IN ORDER TO GIVE, IT IS ESSENTIAL TO KNOW HOW TO RECEIVE
“My name is Milagros Villanueva, I am 4 years old and since I was born, they told my parents that I had many complications and that I might not be able to walk, talk, or see. I have been tube fed for many years. When I was 7 months old, my mom went to listen to a lecture by Dr. Liliana Mayo, she took me with my probes and everything. After that day, my life changed. I entered the Ann Sullivan Center in Peru where they gave my parents and me the hope that I could learn. Today I help my mom to sell at a fair, although I still have difficulties and weigh only 10 kilos, I have learned to speak, to walk and I love learning something new every day. I keep fighting and today I have an opportunity thanks to all the people who, like you, have come to CASACOR and know how proud I am to study at my Ann Sullivan Center in Peru.”
The above paragraph is from a publication in the CASACOR Magazine in 2013 about Milagritos (as we know her), who has Van Den Ende-Gupta Syndrome (VDEGS) Infrequent-Rare with 40 Cases reported in the World. Today Milagritos is 13 years old and has just finished primary school in a regular school. The challenges presented by Van Den Ende-Gupta syndrome are mostly physical: underdeveloped eyelids and jaw bones; long, bent fingers; cleft palate; and other bone abnormalities, however, intelligence is usually average. That is why, through her education, Milagros has achieved, among many other things, doing arithmetic additions, washing utensils, using the washing machine or the blender. Activities that many children of her age _without the challenges Milagros has_ would like to carry out with such independence.
For those who are not familiar with the Ann Sullivan Center of Peru-CASP, it was founded 43 years ago by Liliana Mayo in the garage of her parents’ house, Dr. Mayo (PhD in Psychology from the University of Kansas, USA). USA) needs no introduction for many. A 2010 TED talk tells us how she came to start the Center. A mixture of inspiration from Gandhi, along with seeing the harsh reality that many children and adults with Down syndrome live. People who live chained or locked in a room, among other harsh conditions, as a result of a misunderstanding of their circumstances and/or lack of knowledge regarding their opportunities. Realities I have also had the opportunity to see live.
Recently, Liliana tells me excitedly that Milagritos not only stayed home alone for 9 hours and did the necessary basic tasks (her favorite dish to cook and eat is pancakes), but when her grandfather was in the process of leaving the body, she insisted on staying in the hospital, just like her other relatives. This is also told by Liliana in the CASP family school, in which, not only is it promoted and examples are given of how children can not only help at home, but also rewards and recognizes the advances in helping themselves to carry a life not only independent, but cooperative. There are recognitions, for example, for learning to peel vegetables or for overcoming the fear of turning on the stove. And to parents, for being self-controlled and confidently allowing their child to expose themselves to and handle boiling water.
Other great examples are Diego Elías who is a founding student of the CASP, Diego is 43 years old just like the Center, he has worked in Saga Falabella for more than 20 years. He is an actor, he participated in a play with Ivonne Frayssinet, his dream is to act in a Peruvian television series. And then Juan Carlos Machaca, who is 27 years old, he is a winner diagnosed with autism, he has practiced in different companies and is awaiting a new opportunity to work. Since he was 7 years old he travels from Carabayllo to the Center of Lima, he has traveled to Ica (some 3 hours from Lima) alone and with important documents that were signed and returned. He is learning English, he has a great ear, so much so that when they were going to receive a visit from the first lady of Panama, he learned to play the national anthem on the harmonica. Juan Carlos helps his mother when she is sick and cooks for her and for himself when he lives alone. He arrived at the CASP at the age of three when his mother was told that he couldn’t do anything. He didn’t talk, he didn’t walk, he used to hit his head. Now he can perform as master of ceremonies. He has traveled to the University of Chicago, to Panama, as what he is, a great reference. In the words of Liliana, Diego and Juan Carlos are not only independent, productive and happy, but also great inspirers and counselors for young families who are going to have/have children with different abilities.
The great work that the Center does, goes far beyond people with different abilities and certainly beyond Peru. When I ask Liliana if the family school she invited me to, is for all kinds of families, she tells me that it is. And we confirm it hours later, when we watch the video together with my family. Inspiration and human example move us and cross borders of nationality, religion, language, etc. and they become an example and inspiration that we can learn almost anything (such as how children with different abilities can take an international plane trip), through practice, patience, respect and an adequate way of teaching.
Long before this, one beautiful day, Miki Miró Quesada (president of the Center’s Support Committee) had invited me to visit the CASP center. My first question upon receiving the invitation was: Can I bring my family? (And I have a powerful reason…). Of course it is easier to go alone (just as it is often easier and faster to do things for our children), but I have learned and I feel that our children learn not only through our example, but that of people, the society that surrounds them (Japanese society is a model of this). And many times, these role models can be more inspiring than oneself. I firmly believe (as practiced by the Center) that as a society we have a great responsibility not only in the education of our children (or the people that we have to accompany), but in that of others. It is only necessary to remember the past generations in which any older person had the right and the duty to intervene if they saw that something should be corrected/helped with any of us.
“Gratitude is the memory of the heart” Liliana tells me in one of our conversations and she certainly lives it. “A thousand, thousand, thousand thanks Carola _she tells me_ working with families inspires me… when I had Alonso, my only son, I realized that despite being a psychologist I lacked tools and was making some mistakes… they made it known… and that’s where the mission of working with families was born… A hug, Liliana”. While reading this, in my heart I feel that the grateful one is me, us, for having Liliana and so many other people who inspire us by example.
Today, the Ann Sullivan Center has 1. +100 students working in 44 Peruvian and international companies, +100 students included in 53 regular schools, the largest Family School in the world to train all family members, 6 countries following the Peruvian Model CASP: Argentina, Brazil, Bolivia, Spain, the Dominican Republic and Panama, 2 Governments interested in the Peruvian Model CASP: Panama inaugurated the Ann Sullivan Panama Center (CASPAN) in 2012 and in July 2013 a Cooperation Agreement was signed with the First Lady of the Dominican Republic, +46,000 people (parents and professionals) from the 24 departments of Peru and are present in 17 countries trained through its Distance Education Program.
Like many great achievements, Liliana couldn’t do everything alone. Miki Miró Quesada (also mother of the Center) founded the Support Committee, through which organizes a benefit cocktail for the Center every year (this year it will be held on November 19 at Huaca Pucllana, Lima) and the “El Refugio” store by Ann Sullivan 22 years ago, at CASACOR. This story is a success that lives and flourishes today and through which I met Liliana and her team, when my friend Chris Ambires introduced me to Gabriela Fariña, who told me that they had made a collection of paintings together with the children of the Center and another great artist, Melissa Larranaga. My instant and intuitive response was: What if we make handkerchiefs with the paintings and sell them in Casacor to support the Center?
Gabriela Fariña von Buchwald is a graphic designer by profession, she studied at the Rhode Island School of Design and dedicated many years to the development of corporate image, design of children’s books, memoirs, among others. Currently, without neglecting her graphic part, she is focused on painting with acrylic and oil and is venturing into floral installations and flower arrangements on request. Melissa Larrañaga, for her part, is a renowned artist with a long international career who has chosen nature as the protagonist. Her works, whether they are drawings or paintings in medium and large format, represent landscapes of colorful vegetation inhabited by flowers, leaves and trees. The aesthetic result offers pieces of delicate beauty that reconquer the gray urban space. Despite her painstaking technique and realism, Larrañaga’s work does not pretend to be naturalistic, but instead works from memory and intuition. Her unmistakable style, created with a slow and constant rhythm, invites unhurried contemplation as a counterpoint to the maelstrom of contemporary life.
The cooperative work of the group of children from the Center and the two artists, give rise to an exquisite and varied collection where, those of us who have seen the collection, always have several favorites (and generally all of them are included). When I saw the pieces, I could not feel more than connection, gratitude and enthusiasm at the same time, because capturing the art of painting in pieces of clothing is something that I had been doing years ago, but until now in a complementary way, more than a protagonist.
So, with great enthusiasm, I share with you the product of the work of this group of human beings, in which I include myself from the design and production of the handkerchiefs, while I reflect on one of the primary characteristics of the human being: The great capacity for cooperation and connection, even without knowing each other very well. From my perspective, brain and heart, inclusion shouldn’t just be written about, talked about, or mentioned; but simply and efficiently, it should be done. As John Donne says: No man is an entire island by himself. Each man is a piece of the continent, a part of the whole. We are one.
This is so true and present in me, that when we talk about people with autism, Down syndrome, mental retardation and / or other different lesser known syndromes such as Van Den Ende – Gupta syndrome or other different abilities, the first thing that comes to mind is how can I help them? However, what can surprise us often is how much they can help us. How much we can learn and receive if we open our hearts, allow ourselves to pay attention, unlearn many things that we assume or think we know and allow them to sink into our hearts and teach us <3. That is why a lesson that always goes around in my life is: To know how to give, we must know how to receive.
An infinite hug, Carola <3