Víctor is a 12-year old boy, cheerful and full of life, who wakes up each morning ready to live life to the max and enjoys school enormously.
There, he has no maths tests or homework. It is a very special school, because he, like his classmates, has cerebral palsy, and his school curriculum is very different from a conventional one. They face up to life by preparing to survive in the world; their challenges consist in moving that muscle a little more, or learning how to cough so that they don’t choke on their own phlegm. These children are quite seriously disabled and need the constant care of an adult. Even so, they are the happiest and most affectionate children you can meet.
"El Despertar" (www.eldespertar.es) is an officially recognized school and is managed by a parents’ association of the same name. It was necessary to join forces to tackle problems we all faced, as it is not easy to meet the needs of these “little ones”, who are and will always be children. Their needs are forever and their dependence on adults are just as permanent.
The school is not a sad place as one might at first imagine. On the contrary, there is a palpable atmosphere of joy and family spirit. This is your home, your teachers are here, your physios and the rest of the team, and here are your classmates. Red-letter days are celebrated with great enthusiasm: Christmas, Carnival, San Isidro, the Water Festival, and so on, as well as the beginning of each season of the year. And, when we don’t have an official fiesta coming up, we invent one and, for instance, we organize individual activities to celebrate Around the World in 80 Days, or we sow seeds that we can then water and watch the grow, Basically, we learn and do our therapy sessions in family, caring environment.
Basically, we learn and we do our therapy sessions, cheerfully in a familiar and affectionate environment.
The parents association is the Board of Governors that manages the School, the Day Centre and the Residential Home. The first children have grown up now, as will the other children who come to us, and when they are about 18 years old they leave the protective umbrella of the Department of Education. They graduate, but these children whose condition is so severe cannot go to university or do professional training. They cannot aspire to joining the workforce; that is for others who are better able. Our children will always be children, and they have to move on the Day Centre. This is simply an administrative transition, they move from being the responsibility of the Department of Education to that of Social Services. For them it is simply a matter of passing from one classroom to another in the same centre. After that they move on to the Residential Home, which will be their home for the rest of their lives. In all this process, the parents will be getting older too and it is essential that society ensures that the lives of these eternal children will be able to continue when they are gone.
We can measure a society’s achievements by its scientific and technical advances, but let us not forget that another factor that measures that society’s success it treats its least fortunate members
Fundación Nido has always supported the parents association and this support naturally extends to the School, the Day Centre and the Residential Home. They are our “fixers” as it is they, with their characteristic determination, who most actively raise funds for the centre, setting up Christmas markets, organizing charity events and contacting people in general. Among the 60 families in our centre we are fortunate to have Andrés Aberasturi who is the most prominent figure that represents this movement from the point of view of media exposure and social recognition.
When we need something for the centre, we do everything we can, but in many cases we end up asking Andrés to, once again, put on his fixer’s cap and help us to meet that particular need. And I can assure you that there are many such needs. At times it seems like an obstacle course, but if you look at it from an historical perspective, we are deeply satisfied as we have achieved what was our first priority: the Residential Home.
Many families know all about long periods spent in hospital fighting for the life of their child. When science and medicine have saved these children’s lives, however, they are sent home.
This is when the search begins for a suitable school. They visit many schools, but if the child’s condition is really severe, none seems to meet the child’s needs. Not until they come to El Despertar do they see that there are many other children in the same circumstances as their own. They drop their child off at the school and for the first few days they are anxious to see if indeed this is the right place, until they gradually accept that their child is better of here than he or she would be at home.
At home we tend to be over-protective but in the School, with all of the care in the world, we offer them many more activities and therapies than you could possibly provide them. To take the simple matter of meals, in the school you can see that their diet is much more varied and that they respond extremely well to having a regular timetable and leaving home every day.
Having a team of physiotherapists who specialize in these children is a need that impacts directly on their physical well-being; we can get them to achieve more that we might imagine at first. The younger they are, the better to start with these therapies. After the summer break, the children come to the school needing their physios to treat them after having gone some time without exercise, as it is clear that they are not in such good shape. In those days in September the physiotherapy team has to work hard, so you can imagine how important the school is for these children.
For the families, it is crucial to be able to rely on the school and be able to have those hours to normalize their own working lives and care for the rest of the family members, the other children and the grandparents. When a child is born with severe problems, in many cases the mother gives up her job and when the hardest years of hospitalization are over and the school can normalize the situation, the mum can return to work. The school is a vital element for helping all the family members get back to leading a normal life, especially for the mother.
Victor’s face lights up when he knows he is going to school. It is an extension of his home. There he sees his teachers and classmates. As it is a small centre, everyone knows everyone else and they always have a kind word or a pat on the back for each other. They have their activities to stimulate them and their therapies, which are fundamental so that they can grow at their own speed and notably improve their quality of life. A multi-sensory room, a vegetable garden and orchard, the pool, sports, dance, drama class or singing. It is also important to learn to swallow food properly. There are speech therapy classes to help them improve their language ability, which may be limited. New technologies are tried out such as tablets or touch-screen monitors, and in some cases we have experimented with systems that allow one to handle a simple application with one’s eyes or head movements.
They come together for story-telling and acting out. Music is important to signal that it’s time to say good morning to everyone, that it’s lunchtime or time to wake up from an afternoon nap, then time to get ready to go home in the evening.
From time to time there is an field trip to the Zoo or to a nearby shopping mall, or just going out to enjoy the sunlight when the weather is fine. Each of these activities, simple as it may seem. Is a big adventure for them and they really get a kick out of it. Another favourite event is the chocolatadas in honour of San Isidro.
So it comes as no surprise that the children look forward to going to their school, where there are not tests or exams and they don’t get a telling off if they have left their maths textbooks at home. The school is a space for learning, for improving their quality of life, to socialize with others, grow as individuals and extend their limits, which are many and varied.
When you have a child that you know is going to be a dependant all their life, your main concern is knowing what will become of him/her when you are no longer around. Although the child may be small now, you plan ahead, and you see that after the school comes the day centre, and ultimately your child will need a residential home so that he or she can be receive the proper care and attention.
It was this need that led the parents, many years ago, to look for the resources and the means to build a suitable home for these children who suffer from cerebral palsy and multiple deficiencies that make them completely dependent on others.
The parents knocked on many doors, public and private, and were ignored. Fortunately Andrés Aberasturi, the most determined of all our Dads, refused to throw in the towel and one fine day had the idea of contacting the foundation whose patron is Esther Koplowitz, sending her a letter enclosing one of his books. Shortly thereafter we received a very positive reply. This came as a great and joyful surprise, as we had been knocked back so many times that we found it hard to believe that someone had sympathised with us and understood our needs. What is more, she was clearly excited about the idea. We couldn’t believe it, We were deeply moved.
We encountered red tape with building permits, planning permission, changes in the project design, and a series of other hurdles that delayed the implementation of the development for years. In all this time we had to get through a downturn in the economy, yet in spite of all these difficulties the project came to fruition. We are aware of the enormous effort and emotional investment that has gone into making the new building possible. We, the Centre’s current parents know this well and our children will in time benefit from the new residential home. But the process doesn’t stop there, as this achievement will make room for many other children as yet unborn, and will be a blessing for their families, and for society as a whole. Nobody is immune to the possibility that a son or daughter, niece, nephew or grandchild may one day be among the Centre’s children, since this a matter of chance and we all have our lottery tickets, as it were.
The building is superb, as are its facilities and in particular the sensitive details in its design and execution. Our thanks go to Ricardo Landaluce and his enthusiastic team of architects, and thanks also to FCC, who have made this possible.
And, above all, to the Esther Koplowitz Foundation for their vital drive and enthusiasm. This is your achievement and the echoes of the children’s laughter down the corridors will be heard by the children who will call it their home for many generations to come.
I imagine a future when in a hundred years’ time we will be celebrating the first centenary of the Residence’s founding. By then, hundreds of children will have passed through its doors and it will have given peace of mind to many, many families.
It will, in short, have contributed something of great value to society.
In that distant future, the main residence’s main building will be in the midst of new ones with more beds and spaces of therapies for its users. It is likely that medicine will have made great strides but it is also certain that we will always have children with cerebral palsy and similar conditions. There has to be a place to cater for these children and, if it is fit for purpose, it will speak very well of the society that shelters them. The quality of a society is not measured only by its gross domestic product or by the number of goods we manage to consume; it has to be measured by the care we give to the most vulnerable, to that lowest rung of society, those who are 100% dependent.