Consumer Involvement
My 10-year old daughter, Daja, was diagnosed with autism at the age of 2 years old, and I have been on an autism roller coaster ever since. I say this because of the way it has affected the entire family. We have had many lows and many highs. It has separated us because of all of the family members that were in denial when I initially reported the discovery. It was scary and hard. I had no idea what it meant to have autism. I didn’t know anyone with autism nor did I know where to turn for guidance. It was as if we mourned the child we thought we were going to have. We started to think about all of the things she would not be able to do instead of all the ways she would bless our lives and all of the outstanding things she could do. In many ways, autism has brought us together with those who love and support us on this journey, the new friends (like family) we have gained at support group meetings and at therapy sessions, and the team of clinicians that believe with us that autism does not define her. Daja is amazing. She is an awesome dancer; she often performs a praise dance for residents at a nursing home. She recites scriptures for Sunday services. She is part of a competitive dance team that performs majorette, cheer, and pom dances. She is so loving, compassionate, and hilariously funny. We love to travel as a family, explore our city museums, complete science activities, and walk with our dog. She has made us believe that she can do anything. She has decided that she wants to be a veterinarian, a dancer, and a math teacher. Autism has caused us many sleepless nights, tiresome days, lots of therapy visits and doctors appointments, but it has also taught us perseverance, hope, and determination.
I am a part of The Answer Inc. Autism Awareness and Support Agency, where I humbly serve as Program Coordinator. I am very passionate about this role, because I remember being in the same position as some of the families we serve, not knowing what to do or where to turn, attending my daughter’s Individualized Educational Plan (IEP) meetings not having a clue of what was going on. I did not understand the process or our rights. Now, I empower families that are in the same situation that I was in. I assist them through the IEP process. I help to connect families with services as well as create curriculum and coordinate Spectrum University, a tutoring program that teaches reading, writing, math, and social and life skills to persons with special needs.
I was nominated as a peer reviewer by Ms. Debra Vines, CEO of The Answer Inc.
My experience with the Autism Research Program has been extremely rewarding by allowing me to have the ability to give input on innovative ideas that will possibly impact my life and the lives of many others who strive to find solutions to help with the struggles of autism. I was given an abundance of assistance any time I had a question. The instructions were clear and the telephone conferences were very informative. During the in-person review, all members of the panel were friendly and willing to elaborate on concepts that I needed further explanation of. I felt an overall sense of pride to be a part of this process. I am impressed by the level of commitment the scientific community has devoted to addressing needs of autistic individuals and understanding how autism affects the entire family and not just the individual. I am forever grateful for the dedication and hard work the scientific community has put into the research of autism-related studies.
Last updated Tuesday, November 12, 2024