When your child has Usher syndrome, it's normal to be anxious awaiting annual vision and hearing screening results. As the mom of two with USH, even after 20 years, the flood of emotion tied to these annual visits remains, and that is OK.
Finding the right time to tell your child they are deafblind is a very personal decision. Lane shares her story and offers advice and strategies for parents facing this difficult conversation.
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.
I am excited to share my findings of my latest research study: The Importance of Family-Professional Partnership in Times of Uncertainty. A study of families with children who are deafblind during the COVID-19 pandemic.
As I was finalizing my research on the partnership between families with children who are deafblind and educational professionals during the COVID-19 pandemic, I was struck by the the critical need to keep open and frequent lines of communication to insure IEP success. Here are my takeaways.
Guest author and Lane of Inquiry board member, Nilam Agrawal, shares how remote learning due to COVID-19 fundamentally changed how her daughter, who is Deafblind, is learning to read.
Looking back always gives me good perspective to look forward. While 2020 was a difficult year in so many ways, there are many positive accomplishments that should be celebrated in the world of deafblind education and research.
If someone had told me six months ago that I would be leaving a job I loved, I would have thought that was crazy. Those who know me well know how much I love my job. It's been rewarding to participate in COVID-specific special education research, and I know that the work has helped many and that my contributions have been valuable. But for the reasons I explain below, I need to make a change. I'm excited to have more time to focus on myself, my family, and deafblind research and family support.
September 19 is Usher Syndrome Awareness Day. It’s always a day that causes me to reflect on all that I am thankful for.
As a research analyst at the Center on Reinventing Public Education, I've researched school/district response to the pandemic. I've interviewed many parents who have children with disabilities over the last six months about their experiences, and most recently, I've been tracking school reopening plans.
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.