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Lorena Gimeno is Miguel’s proud mother, A 13 -year -old boy with autism and great support needs. A few years ago he stopped working to take care of him and, since then he dedicates himself full time to meet his needs, an arduous task but makes him feel where he has to be.
Miguel was a very desired childWell, Lorena and Dani managed to be parents after several attempts, so when he reached the world, a few weeks in advance, the whole family was crazy, «when she was born, we did not notice anything, but as the months went by the months and We saw that its development was not normal. I even, on some occasion, I got to tell the doctor who believed that my son was autistic, but he told me ‘What’s going! How are you going to think that?’ I already sensed it because I saw that there was an important communication barrier between him, even if it was a baby, «he recalls Lorena.
Indeed, as it was growing, their fears were confirmed, «on the one hand, it is a relief because you final The image that I had of autism was that of a child hitting a wall, he had no idea. »
Little by little, as Lorena remembers, they found their way, a path that was not, much less exempt from obstacles, «we arrived at the center of Early attentionwhere they explain to you, guide you, you start to generate expectations of what your life can be… And very well, but the school was a great obstacle, I did not see my son at school, and for us it was a suffering. »
It was an ordinary school, in which Miguel neither managed to fit, nor found the support Already understanding that I needed, not even in the Tea classroom, «with three years, I pissed and they told me that I had to take off the diaper, that I had to wait in a row, to be sitting … and I knew that my son did not I could do, «he says with anger.
Lorena remembers that time almost terror, even, says that ‘he was going to pick it up, «every day they told me what I had done: one day he had spent all day shining, another who had not been able to go to the reference classroom … It was four years of suffering Until they recommended to change schooling to a specific Special Education College for Autism. »
At that time, the problems in the family business in which he worked and health problems of his mother were joined at that school, which was the person who supported them in Miguel’s care, «the company was no longer going very well and I He had a lot of physical and psychological stress. I worked a lot and could not attend to him as he needed, «he recalls.
For me, stop working became increasingly necessary. I focused 100% on my son and since then, he has me for everything, and my son is another
Your new stage as a full -time caregiver
When the opportunity arose to sell and stop working, Lorena did not think about it, and between some things and others, the change in Miguel was spectacular, «for me, stop working became increasingly necessary. My mother died to the Once I stopped working, and from there I focused 100% on my son. It has me for everything, and my son is another«He acknowledges.
Now Miguel does not have as many therapies outside the school as he had before, he requires all the attention because, although they have some family support, such as paternal grandparents and their uncles, It is the main caretaker and the one who deals with everythingand Miguel needs help for everything, so he thinks he will not work again, at least for the moment, «my son is very old, very rich, nice … but he has a Severe autism And never to be independent or cross the street or go to a public bath alone. Over time, although every day is better, discounts and you adjust expectations, accepting your realityas I am not going to find a job that allows me to take care of my son, that he will not go to college or that I will not be able to take it to a wedding … «, he says.
And his reality is now taking care of it, although I miss work, «I take off my thorn helping in the association, but I am aware of what incompatible that is having a job with caring for Miguelto which I have decided to give everything I have, which is my time, «he confesses.
A time that sometimes also longs for her, to take careto have a respite or, as he insists, «to have the peace of mind of being able to get bad and not feel guilty if I am.» This is precisely a fear that the people who take care of us, what will happen to my son and I can not take care of. That is why Lorena sees so important that, from the administration, caregivers are more supported, not only with money, which is very good, but, and, above all, with external support that supplants them when they cannot or need to take care of themselves «It all depends on me, and that is a lot of pressure … I have come to operate alone so that my son was accompanied by someone who knows him, because while he is accompanied, I can do my things alone. But in the end, it is a support network you have to create, and with moneybecause the family over the years is being reduced, grandparents are older and I can’t leave my son with anyone, it has to be someone who understands him, he knows him. We have to pay that … And the unit does not give much. They are things that may seem nonsense for other people, but when you have a child with disabilities it conditions everything, I cannot do anything without thinking who is going to stay with him, ”he insists.
A salary for caring believes that, although it looks difficult, it would be fair, but at least I would expect to have more recognition, «when I listen to comments like ‘is that you do not work’ … what I do not have is a salary, but work, but work, but work 24 hours a day. It seems good to me that at least something is recognized in the law and we can quote and receive help, but we need more, things to ‘take care of the caregiver’. Because if the caregiver fails, we have a problem, we are very alone in that. »
In addition, although he assures that he does not think of a long -term future, which prefers to mark small goals in the short term and live the present, he cannot avoid thinking what will happen to him when she and Dani are not, «»I am terrified that he stays alonebecause he has no brothers, and since I was orphaned so young … «.
That is why, when we asked Lorena, what would you need to feel careful, it is clear: A strong administration that people like your child Have your needs covered, «I would feel psychologically careful if I knew that there is somewhere where, when I am not, they will take care of it, protect it … but today I don’t feel it is so.»
I would feel psychologically careful if I knew that there is somewhere where, when I am not, they will take care of it, protect it … but today I do not feel that way it is so
More leisure and support in adult life
According to Lorena, there is a lot to make it so because many media are missing beyond childhood, «at school, they are very well treated, but As soon as 18 other wrappers begin with headthey take away the benefit by son in charge, at 21 the Special Education College ends … In addition, when they are children, we are mothers to take care of them, because the best caregiver he can have is his mother -or his father -but, but What happens later? «He laments.
Nor is it thought that these children, as they grow, have leisure, something that believes indispensable, «we have spent a lot of time that we did nothing but be at home and go to the park, until we realized that we could not be Thus, it was something for a lifetime and we had to leave, and now Leisure is superimport. We plan it every week, because we have seen what helps you most, go to an amusement park surrounded by people, with noise, do things to wait … but, of course, all Our outputs have to be plannedwe do not leave anything to chance, we announce everything we are going to do … although it is very affected, you can take it to a restaurant, make leisure with it, you have fun, you love to make plans … «.
And, as Lorena likes to emphasize, like other adolescents with disabilities, «Miguel is autistic, but he loves people, feeling part of a group, That is why they have leisure, and as they are growing, this leisure disappears. «An leisure that, although they love to plan it with him, do not want to limit himself only to what he does with his parents,» in Araya, our Association, we organize a lot You have to pay it, and it is very expensive«
More support for associations such as yours would help a lot, because more parents could afford leisure for their children and breathe for them, «it is a reality that If you have money you have it much easierand the associations are always with the water around the neck. They do what they can, because the administration has them very careless. »
Miguel is autistic, but he loves people, feeling part of a group, so very important that they have leisure, and as they grow, this leisure disappears
She, on the other hand, lives up to date has learned to be happy with what you have And, from time to time, he throws a look to the future and longs for some of the things he has lost on the way … «I do not aspire to leave my heritage son, but that my desire is to leave his best to make sure that he will be Well careful. When I am not, I have a decent life, someone who takes care of himand humanize the care, I do not want it to end in a macroresidencia … and for asking something now, someone who will give me a hand in the day to day, to be able to travel with him, that my mother -in -law lived in my house -because it is the person who I better know him and take care of him after us-and that my mother would have lasted me a lifetime, because he was the person who best cared for me. As soon as I looked bad, I told me ‘sit down that I take care of myself. «
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