Sharing their story has also positively impacted their social emotional well-being. When Ethan and Gavin showed an early interest in giving speeches, I built on that through opportunities to speak at fundraisers, teacher trainings, and university classes. Having the confidence to speak in front of groups to raise awareness about their challenges helps them face life unapologetically and builds their self-esteem. I felt strongly they needed to understand and embrace what was/is different about them and go out into the world believing they are fine just the way they are, without shame or the reluctance to speak up. This strategy has more than paid off. As current Advocacy Ambassadors for Ava's Voice (with Ava) they continue to make the choice to speak to families and share their story. As a result of everything they have done, they were asked to share their advocacy journey with the Amplify Advocacy Series by the SPAN Parent Advocacy Network, they have shared what life is like for them in the Sense Stories series by the Usher Syndrome Society, and along with both being Cochlear Scholarship recipients, they were named National Inspirers for Cochlear's Achieve Anything Program (see resources).

Of course, none of this means there are not bumps along the way. How could there not be… they both went through middle and high school experiencing bullying. They lived through a pandemic, lost the ability to drive, and innumerable other things that affect mental health. My husband and I have tried to emphasize to Ethan and Gavin that there is no right or wrong path, just their path. All we can do is give them the tools along the way through the different types of therapy, programs, and activities. This has also included dealing with sensory integration issues through sensory diets, massages, and by learning coping strategies. Though there is no cure for their eye condition, we have encouraged making healthy food choices through nutritionist visits and nutrition education about 'eye foods.' We have embraced alternative medicine through a naturopath and recent visits to an acupuncturist. We also showed them, by example, that an active life through a combination of

sports, outdoor activities, and travel are good habits to develop throughout life for both physical and mental health.

A BEAUTIFUL MOSAIC

Like most people, we are a Facebook family. We share the successes of our children because we want family and friends to know Ethan and Gavin are doing well, despite the challenge of their diagnosis. We are more private about the struggles or the dark times, when the reality seeps in that life is hard for them every day, despite all we have done to help them. It has been important for us to talk about this openly and with trained professionals, because having Usher syndrome doesn't mean that life can't be good. The important lesson we have tried to teach them is to be open, seek out assistance when they need it, to adjust to change, and most importantly, to believe that they are worthy. Now, as I see my sons move on to early adulthood, I realize it wasn't really a puzzle because there was no one right way to make the pieces fit and there were pieces that were very different for both of them. When I look at my sons I see two beautiful mosaics made up of irregular pieces; some are colorful, some shine brightly, some are dark and grey, some were placed many years ago and some more recently, some were put in place by us, their parents, and many were placed by the family, friends, and professionals that surrounded them. Most were placed by each of them, as they made choices throughout their lives. As their parents, we did not aways make the right choices, react appropriately, or say what we should have, but we did our best and are proud of the young adults they are now.

ABOUT THE AUTHOR:

Pamela Aasen is the parent of two adult sons with Usher syndrome. She was a Special Education Teacher for 25 years and most recently was the Early Hearing Detection and Intervention (EHDI) Mentoring and Family Engagement Project Director for the SPAN Parent Advocacy Network from 2017-2022. She is the Education Advisor for Ava's Voice and a Volunteer Ambassador for the Usher Syndrome Coalition.