Faith, A Book Review of "Autism & Alleluias" by Kathleen Deyer Bolduc

This week marks Holy Week for Christians. In my family we have many traditions that we celebrate during this period of Lent. We are about to embark on one such tradition this evening: the grinding of the horseradish. Some people try to pass it off as something from our Polish heritage.  Don't bother Googling it, as much as I can't prove it, I am quite sure it's something a great Uncle made up to get us all together - and the men a chance to drink Crown Royal. 

My faith has certainly been tested since we first realized that Zach was on the autism spectrum disorder. I am sorry to say that it is shaky at best throughout all this. But here is the odd thing, even when so many things that logically tell me there can be no way that an almighty God exists, let alone a loving one, I can't seem to shake it; I still believe.

I was recently asked to review a book, Autism & Alleluias,  written by Kathleen Deyer Bolduc, mother to a child with autism. Initially, I feared a sugary sweet story of a mother thanking God for a son with a disability. I have read mothers who speak this way and I just cannot, for the life of me, relate. Some stories I have read may be inspirational, but talk about children who have recovered or are near recovered (lost their diagnosis), and these are nice, but I cannot relate. We are still in the throes of it.

First off, let me say that as an overwhelmed parent, I appreciated that  I could read this book within our time constraints, as each chapter reads almost like a devotional, with a piece of scripture to contemplate, and Kathleen's own experience with that scripture in her experiences with Joel.

Kathleen's son, Joel, has not recovered. He is not a savant. He is not brilliant. There are good days, there are bad days. There are difficulties that a parent of a typical child could never understand.  There are dreams that they do strive for, but alas, realize are unattainable, they let them pass, and move on to those things they can attain. In the process Kathleen, Joel, and the rest of the family, keep on moving forward, managing through their struggles, being surprised by insight that only Joel could provide, and being blessed by strangers whose steadfast support of Joel turn them, for all intents and purposes, from plain caregivers to additional family members. At every turn, the smooth and easy to the muddy and thick, Kathleen manages to find God.

A summary from her publisher:

Most everyone knows a family that has been affected by autism. What is the role that faith plays in helping families cope? In this series of slice-of-life vignettes, God's grace glimmers through as Joel, an intellectually challenged young adult with autism, shares his gifts with those who love him.

If you are a mother of a child on the spectrum, or with a disability of other sorts, you will likely relate to the  intermingling of sunshine moments and rainy days, told with the frustration, yet without the bitterness, something, my blog readers know that I have not been blessed with, but I strive for.  In one vignette, she discusses the families attempt at training a dog with Joel in mind.  I marveled at how she discussed that although not the trained service dog specimen she was hoping for, he was in fact, the perfect dog for her son. She only mildly expresses her experience of spending a lot of money to a trainer, who once paid up front, no longer held up his end of the bargain.  With such poise in handling these situations, and ease at which she discusses hard to discuss issues, it was of little surprise to me to find out that Kathleen works in the field of disability ministry and has published other books: His Name is Joel: Searching for God in a Son's Disability (1999), and A Place Called Acceptance: Ministry with Families of Children with Disabilities (2001).

This story is not inspirational in the conventional sense that the Bolduc family's faith yields to Joel's healing or over the top miraculous deeds.  It is inspirational in that in times of struggle or fear, moments of beauty and clarity appear (perhaps little mini miracles), often from Joel himself. Could these moments be the true grace of God?   We, too, have had these moments in our short span with autism.  They are what help me to sustain my faith.

While I am a Christian, and this story is told from the perspective of a Christian, I was happy to see that the book tells of an angel sent to the family in Muslim form.  We too have had such a Muslim presence in our lives.  I think our story will warrant a post of its own.  I  found the book not to limit itself to a particular religious perspective, but a common theme of faith which I really appreciated as someone who respects people of all faiths. 

Kathleen will be having a free webinar titled "A Place Called Acceptance" which is scheduled for April 8 at 2:00 p.m. She will be joined by Bill Gaventa (editor of the Journal of Religion, Disability, and Health) and Ginny Thornbugh, the program director for the Interfaith Initiative of the American Association of People with Disabilities. If you are interested in attending, they ask that you register.