These experiences lead to lasting friendships, foster a sense of belonging, and reduce feelings of isolation. In my January 2021 article for this magazine, I wrote about the importance of mentors, role models, and peers as necessary supports to help a child with a disability be successful. They need mentors to help guide them, role models who can inspire them, and peers who can understand them. These connections can be forged in diverse settings such as: specialized summer camps, school vacation programs, online communities, local support groups, and conferences offered by different disability organizations.
I was first exposed to the importance of having a place to make these connections 40 years ago. My first summer job and an experience that solidified my career choice as a Special Education teacher was in 1984 when I worked as a counsellor at a summer camp in New Brunswick, Canada for children and adults with various disabilities. For over seven decades, Camp Rotary has hosted hundreds of campers across the province, offering a supportive and judgement-free environment where the campers can explore their potential, and create lasting memories.
It was a profound experience and the first time I became aware that, when children are surrounded by others who face similar challenges, they feel more comfortable trying new things and pushing their boundaries. The surge in confidence and self-esteem can be transformative and empowering, and demonstrated the importance of being involved in a community that shares the same lived experience. Bringing this experience and understanding to the classroom helped me as a teacher, but it became deeply personal when my own children were diagnosed with Usher syndrome. I had to think about finding opportunities where they could make these connections.
My sons, Ethan and Gavin, were born deaf, are progressively losing their vision, and have severe balance issues due to vestibular dysfunction. Early on, before we learned of the Usher Syndrome diagnosis, we sought out events to connect with others going through the anxiety and intenseness of auditory verbal therapy to teach our children to listen and speak. We only knew about their hearing loss at that time, and had chosen cochlear implants.
Since Usher syndrome is a rare genetic disorder affecting multiple senses, it creates a unique set of needs for children. Finding opportunities that catered to these specific needs was a challenge.
Attending family education and recreational events hosted by the Cochlear Implant Program at the Hospital for Sick Children in Toronto became our first bridge to making connections. Here, surrounded by other families who also have children with hearing loss, we began building a network of support. These special events that happened three or four times a year were milestone moments, as we saw the excitement Ethan and Gavin felt seeing other children with cochlear implants. One of the family day events took place at a summer camp, and it was a joy watching the children surrounded by nature, enjoying a variety of activities where the children could participate while connecting to peers in a supportive environment.
We wanted to further these opportunities, so we looked for organizations in our area that provided events for learning and building a supportive community. We participated in conferences organized by VOICE, an organization dedicated to families with children who are deaf or hard of hearing. Through their programs and services, we gained valuable information and support that enriched our knowledge and connected us with experts in the field of hearing loss. Their annual VOICE Family Camp is a weekend retreat that provides a space for families to connect on a deeper level, share experiences, and build lasting friendships. The camp offers a variety of activities including educational workshops, outdoor adventures and social events, all designed to foster communication and create a strong sense of community.
During this time, I also became a Volunteer Advocate for Cochlear Canada and eventually ended up working part-time as the Volunteer Advocate Coordinator. It was a great opportunity to make personal and professional connections. I even got to attend Cochlear University at the North American headquarters in Denver, Colorado. In the process of trying to help others, I gained valuable knowledge about hearing loss, for my family. Collaborating with other advocates, professionals, and families created an amazing support system that helped me feel connected. As much as I was trying to build connections for my children, my husband and I needed it as well.
While choosing cochlear implants and listening and spoken language for Ethan and Gavin, we also wanted them to explore the Deaf Community. It wasn’t about “fixing” them. Deafness is an integral part of their identity. As hearing parents, we simply wanted to offer them the opportunity to connect with the hearing world. Recognizing the rich diversity within the Deaf Community, we sought experiences that went beyond cochlear implants. Silent Voice Canada offered an ASL summer camp for deaf and hard of hearing children that, alongside their Family Communication Program, provided an introduction to the Deaf community. It was an amazing experience that I brought with me years later, when I had the opportunity to start New Jersey’s first Deaf Mentor Program in 2018 through the SPAN Parent Advocacy Network.
In 2009, when the boys were 5 and 7 years old, we were faced with a new reality that would challenge us and redefine our future. With the diagnosis of Usher syndrome, our previously supportive community dynamic seemed to alter. We found ourselves feeling isolated again, facing a new reality that felt outside the scope of our established connections. The grief we had tucked away after the initial hearing loss diagnosis resurfaced, this time deeper and more profound. It was as if the rug had been pulled out from under us. We were back to square one, lacking the knowledge and experience to navigate this new situation. In some ways we were starting over and had to find a new community of support that understood the challenges of Usher syndrome.
The first organization we connected with was the Fighting Blindness Canada (FBC). We actively participated in the annual learning series and conferences they offered, that brought families living with vision loss together with researchers. Raising awareness for this rare condition and supporting research were initial priorities. We started an annual golf tournament called Twilight for Sight and Sound that raised money for Fighting Blindness Canada and the Hospital for Sick Children Cochlear Implant Program. Finding treatments or a cure remains a constant aspiration, but we also felt that we were missing a supportive community specifically for families like ours. We pictured a network of mentors, peers, and role models who could share their experiences with our children, and provide invaluable guidance and inspiration, equipping them with the tools to navigate their own paths with strength and resilience.
During this time, Ethan and Gavin were building upon the unique connection they shared as brothers, both having Usher syndrome. Speaking and presenting together at schools, university classes, and teacher training workshops wasn’t just about advocacy. Their presentations became a powerful tool, not just to educate, but also to demonstrate the strength found in shared experiences. My husband and I also felt that talking to others would help them understand their differences, while at the same time highlighting for themselves and others, what made them special. Since it was what we were given in life, we were grateful they had each other, but still felt they needed others who understood the challenges of living with Usher syndrome.
Then, my husband discovered the Usher Syndrome Coalition, which was founded by the Dunning family in Boston in 2008 to build a network of support. He joined the monthly calls that began in 2010, giving us a connection to the community we were searching for. However, we still lacked the support of having other families around us. That changed in 2014 when an opportunity presented itself for my husband in his company. But it meant moving our family to New Jersey. Finding connections with other families facing Usher syndrome was a top priority. Before we made the decision to move, the Usher Syndrome Coalition connected us to the Center on Deafblindness in New Jersey, and initial conversations gave us the assurance we needed to make this change for our family. The Usher Syndrome Coalition is now a global resource for families and researchers. The monthly support calls eventually became the USH Connections conference.
Through the Center on Deafblindness, I connected with Carly Fredericks, a passionate advocate for her daughter Ava, who also has Usher syndrome. This connection sparked a friendship between our families, and together, we embarked on a mission to provide the support network we craved for so many others. Carly had founded Ava’s Voice, an organization with the mission of empowering youth with Usher syndrome, and to educate families and school communities. Ethan, Gavin, and Ava fulfill that mission through speaking and presenting about Usher syndrome at workshops, schools/universities, teacher trainings, parent to parent meetings, fundraisers, retreats, conferences, and family activities. My sons certainly understand each other deeply, but their connection with Ava added another dimension. Having a peer provided a unique sense of freedom and acceptance. Sharing similar challenges fosters a bond that is without judgment, and allows the three of them to embrace life with confidence and a shared outlook.
Through attending the USH Connections Conference, I was introduced to the Usher Syndrome Society. It was founded by Nancy Corderman, the mother of two children diagnosed with Usher syndrome, which aims to raise awareness and accelerate research. Through initiatives like photo exhibits, video journalism, live discussions, and experiential fundraising events, the Society educates the public about the realities of living with Usher syndrome, fosters a supportive community, and raises funds for research towards effective treatments. My sons have been featured in their Sense Stories, and their portraits are proudly displayed in the Society’s Shine a Light on Usher Syndrome exhibits. The Society also creates docuseries and films to further raise awareness and inspire hope. Our family enthusiastically supports their efforts any way we can.
The connections we’ve forged with other families affected by Usher syndrome has been a lifeline. Sharing this journey with those who understand the unique challenges we face has been invaluable. Over the past two decades, we’ve navigated uncharted territory, learning countless lessons along the way. Writing these articles allows me to share our story, hoping to make the path a little easier for other families who are, like we once were, faced with the devastation of the diagnosis, and wondering what the future will look like.
We have actively sought opportunities for Ethan and Gavin to connect with their peers. While programs like the Rochester Institute of Technology’s “Explore Your Future” for deaf and hard-of-hearing students provided valuable experiences, a critical gap remained: the lack of experiences specifically tailored for young people with Usher syndrome. This is where the connection with Carly and Ava’s Voice came in. Working together over the last several years to empower youth with Usher syndrome, we recognized the distinct need to create opportunities for those connections. Witnessing the positive impact of the connection between Ethan, Gavin, and Ava fueled the desire to create similar opportunities for others.
This shared vision materialized in the form of the USHthis Summer Youth Camp. Held for the first time in the United States in 2019 and again in 2023, USHthis provided a space for connection and shared experiences, specifically designed for young people with Usher syndrome. At USHthis, campers forge lasting bonds with mentors, role models, and peers who truly understand their challenges. Since its inception, the camp has expanded beyond its US roots. Thanks to the incredible connections made with Chloe Joyner from Usher Kids UK, USHthis hosted successful camps in the UK in 2022 and 2023. The future is bright, with camps planned in both the US and the UK for 2024. Further connections with Emily Shepard and Holly Feller, the founders of Usher Kids Australia, promise exciting possibilities for bringing USHthis Down Under in 2025.
The Usher Syndrome Coalition is a central hub for the global Usher syndrome community. Their mission is to connect individuals living with Usher syndrome to essential resources, ongoing research efforts, and most importantly, each other. The Coalition achieves this by working alongside a network of dedicated organizations called USH Partners. This collaboration allows the Coalition to continuously grow connections and support within the Usher community. USH partner Ava’s Voice provides an opportunity to make those connections at the USH Connections Conference for youth with Usher syndrome from birth to 17 years old. USHangouts provides a space for them to build friendships, share experiences, and gain strength from their shared journey. USH partner the Usher Syndrome Society offers conference participants with Usher syndrome the opportunity to have their portraits taken and share their personal stories for the “Shine a Light on Usher Syndrome” exhibit to give a face and voice to this rare disease.
For individuals with disabilities and their families, the world can feel isolating. But as I’ve seen throughout my journey with my sons, Ethan and Gavin, finding a supportive community can be transformative. Camps like USHthis, conferences like USH Connections hosted by the Usher Syndrome Coalition, and organizations like Ava’s Voice and the Usher Syndrome Society demonstrate the power of connection. The Usher Syndrome Society further amplifies the power of connection by sharing stories through their photo exhibits, films, and documentaries. These narratives not only educate the public, but also foster empathy and inspire hope. Sharing experiences with mentors, role models, and peers who understand, fosters confidence, reduces isolation, and empowers individuals to thrive. These connections are lifelines, offering not only support but also inspiration and hope for a brighter future. By fostering connections, we can empower individuals, regardless of ability, to feel included and reach their full potential.
ABOUT THE AUTHOR:
Pamela Aasen is a graduate of UNB in Canada with Undergraduate degrees in Early Childhood and Special Education and a Master’s degree in Special Education. Pam has 25 years of teaching experience working with diverse communities in the U.S., Canada and the Dominican Republic. She is the mom of two sons with Usher syndrome. For the last 10 years she has worked in a professional capacity in the Deaf, Hard of Hearing, and Deafblind community. In 2020 Pamela received the Early Hearing Detection and Intervention (EHDI) National Family Leadership Award.
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