The work of mothers promoted the Caregiver Law.
In tribute to mothers in their day, the newspaper La Campana publishes the interview that Visión Comfacauca magazine did with an extraordinary mother, who has not only dedicated herself to her autistic son, but to other children with that and other special conditions. .
Six years ago, in 2018, when Leidy Vannesa Molina received the diagnosis of his two-year-old son Samuel Mera, the neuropediatrician, who saw him in the daycare uniform, told him: why are you taking him to study, he doesn’t like it, the other children make him uncomfortable and will hardly speak.
“That gloomy information was like a bucket of cold water, but that diagnosis was not my prognosis,” says this mother, who has not only fought for her son, but for other children, both autistic and those with other conditions, through the Samuel Mera (Fusmer) foundation that he created six years ago and which is today located in the La Esmeralda neighborhood of Popayán.
Her social work, which has transcended the national level, for being one of the promoters of the Law
of the Caregiver, earned her the nomination for Woman Cauca Comfacauca, a contest that resulted
winner and representative of the department for the 35th Cafam Women’s Award.
The story of this leader is inspiring, not only for mothers and relatives of people with disabilities, but for authorities and society in general, which is a reason to highlight her in this edition of Visión Comfacauca magazine.
What is the origin of the Samuel Mera foundation?
L.V.M. It was born from a family need, from a task of catharsis. When they gave me the diagnosis of Samuel, who was a longed-for child, they told me he is autistic, a disability that he would always have. I researched and saw how difficult autism is, so emotionally I reached a breaking point, as happens to all caregivers at the first moment.
What was your attitude?
L.V.M. I was not willing to accept that disability. I went into depression, but we had professional support. The psychologist left me some tasks to heal so that I wouldn’t have that pain in my heart forever. I started with a digital platform that I called “true and wonderful autism”, in which I told what was good about autism, what I found positive I published. In another task I had to look for something that would generate more energy, because I gave my life to the care of Samuel, my only objective was to help him in his process and understand what was happening and I began to write “blue thoughts” and capture what thought a mother of a child with autism. She came up with the third step: “I need to meet with mothers who are going through the same thing. Since I am a special educator in the arts, I thought about an arts academy. We opened a place in 2019, we received autistic people, but if I talked about inclusion, children with other diagnoses would arrive, and that was the case, children with Down syndrome, with ADHD and ADHD. I started this work alone and fulfilled all the roles. Now we are a team.
Leidy Vannesa Molina, with her son Samuel Mera.
What strengthened her?
L.V.M. I am a woman of faith. God, through Samuel transformed my life and I realized that my son was an instrument. He had an organized life, but something was missing, there was a void and I needed a purpose, and I have not lacked angels. I started the foundation with a bank loan, supported by a caregiver friend. We charged families who had purchasing power, and for each child who paid, we received another who had no resources, so we have been able to sustain the Foundation. With the Departmental Disability Council, to which I belong, the Foundation had an agreement last year. Also with the Secretariat of Culture, Tourism and Sports of Popayán, which has strengthened us with professionals. It hasn’t been easy, but God has made it less difficult. The trust that mothers have in me to bring their children to the Foundation, I don’t have in almost anyone, because one does not easily trust a child with a disability.
How have you and your husband navigated this situation?
L.V.M. It’s nice to talk about my husband, John Eduard Mera, an industrial engineer. We have a home formed 25 years ago, very functional, with two children, Santiago, 23 years old, and Samuel, 8 years old. The first to accept Samuel’s reality was me, but I did it out of fear. My husband kept telling me that Samuel had nothing wrong, that he was a healthy child, that he was misdiagnosed. What happened to him was a denial, just like the grandparents. When they saw me empowered from the pain, they landed in my reality and the support has been constant and permanent. My husband has never said no to my dreams or my resolutions.
How has Samuel’s life been from the age of 2 to now that he is 8?
L.V.M. Initially, autism took away many options with Samuel; he was non-verbal for many years, he did not control his sphincters, until he was six years old he wore a diaper, today his condition has changed a lot. In the middle of that fight, something very beautiful happened, we faced the health system, I don’t say it in a negative way, I asked it with questions, I sat down with the medical director of my EPS and I told her: explain to me why I don’t know and I want you to tell me. teach, what am I going to do with a son with autism. Let’s say I ‘faced’ it from love. My son was the first Sanitas patient with a treatment for children with autism. Samuel has formulated eight hours a day Aba (set of activities aimed at reversing the disabling isolation and achieving healing), three weekly speech therapy therapies, three of physiotherapy, three of TEO from neurodevelopment, hydrotherapy. Every 8 or 10 months he is treated by specialists in Cali, especially in neuropediatrics.
Samuel opened the door to many more children, there are more than 80 in Popayán in the program, previously the autistic person was not offered anything other than neurodevelopmental therapies, there were no other options.
The Samuel Mera Foundation (Fusmer), which serves people with different disabilities, was created six years ago and is located in the La Esmeralda neighborhood of Popayán.
Is it true that Samuel speaks English, even though he doesn’t pronounce Spanish well?
L.V.M. Yes. It is incredible that an eight-year-old autistic child, with a mental age lower than that of a three or four-year-old, has learned English and has two other languages in the process of learning, without anyone teaching him. At four years old, Samuel spoke, he didn’t say mom or dad like other children, but rather “I’m hungry.” And, curiously and inexplicably, he did it better in English, then we realized his potential, he composes easily on piano, he comes up with a melody today and about 20 days later he plays the same music, which means he remembers it very well.
How was the Caregiver Law achieved?
L.V.M. With a leader from the department of Bolívar, who contacted me, and four other people, we began to work on a draft Law for the Caregiver of People with Disabilities, collecting signatures at the national level, I traveled almost all of Cauca, but we did not reach the threshold. We thought of another alternative, so the National Care Federation was created, in order to present a bill. We sought support in the Senate and Congresswoman Ángela Sánchez listened to us, we sent her the information and in 2020 the study began with its Legislative Work Unit (UTL). The bill passed the corresponding debates and was approved. On June 28, 2023, the rule was sanctioned by the President of the Republic. The initiative seeks to promote training, job access, entrepreneurship and income generation for caregivers of people with disabilities. It was established that on July 24 of each year the day of the caregiver of people with disabilities is celebrated.
What effects has this Law had?
L.V.M. We are in the process of socializing the Law, we have sought spaces through the social manager of Popayán and the Government of Cauca. In addition to the Care Law, Fica, the International Care Federation, was born, which seeks to adopt public policies from countries such as Spain, Argentina, Chile, among others. We are invited next May to Costa Rica by the Inter-American Court of Human Rights, to talk about the international law of Care. We achieve that through our need. It is incredible what a child with a disability has managed to do in us, because it is a personal, family, social, collective, national and international transformation.
How many children does the Foundation serve?
LVM There are six groups and each one has 22 children, they are organized by days, due to lack of space, we need a larger house. The Foundation has a plot of land in Cajete, the organization is paying for it with the help of the parents, the idea is to build the house on that site, because they ask for a country space.
Group of people with special conditions who come to Fusmer.
What has it meant to you to be a Cauca Comfacauca Woman?
L.V.M. It is a before and after, I love my Compensation Fund, I have always been linked to Comfacauca. Samuel has been a beneficiary since he was 2 years old, he attends recreational vacations, he is in swimming, we have always had the Caja in our life. When the call came out for Mujer Cauca Comfacauca to represent the Department in the Mujer Cafam award, one of the caregivers told me that she was applying for me and I accepted. I didn’t see it as easy, because there are women who have been in leadership for 20 years, I have been in leadership for six, I didn’t minimize my work, but rather maximized that of others. In the ceremony that took place, when they mentioned me, it was a surprise, I looked at my husband, he was crying, just like my postulant. Cauca Woman Comfacauca-Cafam I compare it to that harvest that begins, after seeing arid lands. With this award, hope shone again, a light came on in the midst of much difficulty, because it has not been easy.