Kelley Coleman Writes Book to Support Parents and to Honor her Disabled Son
Written by Arielle Dance, Diversability
Kelley, white woman with red hair wearing black glasses, leaning on a stack of books. She is wearing a yellow top and blue scarf. Credit: Kelley Coleman
Author Kelley Coleman discusses parenting a disabled son and her new book Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports.
Kelley Coleman (she/her) lives in California with her husband, two sons, and her son’s service dog. As a parent to a disabled son, Kelley is a non-disabled ally to the community. She is a former film development executive and screenwriter. On March 12, 2024, Kelley’s book, Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports will be published by Hachette Book Group. She explains the book as “the handbook for how to do all of the stuff (insurance! financial planning! school!) that I desperately needed a decade ago.” The book includes practical information for parents, alongside templates, worksheets, and checklists. It also includes personal stories and interviews with over 40 experts. Kelley is extremely excited for her book to be published and thrilled to include Judy Heumann’s final interviews. She admits that it is a unique journey to validating her own experiences as a non-disabled parent and caregiver while trying not to invade disabled spaces that she does not truly belong to.
In preparation for her book, Kelley wants to spotlight her son and his experiences that inspired her to write this book. Kelley’s son, Aaron, has multiple disabilities and has been followed by specialists since he was 3 months old. Ten years later, his disabilities remain undiagnosed. He loves airplanes, swimming, and music. “We adore our son. He's dazzling and handsome and hilarious.” He is a part of the Undiagnosed Diseases Network (UDN), which has allowed Aaron to receive extensive genetic testing. Kelley and her family hope to eventually receive a diagnosis in order to build a community for her son.
The first diagnosis Aaron received was Cortical Vision Impairment during infancy. This diagnosis brought a sense of relief because it meant their concerns were being taken seriously. Although Aaron seemed to be meeting his milestones at prior appointments, his parents knew additional support was needed. However, without a diagnosis, they found it difficult for their concerns to be taken seriously by medical providers. After years, the family has been able to assemble an expert medical team across many disciplines to address Aaron’s additional diagnoses of cerebral palsy, epilepsy, Autism, and global developmental delays.
Even with the relief of possible diagnosis, there are many challenges that the family continues to face. As a non-disabled parent of a disabled child, Kelley’s life is heavily immersed in the disability community. Although it is a major part of their son’s experience, Kelley is reminded that it is not all he is. “It can be tough to get others to see past his visible disabilities. It can be hard talking about the challenges that come with disability without being judged.” The way Aaron experiences the world can be overwhelming for him, and others often don’t understand his need for regulation. Aaron’s education team has annual Individualized Education Program (IEP) meetings which require extensive preparation, can last for hours at a time, and have always resulted in needing to take legal action in order for Aaron to receive the Free and Appropriate Public Education that he is entitled to by law. Further frustration comes when navigating the insurance coverage and social services that Aaron must access in order to get his support needs met. All the elements that come with disability are “gigantic learning curve[s] that I always feel like I'm behind. I never needed to learn how to love my kid. I've got that down. I just need someone to explain all of the paperwork and when our medical supply order is finally going to arrive.”
Kelley acknowledges that she is skilled in problem solving and communicating needs. Over time, she has gained unexpected skills like blending food for a feeding tube and supreme multitasking. “I can push a grocery cart, keep my son from eloping, handle his service dog, sing "Itsy Bitsy Spider" on repeat, and still manage to reach the really good cookies on the top shelf of Aisle 2.” Nonetheless, Kelley recognizes that she will never truly master parenting a disabled child. It is a constant learning journey. Though the exact feelings are hard to capture, she admits feeling frustrated, overwhelmed, sad, and also hopeful about navigating her son’s disability. “The challenging feelings are about my son's disability. My feelings about him as a person are different. He's this amazing human who lights up the world, and the rest of us are just along for the ride… I have very different, and sometimes conflicting, feelings about his disability. I do not adore epilepsy. I do, however, adore my child.”