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Mi hija tiene tdah

tdah-490x315

“Mamádedos” me ha pedido que os hable del TDAH como madre de una niña que sufre este trastorno.
De momento, os diré que soy una “mamádetres”, de tres niñas fantásticas que llenan mi vida y la de mi marida de una manera increíble. Mi marido es ingeniero, yo soy editora, y ninguno de los dos tuvo problema alguno en los colegios respectivos, en las carreras que cursamos, ni en los masters que hicimos de adultos. Fuimos buenos estudiantes. 
Nuestra hija mayor tiene ahora 18 años y una media de 8 en el bachillerato. Nuestra hija mediana, de 16, a pesar de que esté un poco descentrada con esto de la adolescencia, siempre ha sacado unas notas brillantes sin esfuerzo. 
Y la pequeña…. Ayyyy, la pequeña!!! Hoy, a sus 14 años, es una niña despierta, espabilada, alegre, con un montón de amigas… y amigos… a pesar de que no lo haya tenido nada fácil en su vida escolar, entre otras cosas, por su TDAH.
Hay evidencia científica que demuestra que el TDAH (Trastorno por Déficit de Atención con o sin Hiperactividad) existe, que es un trastorno neurobiológico, con una base genética que provoca un desequilibrio significativo en algunos neurotransmisores del cerebro. Para ser breves, es algo así como que las neuronas de mi hija se conectan entre ellas de manera diferente a las de los demás niños.
Los síntomas del TDAH son la hiperactividad, la impulsividad y la falta de atención, pero no todos los afectados manifiestan estos tres síntomas. Mi hija es impulsiva e inatenta pero no hiperactiva.
Cuando a los 12 años le diagnosticaron el TDA-H, mi marido y yo nos sentimos aliviados. “¿Aliviados?”-pensareis… Pues sí, aliviados. Porque desde que ella tenía 4 años nosotros sabíamos que algo pasaba con ella y, a pesar de que habíamos acudido a un montón de profesionales (pediatras, oculistas, otorrinos, optometristas, psicólogos, psicopedagogos, etc.) y seguido un montón de terapias, nunca habíamos obtenido un diagnóstico claro que nos abriera el camino hacia una manera eficiente de ayudarla.
No sabéis la sensación de fracaso que implica tener una hija estudiando un examen durante dos semanas para que cuando llegue el día del examen deje todas las preguntas en blanco por que no se acordaba de NADA, no sabéis qué significa que todos los maestros te digan una y otra vez que tu hija no estudia cuando tú te has pasado horas y horas a su lado, en su habitación, intentando que entienda algo, que se acuerde de algo… no sabéis qué significa que un día tras otro venga con una nota en la agenda diciendo que no ha entregado los deberes que hizo, con gran esfuerzo, el día anterior por que ha sido incapaz de acordarse de meterlos en la carpeta. 
El sambenito de vaga, inmadura, consentida, mimada ha perseguido a mi hija desde que empezó su escolaridad y no había nadie que creyera que esa personita vaga, inmadura, consentida y mimada trabajaba más, se esforzaba más, le echaba más horas, que la mayoría de sus compañeros o que sus hermanas.
Los deberes de verano, que sus hermanas tenían acabados sin esfuerzo la primera semana de julio para poder disfrutar de un verano sin más preocupaciones que prepararse para ir a la playa, a mi hija con TDAH le duraban todo el verano, a base de dos horas diarias de esfuerzo común madre e hija y, aun así, cuando llegaba el mes de setiembre, no los había acabado y recibía la primera bronca del curso o la primera mala nota.
La sensación de fracaso cuando te dicen que, a pesar de todo el esfuerzo, tu hija tiene que repetir curso. La inmensa tristeza cuando ella te dice : “Mami, es que soy la última en todo”. Y van pasando los cursos y la perspectiva no varía, la dificultad es cada vez mayor y el decalajeentre tu hija y el resto de su clase también.
Y tú vas viendo que aquella personita alegre y feliz que tenías se va volviendo triste, taciturna, preocupada, se va hundiendo su autoestima porque fracasar un día tras otro, ser la última en todo, un día tras otro, es muy duro… Y entonces ya no sólo es el TDAH sino que ahora es la ansiedad, la depresión y una autoestima que está por los suelos y tu hija cada vez más frágil y ves que se va a romper…
El TDAH si no se diagnostica y se trata en la niñez, puede dar lugar a graves problemas de aprendizaje, al abandono escolar, a conductas disociales o de riesgo, a graves desajustes emocionales y, a la larga, a una vida absolutamente descontrolada.
La vida de mi hija cambió con su diagnóstico, aunque éste llegara tarde. A partir de ahí pudimos empezar a trabajar con ella y obtener resultados tanto a nivel escolar como anímico.
El tratamiento del TDAH es un tratamiento multimodal. ¿Qué significa esto? Pues, que a pesar de que la gente crea que el TDAH se cura con una pastilla, el tratamiento de este trastorno requiere mucho más que eso. 
El tratamiento multimodal comprende reeducaciones específicas buscando estrategias compensatorias (o sea, profe especializado en casa o en un centro), coordinación entre los profesionales de la reeducación y el colegio, (si el colegio colabora, claro), adecuaciones escolares (darles más tiempo en los exámenes, facilitarles el uso de la calculadora, proporcionarles las preguntas de los exámenes con antelación, etc), y, finalmente, pero no en todos los casos, tratamiento farmacológico, etc.
Mi hija con TDAH ha cambiado tres veces de centro escolar porque todavía hoy muchos profesionales de la educación niegan o desconocen el trastorno, o simplemente no tienen medios para abordarlo. Ahora está en un centro donde se toman en serio su evolución, donde le dan herramientas para solucionar sus dificultades, donde tienen un diálogo fluido con nosotros, los padres, y con la reeducadora que viene a casa dos veces por semana, en fin, donde miman su autoestima para que no vuelva a caer en el pozo donde se encontraba, y han conseguido valorar aquellas cosas que ella es capaz de hacer bien para que no vuelva a sentir que es la última en todo.
En casa tiene refuerzo escolar, dos veces por semana una psicopedagoga especialista en este trastorno le ayuda con sus dificultades, a organizarse, a establecer prioridades, a tener estrategias para recordar, etc
Y también la medicamos. Esto último suele ser una gran fuente de polémica y hay muchos padres que deciden no medicar a sus hijos con TDAH a pesar de que el especialista, psiquiatra o neurólogo, se lo haya recetado. 
Nosotros tomamos la decisión de hacerlo y no nos arrepentimos. Si ella hubiera sufrido diabetes en vez de TDAH no hubiéramos dudado ni un momento en administrarle insulina. El caso es que sufre TDAH y necesita algo que ayude a sus neuronas a conectarse de manera eficiente.
Ahora ella vuelve a ser la niña alegre que era cuando empezó su escolaridad. Su autoestima está mucho mejor y los problemas, aunque no han desparecido, parecen más abordables.
El TDAH no es una moda, es una enfermedad que causa un gran impacto emocional en el niño y su familia. 
El TDAH no se cura,  pero con el tratamiento multimodal las personas que lo sufren encuentran estrategias para compensar sus dificultades. 
Es preciso que la sociedad sea consciente de que el niño con TDAH no es un niño problemático sino un niño con uno (o muchos) problemas.
“mamadetres”

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117 Comentarios

  • Responder
    Chini
    30 marzo, 2013 at 11:16 am

    No es solo la niña o el niño que sufre… También sufren los padres, las HERMANAS, la familia… Todos! Por eso da rabia que siendo una enfermedad tan "popular" existan pedagogos que no se lo crean… Gracias Bea!

    La hija mayor de "mamádetres"

  • Responder
    madre estresada
    30 marzo, 2013 at 12:25 pm

    Gracias. Ojalá lo que has explicado el sirva a mucha gente. Mil gracias.

  • Responder
    Entre Potis Y Pulseras
    30 marzo, 2013 at 5:08 pm

    Una entrada muy interesante, gracias por compartir tu experiencia en el tema del TDAH, lo que hace falta es mucha más información
    Un saludo

    • Responder
      Bea
      30 marzo, 2013 at 9:07 pm

      Gracias. Hace unas semanas salió otro al respecto en el blog por si te interesa.

  • Responder
    A la ultima
    30 marzo, 2013 at 10:19 pm

    Bea me has emocionado mucho, me alegro sobre todo por tu niña, te entiendo un poco , mi sobrina estudia el doble que mi hija y trae siempre un 2,ahora va con una sicologa y parece que va un poco mejor, en mi caso es que mi sobrina es muy feliz que le da igual el 2 que el 10, y lo mismo la seño le dice que no estudia
    Que me alegro mucho de que todos esteis mas felices ahora
    Bss

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    Bea, gracias por compartir esta experiencia, como dice la nena mayor, es algo dificil para todos los que le rodean. Agradezco a la lectura el tener un camino mas claro a mis futuras decisiones.

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    meriluct
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    Es una entrada super interesante. Gracias por compartir la experiencia, seguro que ayuda a muchos padres que como vosotros tengan una situación parecida y vayan vagando por miles de especialistas sin recibir respuesta adecuada. No puedo entender, que a dia de hoy haya centros sin apoyos para estos casos que con una terapia de reeducación y adpataciones en el aula como dices se puede llevar muy bien, la sociedad necesita mucha concienciación. Yo, personalmente estoy aterrada de pensar en cuanto llegue el momento de llevar a mi peque al cole…ella tiene autismo y claro lo más probable es que necesite mucha ayuda y tendremos que descartar muchos coles por la inexistencia de coles. Me he sentido muy identificada, aunque a otro nivel, cuando has contado que el diagnóstico fué un alivio, pues como dices se acaba la frustración e impotencia de no saber como actuar y por fin puedes acometer acciones que ayuden a tu hija a llevar una vida más normal. Enhorabuena por vuestro trabajo y saber estar encima de las peques. Besos.

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