their PT at her office, for specific exercises and assessment of the program, and met her at a track so they could start running. At first, they couldn't run in a straight line, but they persisted and eventually entered races, starting with Kid's 2K's and moving on to 5K races. As they got older, they joined the gym and worked with personal trainers. Sports were a huge part of their lives. They tried and loved them all… even if they weren't very good at some of them. They never gave up and worked hard on getting better, by themselves, with their coaches, and with their personal trainers. Gymnastics and Tae Kwan Do were activities they enjoyed, they played golf, tennis, baseball, basketball, and volleyball at different times, with baseball lasting from elementary until high school. They have skied since they were toddlers. In high school they joined the ski club, swam varsity, and joined the cross-country team. Now, that they are in college, they enjoy playing club sports. Ethan and Gavin have always enjoyed their involvement in mainstream sports with their peers, but there are and have been many challenges with that. It was joining a paralympic sports club that really gave them the opportunity to continue to participate in sports on an equal footing.

Swimming was the game changer for Ethan and Gavin because they had always loved the water. As time went on, swimming was the sport that really transformed their bodies. They became stronger, and as they got stronger, they moved their bodies with confidence. They even learned to ride a bike… they had been trying to master riding a bicycle for years! The key for success in therapy for their vestibular dysfunction was not constant therapy appointments, but finding the activities they enjoyed that incorporated the skills they needed to develop. Swimming might not be that activity for everyone, maybe it's horseback riding, martial arts or another activity that requires core strength. My husband and I never forced activities on them, we gave them the opportunity to explore and find out what they wanted to pursue. One thing that the pandemic gave them was time to practice biking at the golf club next door. And more importantly for me, it gave us our very first family bike ride when they were 18 and 16 years old.

HEALTHY CHOICES

Addressing social emotional and even nutritional needs was just as significant as attending the therapy sessions for Ethan and Gavin's vision, hearing, and balance. Our strategy of turning appointments into an adventure and a visit, as I have addressed in a previous article on the parent professional partnership (see resources), was important, because we did not want them to feel like their lives were just about appointments. We were thinking about their mental health from an early age. Addressing that need also included counselling for us as their parents, and 'check ins' for them to talk about their feelings with a professional. As they got older, mental health checks continued and were scheduled more regularly, as needed, particularly recently in dealing with the aftereffects of the pandemic. As their parents, we can only hope they will choose to continue to take care of their mental health as they move into adulthood. We have helped them move toward that by finding mental health professionals who have experience working with individuals with hearing and/or vision loss. They even have a friend/mentor, who also has Usher syndrome, Rebecca Alexander, who is an author, extreme athlete, and a psychotherapist who they can talk to about their diagnosis.

I believe having role models, mentors, and peers is another aspect that contributes to positive mental health (see resources for previous article). Ethan and Gavin have attended many events and activities over the years that gave them the opportunity to be around other children and adults like them. Attending the USHthis Camp, an overnight camp for youth with Usher syndrome, first as campers and now as counsellors/mentors, has addressed their need to connect with their peers in a way nothing else can compare. It gives them the opportunity, for a short time, not to have to explain themselves. Presently, they are also both attending the Rochester Institute of Technology (RIT) which houses the National Technical Institute for the Deaf. RIT has more than 1000 Deaf and Hard of Hearing students on campus and provides them with high quality communication access and support services.

WATER WORLD: Gavin (left) and Ethan at the Cincinnati Para Swimming Meet; "Swimming was the game changer for the boys."