Eileen and Xavier, beyond a diagnosis

Eileen and Xavier, beyond a diagnosis

By: Yarimar Marrero Rodríguez

In the month of mothers we want to share this beautiful interview with Eileen Arroyo Alicea and her son Xavier A. Rivera Arroyo who was born with cerebral palsy-spastic quadriparesis and from the beginning of SER until the moment they paraded together at the master's degree graduation, They are a beautiful example that for them there are no obstacles that love has not overcome.

YMR: Xavier is one of those students who has left his mark on SER. Tell us, since when did you start receiving services in our organization and what memories do you have of those years?

EAA: Xavier started at SER in Kindergarten and stayed until his fourth year, graduating in 2005, receiving all the occupational and speech therapy services. Even when he graduated fourth year he didn't start college fast, Xavier was going to SER to do volunteer work as a courier. My son was in all the school activities and in all the associations. In his fourth year, he even had the idea of organizing a senior cruise trip. The boys were very excited, the parents of the children were unconditional, it was a team effort, everyone sold, looked for sponsorships, gathered, the thing is that we did it and we enjoyed it very much. My son's class was the first to plan a graduation trip. We still come to SER today because Xavier receives therapy here.

YMR: In the interview that I conducted with the supervisor of the Speech Therapy area, Carlos Cardona, he told me that you were a key player in his son's success. How was the process of adaptation and learning of Xavier and the whole family to the technological assistance team?

EAA: Xavier was one of the first to have a Tobbi in SER. It is a team that speaks for him and he already had recorded messages because they had some templates. Then over time the brother's voice could be recorded. We as parents went to all of them and Xavier's father, José Luis Rivera, is more technological than me and every time the version he already had of the equipment expired or the batteries began to run out, like every four years and that is a very expensive equipment, we tried to replace it. Technology has been a blessing in Xavier's life and in ours because thanks to it Xavier has been able to express many things that he otherwise would not have been able to.

YMR: As a mother, what were the tools you used, before you had assistive technology equipment to communicate with your child?

EAA: I used not, I still use. We have a language like signs, but very personal, very Creole. It was the system he used at SER and at the University to answer the exams. For example, the questions have to be to choose A, B, or C, and with his fingers he shows you one finger for A, two fingers for B and three fingers for C. Also, if the answers are Yes o No, one finger is yes and two fingers means no. If he gets tired with his fingers then I look at his face, if Xavier laughs it's Yes, if he gets serious it's No because verbally he can say yes or no but he also gets tired. I would not tell you that I trained to understand it, I would tell you that as a mother I intuited it.

YMR: Tell me a little about Xavier's academic preparation.

EAA: Xavier entered the Universidad del Este, which is now Ana G. Méndez de Carolina, and did a bachelor's degree in Criminal Justice and finished it Summa Cum Laude. Then he did his master's degree in Criminal Justice accompanied by two more, Criminology and investigation. At the University, Xavier was the president of the Association of Students with Disabilities and was the assistant basketball coach. I accompanied Xavier to the classroom at the University, then they got him a notepad because I don't write so fast, so the notetaker and I were there. As a mother, I always had to be there to give him snacks, medicines, lunch and meet his needs. His father came every other day and helped me change him. I say that I graduated from hall 101, both times, they put me in a gown and I paraded with my son (he comments between laughs). After graduating, Xavier has not gotten a job because he says: “they see the chair, but not me”, but he did not sit idly by and dedicated himself to giving motivational talks to potential school dropout students.

YMR: How does it feel to think about your son's diagnosis and maybe all the things you were told you couldn't do and now see all the accomplishments you've made?

EAA: Girl, how am I going to feel... Let me tell you this anecdote: when Xavier was 6 months old I took him for an evaluation with the neurologist and after carrying out all the studies, when they were going to give me the results the doctor told me: " mother of a thousand, one, manages to fulfill herself in life”. And with this faith that I have always had because God has never left us, I take my little boy, put him in front of the neurologist and tell him: well, take a good look at this face, because he is going to be one of the thousand. I go to the car and there I burst into tears. Then I wipe away my tears and tell my son: "Let's go to 'ante Xavier because only God knows how far you're going to go and the purpose of your life." I am so proud of Xavier because my son is a brave warrior. My son is not intimidated, my son doesn't say I can't, my son says "I'm going to try" and I answer him, try and no matter how many times you have to try, keep doing it. Xavier is my role model because many times I say: God, I'm tired I can't take it anymore and then I think, but how am I going to say something like that? If I have the example I live here. Your perseverance makes me feel like the most blessed woman in the world.