Welcome Encouragement for Special Needs Parents

Christy Wilkens recommends Kelly Mantoan's new book, Better than OK, for parents of children with special needs.

Full disclosure: I have been a special needs parent for over ten years now. One of our children has multiple profound disabilities; several others have hidden disabilities. In terms of target audience for Kelly Mantoan’s debut book from Our Sunday Visitor, Better than OK: Finding Joy as a Special Needs Parent, I am it.

Better Than OK cover

Mantoan, who has two children with a degenerative genetic disorder called Spinal Muscular Atrophy, explains that she wrote this book as a guide for parents coming to terms with a child’s diagnosis. While her writing career began with her own blog at This Ain’t the Lyceum, which both chronicles her family’s daily grind and tackles larger questions about the theology of disability and suffering, the idea of a book crystallized after Mantoan kept receiving the same kinds of questions from readers again and again. How do you come to terms with it? Why am I so angry? What about my other kids? Where is God in this?

“I wanted to share our story, and to be able to give more info than what I shared on the blog. I hoped to use our experience to answer questions and help people who had gone through a lot of the same things that we had gone through,” Mantoan explained in an interview in September 2021.

In the first and longest chapter of Better Than OK, Mantoan offers an outline of stages that a parent might pass through after a child’s diagnosis (shock, denial, anger, bargaining, depression, and acceptance, similar to the classic stages of grief outlined in psychology theory by Elizabeth Kubler-Ross). Throughout her description of each stage, she weaves in her personal experience as one example of how a parent might move through it, writing with a rare combination of frankness and self-compassion.

In that same interview, Mantoan admitted, “I didn’t deal well with things for a long time.” She explained that hindsight and time have been her two of the most important tools in making sense of her family’s experience, but also noted, “I turned to Our Lady from the very beginning. And I never stopped receiving the sacraments, so I never stopped receiving those graces.” Her book, too, offers insight into ways that struggling parents can and should maintain the practice of faith, even when their heart might not be in it. She acknowledges that anger and depression are natural responses, not feelings to be suppressed or signs of an inadequate trust in God.

Each chapter of Better Than OK, including the first, is anchored around a virtue that special needs parents can strive for the grace to obtain. Each chapter also ends with a cut-to-the-chase section called What You Can Do, followed by Key Takeaways and a prayer and patron saint for an increase of those virtues. This approach offers a rich flexibility to the reader, who can either dive deeply into Mantoan’s story and hard-won insight, or skim the surface and skip to the wrap-up when a quick spiritual boost is needed. (My own copy of Better Than OK already bears dog-eared pages for my favorite prayers.)

Mantoan’s writing style is effortless and conversational; reading feels like you’re sitting in her living room, just listening to her talk about her family and offer you the gentle encouragement of someone who has trod the path before you. She does not minimize the real trauma of parenting a child who needs frequent hospitalizations and whose life balances on a knife’s edge, but she insists that parents cannot remain in trauma — that God helps to bear every yoke, that together as a community, united in Christ, we can help each other do very hard things indeed.

She wants you to know two things: Parents, you are not alone, and this life, while challenging, can be a joy.

Mantoan punctuates her rock-solid, empathetic advice with episodes from the more than ten years she has spent raising children with profound physical disabilities, showing how it’s possible to cultivate a life of joy even amid complicated schedules, physical suffering, and spiritual uncertainty. Better Than OK is a deeply necessary, well written, and heartfelt book. Mantoan’s example of how one’s own suffering can become a gift to others and bear fruit for the Kingdom is one that all parents, not just special needs parents, should take note of.