FORTUNATE SONS: "I feel like I won the lottery when I think of all of the professionals who have worked with my family."(Clockwise from top left) Ethan and Gavin with Auditory-Verbal Therapist Karen MacIver-Lux from Sound Intuition; the brothers participating in a study about balance; A family visit to the aquarium after an appointment; and the boys with Dr. Blake Papsin, Cochlear Implant surgeon and Otolaryngologist-in-Chief at the Hospital for Sick Children.

Both of my children have Usher syndrome type 1; they were born deaf, are progressively losing their vision and have severe balance issues. Now that my oldest, Ethan (20 years old), is in college and my youngest, Gavin (17), is about to graduate from high school, I am beginning to reflect on the efforts of so many that got us here. I wonder if the professionals that worked with my children really know the impact they had on our lives.

I have shared our journey with "Advocating as a Family in the Community" in the December 2019 edition of EP magazine: reader.mediawiremobile.com/epmagazine/issues/205614/viewer?page=25 I also wrote about the efforts to include "Mentors, Role, Models, and Peers" in my children's lives in the 2021 EP Guide: reader.medi- awiremobile.com/epmagazine/issues/206890/viewer?page=26.

None of that would have been possible without the professionals, across three different countries, that have supported us at different times, from initial diagnosis to now, 20 years later.

I am blessed to have found professionals that we consider a part of our family even though most are not working professionally with our family anymore. Many live in different countries, states, and/or provinces. However, because of the relationships we devel

oped, we maintain contact with most through Christmas cards, social media, and even visits when possible. I know that I can pick up the phone or send an email at any time asking for advice or a recommendation.

This relationship does not happen automatically so it is important to take the time to find the "right" professionals, to find the services that meet the unique and individual needs of your family. We want professionals who are mindful of family priorities and at the same time ensuring that a family is receiving appropriate services. We understand the need for therapies, treatments, and other types of appointments, but as parents, we want our children to still have the opportunity to be children and to not have these times feel like extra work they want to avoid. And at the same time, as a family member, we are aware that our expectations and approaches influence the relationships our children have with the professionals in their lives. Our approach and openness will affect their attitude towards these times and the success of the particular treatment or therapy.

therapy. The parent professional partnership is a relationship that is nurtured through the mutual appreciation for what each brings to the table. Families need to be actively involved in the decision-making