Research and Insight from Lane

Hi, I’m Lane McKittrick, co-founder with my husband, Todd, of Hear See Hope. In addition to being the mom to four boys, including Conner and Dalton who have Usher syndrome, I am pursuing my Ph.D. in Special Education at the University of Northern Colorado. My research interests are deafblindness and family-professional partnerships. I hope to use this blog to share updates on my family and my research. My goal is to provide information and support for families living with Usher syndrome. Research into a cure is vitally important, but I know from experience, family support in dealing with day-to-day issues is critical as well. Thanks for reading.

Conner shares his journey to acceptance

Being Conner’s mom is such a joy for me. He has overcome huge obstacles and works so hard to achieve his goals. I can’t believe it’s almost time for him to head to college. He will start at the Honors College at Oregon State University in the fall. We are beyond proud, but we know it has not been easy. In an essay for a college-level English class, Conner wrote eloquently and candidly about his journey toward learning to accept and live with Usher and not let it define or limit him. I share some of it here with this permission.

“I can’t say when it was exactly when I stopped looking at my disability as a limitation. Now I choose to look at it as a way to gain a new perspective on the world and the good that I could do. My disability is the reason I want to become a geneticist, so I can help people who have genetic disorders like me, and possibly help alleviate the symptoms. I also want to be a geneticist to show my younger brother, who has the same disabilities that I do, that he can achieve his dreams if he wants to, and that his disability does not control him. I want him to be and do whatever it is that he desires. I want him to be able to run carefree without worry like I do now. I want him to be able to play sports with other kids, and I want him to live his life without worry about what he can’t do because he can’t see or hear. I want him to be able to choose his own path. I just hope he accepts it earlier than I did.”

You can read his powerful essay here. Thank you, Conner, for everything you do for our family and the example you set for all your brothers, especially Dalton.

Guest podcast with Portland State

As part of my efforts to help more families dealing with Usher syndrome, I was happy to be interviewed by Professor Amy Parker of Portland State University for her Orientation and Mobility On the Go Podcast. In this podcast, I share insights with Amy about the role of the Orientation and Mobility Specialist in supporting the development of self-determination skills from my perspective as a mother and from the perspective of a graduate researcher. I include practical advice for O&M students and practitioners for working with individuals, families and teams. You can listen to the podcast or read a transcript. Thanks, Professor Parker, for the opportunity.

IEP 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 about working with schools to support my sons Conner and Dalton. One of the best things we did was allow our kids to have input into their their IEPs, so I talk about the benefits of student involvement. My hope is to provide support, guidance, and advocacy for other families.

Listen on Anchor. Or you can read the transcript.

Presenting research at the DbI Network of Americas conference

I had the privilege of attending and presenting 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 was part of a team that presented preliminary data from research on Parent-School Collaboration and Conflict: Experiences of Parents with Deafblindness During the IEP Process. This research involved interviewing 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, Dr. Sandy Bowen, and Dr. Tracy Mueller (who could not attend the conference.) 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.

I also had the opportunity to present my research on Teaching Self-Determination Skills to Elementary Students with Vision Loss at the same conference. This topic is important to me because of my experiences with Conner and Dalton. Conner attended his first IEP meeting at age 16, and until then, we had not thought about transition. I really wanted to understand what was possible for my younger son. Because of what I learned about self-determination, I was able to talk to Dalton’s O&M instructor, who is know working on self-determination skills with him. Last month Dalton attended his first IEP meeting, and at the age of 9, he was able to communicate his needs directly to his IEP team. This has resulted in a much more positive experience for him at school.

 

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.

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.

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