Deafblindness

If someone had told me 30 years ago that I’d be sitting in a room with our Senator, advocating for education and civil rights, I would have laughed. Back then, I was quiet, reserved, careful with my words. I avoided conflict, didn’t want to ruffle feathers, and kept my opinions to myself. I was a numbers person—someone who saw the world in black and white, preferring a math problem with a clear, set answer. But life had other plans for me. Twenty-five years ago, my world chan

For weeks, I haven’t been able to sleep. Since January, the fear of what’s happening to public education—and especially special education—has weighed heavily on me. And I know I’m not alone. Parents of children with disabilities across the country are feeling the same deep anxiety about the future of our kids' education. This week, I had the opportunity to join Senator Patty Murray in speaking out against the administration’s reckless efforts to dismantle the U.S. Department

I have never been someone who speaks about anything remotely political. It makes me uncomfortable, and I don’t like placing blame. But I can’t stay silent anymore. I know others may not agree with my views, but I have to speak up—not just for my kids, but for all the families I help. As a mother of three children with disabilities and as a special education researcher, I find myself struggling to sleep at night. The weight of my worries is heavy. So much has changed in just a

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

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

In this blog I describe some of the benefits of family involvement in special education - one of my favorite topics and a focus of my resear

Last night I was finally ready - ready to get back on my horse - literally and figuratively. I moved out of my ranch back in December to my own apartment and I haven’t been brave enough to ride my horse ever since. In this blog I will share my experience and journey with having horses in my life, what I learned about myself through the process, the fears I had, and how I overcame them.  Three years ago Todd and I bought a ranch in Washington state, just outside of Seattle. I

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

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

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