Supporting My Sons’ Advocacy Journeys

By Lanya McKittrick, Washington H&V

Early on I realized that because Usher syndrome was so rare, no one understood how to help our boys. Professionals wanted to help our family but didn’t know how. We were also the only family in the school district with children who had a dual sensory loss. This felt isolating for us as a family to not have anyone who could relate. In IEP meetings, I felt misunderstood. I wanted and needed to create a community. That’s what propelled me on my journey to learn how to advocate and build awareness. I started by trying to find other families and becoming involved in the Deafblind community.

As my children got older and I had more advocacy experience, I realized the power of having the boys advocate for themselves. They could more powerfully share their own stories. I knew in my heart that they would be able to do it better than me, and, quite honestly, now it was their story to tell. When Conner (now 24) was in high school and Dalton (now 15) was in elementary school, I started involving them in the school meetings and day-to-day advocacy. 

This was a huge shift in my personal growth. I had spent years advocating for them, a solitary voice that often didn’t seem to impact change. Once I shifted my thinking and focused on supporting their fledgling advocacy journeys, I could see the results. After all these years, we experienced more positive IEP meetings. What I was most proud of was how this new strategy of letting go helped them to find self-determination. Now, they want to help others. For me personally, this was much more satisfying. Instead of being frustrated, I was able to help them shine.

I never imagined how far this might go when we started this difficult and long journey. 

Back in April, Dalton and I traveled to Washington D.C. to advocate and raise awareness for Usher syndrome and deafblindness. Directly through his efforts and passion in sharing his story, the Usher Syndrome Coalition was successful in getting the requested appropriation language included in a bill. Seeing the impact that he could make, Dalton was excited about sharing his story and advocating for himself and others. He can’t wait to go back again. Our next trip is planned for March 2024.

This past summer, Dalton wanted to do more locally. He reached out to Governor Inslee’s office to request that the Governor issue a Proclamation recognizing Saturday, September 23, 2023, as Usher Syndrome Awareness Day in Washington state. This request was specifically meaningful to him this year because in August, we had 65 individuals affected by Usher Syndrome come to our ranch for a social event. When we bought our ranch three years ago, I had a dream to create a stakeholder and family event at our place–to build community and connection. Standing among our people, it was a dream fulfilled to see the positive impact that this gathering had on everyone. Being around the farm animals and networking with each other in a casual setting was the perfect backdrop to build our community. Dalton was so pleased when he received the Proclamation by mail just days before that event.

Dalton recalls, “I remember when I was nine and my mom was trying hard to get a Teacher of the Deaf added to my IEP team. My mom was getting frustrated because she couldn’t describe what I was experiencing at school. We had a not-so-great IEP meeting to discuss this. That night she sat me down and we talked about how I needed to tell my own story to the team. We reconvened the meeting and it was scary, but I was able to describe what I needed for better access and inclusion. As a result, I get more out of my education and can participate alongside other students. I learned to share facts and paint a picture of my experiences for others to get a better perspective. Standing up in support of something is advocacy. Our family is very involved in the Usher community. I wanted to find a way to help others and I felt that telling my story through advocacy was how to do that. That’s what ultimately led me to D.C. and to write to our governor. I can’t wait to return to D.C. in March 2024 for more advocacy.”

It’s been so incredible to see our kids find their voices and watch them become such strong advocates. When we first received the diagnosis of Ushers, we worried they would never be able to do the things they have done this year. But, with the right support, the sky’s the limit.

Editor’s note: Dr. Lanya McKittrick is the mom to four boys, two of whom are deafblind due to Usher Syndrome. She serves as a board member for the Washington H&V Chapter. She also founded a nonprofit called Lane of Inquiry supporting families and focusing on deafblind education-related research.   ~

Resources:

When is Usher Syndrome Awareness Day? Why, it is on the third Thursday of September each year:  https://www.usher-syndrome.org/events/ush-awareness-day

The author’s blog about Usher Syndrome Awareness Day, with more about our event and  family advocacy efforts: https://www.laneofinquiry.org/blog/celebrating-the-good-in-our-lives-ush-awareness-day-2023

H&V Communicator – Spring 2024