The idea for this research study came about because of my experience as a mom to two amazing boys who are deafblind. This article is based upon my dissertation. I included the following vignette in my dissertation and I wanted to re-share it to give some context behind “my why”. Still when I read this, it makes me emotional. I know I am not alone and that many other families feel emotional when thinking back to any struggles in advocating for their child’s needs.
As I struggled on my journey to help my children who are deafblind get the education they deserved, I finally realized that teaching them to advocate for themselves not only resulted in success at school, but in life as well.
Research Synthesis: The Benefits of Teaching Self-Determination Skills to Very Young Students with Sensory Loss
I am the mom of two boys who are deafblind resulting from Usher syndrome, our oldest being 22. I did not learn about the Expanded Core Curriculum (ECC) until our oldest son was in high school. Until that point, our son’s Individualized Education Program (IEP) team was focused solely on supporting his academic progress. He also had an orientation and mobility specialist who worked with him on cane skills and a teacher of students with visual impairments who consulted on an as-needed basis. Once I started researching the ECC, I saw that self-determination is one of its nine core components and became interested in learning more.
This is the time of the year when I like to reflect on what I’m thankful for. It’s been a really rewarding, yet challenging year.
Guest author, Divya Goel, shares her journey to self-advocacy and living her dreams as a young woman with Usher syndrome.
Lanya (Lane) McKittrick is the Chair of the Board of the Usher Syndrome Coalition, founder of the Hear See Hope Foundation, and deafblind education researcher and founder of Lane of Inquiry. Lane received her PhD in Special Education at the University of Northern Colorado. Her research, advocacy and family support work are rooted in her personal experience as a mom to four sons, including two who have Usher Syndrome, the leading genetic cause of deafblindness.