"They began to rehabilitate him, because he had a generalized hypotonia due to the seizures, first in the room and then they took him to the gym. Then he is discharged, still with seizures but not so many. And they called us for an experiment with Dexamethazone serum with steroid that had been tested positively in Australia and asked for consent to test it in Dario for being refractory to drugs, and we agreed, and so the crises decreased.
"From there we moved to the Borrás with Dr. Jesús Montano, head of physiotherapy service, wonderful, he made me walk to Darío about two and a half years. Then he managed to insert himself in the special nursery Ernestito de Playa, where he was until he was five years old. At that time the CDO evaluated him with a severe mental retardation, so he could not continue in special education and they refer him to be treated by rehabilitation in the Health area. I had to ask for leave from my workplace to take care of Dario and my husband continued working.
"Shortly after they told us about La Castellana, he went through a medical commission that approves it, and happily enters that Psychopedagogical Medical Center at the age of six, thanks to that I was able to reintegrate into the workforce. I am no longer a soldier, but as I am a lawyer by profession, I work as a legal advisor for a company, and I have been able to develop professionally, right now I am doing a doctorate (Phd Edt), thanks to the fact that I now attend an institution.
Original article in Spanish:
Cuando el Síndrome de West llegó a sus vidas
"...here are Psychopedagogical Medical Centers for the care of people with severe and profound intellectual disabilities, so until today it is not an option for people with autism, but work is being done in search of a solution for those who complete the school stage at age 18 and fail to insert themselves into the workforce. most.During the pediatric age, children and adolescents with ASD are guaranteed medical attention by psychiatry, and in each municipality there are Mental Health Centers that they can attend from the age of 19, but the family considers that the attention and accompaniment in this last stage is still not enough."
There is still a long way to go in terms of inclusion from the age of 18, when they finish their education, either with labor insertion or in medical-psychopedagogical centers, or in the municipal occupational groups proposed to create the future association. There is also a lack of support in the special diet they receive only until the age of 18, as some foods can affect their behavior.
."..existen Centros Médicos Psicopedagógicos para la atención a las personas con discapacidad intelectual severa y profunda, por lo que hasta hoy no es una opción para las personas con autismo, pero se trabaja en busca de una solución para los que culminan la etapa escolar a los 18 años y no logran insertarse laboralmente, la mayoría.
Durante la edad pediátrica los niños y adolescentes con TEA tienen garantizada la atención médica por psiquiatría, y en cada municipio hay Centros de Salud Mental a los que pueden asistir a partir de los 19 años, pero la familia considera que aún no es suficiente la atención y acompañamiento en esta última etapa."
"All the work, all the projection that is being done from the institutional point of view, Health and Education we applaud and receive it with pleasure, but that must have an end, a social accompaniment. I have always seen and suffered that when we try to make our children visible in society we always do it from the point of view of supplication, when we knock on doors we always do it from the point of view of asking for help, and not from the point of view that it is your duty to help. It is an approach that we must work on, because I think they are not visible within the social."
"Because the world is going to a very cruel future, bullying globally is very strong. That is why I reiterate, we can do a very good job from the institutional point of view, but if we do not touch the hearts of children who are contemporary with ours, their future will not be very flattering, the work at the community level, at the society level must be constant. "
In another moment of the meeting, Dr. Pedro Luis Castro Alegret and Dr. Imilla Campo Valdés, from the Central Institute of Pedagogical Sciences of the Ministry of Education (MINED), presented: The orientation and education to families and teachers of the rural sector and vulnerable areas for the educational inclusion of children with disabilities.
“Porque el mundo está yendo a un futuro muy cruel, el bullying a nivel mundial es muy fuerte. Por eso reitero, podemos hacer un trabajo desde el punto de vista institucional muy bueno, pero si no tocamos el corazón de los niños que son contemporáneos con los nuestros, el futuro de ellos no va a ser muy halagador, el trabajo a nivel de comunidad, a nivel de sociedad debe ser constante”.
En otro momento del encuentro, el doctor Pedro Luis Castro Alegret y la doctora Imilla Campo Valdés, del Instituto Central de Ciencias Pedagógicas del Ministerio de Educación (MINED), expusieron: La orientación y educación a familias y docentes del sector rural y zonas vulnerables para la inclusión educativa de los niños con discapacidad.
Original article in Spanish:
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