Empowering Parents of Disabled Children with Kelley Coleman
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Parenting disabled children is an experience I wasn’t fully prepared for. There are so many joys, but also a lot of unexpected challenges that can sometimes leave me feeling overwhelmed, inadequate, bewildered, and even isolated. One of the most helpful things I've found is connecting with other parents who’ve been through similar experiences.
My guest today, Kelley Coleman, is fun, smart and gets it. She's a mom of a disabled child and the author of the essential guidebook, 'Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports.' In this episode, Kelley shares her story, practical tips for navigating complex systems, and talks about the importance of community and self-advocacy.
In this episode, we discuss:
[00:00] - Introduction and Welcome
[02:25] - Kelley's Story + Her Family’s Experience with Disability
[07:20] - Inspiration Behind the Book: A Practical and Relatable Guide
[15:16] - Learning from Disabled Advocates + Parents
[17:45] - Getting Comfortable with Disabilities
[23:43] - Building a Community: Voices from Experts, Parents, and Advocates
[26:39] - Preparing Parents
[31:54] - A Message for Families with New Diagnoses
[41:06] - Redefining Normal: Celebrating Our Disabled Kids
[47:55] - Self-Care for Caregivers: Finding Balance
[56:45] - Teaching Self-Advocacy: Empowering Your Children
[01:06:15] - Check out the Book “Everything No One Tells You About Parenting a Disabled Child”
Whether your child has just been diagnosed or you're looking to connect with others who can understand, this conversation is full of insights and encouragement you don't want to miss.
More of a reader? I got you. Here are some of the takeaways from the episode…
(You can also check out the transcript on the player above.)
Kelley's Story + Her Family’s Experience with Disability
Life can take unexpected turns, and for Kelley, that turn was when her second child was born with multiple disabilities. Before having kids, Kelley had a fun and creative job coming up with ideas for talking animal movies. However, after her son was born, she quickly realized his care needs would require her full attention, leading her to step away from her career and social life. She describes the transition as upending everything she knew, but her kids—both amazing, quirky, and the best of friends—became her new focus.
Kelley speaks candidly about the challenges and realities of caregiving. When her son was a baby, the family's journey through various diagnoses began, and she had to learn about complex medical needs, like feeding tubes, from scratch. Kelley emphasizes that while her role as a caregiver is full-time and lifelong, it is also filled with joy and deep connection. She highlights the importance of building a support network and planning for the future, all while adapting to the unique needs of her children. Kelley's unwavering commitment to her family is evident in everything she does.
Inspiration Behind the Book: A Practical and Relatable Guide
Kelley's book, "Everything No One Tells You About Parenting a Disabled Child," was born out of a desire to help others navigate the complex world of parenting children with disabilities. The inspiration came from her own experiences and the challenges she faced in managing her son's care. As a parent dealing with multiple diagnoses and the intricacies of medical needs, Kelley realized the importance of having practical, accessible information.
One night, after a difficult night of medical issues with her son, Kelley found herself emotionally drained and questioning how to manage it all. She recognized that she had the advantage of certain privileges, but many families did not. This disparity in access to information and resources motivated her to compile her years of experience, templates, and practical advice into a book that could genuinely help other parents. She aimed to create a guide that was not only informative but also relatable and engaging.
But she didn’t want her book to feel like an “Eat Your Broccoli” type of task for parents, but rather a fun, helpful companion on their journey. With personal stories, interviews with experts, and practical worksheets, she hoped to provide a resource that parents could use to better support their children and navigate the various systems involved in caregiving. Her goal was to alleviate some of the overwhelm and create a sense of community and shared understanding among parents facing similar challenges.
Learning from Disabled Advocates + Parents
Kelley Coleman emphasizes the invaluable support and information she gained from connecting with other parents of disabled children. Initially, these fellow parents were her main source of practical advice and emotional support. As one of her book's experts put it, in the early years, parents often find their best resources in each other.
However, Kelley soon realized the profound impact of learning directly from disabled self-advocates. Through social media and leaders in disability rights, she started engaging with disabled individuals who shared their personal experiences and insights. This direct connection provided Kelley with authentic, firsthand information that challenged and enriched her understanding of disability. She highlights the importance of listening to and learning from disabled people themselves, as their perspectives are crucial in navigating the complexities of caregiving and advocacy.
Getting Comfortable with Disabilities
In her book, Kelley emphasizes the importance of seeing disability as a neutral aspect of life, rather than something tragic. She candidly shares how she initially entered the world of disability through her son's diagnoses, carrying with her many misconceptions and biases. Kelley reflects on how she had to confront and unlearn these ingrained beliefs, realizing that true inclusivity goes beyond just saying the right things.
Kelley's journey involved shifting her perspective from seeing disability as a devastating obstacle to understanding it as an integral part of her son's identity. She talks about the relief and clarity that came from connecting with disabled individuals and advocates, who provided firsthand insights and challenged her previous notions. Kelley stresses the importance of using the word "disabled" without hesitation, rejecting euphemisms that imply negativity. By embracing this mindset and approaching everything with curiosity and a willingness to learn, Kelley believes that parents can better support their children and foster a more inclusive environment.
Building a Community: Voices from Experts, Parents, and Advocates
Kelley highlights the importance of building a diverse community that includes disability advocates, disabled individuals, parents, and experts. Creating such a network takes time and effort, but it begins with connecting with other parents and joining organizations run by and for people with disabilities. Volunteering and participating in community activities can also help families build that community and discover valuable resources and insights.
For her book, Kelley reached out to a wide range of contributors, many of whom she didn't know personally before and was thrilled by the enthusiastic response. Kelley emphasized that while parents might understand the day-to-day logistics of caregiving, they can greatly benefit from the experiences and perspectives of disabled individuals. Learning directly from those who live with disabilities can provide practical advice and broaden understanding, ultimately making life easier and more enriching for everyone involved.
Preparing Parents
Kelley believes parents should be prepared early on for the possibility that their child may have a disability. This conversation doesn't have to be daunting or negative. If hospitals, midwives, and doctors included statistics and resources in their baby classes, it would normalize the idea and reduce fear. 1 in 33 kids is born with a birth defect and 1 in 6 will be diagnosed with a developmental disability. By openly discussing these facts, healthcare providers can help parents feel supported from the start.
It’s helpful to provide parents with practical resources right away, such as information about local parent training and information centers. Instead of leaving parents to "go home, Google, and cry," professionals could provide clear, actionable steps. Kelley shares her personal experience of wishing she had this guidance earlier, noting that it took her a decade to figure out much of what she now includes in her book. Parents are not trying to "fix" their kids but are looking for ways to support and understand them better. By preparing parents with real information and resources, the journey becomes more manageable and less isolating.
A Message for Families with New Diagnoses
First of all, “How are you doing?” It’s okay to feel overwhelmed and inadequate, these emotions are a natural part of the journey. Your feelings are valid. But these feelings won’t last forever. And getting to know your kid, as they are, is the magic that will get you through this.
If you want a shortcut to feeling better-connect with other parents going through the experience of caregiving, regardless of whether or not the diagnoses are the same. Joining these communities early on can make the journey so much easier, and can give you practical advice and emotional support.
Redefining Normal: Celebrating Our Disabled Kids
Kelley shared how her family learned to celebrate their son's unique ways of experiencing the world. She described how her son, who is visibly disabled, expresses his joy loudly and unapologetically, whether it's waving enthusiastically at people or squealing with delight in public places. Initially, Kelley found herself constantly apologizing for his behavior, but she realized this was unnecessary and unhelpful. By shifting from apologizing to thanking people for their understanding, Kelley found a way to acknowledge her son's unique expressions without making him feel like he was doing something wrong.
This shift in perspective not only changed how Kelley interacted with others but also helped educate people about disability in a positive way. Instead of shame or embarrassment, she embraces her son's way of interacting with the world. For example, in situations like grocery stores or airplanes, Kelley says, "Thank you for understanding," rather than apologizing. This approach fosters a more inclusive and understanding environment in public spaces.
Self-Care for Caregivers: Finding Balance
The common notion of self-care can feel out of reach for many caregivers. Traditional suggestions like yoga classes or spa days might not actually fill your cup. For Kelley, self-care is about finding what truly brings relief and joy, even if it's something as simple as a short walk or lying down for a few minutes. It’s important to focus on how you want to feel and identify activities that help you achieve that feeling.
Kelley also highlighted the need for a solid foundation before engaging in self-care. This might mean tackling some tasks or paperwork first, to create mental space and allow true relaxation later. She pointed out the constant cognitive labor involved in caregiving, like being tied to a phone for emergencies or monitoring health conditions, which can lead to deep exhaustion. Self-care, therefore, is not just about specific activities but about creating a space where caregivers can recharge.
Teaching Self-Advocacy: Empowering Your Children
Teaching self-advocacy is crucial for children, especially those with disabilities. Kelley emphasizes that self-advocacy can look different depending on the child. For her twelve-year-old, who can communicate verbally, it involves conversations about assessing situations and making choices. For her ten-year-old, who has emerging communication skills, it means using tools like a communication device and making simple choices, such as selecting a shirt to wear or deciding where to eat breakfast. These small acts teach him that his preferences matter and are respected.
Kelley stresses the importance of involving children in decisions about their lives, whether it's discussing their IEP goals or explaining medical procedures. Even if children cannot fully understand or respond, the practice of involving them and respecting their choices is fundamental. This approach not only empowers children but also prepares them to advocate for themselves as they grow older. By building these skills early, parents can help their children navigate their lives with greater confidence and independence.
“Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports”
You’ve got to check out Kelley’s book! It truly is the handbook for caregiving—covering practical aspects like insurance, IEPs, and financial planning, and offering templates to make the overwhelming role of caregiving feel more manageable. It’s also relatable, comforting, and even fun, helping you feel less alone on this journey.
Beyond the book, connect with organizations and creators in the disabled community. Following these voices on social media and elsewhere provides invaluable perspectives and insights. Listening to and learning from those with lived experiences will make the path of caregiving more informed and compassionate.
Even if you don't have a disabled child, learning from disabled individuals can broaden your perspective. Their insights foster empathy, enrich your understanding, and help create a more inclusive and compassionate world for everyone.
Resources
Thanks for being here!
“Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports” by Kelley Coleman, is available wherever books are sold. You can also check your local library! If they don't have it, simply email or call and request them to add it to their collection so it’s available for everyone.
Kelley’s Website: www.kelleycoleman.com
I’d love to hear from you! What was your favorite part of this episode? Have you read Kelley’s book too? If so, what was your favorite takeaway? You can send me a DM on Instagram at @maybethiswillbethecure.
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Disclaimer: The information shared in this podcast & the show notes is for informational purposes only and is not a substitute for professional medical advice. Consult your physician before making any changes to your health plan. The host, Megan, is not a healthcare provider. Always seek guidance from a qualified health professional for your individual needs.