\o7 Ten years ago, Rosario Marin gave birth to her son, Eric. The event changed her life more than she could possibly have anticipated because Eric was born with Down's syndrome, a chromosomal abnormality affecting intellectual and physical development. Marin made a decision that day to end her career in banking and devote herself to her son, eventually becoming "the Latino voice within the disabled community and the disabled voice within the Latino community."
Today, Marin campaigns for the rights of the developmentally disabled through her positions as councilwoman for the city of Huntington Park and chairwoman of the state Council on Developmental Disabilities. She founded the first support group for Spanish-speaking families with children with Down's syndrome, FUERZA Inc. Marin sees a special need to create awareness in the ethnic communities.
Rosario and her husband, Alex, live in Huntington Park with Eric and their two other children, 5-year-old Carmen and Alex Jr., 3. She was interviewed by Rutely Conde.
Q. What were your thoughts when you first learned that your son had Down's syndrome?
A. They were very difficult and painful. The one thing that I knew is that I did not want anyone to pity me or my son. This was my first child and we were expecting a healthy baby. I had a great pregnancy.
Initially, I had very contradictory feelings. On the one hand I said, "Oh my God, this little creature here is causing me a lot of pain." And on the other hand you realize that this is the guy you've been waiting for, for nine months, this is your baby and it is no fault of his that he was born with Down's syndrome.
It was tough. You see your child and you don't see the Down's syndrome, you just see this beautiful baby. But you know that later on there will be difficulties.
Q. What is your biggest challenge as the parent of a child with a developmental disability?
A. For me it's an everyday challenge. I just hope that he is protected, taken care of, that his needs are satisfied and that he's happy. I can't plan for the future; I stopped doing that when he was born. My greatest fear is what will happen to Eric when I'm gone. That is why I have worked so hard to leave this world a more willing place to take care of people like my son. It has to be systemic, a community and a statewide and national commitment to provide the best that we can.
My husband, Alex, has been tremendously supportive. When I would say, "My God, why us?," he would take a different perspective and say to me, "Why not us? Why would we be spared?"
And it's true, things happen for a reason, so why not us? The kids are great too, when they play, it's very beautiful to see that the Down's syndrome is not there, but the protection is. Carmen is completely conscious of Eric's Down's syndrome and has a tendency to protect him; she's matured a lot because of Eric. Alex Jr. is too young to understand, so he fights Eric like he fights with other kids, but that's what kids do at that age. All three get along beautifully; they fight and play just like other brothers and sisters.
Q. Since Eric was born, has there been an improvement in the services provided for people with developmental disabilities?
A. Oh yes, 10 years ago, services were delivered in a very clinical way. It was a group of people deciding what your child needed and what your family needed. Today, because of the significant changes in legislation, it is the family that decides what the child needs; now they are an integral part of that decision team.
Q. Since you founded FUERZA Inc. eight years ago, has there been an improvement of services for people with developmental disabilities in the Spanish-speaking community?
A. We have created a tremendous awareness within the ethnic minority. Culture plays a very important role in accessing any service. With disabilities, it's exacerbated. In our community, having a child with a disability still has a lot of stigma attached to it.
Q. What if Eric had not been born with Down's syndrome?
A. I was going to be a banker, I was working in data processing. I was only 27 (when Eric was born) and was going to be made assistant vice president for the bank. I was working 14 hours a day even though I was pregnant. I was going everywhere, I had a great future.
At the beginning, I felt I sacrificed my career, and there was resentment. I gave up my MBA, my job, we had to sell our house. For a while there, I was thinking this was not good. Ten years later, I realize that sometimes life puts you in a set of circumstances that you have nothing to do with. The only thing you have control of is your attitude, your responses . . . how you are going to face that circumstance. I could either hate myself to death or go out there as I did and do the best that I could for my son and people like them.
Q. How do you balance your life as mother, advocate and public official?
A. I will always be a mother with a child of disabilities no matter where I am, no matter what I do. I wear the hat of a mother, of a community member, of somebody that needs services, that wants equality and I take that with me to my different functions. Being the mother of a child with disabilities has helped my career because I have tremendous credibility.
Q. Is it difficult to keep from overprotecting Eric?
A. I am going to give Eric the opportunity to develop, but I'm not going to take excessive risks. My first and foremost concern is his safety. I am paranoid that he is going to break his neck; he has had two major neck surgeries. So you bet I'm going to overprotect him in that regard. Other than that, I let him do whatever he wants and I watch him. I hope he can be as independent as he can be and that is no different than what I want from my other two children.