Autism Awareness Month:Book Review:Autism and Allelulias

I was sent a copy of Autism and Allelulias by Kathleen Deyer Bolduc to review for Autism Awareness Month and I have to tell you, I love this book!

I have shared my Christian faith here before, but I was a bit anxious about this book. I was not in the mood for a sappy faith and disability book full of "if you would JUST..." then your path would be easy and strewn with rose petals. I have too many faith-full friends who work too hard to understand, interpret and deal with too many issues to have Autism minimized in this way.

At the same time I cannot tolerate the "disability is tragedy" and "Autism is the enemy" mindset either--people with Autism deserve better. They have more and ARE more than those mindsets allow.

Happily this book does not go down either of these common paths. The author has a 24 year old son with Autism, intellectual disabilities and an anxiety disorder. She has dealt with the challenges of learning, behavior and societal challenges. And she LOVES her son and wants the most for him--now, not after he somehow changes.

In short, she gets it.

It is a lovely little book. It's written in a devotional format with short chapters headed with a Bible verse followed by reflective anecdotes. There are also some touching poems (one about good mothers brought me to tears.) And each chapter ends with a prayer--prayers of joy, prayers for peace or acceptance, prayers of gratitude. You can read it in small daily doses, or read as many as you want, all at once.

You will laugh, and you will cry.

I think any parent of a child with a disability could enjoy this book--I did and neither of my kids who have diagnoses have autism. I think any parent of a child with difficult behaviors would relate to this family--Bolduc is honest and descriptive--she knows where you are. And her interpretations of her experiences--joyful and tough--through the eyes of faith will be a gift to any reader.

More about Faith and Disability: my view

I found it really hard to write about faith and disability—not out of fear or embarrassment, but because the words I could put together were just pitiful. But I have been challenged…. So here goes:

In my view God fills my world and my life like oxygen and faith is like breathing. Sometimes I breathe easily, sometimes I gasp and pant. And ‘when my cabin experiences sudden pressure changes and the masks drop down from the ceiling I have to remember to put mine on, then help others and most of all trust that it’s working even if the bag does not inflate completely.’

And on top of this I believe God knows my name, loves me (and everyone else) and has plans and intentions for me—which is all blended together somehow with free will. (See why I find it hard to write about this??)

The day Jenn was born we were shocked by her diagnosis and awed by the “coincidences” that surrounded us.
• Like my first hospital roommate checking out of the hospital AMA. My next roommate had a job working with adults with Down syndrome—a job which she LOVED!
• Like the way the Bible study I’d joined about a month prior allowed me to get to know 2 moms of kids with disabilities before I desperately needed them for their expertise.
• Like the friend who had received some inspirational writings about Down syndrome from someone she knew 2 days before my daughter arrived—for no reason that was apparent at the time.
• Like the doctor who said some of the most empowering words I’d ever heard in my life. I met him in the middle of the night when he was checking on my daughter—he and another doctor had switched call for that night.
• Like the magazine that had come with my diaper delivery which had an article about having babies with special needs—where I found the phone number for the National Down Syndrome Society (who gave me the number for my local group.)
• Like a whole host of other large and small events that kept catching our breath…

Do I believe that Jenn is here for a reason? Yes. Do I understand how disability fits into God’s plan? No, I confide in God, God does not generally confide in me!!! But I do believe disability is part of the plan.

In fact I believe that my daughter—like everyone else—is made ‘in the image and likeness’ of God. There are people who do not recognize this in her—or others. This indicates a deficit in them, not her. Period.

Have there been difficulties, challenges and struggles? Well yes, at times. And there has also been growth, new relationships and opportunity…

Why us? Why her? What did we do to deserve (or earn) this?

Absolutely nothing.

That’s what grace is: a gift you don’t deserve.

Click here to read about a book that’s a great resource for families, churches and agencies who support people with disabilities in living out their faith. You can also enter a drawing for the book signed by the author.

Image--a burning candle--from here.

Disability Blog Carnival #38 Is UP

The latest Disability Blog Carnival is posted at Ryn's Tales and the topic is Faith and Disability. Ciick the link to find links to posts from all over the internet on this subject. Invite your clergy and your small groups to read and discuss the various posts as well!

My post on the topic is below!

Blog Carnival #38: Book Giveaway

In my role as Virtual Trainee for the AUCD I attended their annual meeting last fall with people from universities all around the country who work to improve lives for people with disabilities through research, service and policy. After a full day of learning and a high-energy poster session I gathered with a group of starving people and went to dinner.

In the course of dinner conversation we ended up discussing how everyone became interested in working with people with disabilities. As a mom I found it fascinating that, while everyone’s stories were unique, they were all based on relationships they’d had with people with disabilities at some point in their lives.

One of our fellow diners, Dr. Erik Carter, had gotten to know people with disabilities while working as a camp counselor—he had intended to work with the non-disabled kids at the camp, but had been re-assigned much to his surprise. He said his experience at that camp changed his life—in fact one of the campers in his charge was the person that invited him to faith.

His experience so profoundly moved him that, in addition to his career work in education and research, he wrote a book to help congregations successfully integrate people with disabilities into their faith communities.

Including People with Disabilities in Faith Communities: A Guide for Service Providers, Families and Congregations extols the value of inclusion for faith communities, shares the current research about people with disabilities in congregations and gives tools and practical advice for applying principles of hospitality, belonging and continuous growth in your own community.

He builds a case for inclusion that is convincing and compelling.

“It is not enough for congregations to simply mirror the rest of society when it comes to including people with disabilities. Rather, they are called to be leaders in transforming the culture—to graciously, lovingly and actively influence their communities. When congregations push toward a higher standard than the rest of society; when they demonstrate leadership, rather than lagging behind; and when their efforts stand in stark contrast to those of others in their community, it sends a powerful message. When a welcome is compelled by deep love and a sacred call, rather than by legal decree, it speaks powerfully to a watching world and provides strong evidence of one’s faith commitment.” (p. 17)

Later he goes on to say:

“It is more than a “nice idea” to include people with disabilities in your congregation. People of faith are called to view people with disabilities as integral to the wellbeing of their community; every member should be regarded as indispensable. When an entire segment of the population remains absent from the body of believers, that community not only remains less than it could be, it remains less than it was intended to be. Wholeness will always remain elusive to a community when the gifts and contributions of a whole segment of people are missing. Indeed, it is the community that becomes “handicapped” when people with developmental disabilities and their families are not present.” (p. 18)

The book also draws a distinction between congregations that allow people with disabilities to be present and those in which these same folks belong, participate and do more than receive but also serve and contribute their gifts.

Beyond the why’s of inclusion, a good portion of this book is dedicated to the how’s as well.

There are questionnaires to evaluate physical and attitudinal barriers to , religious education and other programs, and the needs of individuals who wish to worship with you. There is a chapter on discerning and providing supports, a chapter on the role of support staff and one about expanding your initiatives to impact your larger community.

The whole book is geared to help congregations progress continuously in their hospitality.

In short, get 2 copies of this book—one for you and one for your faith community. I think any community would benefit from the support and challenge this book presents. Churches that are struggling (like this one in Minnesota)would be much stronger after studying this book together.

In honor of this blog carnival Dr. Erik Carter has donated a signed copy of his book for a drawing. If you would like to join the drawing, leave a comment by 5pm 5/29/08 and I will draw a name and we'll send it along. Good luck!

My other post on disability and faith is here.

(Image of book from here.)