Hear See Hope Co-founder Lane McKittrick is raising four boys, including two with Usher syndrome, and pursuing her Ph.D. in Special Education at the University of Northern Colorado. Her research interests are deafblindness and family-professional partnerships. Here she shares updates on parenting, her research, and public policy.
Hear See Hope Experiences Podcast
I’m excited to share my podcast about raising two sons with Usher syndrome. In my first episode, I tell you a little about my family, and our experience working with IEP teams. It can be stressful trying to advocate for your child, and I have learned a lot along the way working with schools to support my sons Conner and Dalton. One of the best thing we did was allow our kids to have input into their their IEPs, so I talk in about the benefits of student involvement. My hope is provide support, guidance, and advocacy for other families.
Find my podcast on Anchor.
Presenting my research about the IEP Process
I had the privilege of presenting my research at the first-ever Network of the Americas Conference sponsored by Deafblind International and Perkins School for the Blind April 16. Leaders in the field of deafblindness from 20 countries in North America, Central America, South America and the Caribbean attended this major conference.
I presented preliminary data from my research on Parent-School Collaboration and Conflict: Experiences of Parents with Deafblindness During the IEP Process. This research involved interview many families who have been through this difficult journey with their children. I feel so blessed to have talked with so many amazing, strong, families. I remain hopeful that this research helps lead to positive changes regarding family engagement, collaboration, and partnership.
I was joined by my mentors and co-researchers, Dr. Silvia Correa Torres and Dr. Sandy Bowen. I’m so grateful for their knowledge and support, and I look forward to completing this research and making a difference for people who are working with school systems to support their kids.
We were honored to receive the Foresight Award
Todd and I were so honored to receive the Foresight Award from the Usher Syndrome Coalition in 2017. We are gratified by the recognition, mostly because it helps draw attention to the many people like us who are focused on funding research and treatment to find a cure for Usher.
Since we started Hear See Hope in 2004, it has been a journey of learning and growing relationships with others working toward the same goals. Hear See Hope was a founding member of the Coalition, whose mission is to raise awareness and accelerate research into the most common genetic cause of deafblindness. It’s so rewarding to work together with other committed and compassionate people, including families, physicians, researchers, organizations, and funders to find a cure.
Usher Syndrome Awareness Day
Gov. Jay Inslee declared Sept. 16, 2017 Usher Syndrome Awareness Day in Washington. We wrote to the governor and asked him to join other states in making the proclamation to draw attention to Usher and the many families it affects in our state and country. Conner was so proud to hold the proclamation. This is just one step in our advocacy efforts, but it’s an important one.
Many people don’t know about Usher – and that it’s the leading cause of deafblindness in the nation. We hope to make this an annual proclamation. Thanks to Gov. Inslee for his support of our cause.
Raising Awareness about Usher with our lawmakers
One of the ways Hear See Hope works to raise awareness of Usher syndrome is through our lawmakers. Todd and I met with Sen. Patty Murray in 2015 to educate her about the disease and the many families it affects. We appreciate her meeting with us and asking us about Usher and the work we’ve done through Hear See Hope to support not only Conner and Dalton, but other families who are living with Usher.