Usher Syndrome Awareness Day 2020
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 surprised we all didn’t kill each other. For Dalton, having a vision loss and being deaf was a real challenge this spring when it came to virtual school. We worked hard to make things accessible and ensure he had the support he needed. Fall brought additional challenges. This school year’s version of virtual school was different than the spring, even more challenging for someone with Usher syndrome.
Despite it all, I choose to focus on the bright spots. Most importantly, we were given the opportunity for us all to be together again as a family. This was a precious gift - it was a time for us to play games, laugh, and enjoy how life’s pace was just a bit slower. In regard to education, I am also thankful. Yes, it was hard and I thought I would lose my mind several times, but Dalton really did well with virtual school. He really hit his stride and I learned a lot about what he was experiencing in the classroom - insight that I didn’t have before. This new knowledge has helped me to better advocate for his needs. Going into this academic year, I was able to work with his educational team, and put a plan in place that works for him. So far the school year is going well and we are enjoying our Dalton/mom school time.
I also feel fortunate that we were able to move Conner back to Rochester Institute of Technology - where he is a senior majoring in political science. He lives independently, is extremely happy, and we are so very proud.
This year would have been different without our #USHFamily. On the hard days, I had people in our Usher community I could turn to for support. This July, the Usher Syndrome Coalition held their first virtual conference. As always, it was great to hear all the research updates and learn about so much more. I have more hope than ever for a cure.
I also have a lot to be thankful for personally. I took on a new role this year as Chair of the Board of the Usher Syndrome Coalition. The Coalition has been near and dear to my heart since it started.
In 2019 I received my PhD in special education and I feel fortunate that I am able to follow my dreams, conducting educational research on topics that are important to families who have children who are deafblind. I am looking forward to my new endeavor to expand my research (more to come on that soon).
So, on this day, I am happy and I am thankful: for my family, friends, #USHFamily. 2020 is not what any of us had planned but it’s not going to stand in the way of me celebrating the accomplishments of Conner and Dalton on Usher Syndrome Awareness Day. It wasn’t easy but I am glad that I was able to stay focused on the good as 2020 brought lots of uncertainty and educational challenge.
Happy Usher Syndrome Awareness Day 2020, everyone. I hope the next year brings you all lots of joy. If I can help in any way, please reach out.