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Books for Parents about Childhood Disabilities

Nearly 30% of households with children in the United States have at least one child with complex needs. Raising children with medically complex needs can leave parents and caregivers exhausted physically, emotionally, and spiritually. This book list offers stories of love and loss alongside grief and loss. Through practical advice and stories of families walking similar paths, these readings help parents heal, laugh, and find joy… even during the most difficult times.

Universal reads

1. Normal Schmormal

Normal Schmormal is both a memoir and how-to guidebook by Ashley Blaker, a comedian and father of six children, four of whom have complex needs—two boys with autism and attention deficit hyperactivity disorder, one boy who needed surgery to repair a heart defect, and an adopted girl with Down’s syndrome. Blaker writes with humor and love about the joys and challenges of parenting children with special needs. He recounts endless meetings and therapies, public humiliations, failed playdates, bizarre conversations, and occasional violence. Blake and his wife, Gemma, learned to truly embrace diversity and respect their children, as they are. His main message is that “the real task of parenting is to make peace with what you’ve been given; to offer unconditional love and support without trying to turn them into something they’re not.”

2. Everything No One Tells You About Parenting a Disabled Child

Everything No One Tells You About Parenting a Disabled Child acts as a guide to provide information and an actionable roadmap as you navigate the most essential details of the medical, education, and social security systems for your disabled child. Based on her own experience as a mother of a son with an undiagnosed genetic disease, author Kelley Coleman presents templates, worksheets, and advice from over 40 experts, covering medical issues, insurance, financial planning, disability rights, and education plans.  The “been there, tried that” information will save you time, money, and stress, so you can spend more time with your family.

3. Becoming Brave Together

Becoming Brave Together

In Becoming Brave Together, Jessica Patay pulls together a group of mothers who each wrote their own essays about navigating their children’s neurological disorders, autism, ADHD, and teenage anxiety and depression. Patay is the mother to an adult son with Prader-Willi syndrome, a rare genetic disorder. This collection of stories draws on her own learning that ‘you are not alone.’ Themes of exhaustion and loneliness surface alongside themes of hope and strength in numbers. Jessica builds a bridge of connection, creating a world where every mother feels seen.

4. Get Your Joy Back

In Get Your Joy Back, Laurie Wallin leverages her firsthand experience as a mother of two adopted girls with developmental, medical, and mental health needs, to highlight forgiveness as the first step to improve daily life and restore joy. Amid all the time spent doing research, going to appointments, participating in support groups, getting counseling, and monitoring your child’s health, parents of children with special needs are often drained. However, “resentment, not the intense care they must provide their child, is the parents’ greatest stressor and source of pain,” she says. Wallin shares practical strategies to banish “wishing that things were different” feelings.

5. Raising Jess: A Story of Hope

In Raising Jess: A Story of Hope, Vickie Rubin shares the flaws and successes of her family journey after the birth of her first daughter Jessica, diagnosed with multiple cognitive and physical disabilities at nine months. Years later, genetic testing confirmed Jess was born with a rare 1q43-44 microdeletion syndrome – a disease in which a portion of chromosome 1 is lost, leading to developmental delays, intellectual disability, and seizures. In this memoir, Rubin writes with honesty, humor, and unwavering hope about the challenges and joys of caring for Jess, the struggles in her marriage, and doubts about having more children.

6. Beautiful People: My Thirteen Truths About Disability

In Beautiful People: My Thirteen Truths About Disability, activist Melissa Blake, diagnosed with Freeman-Sheldon Syndrome, writes in a sparkling, frank way about what it is like to live in a society that isn’t designed for disabled people. After she was bullied online, Blake decided to become a disability advocate. She shares her thoughts on how the world operates to render the disability community invisible, and she discusses the damaging effects of discrimination. She also addresses unrealistic beauty standards and her struggles with self‑image and self‑acceptance. Included are stories of activists of the disability rights movement in America and their achievements.

About Neurodivergence

7. Dancing with Max

In Dancing with Max, author Emily Colson shares her story of becoming a single mother, leading to her son Max’s diagnosis of severe autism. The book focuses on Colson’s love and perseverance despite the obstacles of Max’s diagnosis and her transition to parenting solo. Colson tells her sacrifices and efforts as she seeks ways to communicate with Max, who is non-speaking, and how they triumphed over life’s toughest challenges, together. Throughout the book, Emily uses vivid metaphors and imagery to connect readers to how she feels, and how other people respond to Max’s behavior, inspiring readers to face their own challenges.

8. Parenting at the Intersections

Parenting at the Intersections: Raising Neurodivergent Children of Color revolves around the additional challenges families face at the intersections of oppressive and unequal systems, including discrimination against people of color and discrimination against people with disabilities, and how the capitalist economic system impacts these forms of discrimination. As therapists and mothers of neurodivergent children of color, Jaya Ramesh and Priya Saaral explore how living at these intersections may cause isolation and hinder identity development for children. Throughout, they invite you to reflect on your parenting journey as an act of social justice.

A focus on marriage

9. How to Build a Thriving Marriage as You Care for Children with Disabilities

In How to Build a Thriving Marriage as You Care for Children with Disabilities, marriage experts Kristin and Todd Evans offer practical guidance to deepen your love and strengthen your relationship while parenting children with special needs. As parents of Josiah, diagnosed with isobutyryl-coA dehydrogenase (IBCD) deficiency, a rare genetic condition that causes growth and development issues, and Beth, diagnosed with Cri du Chat Syndrome during pregnancy, they have relatable insights to share. They focus on supporting each other emotionally and offering uplifting words amid challenging situations to keep both partners feeling connected and loved. Some of their tried and tested marriage principles revolve around regular time spent together—looking at life together with a lighthearted and cheerful perspective and celebrating small victories together to help reduce stress and build a happier marriage.

Healing from child loss

10. Breath Taking

Breath Taking: A Memoir of Family, Dreams, and Broken Genes is a clear-eyed memoir of Jessica Fein’s journey as an adoptive mom, and the emotional ride since the diagnosis of her daughter Dalia with a rare degenerative condition called Myoclonus Epilepsy with Ragged-Red Fibers (MERRF) syndrome at the age of five, which would take her life at 17.  Fein shares the challenges of loving and caring for a terminally ill child and persevering even in the darkest hours. Inspired by Dalia’s passion for life, Fein eventually discovers how to live in the present by being a persistent advocate while focusing on being a serene champion for her late daughter. She learns to show strength and weakness while allowing joy to overcome heartbreak.

11. Normal Broken

After losing her daughter to epilepsy at the age of 3, Kelly Cervantes knows that grief can be many different things and that dealing with it is a personal process. In Normal Broken, Cervantes shares her ongoing healing journey, along with useful pieces of advice and exercises to help readers understand where they are in their grief journey.  The book is designed to be a journey companion for those facing the loss of a child with disabilities—it breaks loss journeys into relatable moments of grief, whether you’re not sure if you’re ready to heal, when you feel ready to move on, and when you are dealing with meaningful dates, such as anniversaries.

12. Game Changer

Game Changer features the story of Joshua, written by his parents, Alison Rockett and former NFL player Paul Frase. Born with myotubular myopathy, a rare genetic disease that causes muscle weakness, doctors didn’t expect him to live past the first year. Joshua’s passion and will to live, together with his parents’ determination, defied the odds, and he lived through the age of 15. The book also touches on the Joshua Frase Foundation, built by Alison and Paul to fund research aimed to understand the disease, so that effective therapies can be formulated for a cure.

Calling for spiritual guidance

13. A Different Dream for My Child

In A Different Dream for My Child, Jolene Philo shares her experience as a mother of a son born with a life-threatening condition. Her son’s top and bottom parts of his esophagus were not connected, causing difficulty breathing, feeding, and ultimately requiring several surgeries and hospitalizations far from home. Philo describes the lack of support from family and friends she and her husband felt during that journey, resulting in feelings of isolation. Philo found her way through by relying on spiritual meditation and prayer. In this book, Philo takes you through her path of spiritual healing and provides devotional meditations addressing the spiritual needs of parents, as she shares her own experiences, delivering a message of hope. 

14. Wrestling with an angel

In Wrestling with an Angel, author Greg Lucas shares his captivating story of being a police officer who adopted his son Jake after being abandoned in a hospital. Jake had profound physical and neurological issues and began his first seizures at one year old. Lucas describes his personal experiences, insights, and biblical wisdom with raw honesty and compassion. Through tragedy and pain, he shares lessons of love, faith, and endurance, and relates caring for Jake to how God cares for all.

15. Special needs parenting: from coping to thriving

In Special Needs Parenting: From Coping to Thriving, Lorna Bradley offers emotional and spiritual guidance to support readers as they walk the path of special needs parenting. Bradley shares her views as a theologian and parent of an adult son with Asperger’s syndrome, an autism spectrum disorder. Using various tips, she encourages gaining a deeper feeling of God’s presence to assist with processing deeply retained feelings of guilt and grief. She also shares strategies for improving patience, maintaining healthy relationships, and finding hope and healing. The book is built on reflections and discussion questions, making it a useful resource for small groups and book clubs.

16. Refresh: Spiritual Nourishment for Parents of Children with Special Needs

Kimberly M. Drew and Jocelyn Green, authors of Refresh: Spiritual Nourishment for Parents of Children with Special Needs, know firsthand how raising children with special needs can feel too challenging to find time or initiative to seek spiritual encouragement. Their children have a range of diagnoses, including Down syndrome, cerebral palsy, autism, epilepsy and hearing loss. This book is filled with encouragement and devotional guides to offer digestible spiritual support, from diagnosis to dealing with daily demands, loss, and grief. They offer a daily devotional, including a reading from the Scriptures and stories and testimonies from the authors.

17. The Spiritual Art of Raising Children With Disabilities

In The Spiritual Art of Raising Children With Disabilities, Kathleen Deyer Bolduc, mother of a young adult son with autism and mild intellectual disability, uses a mosaic metaphor to describe life while raising children with disabilities—through faith and spiritual direction, families can rebuild the fragmented pieces of their families into a complete piece, akin to how you would build a mosaic. Throughout the book, Bolduc shares powerful and faith-inspired stories of other families traversing similar journeys and yields exercises and scriptures to help readers find spiritual peace in their lives.

Bonus!

18. Let’s Adapt for Everyone!

Let's Adapt for Everyone

While not technically a book about disability, Let’s Adapt for Everyone! is for parents and caregivers of children with AAC (augmentative and alternative communication) needs, written by Greg Nakata, father to a child who uses the devices he builds. If your child is learning to use or has mastered using switches, this book will teach you how to adapt fun and practical objects so that your child can control them. Nakata uses multiple toys and a fan as teaching examples. You are also taught how to make your own switch from scratch, including tips on preparing and soldering wires.


References and Further Reading

National Survey of Children’s Health (NSCH) Data Brief, 2022, Health Resources and Services Administration’s Maternal and Child Health Bureau

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