9,365 kilometers away, when the pandemic locked down the world, two women from Choco came together for a social initiative that continues to grow. An alliance so that the families of your department with autistic patients find active communication formulas and can share knowledge in the same specialized care space. Haidy Sánchez Mattsson is a psychologist and lives in Umea, called the city of birches, twelve hours by bus from Stockholm (Sweden). Amparo Palacios Mosquera is a social worker who lives in the El Jardín de Quibdó neighborhood.
(Enter the special: United Colombia, where differences can live)
Haidy Sánchez works at the specialized center Habiliteringscentrum on issues of autism, cognitive disorder or rehabilitation in multiple disabilities. She spent eleven more years at the Elevhansan Institute, in contact with the daily challenges of patient care. She has been in Sweden for two decades where she started a family with a natal doctor, but her parents, her siblings and part of her heart are still in Quibdó, where she was born and raised. On a trip back to the family with a study plan on board, he met Amparo Palacios and an agreement of wills arose for a higher reason.
In 2015, Amparo Palacios, after a long trip between the capital of Chocó and Medellín in search of answers, Yeison, her second son, was finally diagnosed with autism. Without health security or social protection to face her dilemma in the city or in the department, the guide came from Haidy Sánchez. The psychologist was seeking to add a chapter from Chocó to a Sweden-Colombia binational evaluation on the stress that autism generates among families. So they met, exchanged contacts, began to greet each other on WhatsApp. And so, from chat to chat, the union took place.
Currently, Amparo Palacios officiates as the legal representative of the non-profit foundation Fundautismo Chocó, established in the midst of the pandemic to confront the spectrum of autism. And from the other side of the world, closer to the North Pole, Haidy Sánchez works as a relationship worker and coordinator of activities in Colombia. December 19, 2021 was the last day. They have five virtual and two face-to-face in fourteen months. There are already thirty families from Quibdó and Istmina united by a network interested in guidance so that they know what to do. Amparo Palacios knows what that meant to Yeison.
At least 30 families from Quibdó and Istmina have joined the support network.
While Haidy Sánchez tells the story to journalists, manages talks with experts and provides resources for workshops, Amparo Palacios moves with her circle of support in Quibdó. Both would like to reach the borders of San Juan and Atrato because they know that in any of the remote villages of Chocó there are autistic minors who require stimulation and caregivers who need training. Specialized neuropediatric care. But they are low-income families and live in a region where the EPS survive. Occupational or speech therapies are read in books.
A care desert that led Haidy Sánchez and Amparo Palacios to convince themselves that, with no help in sight, they had to look for her. And in each case, first the fire of blood ties vibrates. For Haidy Sánchez, her brother Alexander, economist, health manager, and her Santa Sofía de Asís Foundation, which covers more than missing. Amparo Palacios also mentions her brother Carlos Palacios, a sports instructor, who risks it so that those attending the workshops return. Therapist Tatiana Carrillo provides an assessment from Cartagena. Speech therapist from Barranquilla, Nitza Guzmán adds a talk.
Haidy Sánchez sends weekly letters to public and private institutions, both national and international, asking them to look at Chocó and the minimum it requires to shield its special population. Amparo Palacios keeps the network active and with her sister-in-law Mónica Minotta and her accountant Ruth Yadira Palacios, they support the daily life of Fundautismo Chocó, which abounds in volunteers. The bet is to get a seat. A meeting point to receive professionals and train families, until no one has to go necessarily to Medellín or Bogotá to seek a diagnosis or therapy.
More than the website or the digital network, the challenge now is for Fundautismo Chocó to execute its plans
It is not a quixotic nor does it constitute a clamor. The severe behavioral dilemmas of autistic people, their limitations in communication, the vague strategies of parents to deal with the issue, or the weariness involved in treating them in terms of emotional fatigue and depression, summarize what the challenge of these women means. Especially in Chocó, where everything is missing. But Haidy Sánchez and Amparo Palacios are not alone. From Barranquilla, the president of Fundautismo in that city, Mariolis Rojas, has been generous in advice. The same as the educational psychologist Nairobis González and the Paidos corporation, which remains attentive from Ibagué.
There are hands that add up, but the reality is harsh. With luck, families with autistic minors will have to wait for the EPS to send them to other cities. There is no characterization of the problem or an instructive minimum for households. In contrast, says Haidy Sánchez, “in Sweden all patients with mental retardation, down syndrome or cognitive disorders have comprehensive health treatment, guaranteed by the State, throughout life.” For this reason, together with their allies and Fundautismo Chocó, they cling to the conviction that we must continue knocking on doors until one opens.
Haidy Sánchez leads support network for autism in Chocó
On the family side, Haidy Sánchez and Amparo Palacios know that, within their limitations, the social inclusion secretaries do what they can, as does the Colombian Autism League. That’s why they weave their own network and care little if the State has the department at the bottom of the line. They they only expect permanent medical and psychological guidance and therapies for their children. The ideal is to provide quality of life in the face of neurobiological complexity. “More than the website or the digital network, the challenge now is for Fundautismo Chocó to be able to execute its plans,” highlights Haidy Sánchez.
“My son is 14 years old and I have him at home since I was looking for places in many facilities in Quibdó and they did not accept him anywhere.” “At school they no longer received the boy because he behaves aggressively. He is sleepy sometimes and the doctors haven’t told me why he eats things from the garbage.” They are messages that they receive daily and demonstrate the precariousness of Chocó in caring for its special population. A mother says that the teacher was changed for political reasons and that now her child no longer eats. Another says that no matter what condition you have, your child has rights.
Haidy Sánchez and Amparo Palacios try to answer the concerns, while expanding their database to other municipalities of Quibdó. They know that, in addition to the health, economic and educational shortcomings of the majority of Chocó families, in homes with autistic patients everything is more difficult. Scientific studies show that parents or primary caregivers of children or adolescents with autism have high levels of stress. Also for them they trust that Quibdó has a specialized center for common support to patients and protectors.
THE VIEWER*
United Colombia
