cacy skills. Participate in a study and/or attend family events at the clinic so that the association with the building is not only about therapy or medical appointments. Families have different comfort levels, so the involvement can take many different forms. For some it could simply mean making a donation or supporting activities, some may want to become involved to help other families, or some may be comfortable in sharing their story publicly. Our family started a golf tournament in Canada to raise money for organizations that were important to us. Now, in New Jersey, we all have significant roles in Ava's Voice and the Usher Syndrome Coalition, organizations that support families with a child with Usher syndrome. My sons have also been featured in a video journalism series, called Sense Stories, that shares stories of individuals living with Usher syndrome by the Usher Syndrome Society.

SAY THANK YOU TO PROFESSIONALS: The professional members of my family were all invested in the process of helping me and my husband raise and nurture our boys into the brave, strong, confident young men they have become and who have overcome the challenges they faced, with dignity and determination. They helped my husband and me build the foundation to support our children's learning and development. They empowered us to make the choices that were right for our family, make the decisions to support the well-being of our children, and even take risks, like moving to a different country, with the knowledge that we would be OK.

The words 'thank you' just do not seem like they are enough, but hopefully, over the years, I have expressed the appreciation I feel for the role they played in our lives. I am most grateful for the family-centered approach we experienced at the Cochlear Implant Clinic at the Hospital for Sick Children in Toronto, as well as their openness to developing relationships with the families they served. I was able to express my gratitude to them through nominating the team for two awards based on the provision of Family-Centered Care; one was though the hospital-based Humanitarian awards and one was a national organization award. I was thrilled when they won both awards and received the recognition I felt they deserved.

FINDING THE 'RIGHT FIT' PROFESSIONALS: I feel like I won the lottery when I think of all of the professionals who have worked with my family. But, it wasn't luck. We researched, we moved, we asked, we visited, and we made decisions based on who we thought would be a good fit for our family. It took time and effort and we were fortunate that we could make the decisions needed to find the professionals who strengthened and supported our family.

My hope for families is that this process gets easier and that every family doesn't have to start from scratch. Families need a place to find the professionals who are familiar with the diagnosis of their child and not have to make several visits until they find the right one. The SPAN Parent Advocacy Network is an organization committed to engaging parents and professionals as partners in improving outcomes for infants, toddlers, children, and youth in NJ. There is also an organization in Canada called Everyday Heroes Kids that was founded on the belief that connecting families with appropriate pediatric care should not be difficult. They are creating the world's largest resource for pediatric professional services that is accessible to caregivers seeking specific professional types across different fields. They want to centralize the information so families spend less time on the search and more time on the needs of the child.

All families want to find the support and resources needed to help their children. We know that finding the right professional at the right time can be life changing, as the earlier the intervention, the better the outcome. As I have observed over the past 20 years with my children, working with the appropriate professionals and actively learning techniques to face obstacles with confidence will last a lifetime.•

ABOUT THE AUTHOR:

Pamela Aasen is the parent of two children with multiple disabilities, and serves as the Director of the EHDI (Early Hearing Detection & Intervention) Mentoring and Family Engagement Project at SPAN Parent Advocacy Network. For more information, see spanadvocacy.org/programs/ehdi

BETTER OUTCOMES : PROFESSIONAL RELATIONSHIPS

SPAN PARENT ADVOCACY NETWORK spanadvocacy.orgi

EVERYDAY HEROES KIDS ehkidshealth.com

PARENT CENTER HUB Find your Parent Center parentcenterhub.org/find-your-center

FAMILY-TO-FAMILY HEALTH INFORMATION CENTER familyvoices.org/affiliates

AVA'S VOICE avasvoice.org

USHER SYNDROME COALITION www.usher-syndrome.org

USHER SYNDROME SOCIETY Sense Stories ushersyndromesociety.org/sense-stories