In our own unique story, I have been there. It was during the twenty-week ultrasound, when after the images were taken and we rejoined the nurse practitioner hearing the strange words following the diagnosis, “if I had to pick a defect, I would pick this one, because it can be corrected by surgery.”
There ended up being more beneath the surface and we are, for all intents and purposes, the special needs parents Mantoan addresses, although I prefer to describe those needs as complex medical needs rather than the educational term “special needs.”
In a now-common format of memoir/self-help book, Kelly Mantoan, blogger and founder of the Accepting the Gift Conference, online resource and newsletter, shares her wisdom and experience as a special needs parent in Better than OK: Finding Joy as a Special Needs Parent, published by Our Sunday Visitor (October 8, 2021). The format, heavy on memoir, allows the reader to see himself or herself in the author’s story and feel less alone when facing a similar situation. Each chapter highlights a grace discovered by Mantoan in her journey as a mother of two sons with Spinal Muscular Atrophy (SMA) beginning with the grace of acceptance, reached via the familiar stages of grief.
As a mother of a son with unique medical needs, I appreciate the vivid pictures she paints of being in the room but mentally separate from the room, how the littlest things become part of the fabric of who we are when laced together with a traumatic diagnosis. It is comforting to hear another share those shared experiences, even if prognosis and the methods of coping were markedly different.
After sharing moments of her story, Mantoan offers a prescriptive take-a-way lesson and a prayer the reader can utilize when facing similar challenges.
With her candidness and buoyant extroverted personality, Mantoan dares to say the things many feel, but few feel comfortable verbalizing. Her words welcome the reader into the depths of another’s experience. The book is an excellent resource for those who never expected to face this and may not have experience in mental health.
Mantoan seems to discuss peace or acceptance as something you can arrive at rather than an mental adaptation or adoption in new circumstances. Having worked both with clients facing depression and my own experience of depression following diagnoses and hospitalizations, I am uncomfortable with her phrase “depression lasts as long as you let it”.
This might be a helpful approach for the “tell me straight” reader but could mislead one to think that depression is entirely under our control. If I just decide I will not feel this way, I won’t. Rather continuing symptoms are complex and not totally within our control. The blame lays with the casual style of writing rather than the author’s intent. More nuance is called for. The process of climbing out of depression begins with a decision. This is what Mantoan means and what she expresses earlier, but the simplification in the take-a-way lessons falls short.
As Mantoan leads the reader through the stages of her acceptance and growth to advocate for her children, she shows that being both parent and caregiver opens the door to that beautiful place where the mother sees the complete child and processes her grief enough to see the big picture, and the wholeness of her child, with all his uniqueness, as part of it.
The different sections focused on the graces of acceptance, hope, gratitude, fortitude and perseverance, humility, charity, understanding, and prudence offer the reader plenty of takeaways to focus on inside and outside of prayer. Mantoan is approachable and authentic, bringing about the best of memoir, which is what most readers will be looking for.
While the memoir portions of the work outshine her self-help advice, the work itself is and will be a valuable resource for those families seeing support, love, and acceptance as they begin their journey as special needs parents.