Y, también está el centro hispano. Claro

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Y, Adriana, tú. ¿Qué piensas sobre lo que discutimos la última vez?

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Pues es una oportunidad...una oportunidad para las familias, para las personas,

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incluso para las mismas personas que tiene una discapacidad y este, necesitan ayuda.

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Necesitan dónde buscar qué servicios hay, este, para sentirse un poquito más integrados en la comunidad.

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A, de hecho, cuando hablamos por teléfono durante la semana, me mencionaste que

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estaban planificando una, una reunion en Manos Unidas con algunos padres.

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Sí. Son familias que están interesadas en saber un poquito más.

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Algunos ya tienen un poquito de experiencia con otros grupos que desafortunadamente pues, desaparecieron.

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Pero están interesadas en, en tener más información, compartir ideas entre unas familias y otras, este,

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para buscar la mejor manera de hacer que los niños vayan funcionando y se vayan entendiendo un poquito más sus...

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limitaciones y, y, y adonde ellos pueden buscar la mejor forma de, de ayudarlos.

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Y, y qué casualidad que ustedes están pensando comenzar el grupo “Tocando Puertas.” Exacto.

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Y fue algo bien específico porque era una moda especialista en temas que

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son importantes para los niños que tienen discapacidades y como acceder a los servicios.

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Fue algo que las familias encontraron muy útil y después de eso hemos tenido la oportunidad de explorar otros temas

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relacionados a las necesidades específicas con el grupo.

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Yo creo que todos se van a beneficiar. Van a tener un lugar adonde poder ir.

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Sí. Camino de regreso a la oficina, Nate y yo, estuvimos hablando sobre, sobre el programa.

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Y, y nos dimos cuenta que ustedes no tuvieron gran oportunidad para hablar sobre el...Casos personales.

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Su caso personal o lo individual que ustedes han confrontado; lo mencionaron así de pasada pero,

56
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a nosotros nos gusta tener más detalles porque así conocemos mejor a la comunidad, las necesidades,

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esto, y sé que cada una tiene, tiene una historia que contar.

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Y yo creo que el grupo también que, que está, que se está poniendo,

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eso es algo que, que es bueno traer eso a la mesa; de los casos personales, las cosas que nosotros

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en nuestras vidas personales para, para hablarlo

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porque así entonces todo el mundo pues, tiene la oportunidad de expresar...

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Muchas veces, tú sabes, las personas que están viviendo con familiares que tienen discapacidades pues se, se deprimen porque no tiene con quién comunicarse.

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no encuentran una persona que tenga los mismos, la misma situación.

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Entonces cuando se encuentran en un grupo así como ése que se llama "Tocando Puertas"

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que ellos, donde ellos puedan venir y comunicar y hablar

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sobre los temas personales que están... las experiencias que están pasando en su hogar,

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pues le da la oportunidad a ellos de

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expresarse y de sacarse todo ese estrés y relajarse un poquito más y buscar información también.

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Pues estábamos hablando sobre eso y yo, creo que es uno de los temas que nosotros queremos

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que las personas que están pasando por esa experiencia hablan y se comuniquen porque es importante.

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Sí, por ejemplo, la semana pasada, yo sufrí una pérdida.

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Un médico bien cercano a mí falleció...

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un ataque al corazón fulminante.

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Y yo nunca pensé que me fuera a afectar de esa manera. Un hombre robusto,

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hacía sus ejercicios. Y de la noche a la mañana pues, falleció.

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Y me hubiese gustado tener acceso al grupo.

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Porque la semana se me hizo, se me hizo bien difícil. Me hubiese gustado tener con quien compartir.

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Porque de la depresión encuentra a uno muchas veces.

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Sí, así mismo es. Ya.

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Esto, así eventos inesperados, entonces uno necesita con quien desa...desahogarse. Sí.

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Bueno, yo sí te puedo decir que

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yo llevo diez, más de diez años con la situación de mi hijo.

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Y, he hablado con muchas personas, he hablado con muchas organizaciones.

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Y, yo entiendo verdad que la misión...está ahí la misión de cada organización.

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Pero también entiendo que las personas que trabajan en esa organización son bien importantes para que ésa misión se lleve a cabo.

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Te puedo decir que mi hijo, es un niño, un jóven voy a decir, que tiene veintiún años.

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Y él, su capacidad es como de un niño pequeño.

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Ahora, yo entiendo que todo el mundo está sobrecargado, todo el mundo tiene problema etcétera, etcétera.

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Pero, hay que tomar tiempo para mirar las necesidades de cada indivíduo

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porque a veces no toman en cuenta eso. Pues, por el trabajo que tienen a diario o por el quehacer y por...etcétera.

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Tantas cosas que pasan. Yo te puedo decir que a mí no se me ha hecho fácil.

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O sea, yo he caminado, he pasado, cosas que no se las desearía a nadie.

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Pero, pues, en este caminar que llevamos en la vida, pues aprendemos, ¿verdad? a través de ciertas experiencias que nosotros pasamos.

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Mi hijo, tiene una condición de esquizofrenia "slash" retardación mental.

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Y él no fue bien acogido en la escuela.

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Él estuvo una,...¿cómo le digo?...un percance hace ya como un año atrás

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en el cual, pues, de ése percance sale a relucir, pues que le ponen cargos a mi hijo. O sea, mi hijo sale de NHS of York con cargos.

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Y de ahí va mi hijo preso. Y mi hijo está preso actualmente con una disabilidad. Y no, y no tiene...

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O sea, donde él está,  él no tiene los recursos, no tiene...O sea, no están las personas adecuadas ni el lugar para tratarlo a él.

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Tan solo porque tiene una disca...una discapacidad, un "disability" este, es tratado diferente.

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O sea, no miran...ellos no miran la discapacidad que él tiene.

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Ellos miran, pues, que él hizo tal o cual cosa. Pero, vamos a analizar el problema.

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Vamos a ver cuál es su condición. Vamos a ir más allá de los hechos.

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No vamos a tratar a todo el mundo con la misma vara. Bueno, en este momento y que estamos hablando de esto, yo les quiero, este...

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enseñar unas cositas de las que él me ha enviado a mí en el tiempo que ha estado en éstos lugares. ¿Okay? Miren.

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00:10:17,719 --> 00:10:21,610
Ésta es una de ellas. O sea, que esos son regalitos que él me envía.

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O sea, que él hace unas actividades,...hace actividades y entonces él pues me envía con lo poquito que él tiene...

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Son actividades que hacen en...En los lugares que ha estado.

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Esto, no sé si la pregunta es...está fuera de lugar, pero me imagino que a ti como madre, todo esto tiene que, que haberte afectado.

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Esto es una, por lo que me dices, una lucha a largo plazo.

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Esto, ¿cómo, cómo te has sentido tú y cómo has lidiado con esta carga?

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Me imagino que...creo que así fue como lo mencionastes al principio.

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Bueno, sí, te puedo decir que Dios...primeramente, Dios.

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Porque en el tiempo que estamos viviendo, como te dije anteriormente, no...

115
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Es bien difícil. Vamos a decir es bien difícil encontrar personas que de verdad le interese

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el ser humano, que le interese pues, este, los problemas de otra persona; o que tenga el tiempo para eso.

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O sea, yo sí me he topado con personas muy buenas. O sea, en algunas organizaciones como...este, "MH/MR".

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Ahí yo tuve, ahí yo tuve unas grandes personas que estuvieron conmigo en momentos claves, en momentos difíciles.

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Como cuando tuve que llevar a mi hijo a emergencia para que hicieran una "three o two" un tres cero dos; para internarlo. O sea, yo...

120
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Eso es básicamente internarlo en una facilidad psiquiátrica.

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00:11:54,623 --> 00:12:02,289
¡Ajá!  Que, eso estamos hablando que, cuando una entra a un hospital, ya sea de Gettysburg o ya sea de York, eso es para estar toda la noche ahí.

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00:12:03,289 --> 00:12:09,044
O sea, eso no es fácil. O sea, estamos lidiando que uno…como madre, uno tiene muchas cosas en su mente.

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Mjum.  ¿Que si su hijo estará bien, con quién está, hacia donde va?

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Y me imagino también el cuestionamiento que si estoy haciendo lo correcto.

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Lo correcto.  Si estoy haciendo lo que lo va a beneficiar.

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Mjum.  Este, me imagino que ese cuestionamiento tiene que estar ahí en la mente.  Sí.

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Eso está ahí pero, pues, yo le doy gracias a Dios que hasta aquí el Señor me ha dado la capacidad de yo poder lidiar con esto. Porque no, no es fácil...Sí, sí.

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No es fácil y cada vez que "toco puertas," como hace Adriana allá en York, York Springs...

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Cada vez que he tocado puertas, muchas de ellas no se abren así tan fácilmente.

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O...cuando trato de conectarme con una persona, está muy ocupada, está en reuniones, etcétera, etcétera.

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Sí. Así que me imagino que el grupo de apoyo Tocando Puertas te vendría a ti de maravilla...Mjum, mjum.

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Porque todavía tu continúas con la lucha por...por tu hijo pues en conseguirle los servicios apropiados.

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Y me imagino que necesitas un espacio para, para desahogarte.

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O sí.  Y gracias al Señor también por mi trabajo.

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Este...en mi trabajo yo también ayudo a otras personas que como yo,

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están pasando o han pasado por lo mismo y tocan a mi puerta y yo pues, en lo mejor que pueda hacerlo, ayudo.

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Sí. Así que es una situación bien, bien difícil esto...

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Adriana, ¿cuál es la situación tuya...¿Cuál es tú batalla?, vamos a decir.

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{risa} Pues yo...mi batalla es... {se esclarece la garganta}

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Como lo he comentado algunas veces, cuando una persona tiene una discapacidad física, todos lo podemos ver.

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Sí.  Pero cuando existe una discapacidad mental, no se ve.

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Y desafortunadamente, ese tipo de discapacidades, se pueden considerar que son más complicadas.

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Mjum.  Porque son más difíciles de encontrar tratamiento, son más difíciles de llevarles un seguimiento,

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más difícil de encontrar la persona correcta para hacer un diagnóstico, para hacer un tratamiento, este...

145
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o los lugares precisos para, para ese tipo.

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Yo, en mi caso, este...está relacionada a una condición médica con una...condición mental.

147
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Y yo tengo que lidiar con una batalla médica por una condición médica y por una condición mental.

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Que a la misma vez, cuando tu unes esas condiciones este...pues tu quisieras encontrarle la solución a todas.  Sí.

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en el caso mío, por parte de una condición física,...

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es muy difícil cuando es una condición que no hay mucha experiencia en eso.

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Entonces yo siempre estoy tratando de buscar un futuro o cuál puede ser el futuro más próximo.

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En el caso mío, una persona con una condición médica como la que tiene mi hija, la persona que yo conozco con más años tiene diecinueve.

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Entonces yo miro a esa muchacha y yo digo la esperanza de vida en mi hija {risa} son diecinueve.

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Porque si yo busco más de diecinueve años, no encuentro una...un tipo de vida, una calidad de vida distinta.

155
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Y este concepto de la normalidad. ¿Quién define eso?

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00:15:58,927 --> 00:16:07,267
Eso en...en...realidad no existe. Porque lo que...Eso de la normalidad lo define la mayoría.

157
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Bueno, pero ¿quién, quién dice que la manera de una persona que es diferente que no es, que eso no es normal?

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Eso es normal para esa persona.  Sí.

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Esto, las amistades, los, los padres, los parientes más cercanos, aceptan eso como normal para esa persona

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y entonces tratan de apoyarlo,...tratan de conseguir que ellos se superen.

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Y no lo ven como que "Oh, eso es abnormal," "pues tenemos que mantener a la persona, sea un adulto o sea un niño,

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encerrado en la casa, que nadie lo puede ver," " eso es vergonzoso."  Esto...

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la última vez hablamos sobre los estigmas y los estereotipos.

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00:16:53,569 --> 00:17:02,369
Esto...y me parece que una de las cosas que debemos hacer es cambiar la definición de lo que es normal.

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Ampliarla. Que cada persona es un indivíduo y...de la forma que cada persona actúa pues, eso es lo...puede ser lo normal para esa persona.

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Pues yo aprendí este, cuando yo estuve estudiando, yo aprendí pues, por parte de varios doctores que no se debe de decir normal.

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Ellos nos decían, "Cuando ustedes miren a una persona que digan es sana.

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No se dice sana; es aparentemente sana." Porque tú muchas veces no sabes lo que ellos traen por dentro.

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Tú los puedes mirar aparentemente sanos, hasta que haces un diagnóstico te das cuenta que esa persona tiene una enfermedad.

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Entonces ellos nos decían que no nos debemos referir a una persona como normal; es "aparentemente normal."

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Y, y en parte es eso. Cuando la familia...pues cuando la familia en realidad entiende la situación

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es muy bueno porque ayuda bastante a que la persona con una discapacidad se sienta aceptada.

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parte de el grupo Tocando Puertas para las familias con una discapacidad, es...no podemos decir que es otra familia, no.

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Pero podemos decir que es un lugar donde, la gente se puede sentir más cómoda

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porque hay más gentes que tienen tu mismo problema, más grave o menos grave.

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Entonces te va a entender un poquito mejor si tu dices

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"ay, es que esta mañana mi hijo hizo esto y yo pensé en esto y esto." Y la otra persona te puede decir "es que a veces yo pienso lo mismo."

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Pero si tú le platicas a una persona que no entiene una discapacidad, te va a decir "no le estás..." ...¡Dándote consejos!...

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Sí. "No lo estás educando bien."  Mjum.  "Si lo dejas salir del carril, vas a tener muchos problemas en el futuro."

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Mjum. "No lo estás alimentando bien; le das mucha azúcar; poca azúcar,...

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Sí. O sea, le buscamos...¿Cómo se puede decir? Le buscamos más

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culpas a otras cosas cuando en realidad no son culpas tampoco. O sea, es una situación...

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¡Pues es un mundo para ellos! Yo, algunas veces, yo lo veo como oportunidad de conocer un mundo

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que ellos miran de una forma distinta. Yo puedo ir y mirar un cuadro y, y todos podemos mirar el caballo.

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Pero tal vez una persona con una discapacidad puede mi- mirar en el caballo este,

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pues que está un poquito más gordo. Y a lo mejor todos lo miramos que está bien.

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Y el puede mirarlo de una forma distinta. El color yo lo puedo mirar...

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Quizás le puede ver una sonrisa al caballo y nosotros no.  (al unísono) Y nosotros no.

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O tal vez...Muchas de las veces miramos una pintura y tal vez una persona con una discapacidad puede mirar en un ojo un reflejo.

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Y nosotros decimos ¿pero qué estás pensando? ¿Cómo le encontraste eso?

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Porque entonces nosotros entendemos que también tenemos una pequeña discapacidad.

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No miramos...lo que otras personas pueden mirar.

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Entonces, yo le estaba platicando a Yeimi que yo este fin de semana yo estaba leyendo con mi hija mayor acerca de la vida de Albert Einstein.

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Y yo le decía a ella, "Fíjate, Albert Einstein era una persona que tenía un "I.Q." una inteligencia

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...Era un genio...bastante grande.  Era una persona muy inteligente.

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Pero cuando hablan de su vida,

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yo pienso que muchas familias como nosotras, con un hijo con una discapacidad, nos identificamos bastante.

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Porque él era un niño que fue...tardó...él empezó a hablar alrededor casi de los cinco años.

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Pero él no habló una palabra; él habló una frase cuando él empezó a hablar. Y los papás le dicen, "¿Pero, porqué tú no hablabas?"

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"Porque todo estaba bién y no necesitaba yo hablar."

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Entonces, él se consideraba él mismo como un pensador. Pero él no fue una persona amigable.

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No tuvo amigos. De hecho, lo sacaban de las escuelas porque no lo soportaban.

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Pero no era porque él no entendiera. Era porque su capacidad era más grande y aprendía más rápido.

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Y lo consideraban como retardado porque, no. Pero él miraba cosas que otras personas no miraban.

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Yo...yo le...explico a mi hija la grande, le digo que las personas aún siendo genios que tuvieron sus problemas mentales,

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algún tipo de discapacidad. Este,...pues a la misma vez tenía un...una mentalidad pues excelente.

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Porque gracias a esas personas vivimos como vivimos y tenemos lo que tenemos.

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Si seguimos así en la historia, me parece que todo mundo conoce el libro "El Quixote de la Mancha".  Sí.

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Cervantes padecía de depresión.

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Y lo consideraban loco...Exacto.  En ése tiempo lo considerban loco...que estaba loco porque vivía historias imaginarias.

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Exacto. En ése tiempo lo consideraba loco. Y escribió el libro que es una obra maestra en cuestión de la literatura Española;

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...nadia lo ha podido superar.  Sí, así es. 

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Y, yo pienso que es este...Como Yeimi me decia, cuando las personas tienen una discapacidad mental...

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no pueden con algunas cosas pero son excelentes en otras.  Sí.

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Y hay que levantar el lado excelente de ellos; no mirar que es inquieto y no se está en paz. Bueno,

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hay que buscarle dónde está su capacidad para moverla hacia ese lado.

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Si él es inquieto, dejarlo así pero buscar, explotar o explorar otras partes de ellos que pueden tal vez opacar lo que toda la gente ve como malo.

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Adriana, con permiso. Este, ¿cuál es la discapacidad que tiene tu niña?

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Precisamente yo le estaba comentando a Yeimi,...

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que el doctor a mi me, me dijo que ahora ella tiene...ella tiene "ADHD" que es el déficit de atención e hiperactividad.

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Pero ahor...pero hoy él me dice que ella tiene autismo con...¿Cómo le llaman, síndrome de Aspberg?  Aspergers.

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Entonces, para mi eso ahora es un poquito más complicado. El "ADHD",

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yo he buscado información y, y sé más o menos qué puedo hacer yo con ella para ayudarla.

224
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Ahora tengo que buscar información, qué puedo hacer con ella en esa otra parte.

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Pero, fíjate, tienes otro diagnóstico; tienes casi que empezar de, de nuevo; hacer tu propio estudio, tu propia investigación;

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pero un... algo que te puedo decir, es que en los últimos años se ha, se

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ha dado más concentración en el autismo. Y hay muchos más recursos disponibles.

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Así que, por esa parte,...Si podemos decir que es beneficioso...{risa}

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Desde el punto de vista de poder conseguir más recursos, de saber que el gobierno, a nivel federal y a nivel estatal,

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le están dando prioridad a ésa condición, pues, quizás se te va a hacer más fácil conseguir la ayuda necesaria para que la nena prospere.

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Sí, pero...Es difícil tragarlo. Sí

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porque, como yo le dije, es muy difícil cuando...cuando...muchas veces en la misma familia no te endienden.  Mjum, sí.

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Cuando yo voy a la escuela, y...todas esas, esos tipos de problemas mentales son considerados como molestos.

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"Es un niño molesto." "Es un niño que no hace caso." "Es un niño que pues,  no aprende lo que debería aprender." 

235
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Que es muy inquieto. {risa} Sí. Pero, este...

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Yo dejo las personas que van a hacer su trabajo hagan su trabajo pero yo también tengo que poner el mío.

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Entonces yo, yo voy, yo tengo que tratar de hacer lo posible por que...ella pueda mantenerse por ella misma lo más que ella pueda.

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Porque, yo le decía a Yeimi, yo no voy a ser eterna.  Sí.

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Y algún día ella tiene que hacer...Tiene que valerse por si misma, sí...Tiene que aprender a hacer su vida, su propia vida.

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Entonces, claro hay recursos; pero nosotras como mamás tenemos que enseñarlos a que ellos aprendan a vivir su mundo.  Sí.

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Y, y a que las personas alrededor respeten su mundo.

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¿Dirías tú que una de las prioridades, no tan solo de los padres, pero de las madrinas, los padrinos, los tíos, de todo el mundo,

243
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que una de las responsabilidades principales sería educarse...Sí porque...sobre las condiciones?

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Para así poder apoyar,...a, a la cuñada, a la tía,...poder ayudar. Podernos ayudar unos a otros.  Sí.

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...precisamente, parte también de este grupo es este...

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Como en mi caso que yo, siempre estoy buscando qué puedo hacer, dónde buscar, qué personas encontrar, dónde hay un servicio, dónde...

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El compartir con otras familias; el que les cueste menos trabajo que al que a mí me a costado.  Mjum.

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Es difícil también que ellos acepten eso. Pero no importa.

249
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Hay que ver que cuando hay personas que en realidad les interesa, lo van a hacer.

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Lo van a hacer y, y uno como mamá eres capaz de hacer...Si te piden la luna, la bajas.

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places and people to find, where the services are. Sharing with other families to make their load lighter than it was for me.

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It's hard for them to accept that, too. But, that doesn't matter.

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We just need to keep in mind that when folks are interested, they will do it.

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And, as a mom, if you're asked to lasso the moon, you do it.

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It is my hope is that folks will relate to this group and readily join us.

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They should feel free to share even if you haven't been able to share with a family member or close friend.

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They might be surprised to know that it will be fairly easy to share their story with a complete stranger.

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You will not be judged.

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No one will tell you that what you are saying is wrong or that you haven't done the right thing.

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Even if we have made mistakes, we simply find a different, maybe easier way to deal with it.

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Hey, Adriana, I have a question for you.

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How long has it been since your daughter was diagnosed?

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Well, um--   It all began with the ADHD.

264
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When she started pre-school the teachers complained all the time that she was restless.

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When I'd ask, the doctors would say it's way too early to tell.

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ADHD is diagnosed at around 6 or 7 years old.

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And, I would wonder why the teachers would tell me these things since she was still so young.

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It's a process.  So, how old is she now?  Right now she's 5.  Oh, 5.

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So, now that she's in school, has she been placed in a program to help her with her disability?

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Right now she'll be starting--   What was very helpful during pre-school was that the teacher--

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I often say that we stumble upon the right people.  The teacher herself had children with mental disabilities.

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Upon entering pre-school, the teacher and I spoke and she told me she understood me. We agreed to start a program just for her

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different from that of the other children so that she could make progress.

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THAT is what I call help.

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Now, I'm starting from scratch because she just entered Kindergarten.

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I need to start over with the teacher, the principal, the school district and outside of the school with the service providers,

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the psychologist, the psychiatrist, the pediatrician and, in her particular case, the cardiologist looking for options.

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It's a different program, a whole new routine. There are services--  She will soon be evaluated for what is called wrap-around services.

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It's designed to help her at school. A person will help her individually to keep focused in the classroom.

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She'll have a special education teacher while at school.

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Instead of being in a class with 20 children, she'll be placed in a smaller class for a time

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where they will with her at a slower pace.

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The truth is, I am so happy to hear that you are willing to lead this group.

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You not only are a great resource, you also have many of the necessary skills to advocate for your and your daughter's rights,

285
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and you are a great role model. Especially, for parents to educate themselves in order to help the service providers to

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find the right diagnosis for their children or other adults.

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Because you have an arsenal of knowledge and a great ability to be persistent at "knocking on doors"

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and I'm sure on some occasions you've knocked a few doors down, too, in order to get the message out.

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This is ideal for this support group.

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Things would be a little easier for folks if were well-informed before visiting the psychologist, the psychiatrist or the pediatrician.

291
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Have a list of specific questions for the doctor and do not accept the doctor's advice to just wait and see what happens.

292
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Be prepared to insist upon an answer as to what should I expect,

293
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whom else should I see, what is the next step?

294
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The doctors should see that we, too, are well-informed.

295
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Accepting their word should not be an option.

296
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Yeimi, I'm sure that in your line of work you see many families.

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Yes, just like Rosemary, I have been able to learn many specific ways regarding helping persons with disabilities.

298
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As Rosemary said, and, I'm sure in Adriana's experience too, what's important is taking those first steps.

299
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Being pro-active in getting information. If you don't know where to begin start "knocking on doors."

300
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And, even if the person behind that door can't help you, at least, make a connection for future opportunities to share knowledge.

301
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This helps to break through the barriers that we Latinos face.

302
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With Rosemary and Adriana, they speak English, so it's fairly easy to advocate for their family's needs.

303
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But, for many other families finding services that will communicate in their own lanaguage proves to be a bit difficult

304
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be it Spanish or any other language for that matter.

305
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In my role at work, I try, then, to find agencies that will work with families who need interpreting services to get the ball rolling.

306
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It might not be a perfect solution, but we slowly become more proficient in navigating the system we are to work within.

307
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One of the things that I admire about Adriana and Rosemary is

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how capable they are in managing themselves despite their not being native to this area.

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But, that willingness to ask questions--   Many times folks don't ask questions because of fear.

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That, being the first step toward moving forward in the quest to help your family.

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as well as breaking free of other people's good opinion, especially within your own family, about how to handle a situation. Yes, That's true.

312
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It's truly hard to separate ourselves from their opinions because it is so innate within our culture to encapsulate ourselves within the family setting.

313
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Everyone gets in on it: our parents, the inlaws. I admire the Latina women who can deal with that. As a mom, I find it difficult deal with everyone's opinion

314
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about what is "normal" and what needs to be done.

315
00:40:10,710 --> 00:40:20,980
I try to convey that message to families. Do the research and trust your instinct.

316
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And do the best you can. So, yes. I do my best to open the door when folks come a-knocking.

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Do your research; find out what you need to do to qualify; be a little demanding.

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The truth is that families with the most success are those who have researched the web and were not afraid to ask the hard questions.

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Even if all you speak is broken English, start with that.

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Others will be able to see that you are doing your best to take control of your situation.

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I'd like to ask you one more question. If you allow me, a personal one.

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As a professional Latina, how does what you see and hear about other people's struggles and your ability or inability to help them make you feel?

323
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From the perspective of being Hispanic, well, you always want to reach out to help.

324
00:41:41,089 --> 00:41:43,066
Yes. There sometimes can be some frustrating moments.

325
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That even while being fluent in English, even while working for a capable agency some folks simply don't want to or don't know how to help

326
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It's disappointing when you really want to help a family and your hands are tied.

327
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At the same time, however, it's been an opportunity to acquire knowledge in the areas within the system where I previously had little or none.

328
00:42:10,734 --> 00:42:19,954
Sadly, it's true; there is a lack of services and informational materials in Spanish.

329
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Our Latino brothers and sisters should know, however, that even those born in the U.S. encounter these very same issues.

330
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I try my best to let folks know that nearly everyone that has a person with disabilities in their family, regardless of language,

331
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background or ethnicity have the same needs and encounter the very same hurdles.

332
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In the end, we all want the same thing --to help our family.

333
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Nate?  You've been so quiet.  I do have a question for Adriana, though.

334
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You've told us about the Tocando Puertas support group.  Let's say I know of a few people, because I do, actually,

335
00:43:01,944 --> 00:43:12,752
that I am sure will benefit from this program, who should I put them in contact with?

336
00:43:12,752 --> 00:43:18,842
Well, contacting Manos Unidas is a good start.

337
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Lately, I have been running errands for my daughter's issues, so the folks there have been taking messages for me.

338
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And, I get back to the families soon after that.

339
00:43:47,594 --> 00:43:57,450
I was telling Sol earlier, that we had planned a meeting for last week, but due to weather it was canceled.

340
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But, I am so happy to know that there are interested families.

341
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We're looking to set another date real soon to get that support group up and running.

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00:44:11,277 --> 00:44:25,171
We hope to get the word out by inserting flyers in the church bulletin; we find that families respond to that approach.

343
00:44:25,171 --> 00:44:37,500
And, maybe not everyone comes to this church, but someone who does may know of someone who needs this service.

344
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Those connections just work.

345
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And, this is a free program, am I right? No one will be charged?   No.

346
00:44:44,524 --> 00:44:54,905
And, I'm sure you can place the flyer in a variety of places; here in Gettysburg, Hanover and adjacent areas.

347
00:44:54,905 --> 00:45:13,188
We'll do whatever is most convenient for the families. Oftentimes, conflicting schedules between school and work don't allow us stick to a set timeframe.

348
00:45:13,188 --> 00:45:18,998
But, if there are enough families in a particular area, we can take the meeting there.

349
00:45:18,998 --> 00:45:27,963
We'll find a small nook, take some tea, a little coffee, get to know the folks in the area and in that way make more connections.

350
00:45:27,963 --> 00:45:39,498
I do want to stress that the folks within this group will not share with others outside of the group what has been shared by you.

351
00:45:39,498 --> 00:45:40,907
Oh, yes. The confidentiality issue.

352
00:45:40,907 --> 00:45:50,718
When folks come they should feel that they can share whatever they wish: their issues, their personal experiences, the struggles they've had.

353
00:45:50,718 --> 00:45:56,089
Outside of the group, however, if we happen to see each other at the store, we simply say, "hey, how are you?"

354
00:45:56,089 --> 00:46:02,625
Should someone ask how you know each other, the response should simply be: "I know her from such and such a place."

355
00:46:02,625 --> 00:46:09,239
You shouldn't enter into details, especially if you are not comfortable with dealing with that yet.

356
00:46:09,239 --> 00:46:19,963
In time, you may feel comfortable enough to let others know about the group, but without going into details about the person's specific issues.

357
00:46:19,963 --> 00:46:30,035
It's hard enough to deal everything a person goes through without adding the pressure of someone else finding out about it.

358
00:46:30,035 --> 00:46:37,079
We need to respect where the person is in the process; their sadness, his or her pain and leave it at that.

359
00:46:37,079 --> 00:46:45,180
Folks should feel free to join in on the conversation and gain knowledge on the options available to them.

360
00:46:45,180 --> 00:46:55,573
This is for everyone. Like Yeimi said, there is no focus on your color, your background, what language you speak, where you come from

361
00:46:55,573 --> 00:47:01,575
or how educated you may or may not be. There are many well-educated persons who are in the same predicament.

362
00:47:01,575 --> 00:47:12,730
They may be fully aware of all the services and programs available to them and still encounter the very same hurdles.

363
00:47:12,730 --> 00:47:19,286
I'm glad you mentioned that because I wanted to ask Nate, as a professional,

364
00:47:19,286 --> 00:47:27,234
oftentimes, in our line of work we go into agencies, specifically psychiatric hospitals,

365
00:47:27,234 --> 00:47:38,846
and into other facilities where there are people who suffer mental trauma or disabilities.

366
00:47:38,846 --> 00:47:43,774
I will answer the question myself, but I want to ask you first.

367
00:47:43,774 --> 00:47:56,765
How do you feel when you visit these facilities? You talk to the folks admitted there; you see the conditions in which they live.

368
00:47:56,765 --> 00:48:00,934
What does that do to you personally?

369
00:48:00,934 --> 00:48:12,199
I makes me sad. I am pained to see someone in one of those facilities.

370
00:48:12,199 --> 00:48:18,996
Yes, they are receiving treatment. Yes, there are specialists and doctors who care for them.

371
00:48:18,996 --> 00:48:24,902
But, it is so important to know that there is a life for them outside of that hospital.

372
00:48:24,902 --> 00:48:29,680
That, they really ought to be living with us in our own communities.

373
00:48:29,680 --> 00:48:32,292
Because, really. Who wants to be in an hospital?

374
00:48:32,292 --> 00:48:35,341
Who wants to be receiving treatments in a hospital?

375
00:48:35,341 --> 00:48:36,913
I know I wouldn't.

376
00:48:36,913 --> 00:48:47,948
I want to be in my own home, with my own family and also, have the option of chosing a doctor within my own community.

377
00:48:47,948 --> 00:48:54,911
And, so when I walk into one of these places, I'm stunned. I'm like, crikey!

378
00:48:54,911 --> 00:49:05,644
No one wants that. It's sad to see the conditions in which--     I'm sure you have felt the same when you have gone to see your son.

379
00:49:05,644 --> 00:49:14,509
I mean, it's one thing to be at the hospital for a short doctor visit and then leave.

380
00:49:14,509 --> 00:49:21,114
It is totally another thing to be admitted into the hospital.  There's a big difference.

381
00:49:21,114 --> 00:49:30,086
I would love to see every single one of these folks making strides back in their own communities.

382
00:49:30,086 --> 00:49:35,695
I know so people who are extremely talented, but they are admitted in a hospital.

383
00:49:35,695 --> 00:49:49,927
They can write, they play music; just like every other human being, we want to be out and about doing our own thing.

384
00:49:49,927 --> 00:49:57,876
Adriana, I know that you need to meet your older daughter who will soon get home from school.

385
00:49:57,876 --> 00:50:02,959
It was great to see you again. Thanks for coming back to share with us.

386
00:50:02,959 --> 00:50:07,314
We'll meet up again soon! Please take care.

387
00:50:07,314 --> 00:50:17,110
And, those are my thoughts about that. I'm saddened to see folks in those conditions.

388
00:50:17,110 --> 00:50:28,233
These types of grassroots programs are where we need to broadcast the need for better services

389
00:50:28,233 --> 00:50:33,113
so we can bring our family members from out of the hospitals and back into our communities.

390
00:50:33,113 --> 00:50:50,662
We need to take advantage of these opportunities to teach families with children who are disabled to recognize the early signs

391
00:50:50,662 --> 00:50:55,357
so they don't land in one of those hospitals that we visit.

392
00:50:55,357 --> 00:51:05,757
Personally, because I visit these facilities so often, I am often depressed.

393
00:51:05,757 --> 00:51:12,689
I place high value on my independence.

394
00:51:12,689 --> 00:51:19,982
I know, because I've heard it from many people, that they don't want to be in hospitals.

395
00:51:19,982 --> 00:51:29,161
It is so sad to have shared with someone who has not stepped out of a hospital in 30, 40 years.

396
00:51:29,161 --> 00:51:34,629
I believe that--   Well, it's hard for me.

397
00:51:34,629 --> 00:51:49,870
Because of what we have witnessed regarding what goes on in those hospitals, we feel

398
00:51:49,870 --> 00:51:57,333
or, at least it's this way for me, I feel compelled to share knowledge with people

399
00:51:57,333 --> 00:52:15,821
so they become aware of and fight for the services that are available to their family members

400
00:52:15,821 --> 00:52:21,360
in order to avoid having to admit our family members to these psychiatric hospitals.

401
00:52:21,360 --> 00:52:25,613
In truth, I don't know why they are even called hospitals because when you go to a hospital

402
00:52:25,613 --> 00:52:31,564
one expects to leave in day or two; a week or two.

403
00:52:31,564 --> 00:52:36,202
We definitely don't expect to stay in a hospital 30 years!

404
00:52:36,202 --> 00:52:49,965
I believe that our community can avoid this by raising awareness, demanding services, getting informed

405
00:52:49,965 --> 00:52:54,367
and we come full circle back to the support group Tocando Puertas.

406
00:52:54,367 --> 00:53:03,227
I feel this group can start a movement of sorts in this area.

407
00:53:03,227 --> 00:53:15,717
And, as a group--  As they say, "there is strength in numbers;" as a group request nay demand

408
00:53:15,717 --> 00:53:29,275
services in Spanish for those who need it. It just so happens that we have mostly been talking about mental health issues.

409
00:53:29,275 --> 00:53:35,464
There's a thing I have tested and confirmed.  I grew up in Puerto Rico.

410
00:53:35,464 --> 00:53:40,554
I learned English when my parents moved us to the United States.

411
00:53:40,554 --> 00:53:44,316
I have been speaking English for 45 years now.

412
00:53:44,316 --> 00:53:56,887
Despite all of that, when I feel the need to talk about a personal issue, I need to express myself in Spanish.

413
00:53:56,887 --> 00:54:01,100
Just think of that! I've been living here for over 45 years.

414
00:54:01,100 --> 00:54:05,550
But, my feelings... My feelings come out in Spanish.

415
00:54:05,550 --> 00:54:13,441
And, on the occasions that I have had to see a therapist,

416
00:54:13,441 --> 00:54:19,754
it's an interesting process. You see, many times the thought comes to me in Spanish,

417
00:54:19,754 --> 00:54:27,126
I need to translate my thought before I can communicate it with the other person.

418
00:54:27,126 --> 00:54:35,487
It would be so much easier to just communicate my thoughts if the therapist spoke Spanish or were bilingual.

419
00:54:35,487 --> 00:54:42,264
If something slips out in English, well we speak in English. Should something slip out in Spanish, well, then we speak in Spanish.

420
00:54:42,264 --> 00:54:59,246
No one should feel embarrassed because they need help; because they need to talk to someone, maybe a therapist for a few months.

421
00:54:59,246 --> 00:55:05,541
Or, even for a few years because there is nothing wrong with that.

422
00:55:05,541 --> 00:55:14,653
And, again. You should demand that they hire medical professionals that speak Spanish.

423
00:55:14,653 --> 00:55:25,907
I checked out my own theory with two friends of mine. One friend is from Allentown.

424
00:55:25,907 --> 00:55:31,150
She came to the United States as an adult. She was about 25.

425
00:55:31,150 --> 00:55:36,802
I asked her the same thing. "What language do you prefer, when you start talking about your feelings?"

426
00:55:36,802 --> 00:55:37,931
She speaks both languages.

427
00:55:37,931 --> 00:55:39,366
Her answer:  "Well, of course, Spanish."

428
00:55:39,366 --> 00:55:52,956
I asked the same question of a young man I mentored a few years ago, bilingual also; came to the U.S. when he was 13.

429
00:55:52,956 --> 00:56:00,521
In response to the same question, he said: "of course, Sol, I prefer Spanish."

430
00:56:00,521 --> 00:56:11,443
It makes sense, your deepest feelings mainfest themselves in Spanish. It's the mother tongue.

431
00:56:11,443 --> 00:56:17,007
You know, as we sit here, I've been thinking something.

432
00:56:17,007 --> 00:56:20,537
Some folks don't have medical insurance.

433
00:56:20,537 --> 00:56:26,682
That is also an obstacle or a limitation to being able to go to this or the other place.

434
00:56:26,682 --> 00:56:32,825
At least within Adams and York counties, Healthy York Network is available.

435
00:56:32,825 --> 00:56:42,538
At least in the office where I work, folks with no medical insurance are able to receive free treatment through Wellspan.

436
00:56:42,538 --> 00:56:48,031
That's, of course, through Wellspan either of Adams or York counties.

437
00:56:48,031 --> 00:56:53,179
Folks are more than welcome to come into the office and complete an application.

438
00:56:53,179 --> 00:57:02,404
We go up to 200% of the Federal Poverty Guidelines.

439
00:57:02,404 --> 00:57:05,948
So, at least in this area, there is some help.

440
00:57:05,948 --> 00:57:12,202
We can help those who don't have health insurance. Just come into the office.

441
00:57:12,202 --> 00:57:20,088
We will talk with the person and do everything we can to get them the medical attention they need.

442
00:57:20,088 --> 00:57:35,256
In addition, Yeimi, who is a fantastic and professional Health Educator, and has extensive knowledge in the area of treatments,

443
00:57:35,256 --> 00:57:39,692
programs and services. I'm sure you'll be able to help folks when they come to your office.

444
00:57:39,692 --> 00:57:49,674
Even without health insurance, there are some community agencies that offer mental health services on a sliding scale or based on your income.

445
00:57:49,674 --> 00:57:58,955
You must ask for these when you request services as these options are not made known to the public at large.

446
00:57:58,955 --> 00:58:08,488
Several of the community agencies that I have been in contact with will work with the patient in order to provide the needed services.

447
00:58:08,488 --> 00:58:18,198
The catch is, the patient needs to make known that they do not have insurance and request a payment plan for services rendered.

448
00:58:18,198 --> 00:58:29,346
I tell all my families to be honest about their situation because it makes the person referring you look bad.

449
00:58:29,346 --> 00:58:34,871
One single person who lies will make it bad for all the other people who also need services.

450
00:58:34,871 --> 00:58:46,076
As long as you are honest, there are many agencies who want to provide services, especially mental health services.

451
00:58:46,076 --> 00:58:52,263
There may be a few doors that close, but there are still folks willing to serve.

452
00:58:52,263 --> 00:59:06,953
It's interesting. This conversation that we just had here, I feel is similar to what will take place in one of these support group meetings.

453
00:59:06,953 --> 00:59:27,228
Sharing painful stories, sharing information; that even while being educated people we still have a need to talk and share with others.

454
00:59:27,228 --> 00:59:45,813
For example, depression, mental health issues, these don't discriminate; they don't care about your race, your sex, how educated you are,

455
00:59:45,813 --> 00:59:53,636
what degrees you have, how much money you make. These can affect anybody.

456
00:59:53,636 --> 01:00:02,907
And, I'll be the first to admit, that it took me a long time to publicly say, "Yes, I suffer depression."

457
01:00:02,907 --> 01:00:09,185
But, there comes a time when we must break with stigmas and stereotypes.

458
01:00:09,185 --> 01:00:13,049
Sol, Nate.  Yes?  There's something else.

459
01:00:13,049 --> 01:00:18,588
What can you tell us about the Disability Rights Network?

460
01:00:18,588 --> 01:00:21,861
That we're really busy.

461
01:00:21,861 --> 01:00:24,259
It's true. We have a lot of work to keep us busy.

462
01:00:24,259 --> 01:00:28,507
Where are you offices located?

463
01:00:28,507 --> 01:00:31,970
There are three offices; the main one is in Harrisburg.

464
01:00:31,970 --> 01:00:36,131
There are offices in Philadelphia and in Pittsburgh.

465
01:00:36,131 --> 01:00:51,457
Despite our keeping so busy, the initial intake service is always available to provide help of some sort.

466
01:00:51,457 --> 01:01:04,494
Each person at the phone is well-equipped to help you; they have at their fingertips a whole slew of resources.

467
01:01:04,494 --> 01:01:08,536
Of course, when you call you will be asked to provide certain details about yourself.

468
01:01:08,536 --> 01:01:24,011
We are a non-profit organization that receives Federal monies. It is necessary, then to maintain and at year's end submit very precise records.

469
01:01:24,011 --> 01:01:31,636
So, the information you provide at the beginning of a call, actually helps us to receive money in order to serve you.

470
01:01:31,636 --> 01:01:47,547
We are able to offer you advice and refer you to resources near you.

471
01:01:47,547 --> 01:01:57,091
We will always try to put you in contact with persons that can help you with your needs.

472
01:01:57,091 --> 01:01:59,719
Is there a Disability Rights Network in every state?

473
01:01:59,719 --> 01:02:12,049
Yes. This network is available in all 50 states and U.S. territories, which include Puerto Rico and Guam.

474
01:02:12,049 --> 01:02:26,688
It was established many years ago as part of a movement to protect the rights of persons with disabilities in the U.S.

475
01:02:26,688 --> 01:02:34,235
I wanted to add that I think it is extremely valuable that in the line of work that you do there are bilingual and bi-cultural persons.

476
01:02:34,235 --> 01:02:46,216
You are able to reach populations within the communities that would otherwise be underserved because of the lack of knowledge of the language as well as the culture.

477
01:02:46,216 --> 01:03:00,770
That is one of our greatest frustrations. Many times folks are referred to places that do not have bilingual staff.

478
01:03:00,770 --> 01:03:19,435
When we visit hospitals, it hits me in the heart whenever a Hispanic's face lights up just because you say, "hola."

479
01:03:19,435 --> 01:03:24,518
Then it starts. They start letting things off their chest  --in Spanish.

480
01:03:24,518 --> 01:03:37,273
And so, we listen.    And, it's as if the person finally came into his own.

481
01:03:37,273 --> 01:03:45,621
Personally, I would love to see that happen in every single agency that provides a service.

482
01:03:45,621 --> 01:03:49,138
It's a matter of the people within the community making that connection.

483
01:03:49,138 --> 01:03:54,835
In the meanwhile, that's why we are here; to support each other.

484
01:03:54,835 --> 01:04:06,574
When we encounter someone who doesn't speak English, assist them in the best way we can.

485
01:04:06,574 --> 01:04:11,863
I would like to personally thank the two of you

486
01:04:11,863 --> 01:04:19,106
for taking time out to visit our small town of Gettysburg

487
01:04:19,106 --> 01:04:24,610
to talk about the problems that we all face together.

488
01:04:24,610 --> 01:04:37,713
You have come all the way from Harrisburg so we can start a movement so that our voice can also be heard.

489
01:04:37,713 --> 01:04:44,967
The important thing to keep in mind is that this is just the beginning. This is just the first step

490
01:04:44,967 --> 01:04:47,737
in trying to make a change in this community.

491
01:04:47,737 --> 01:04:55,175
Our hope is that Hispanic Gettysburgians have success with their movement

492
01:04:55,175 --> 01:05:02,884
because our intention is to take a program of similar structure to other communities.

493
01:05:02,884 --> 01:05:11,169
Who knows? Maybe a sort of connection can be made between these communities because when the time comes,

494
01:05:11,169 --> 01:05:23,761
for the Governor and the legislators to work on the State's budget and he hears the voices of all these Latino communities within Pennsylvania

495
01:05:23,761 --> 01:05:35,973
demanding the inclusion of funds within the budget so that each Latino community can have access to needed services.

496
01:05:35,973 --> 01:05:38,870
Hispanics are in every nook and cranny in Pennsylvania.

497
01:05:38,870 --> 01:05:42,511
That sounds really good.

498
01:05:42,511 --> 01:05:50,015
That is the dream and this is why we are so interested in that this support group gets underway.

499
01:05:50,015 --> 01:05:57,083
Just know that we will always be here to support this group in any way we can.  Thank you.

500
01:05:57,083 --> 01:05:59,375
So, carry on and start knocking on some doors!

501
01:05:59,375 --> 01:06:04,047
That's right.  And, if you have to, knock some doors down.

502
01:06:04,047 --> 01:06:09,404
Well, thank you very much. We need to be heading back to the office.

503
01:06:09,404 --> 01:06:22,342
It was a pleasure. Thanks for the invitation. Goodbye.