I have shared many aspects of this journey in previous articles for this magazine, from the diagnosis and therapy needs to the advocacy for accommodations and navigating extra-curricular activities for both school and post-secondary education. While it may be a strange thing to say, having both of my children share this diagnosis has become a true blessing, offering our family a unique perspective and a shared foundation of understanding.
A Source of Strength
While it may seem counterintuitive to view a shared disability as a blessing, for us it is a choice to look at it that way because this is the life we have been given. We did not wish this for either of our children, but this is the reality we live in. As a special education teacher, I had seen firsthand the challenges parents encounter when balancing the needs of a child with a disability alongside those of a typically developing child. This balancing act can be incredibly complex and difficult, often leading to resentment from siblings who feel their needs are overlooked. With both of my children having Usher syndrome, I do not have to worry about the resentment that can develop between siblings.
This does not mean that grief has not been a constant part of our lives. When Ethan was born deaf, the grief was real and palpable. However, when Gavin was later diagnosed as deaf, the grief and fear were not as overwhelming, because we had been down this road with Ethan. We were still uncertain about what the future would look like, but my husband and I felt we could provide a good start. Although we felt we understood this journey and our children’s needs, we were devastated when they were both diagnosed with Usher syndrome. This shared diagnosis, while heartbreaking, also provided a unique perspective, and perhaps a coping mechanism. We made a conscious decision to see it as positive, recognizing that they would not be alone in this journey, and they would have each other to lean on, support, and navigate the challenges together. Ultimately, this shared bond became the foundation of their resilience and a source of strength for our entire family.
A Family Affair
We quickly realized the key to navigating the overwhelming number of medical and therapy appointments was to frame them positively and transform them into family adventures since we were all together. We were equipped with books, games, and snacks to make the journey enjoyable. We would arrive early to get a hot chocolate or another special treat, and plan a special outing afterward. Sometimes, it was just a short walk to our favorite hot dog truck, while other times it was a museum or an aquarium trip. The idea was to transform a day of medical care into a memorable family outing, which allowed us to create positive associations with a challenging part of our lives, and ensure that our children never felt defined by their appointments.
These shared experiences, from enduring long hours in waiting rooms to embarking on shared adventures, forged strong bonds within our family. This was perfectly articulated when Professor Victoria Puig asked them, while writing her book Conversations with Families of Children with Disabilities: Insights for Teacher Understanding (2021), if they would change having Usher syndrome. Ethan said he wouldn’t because he wouldn’t be who he is today. Gavin added that he wouldn’t because our family wouldn’t be as close. This profound mutual acceptance of their lives and our unique family unit has established our most effective coping mechanism: a mindset built on acceptance and purpose that deepens our gratitude for the incredible people and supportive community we have been privileged to find through Usher syndrome.
A Double-Edged Sword
As much as we try to see the positive in having both of our children living with the same multi-sensory condition, the other side of it is that it increases our challenges. The sheer number of appointments and the logistics of a full calendar require meticulous scheduling, time off and an exhausting amount of energy. Medical fatigue is real, and the strain of trying to find the right professionals who truly understand Usher syndrome leaves little time for my husband and I to look after our own needs. The shared diagnosis may have streamlined some aspects of our lives, but the workload and the emotional toll cannot be overlooked. A friend of mine initiated an organization in Canada that tackles this problem. It is called Everyday Heroes Kids. It connects families to comprehensive profiles of pediatric professionals and organizations: in health, mental health, and education, to help families find the right professional at the right time. It is truly a life-changing resource that saves time, money, and stress. It is one I’ve been privileged to work with to help them grow.
This constant focus on Usher syndrome can make it feel like our entire lives revolve around Usher syndrome. Our conversations with other families, our travel destinations for conferences/camps, and even the books and articles we read, are all filtered through this lens. We have all written articles about our journey, and we present as a family at various venues for different audiences about “Advocating as a Family.” While being so deeply embedded in the Usher community offers invaluable support and a sense of belonging, it can sometimes feel overwhelming, as if our family’s identity is solely tied to our children’s diagnosis. It’s a constant balancing act of finding the joy and strength in our shared journey, while also carving out space for other passions and interests that remind us that we are more than just a family living with Usher syndrome.
A Shared Purpose
Our lives have spanned three different countries: first the Dominican Republic, then to Canada for the access to medical care, and then to the United States for adding new experiences and opportunities. Each move meant leaving family and friends, facing the struggle of making new connections, and having to start our advocacy efforts all over again with new organizations, professionals and educators. On the flip side, we have had the opportunity to be involved with multiple organizations. Though these changes were hard, facing these challenges together helped the boys become strong communicators, confident advocates, willing risk-takers, and young men with a solid sense of self-worth.
In Canada we had the opportunity to connect with Fighting Blindness Canada, where we organized our first major fundraiser, a golf tournament that ran for 3 years called Twilight for Sight and Sound. VOICE Canada provided the connections we were searching for. When we moved to the United States, we joined forces with Ava’s Voice and are proud to have been part of starting the first camp for youth with Usher Syndrome, which led to involvement in international organizations and the opportunity for travel to camps in the UK and Australia. Ethan and I recently returned to Toronto to see the CN Tower lit up in blue and gold for 2025 Usher Syndrome Awareness Day. All of this, combined with attending the Usher Syndrome Coalition Conferences, being a part of the Usher Syndrome Society’s unique storytelling and their Times Square Takeover or the See Us, Hear Us Immersive event, makes it seem like our lives revolve around the diagnosis, but it has gifted us with a worldwide network of support.
A Life Beyond the Diagnosis
When Ethan and Gavin were diagnosed at 7 and 5 years old, we wondered what their future would look like. We watched them persevere and find success through their school years, and now fifteen years later they are both university students, living independently at the Rochester Institute of Technology (RIT). They are attending a university that houses the National Technical Institute for the Deaf (NTID) and serves over 1100 deaf and hard of hearing students. The university offers a full range of on-campus services, all designed to ensure their academic success, including tutoring at no additional cost. We had no idea such a place existed. The NTID Foundation board’s main purpose is to help advance career development and personal growth opportunities for deaf and hard-of-hearing students. Recently, I was asked to join the board, and be a part of supporting NTID as a global leader in post-secondary education for deaf and hard-of-hearing students, and be an advocate for the deafblind population.
Having two children with Usher syndrome has taught our family to focus less on what might have been and more on finding strength and joy in the moment, even as they face an uncertain future. Ultimately, living with Usher syndrome is not just a chapter in our lives, it has become the framework for how we live. It has pushed us to become fierce advocates, compassionate listeners, and a family that finds solace and strength in each other. By allowing ourselves to grieve, to seek community, and to embrace the challenges as adventures, we have built a life defined not by this genetic condition, but by the unwavering spirit and love of our family. In that, we have found a blessing far greater than we could have ever imagined.
Further Context : Usher Syndrome Resources
Conversations with Families of Children with Disabilities: Insights for Teacher Understanding
By Victoria I. Puig and Susan L. Recchia
www.routledge.com/Conversations-with-Families-of-Children-with-Disabilities-Insights-for-Teacher-Understanding/Puig-Recchia/p/book/9781138310940
Rochester Institute of Technology National Technical Institute for the Deaf
https://www.rit.edu/ntid
Everyday Heroes Kids
https://www.ehkidshealth.com
Usher Syndrome Coalition
www.usher-syndrome.org
Usher Syndrome Society
www.ushersyndromesociety.org
Ava’s Voice
https://avasvoice.org
Cochlear Americas
www.cochlear.com
VOICE for Children who are Deaf or Hard of Hearing
www.voicefordeafkids.com
https://avasvoice.org
Fighting Blindness Canada
www.fightingblindness.ca
SPAN Parent Advocacy Network
spanadvocacy.org
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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