“Óscar is 21 years old and his presence does not go unnoticed: his voice is constantly heard and he is usually in continuous movement. Oscar needs permanent attention. Sometimes he feels the frustration of not being able to communicate what he wants and that generates mood swings and aggressiveness.
This is the last year that Oscar can attend school. Centers for the care of people with disabilities tend to be in high demand and few places are available, which tend to be given to people who are more docile, or have less attention demands, because it facilitates the coexistence and management of the center.
We are worried about Oscar’s future. It is difficult to find a person who can take care of him.
For a few years, Óscar has had an excellent caregiver who spends a couple of hours a week with him. Now the caregiver is pregnant and we have asked her not to take care of Óscar during her pregnancy for fear that an outbreak of aggressiveness could put the baby’s health at risk. Although she loves him, we imagine that it will be difficult for her to take care of Oscar while having her own baby…” Puri and Juaco
“Since Juaco retired, he has been very involved in the care not only of Óscar but also of his mother, who until recently lived with us. But … we are getting older, Óscar no longer is yesterday’s boy, today he is taller and stronger than us … A few months ago Juaco was admitted to the hospital and his mother had to go live to a residence because suddenly I was faced with the impossible task of caring for three people: two dependents at home and my partner in the Hospital. Óscar misses his grandmother and his brothers, who have grown up, have become independent. It is an adaptation stage that affects us all emotionally. One more challenge among the many we have gone through.” Puri
Oscar knows how to set limits. Choose, ask, negotiate and do not forget what is promised. When he got tired of the photo shoot I was doing, he simply turned off the light.
In an eloquent way, he ended the day.
Sincerity without gadgets, spontaneity in gestures, and humor that resides in the absurd and throws overboard the rational structures that we sometimes strive to sustain, are contributions practically ignored by our society flawed in hypocrisy, laws and rules.
“We have this caravan with which we have made a few trips together with Óscar. The last one was “at the end of the world” (we went to Finisterre). A wheel punctured in a curve and the friction of the tire damaged the floor of the caravan and we could not longer use it to continue traveling. We have retrieved it, and parked it in our yard. When Óscar is at home, accompanied by his caretaker, with Puri we take a break in “El Refugio” (The Retreat) which is what we have called our Sun Roller caravan “FIESTA”. It is certainly a small “PARTY”. There are no luxuries. But we can see a movie without the soundtrack imposed by Óscar’s voice or simply have a coffee or read for a while … We can disconnect from the responsibility of caring, to rest and see each other, not as mother and father, but as a couple ”. Juaco