How does your child’s diagnosis affect your family? Where do you find other parents or caregivers facing similar joys and challenges? Kate Swenson writes that autism “affects the whole entire family,” and notes that it was nearly impossible for her to find an autism community when her son Cooper was first diagnosed. Parenting Impossible Host Annette Hines talks with Swenson about creating the blog, Finding Cooper’s Voice to be a shared space for families like hers that has reached thousands. She tries to speak about Cooper in a respectful and hopeful way. Yet Swenson acknowledges that throughout her blogging journey, she has learned from mistakes and about the range of parenting and family experiences with autism, some of which are truly difficult due to the lack of support and silence about how autism impacts us or how varied the symptoms are for each individual.
Social Media’s Platform for Advocacy
Swenson found that her online presence really took off four years ago when she created her Facebook page and posted videos, some of which went viral, about her raw, difficult experiences with Cooper. Since then she has developed a huge following of people who create an online community through the ways that Swenson shares about her family. During the interview, Hines asks about the autism community and the seeming lack of a cohesive voice or unity as a community. Swenson responds that we need self-advocates to guide and teach about autism. We need those parent, teacher, therapist voices to encourage and uplift each other. Swenson notes that she sees a lot of angry advocacy and chooses to not be a part of that. Instead she encourages advocates to support one another rather than attack the school system or agencies. In light of her desire to remain hopeful and respectful, Swenson notes the challenges of using an online forum to share about autism especially in the short space of a blog article, which is why she chooses to be careful about how and when she shares about the more complex issues like self-injuring. When Swenson published her memoir, Forever Boy: : A Mother’s Memoir of Autism and Finding Joy about Cooper’s world and how she navigates motherhood with four children, she found the book allowed for more control of the narrative of her family’s experience to tell the whole story that is full of joy, pain, and everything in between. Swenson’s writing creates an authentic, open, and honest space that truly resonates with others. We are thankful that Swenson is so generous in sharing her stories to be an advocate and create an online space for the autism community through her blog, Facebook, and Instagram platforms. We highly recommend Forever Boy as your next read. You can find her book on amazon and learn more about Swenson and her family at www.findingcoopersvoice.com.