by Jenilee Estevez – Occupational Therapist at Always Keep Progressing
As a little girl, I would beg my mom for a sister to play with, until one day she was here! When I was 5 years old, my parents brought home my perfect baby sister, and our family was finally complete. It wasn’t long after that I became my sister’s “second mommy,” feeling like it was my duty to always take care of her, protect her. Twenty six years later, that is still the case.
Growing up we had a beautiful childhood filled with family and love. My parents always made sure we had everything we needed, and I loved having my baby sister to share life with. We were your average Cuban family living in Miami. It’s now 1998, I’m 8 years old, and our family was about to be shaken up with this foreign information at the time. My 3 year old sister was diagnosed with autism.
My memories of this time are different than those of my parents. I didn’t see everything they were going through, and how they were first learning what it meant for my sister to have this diagnosis. Throughout the years, and now as an adult, I understand more and have heard about their experience years ago. Today, 1 in 54 children are diagnosed with autism. When my sister was diagnosed it was 1 in hundreds. My parents struggled with the unknown, and had far less resources than there are today. My parents had no idea what this meant for my sister and her future, or how to begin navigating these uncharted waters.
My sister began speech and occupational therapy soon after her diagnosis. My sister would not speak, and had poor self-regulation skills resulting in terrible tantrums throughout the years. My mother being proactive about her course of treatment, sought out the best program in a public school at the time to help children with autism. This meant my mom had to drive to another city to take my sister to school, meanwhile my grandmother would take me to my elementary school right next to her house. This continued until I was in high school. Looking back, I am grateful my mother had the support of her family and her parents right by her side to help with me and my school needs during that time. My sister deserved nothing but the best teachers and classroom resources she can get, even if that meant going to another city.
I recall my mom on occasion rushing to pick me up from school, and then rushing with both me and my sister to make it to her therapy session. I remember sitting in the waiting room, bored most times since we did not have the technology kids have today, and wondering what was going on in there for an hour or two at a time. I was let inside once or twice during her therapy session, looking at all the toys in the colorful room and thinking, so they’re just playing with her in here? Little did I know that throughout all that playing, those therapists were bringing out the potential we all knew my sister had. At the moment, I thought the best thing that came out of my time waiting there was the huge double chocolate muffin my mom would share with me from the café downstairs. Now I know, the best thing that came out of my time and experience with my sister was my passion for becoming an occupational therapist. Twenty years later I am here, on the other side of that waiting room.
As much as I have always loved my sister, if we do go back however twenty years, or even fifteen, I was not always proud to talk about her to others. As I sit here and write these words I feel ashamed to ever have even thought them, to ever have been ashamed to talk about my sister and her diagnosis. But I was also a kid, I also did not understand what it meant for my sister to have autism. I had never heard of autism before my sister was diagnosed, or even outside of my mom’s immediate circle of support. As a kid I thought it was something that others would look at negatively, look at my family differently, naively misunderstanding the whole dynamic of the situation. I rarely told my friends, unless they came over my house and my sister was sensory seeking and pacing back and forth. My parents did not know I felt this way. I carried this with me until I got older, until I understood more, until I learned more. I am not proud of these thoughts I had when I was younger, but today I advocate for my sister and yell proudly that she is my sister with everything that comes along with that. My sister inspires me to be better and proudly share her journey to help others feel like they are not alone.
Today thankfully there are endless resources for parents and families online, in magazines, in support groups, etc., because mental health is an important factor when learning about a child or family member who is newly diagnosed with autism. I know personally my sister’s journey has affected my mother’s mental health, and with limited resources in the 90s, it was more of a struggle to manage at the time. Parents and family members should never feel like they are alone in this. Reach out to someone, a therapist, a counselor, a support group, a friend. You’re not alone, and we are all here for you.
My sister remained in therapy throughout the years, she learned to speak, become independent with her daily activities, and has even been in a relationship since senior year of high school. As most Cuban families we have been overbearing, and this is besides a diagnosis. There are a lot of things that everyone always wants to do for my sister, and on lazy days she will gladly let you. However, she is able to do so much more today, has her own opinions and views, and will definitely let you know about it. No filter as we say, but I wouldn’t want it any other way.
Now at 26, my sister is more than ever eager to find a job, and that is what we are focusing on at the moment. My family was given the information of an amazing organization helping young adults with unique abilities find appropriate job positions for their skills. The de Moya Foundation introduces young adults to professional work environments, instilling independence and helping them become self-sufficient. My sister has been able to connect virtually with other young adults and has taken classes online such as money management, and vacation planning. These past few months have been an exciting chapter for my sister and family, as we embark on this new journey with her.
My sister is an artist, a dog mom, emotional, an over thinker, witty, smart, caring, and beautiful. My sister is not just a diagnosis, and no one with autism or any diagnosis should ever be labeled as just that because they bring so much more to the world. I wouldn’t be the person I am today, or the occupational therapist I am today, if it wasn’t for my sister. Through all the hard times, and all the obstacles, I wouldn’t want my sister any differently than who she is today. She was my perfect baby sister when she was born, and still is to this day.
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