Shelley’s Story “Living Beyond My Diagnosis”

Autism, to me, is just a different way of thinking and understanding life. But, life throws some curveballs that I, like everyone else, need to face. I have off days just like everybody else, and I do struggle. I sometimes have a hard time communicating my needs in situations where I need the most help. But I want to be a part of society and not shut out from the world. 

When I was 2 years old, I stopped talking completely and distanced myself from the world around me. Eventually, I went to a special preschool for children with disabilities for three years. I was sensitive to certain sounds and pitches, therefore I screamed and threw tantrums a lot. I had difficulties transitioning from one place to another and could not follow directions. I spent a couple of years in a self-contained class outside of my home school district, but my parents realized that this was not the best environment for my potential. Therefore, they helped in creating a program for me to be placed in a mainstream academic environment in my home school district where I was taught from third grade on.

By the time I made it to high school I was faced with a whole new slew of challenges for me as a person with autism. Even though I was almost on par academically, I was an outsider in terms of my social life. I was not able to make friends and I felt different, and I did not understand why. My mother saw how frustrated I was and how I wanted some answers. So she took me to see a clinical psychologist to whom I expressed my feelings of being shut out from the world and not knowing why. This was when I was finally told in person that I had autism. It took me a little while to accept the fact that I was diagnosed with this developmental disorder. But on the other hand, my sweet mother encouraged me to look at it as having a “different ability”.  It was a big eye-opener for me to hear that in the big scheme of things, I am really not alone, and there is life for people like me.

After high school, I attended a three-year vocational program called the Vocational Independence Program (V.I.P.) at New York Institute of Technology. This was where I felt like I truly belonged. I was so amazed by how much I could relate to these students who went through many challenges and obstacles like I did. After I finished the V.I.P. Program, I attended Suffolk County Community College. I felt very stressed out. I went back and forth between talking with administration and struggling with the maze that a large-sized college can present.

During those years that I attended community college, my family and I were introduced to a program called Self Determination through the Office of People with Developmental Disabilities (OPWDD). People with the full range of developmental disabilities and intensity of support needs are given the opportunity to create truly rich, meaningful lives on their own terms as well as make their own choices on how they want to live life. So, how has CSS helped me? I will start by saying that it has been a wonderful eye-opening journey for me. It had definitely helped me to see what true freedom feels like. I got to hire my own staff, who are part of my Circle of Support (COS). My Circle of Support also includes my Medicaid Service Coordinator, my Support Broker, my parents, my job director who acts as my job coach, and a family friend. I have a life coach/mentor and two support specialists who assist me in learning different skills: stress management, problem solving techniques, planning, daily living skills, travel training, home management, community integration, socialization skills with many of my peers, and self-advocacy. Thanks to Self Determination/CSS, I’ve been able to do things that I’ve never done before such as hosting gatherings and parties at my own apartment. Also, I’ve been learning how to cook and prepare meals for myself. I learned a lot about money management as well as keeping track of my own budget.

Right now, I’m living in a one-bedroom apartment. I no longer have a roommate as I manage my life better on my own. I graduated in 2011 from SUNY Suffolk with an Associate’s Degree in Early Childhood Education and I work full-time as a teacher’s assistant at Nassau Suffolk Services for Autism, also known as the Martin Barrell School. In the future, I may be thinking of getting my bachelor’s degree in special education or psychology and hope to do some community theater on the side. During my leisure time, I love to sing, dance, and act as well as go to concerts and read tons of books. I would love to travel to different places. I’ve been recently spending my leisure time exercising at my local gym, going to Weight Watchers meetings, and doing singing events with my friends who are also a part of Self Determination/CSS. I recently got involved with the Self-Advocacy Association of New York State (SANYS). Attending monthly meetings with them have empowered me to better understand my rights as a person with different abilities and to advocate for them.

Looking into the future, I envision myself continuing to take part in advocating for people with autism and other developmental disabilities by participating in conferences, rallies, and legislative events. I also would like to advance in my profession by taking more courses towards a higher degree. I am contemplating taking online courses where I believe it better suits my way of learning. Traveling is a big part of my future. I’d like to see different parts of the world and maybe I will find group tours that I can join. I would like to spend more time with my family, parents, sister, and brother, and especially my two little nieces which I’m very fond of.

Within the past few years of being on Self Determination/CSS, I have been given many opportunities to enhance my social life. I’ve been and still am involved with a singing group called Glee. Glee consists of many other Self Determination/CSS participants who gather together at a central nursing home every other week. Being in Glee allows me to enjoy this passion of mine.

Another aspect of my social life that I am a part of is also something that I enjoy. I happen to be a huge fan of the singer Adam Lambert and have been following his career for years. To further sustain my appreciation for Adam, I belong to a local chapter of his fan club that gathers periodically at a local restaurant. Some of the members of this group may decide to go on trips to see Adam Lambert in concert. I appreciate all the friends I’ve made through this group, and enjoy the fact that I can be myself around them.