Becoming a Parent Leader in the Disability Community
by Pamela Aasen, Community Manager for Everyday Heroes Kids, as Published in Exceptional Parent Magazine, March 2023
But for those whose child(ren) is born with a disability, the path we thought we were on quickly changes and we must learn to navigate our new reality, adjust to the needs of that child, and factor in how that works for the whole family. Both of my children, Ethan (21) and Gavin (18), have a rare recessive genetic condition called Usher syndrome. They both have type 1, which means they were born with profound sensorineural hearing loss with no residual hearing, have retinitis pigmentosa (causing tunnel vision and eventual blindness), and vestibular dysfunction. I did not know what any of this meant, what their future would look like, or even how to manage my grief and anger. Eventually I realized I had to process my feelings and compartmentalize them so I could research, with the help of my husband, and plan how to help my children.
I have written about our journey as a family regarding advocacy and building relationships (see list of resources). I have written about working with my husband, my children, the community, support organizations, and professionals. I wholeheartedly agree with, ‘it takes a village,’ and I couldn’t have done it without the amazing people working with our family. But, it took years of counselling/therapy (whatever you want to call it) to reflect on my contributions or to give myself a pat on the back. Recently, as I became an empty nester with both of my sons in college, I started to look back and contemplate my life; to what I have gained, what I gave up, and what I learned about myself. When I could finally say to myself that I did everything I could with what I knew at the time, and not play Monday morning quarterback, I could really begin thinking about the Parent Leader role and not be reluctant to call myself a leader. Instead, I could see it as doing what I could to support my children and help others along the way. Now, I have fully embraced the role.
My journey started in the early 2000’s when the internet or social media wasn’t what it is today. At first, having two children with a genetic disorder that involves multiple sensory losses did not allow for much time to think about anything other than finding the appropriate professionals and then attending the therapy and follow-up appointments that were necessary. I was just trying to get through each day; doing what was essential to help my children develop and thrive. It was my goal to help them build their confidence, find their inner strength, and develop the fortitude to work hard to succeed and achieve their dreams. With my husband’s help, we eventually found the resources and professionals we needed. I have been fortunate to have worked with incredible professionals along the way, though I have had my share of frustrations within the health and education systems. It was my hope, with sharing my experience in trying to meet the physical, educational, and social-emotional needs of my children, I could help newly diagnosed families by sharing what was helpful to our family and help them avoid some of the frustrations. Everyday Heroes Kids in Canada, and eventually across North America, is trying to do just that through a free platform that connects families to pediatric professionals, organizations, and resources.
Parent Groups were my first resource. While attending these, I was focused on opportunities for my children to socialize with other children like them, and for my husband and I to have the opportunity to be around other parents who were on a similar path. Meeting others who have a shared journey is a powerful and vital resource. We first joined to hear stories, and then later began to share ours. Eventually, I started to look for groups that included parents and professionals, those that offered conferences and more opportunities to learn about best practices and new innovations. I certainly appreciated the professionals we had in our lives, but I was looking for as much information as I could, to further develop my children’s skills. After all, much of our time was spent outside the professionals’ offices, so we needed as much support as possible, to put what we learned into practice when we were on our own. I enjoyed attending panels and being able to hear what other parents and/or adults living with Usher syndrome had to say.
And then, I was asked to be on panels to share my journey. I wasn’t really looking to do that. I was nervous, but it seemed a natural progression from wanting to find the support and resources needed to help my children, to then being given the opportunity to share what I had learned with other parents and caregivers. From panels, I went on to speak to groups that included professionals, teachers, and students. The next progression for me was involvement in advocacy and awareness groups. I volunteered to become an Awareness Advocate for the company that made my children’s cochlear implants, to help families who were making a decision about cochlear implants for their child. From that, I was offered the opportunity to be employed part-time as the Cochlear Awareness Coordinator for Canada. I was asked to speak at a couple of fundraisers, which led to creating a charity golf tournament to raise money for organizations that were important to our family.
As these opportunities were coming my way through the groups I was involved with, I still did not recognize that my involvement was putting me on the path of becoming a Parent Leader. The term Parent Leader was not heard much, even within the parent groups I was a part of. I was still working as a Special Education teacher, and considered myself an educator, in terms of employment, and outside of work, as a parent advocating for my children. Then in 2010, I was approached to be a Board Member for a very well-known and large Children’s Treatment Centre in Ontario, Canada, where we were living. My children had worked with professionals across several regional locations for this center. I was very intimidated by this opportunity and wondered what I could possibly have to offer them. This was my first experience where the term Parent Leader was used, and it was suggested that my voice as a parent would be valuable to the Board of Directors, who were overseeing a center that treated children. The importance of the parent voice seems so obvious now. This role added to my confidence, and led me to seek out other roles and choose to serve on different groups, when offered the opportunity. When I moved to New Jersey and left teaching full-time to focus on my children, these previous roles compelled me to seek out organizations in the United States. I joined the Board of Directors for Ava’s Voice, a non-profit Usher syndrome organization and became a Volunteer Ambassador for the Usher Syndrome Coalition. In 2017 I applied for a job as the Early Hearing Detection and Intervention (EHDI) Family Support and Engagement Project Director for the SPAN Parent Advocacy Network; which I have been doing now for five years. SPAN also provides training to be a Resource Parent and Volunteer Advocate. All of these experiences challenged me to add my voice where it is needed, even if it felt out of my comfort zone at first. As I look back, I realize the key for me has been finding the groups that most reflected my background, and where I felt I could contribute.
Most groups focus on advocacy/empowerment, fundraising, research, policy change, awareness/education, or some combination of these areas. I have dipped my toes a little in fundraising, research and policy change, but have leaned more toward organizations that are engaged in advocacy/empowerment and awareness/education. SPAN is an amazing organization that I have been privileged to be part of, because it empowers parents to become leaders and educates families to help improve outcomes for children. Through my work for SPAN, I was honored to receive the 2020 National EHDI Family Leadership Award, a recognition that was both surprising and validating. With Ava’s Voice co-founder, Carly Bullis, I have been a part of many initiatives to connect families and empower youth. I am most proud of helping Carly realize her dream in starting the first sleep away summer camp (USHthis) for youth with Usher syndrome, in 2019. And then, in collaboration with Chloe Joyner, who founded UsherKids, UK, the camp was held in the UK in 2022. It is going to be offered in both countries in 2023. This is what it is all about… creating the opportunities to benefit our own children and helping other families; even making it a little easier for families to find resources when they need them.
The leadership of parents, representing the voice of families in meaningful roles within programs and communities, is crucial to positive outcomes and accountability. Being a parent leader can range from: sharing the names of specialists, meeting with new families, volunteering to serve on Boards or Advisory groups, working in the disability space, to even starting a nonprofit. The common theme is wanting to make positive changes for the benefit of other families. As I write this, I have new exciting adventures and challenges coming my way for 2023. My past volunteer experience, involvement with non-profits, and my employment with the SPAN Parent Advocacy Network has helped me build the knowledge and skills to move to another position that will enable me to add the parent voice and be in a position to help more families.
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.
