Usher Syndrome

A few weeks ago I was featured in Parents Magazine, sharing my tips for a more inclusive Halloween. I shared a lot of tips from how to plan costumes, to how to coordinate Trick-or-Treating routes. I have more to say on this topic so in this blog, I share our family’s experience with Halloween, how I realized I needed to change my thinking, and how I created new, better traditions.  When I first became a mom, I remember being so excited to pick out Conner’s first costume. He l

I’ve thought about writing this blog for a long time but it’s a vulnerable and controversial topic. I mentioned my journey with IVF/PGD in my memoir, “Silence and Light” but even then I wasn’t ready to share my thoughts on this sensitive topic. But, today as my younger son, Dalton, started college in high school, I was struck with how proud I am of him and how grateful I am that he is my son. He is amazing is so many ways and I can't imagine life without him in it. He is such

Every third Saturday of September marks Usher Syndrome Awareness Day, and this year, it falls on September 21, 2024. This day always causes me to reflect on my journey with our two sons who have been diagnosed with Usher syndrome. This year I’ll be spending the day with my friends and colleagues at the Hands & Voices Leadership Conference in Spokane, WA. What a perfect way to spend the day!  Our Story Twenty years ago, our oldest son, Conner, was diagnosed with Usher syndrome

Last week was the 15th Usher Syndrome Connections Conference in Rochester, NY. I always look forward to this time. This year was full of a lot of extra emotions after all the changes in my life. In this blog, I share my emotions and experiences surrounding the conference, and my appreciation for a community that means so much to our family.  This year’s USH Connections conference had over 500 attendees - the largest conference we’ve ever held by far. But the statistic that su

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. What I have noticed, sadly, is a lack of detail on special education in reopening plans. I was hoping that I saw just a lack of publicly available detail on special education

September 19 is Usher Syndrome Awareness Day. It’s always a day that causes me to reflect on all that I am thankful for. Like many of you, 2020 has been nothing like I imagined. It was hard in ways that I can’t even describe. In March, our oldest two kids came home for college spring break only to get stuck at home for six months. Our two middle schoolers were thrust quickly into virtual school. Todd and I tried to work - I’m not sure how productive we were - and I’m surprise

I was asked to share my experiences and perspectives about remote learning for children who are deafblind, like my son Dalton. https://www.educatingalllearners.org/projects-leading-by-example/-Providing-Services-to-Students-who-are-Deafblind%3A-Coming-together-as-a-field Remote Learning for Students who are Deafblind: Sharing our Experience

Today I started the day in tears in my car, a reminder of the long emotional few weeks our family has been through. A few months ago, our two middle schoolers, Hunter and Dalton, started to struggle in school. The reasons were different but the family impact was the same. The reality is that we needed to move both of them to a new school that could better serve their needs, preferably a place where we could keep both boys together. Finding a “right fit” school for our son, Hu

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 lim

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 fo

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 ho

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 Deaf

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 aw

https://news.thinkgenetic.com/2019/09/21/unraveling-usher-syndrome-through-community/?fbclid=IwAR0UR7g-45Bx_nnYtquLAl3tecqWjzuIWgE4ULyaOiMOVCDMxwNOYlDHjF0

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

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.

Usher syndrome has taught me so much. We have good days and days that challenge us. This week has been filled with challenges. We are so excited to have Conner come home for Christmas break during his first year at college. It is a blessing to have all our kids in our house for the holidays. We’ve missed him so much. Once he returned last week, however, I just had a mom’s intuition that something was wrong. We had been down to visit him a few times, and all seemed ok, but som

A link to my talking about the research study I did on self-determination.