What started it all 'My Isabela's untold story'

'My Isabela's untold story'

Published: Sunday, December 18, 2011

Publication: The Miami Herald

By: Raquel Regalado

Maya Angelou wrote that, “There is no greater agony than bearing an untold story inside you.” On some level, however, we are all made up of untold stories, of intimate truths that we share only with our nearest and dearest. But as a child of public figures my life has had few untold stories; privacy, after all, was a luxury that we were not afforded. A little over a year ago, however, when I became an elected official I learned the hard way that it could, in fact, get worse and that some people are more interested in how I drive, where I go and what I wear than in the policy changes that I’ve made and in the causes that I have chosen to champion. Honestly, the scrutiny and the curiosity don’t bother me per se though it often hurts the people in my life, and I wish that I could shield them and channel it in the direction of what is really important: the obligation that we all have to provide Floridians of all ages, ethnicity and abilities with an excellent education. I do recognize the validity of the argument that as elected officials we are role models. And yet I’ve never wanted to be a role model for anyone because I believe that we are all on this planet to become the best version of ourselves and not a second rate version of someone else. I don’t believe that being a public servant makes me less human or less worthy of the respect that I afford others. Nevertheless, today I’m sharing my untold story because sometimes purpose trumps privacy, and we are afforded the opportunity to provide others with hope and the realization that we are all more alike than we think. Today I share with you that I am the mother of an autistic child and that I am an elected official because after years of trying to change my daughter, she changed me. I started testing my Isabela at 18 months. At first, the diagnosis was speech delay, then selective mutism and at one point I was told that if I didn’t stop anticipating my daughter’s needs she would never speak. Isabela and I went through early steps, through a myriad of speech therapists, until finally at 5 a neurologist confirmed what by then I was certain of, that she was autistic. Isabela and I were officially a statistic, one in 110 and later one in 38. And before I knew it, like many parents of a child with special needs I soon found myself divorced. Having just lost my mother, there were days when I, like Isabela, needed a visual schedule to show me what came next, as I desperately tried to make sense of our new life. After years of reading about autism in the hope of understanding my daughter, I stood before my own personal abyss and finally understood what it feels like when the world around you moves too fast and your senses are flooded in such a way that you can’t even categorize, let alone express, your feelings. At the time, Isabela was at a charter school that she loved very much, but once her Individualized Education Plan was final I was told that she couldn’t stay. I was devastated; I was still trying to explain to Isabela why her grandmother and father were missing, and now I had to explain why she couldn’t stay at the only school she had ever known. The reality is that change is difficult for any child but it can be devastating for an autistic child so I offered a myriad of solutions in the hope that my daughter could stay with the teachers she had grown to love. Unfortunately, even though Isabela is high functioning the answer was NO. That night I sat on the edge of my daughter’s bed and began to cry. Isabela looked at me tenderly and said “Mommy, too loud, too tight, too bright?” As if by magic, Isabela’s empathy not only shattered the autistic box that all the tests had created for her and for me but it also gave me hope that one day she could thrive in a world without my constant protection and supervision. In the months that followed I met with parents of other autistic children who were not as functioning as my Isabela. I learned about the limitations of the McKay scholarships for special needs students, about the lack of options in the urban core and soon found myself meeting with parents of all sorts of special needs children, hoping to find answers and to find in their stories hope, strength and inspiration. As I searched for a school for Isabela, I found myself sitting in the back of PTA meetings listening to complaints about all sorts of things, many of which had nothing to do with the particular school but rather with school board and state policy. Afterward, I would watch Isabela sleep and wonder about my obligation to her and to the over 30,000 children in Florida that needed a voice. So I decided to run for office knowing that I would have to give up the little personal time I had and would need to find a way to shield my children from politics. And so I decided that I wouldn’t mention that I was a parent of a special needs child partly for Isabela’s sake and partly for my own since I knew that there were some who would get caught up in the special needs label and miss the larger message. After a year of service to Miami-Dade County Public Schools, I believe that I have proven that I am much more than just the “daughter of a politician” and, more important, I have proven that a parent of a special needs child can serve all children. Today I hope that revealing this untold story will answer many of the questions about my drive and ambition, that it will reveal that the source is a wide-eyed eight-year-old who has taught me patience and courage, who has given my life purpose and in whose eyes I see a brighter future not just for special needs children but for all children. Today I hope that my Isabela and all the children like her will inspire you to fight for a better Florida, a Florida that is not defined exclusively by academic achievement, a Florida where healthcare is not pitted against education and where choice is available to everyone. Raquel Regalado is a Miami-Dade School Board member.