We've been busy since moving to the Ranch and I'm giving you an update on our progress, what we've learned about ourselves and how living with the animals is impacting all of our lives.
The pandemic challenged our way of thinking about education and, as I look back, I realize that the past year has given all of us opportunities to become better leaders.
Guest author, Divya Goel, shares her journey to self-advocacy and living her dreams as a young woman with Usher syndrome.
by Nilam Agrawal
I wrote this poem in May, 2012 when my daughter was 2 1/2 years old. She was acutely sick with H1N1 and had to be intubated. She went from being a sighted child, to suddenly losing all of her vision in both her eyes (she started losing her hearing 6 months before that due to an episode of high fever). For 3 long weeks she was in a world of total darkness and total silence. Then, she began to see in low lights and regain some of her hearing. That episode was a new turn in our journey. My husband and I were hurting and nervous. She was scared and lost. We had no idea what help we needed or how to support her. I wondered, if she could say what she was feeling, what would she say? I wrote this poem to help me find a purpose and find something to hold on to when I was struggling to even breathe. For the next 5 years, we went through two different medical (‘mis)-diagnosis before receiving the correct diagnosis of Usher syndrome for both our kids in December 2017 (a decades-long medical journey that started with our older son in 2007).
In the early months, when you know your child is struggling to learn but you don't know why, you can feel very alone. I know I did. Here is what I learned on our journey to getting support for my son.
This article was originally published on Paths to Literacy by Marnee Loftin, a retired psychologist who a wealth of experience in assessing students with visual impairments. This article was reprinted with permission from the author
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.
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.