AN INTERVIEW WITH AUTHOR KATHY BOLDUC
I recently read this lovely book, and really appreciated the perspective Kathy Bolduc has. She is further along the path than I am, and that I found to be very helpful. I think many of you will find it helpful, too, both from a spiritual and a practical standpoint. Below please find our interview:
1. What prompted you to write this book?
I’ve been writing about my spiritual journey with Joel for almost 20 years. Writing has been my way of making sense out of something that on the surface makes no sense: a beautiful boy with a damaged brain. I’ve been in a wrestling match with God for all these years – like Jacob, wrestling the angel, it has impacted my life in a significant way. It’s ironic—like Jacob, I have a damaged hip (literally! From a snow-shoeing injury!). But I’m also on a first-name basis with my God, because I’ve spent so much time with Him.
2. You say in the introduction that this is not a book about a parent’s immersion in autism research, or about a child’s recovery from autism. Do you feel this might keep people from reading the book?
I hope not! I don’t know about you, but I get tired of researching therapies and reading about other parent’s stories of “cures” for their children. It’s not that I don’t research, or that I don’t pray for healing for my son. I do. I’ve spent a lot of time on both. But I can’t let my entire life be circumscribed by that mentality—that my son is not “whole” if he is not “cured.” I remember watching a video years ago. It was called “Come Back, Jack,” and it was about a family’s struggle to heal their son of autism. It was beautifully done, and it won several awards. But I came away from it thinking, “I wonder what will happen to this mom and dad if their son is not cured? How will they survive?” That video was instrumental in helping me realize that I had to find another avenue to come to acceptance of my son Joel, just as he is, autism and all; behaviors and all. Then I could continue the research for therapies, etc. But only after coming to a place of acceptance, first. By the way, the producer of that video, Robert Parrish, recently wrote a book entitled Embracing Autism. His son was not healed of autism. But Robert found his healing in accepting his son, just as he is.
3. You write not only about Joel’s melt-downs, but about your own. What have you learned, in living with Joel’s autism, about dealing with intense emotions?
I’m not proud of my melt-downs, but let’s face it. Parenting a teenage boy is hard enough—add autism and an anxiety disorder to the testosterone, then add a menopausal mom, and you have a combustible situation! The amazing thing is, every single time I reached the end of my rope—every time I said (yelled, growled, snarled…), “God, I’ve had it. I can’t do this anymore. I give this situation to you. I give Joel to you”—God intervened. Every single time. Sometimes He sent me a person. Sometimes He gave me a Scripture. One time He arranged a trip to Palm Desert, California (you’ll have to read about it in the book!). Often He filled me with an overwhelming sensation of peace and calm in the midst of the storm. Now, whenever I feel like life is careening out of control (as we prepare for Joel to move out of the house this coming spring, anxiety tends to be an issue) I remember and re-call those situations when God intervened.
4. It seems as if Joel has been a spiritual teacher for you. What is the most important lesson he has taught you?
I think the most important lesson Joel has taught me is live in the present moment. Because he was unable to sit still for more than two minutes as a kid, Joel and I spent a lot of time at a county park near our home. It’s called Parky’s Farm. When we were at Parky’s, Joel was perfectly content. He could wander around freely. He’d chase the geese, throw stones into the pond, watch the clouds, be mesmerized by wind blowing through the trees. He was totally, 100% present to his surroundings. Me? I’d be going through my mental list—groceries needed, dinner to be made, how many piles of laundry were waiting in the basement, the friends I’d like to be meeting for lunch, etc. I hardly saw my surroundings! Gradually, though, over the sheer number of repeated days at the park, I came to see the beauty in Joel’s way of being. He was living in God’s time—Kairos—while I was living on clock time—Chronos. Kairos started looking more and more appealing to me. So I began to relax, to let myself experience walnut leaves fluttering to the ground, to see clouds breaking up and re-forming before my eyes. I am a student of meditation, and have been since before Joel was born. Suddenly, I realized that I could meditate as I walked through the park, with my eyes wide open! Blood pressure drops, breathing slows, muscles relax, and the peace of God envelopes you. Truly amazing!
5. Autism impacts the entire family system. We learn a little about Joel’s two brothers in the book, but not a lot. Can you tell us about their relationship with Joel today?
I studied disability’s effect on the family system in grad school, and I learned that siblings of children with disabilities definitely get the short end of the stick in a lot of ways. A friend of mine calls them “second bananas.” So often, the child with a disability gets the lion’s share of the attention. We sought out some family counseling when the boys were young, because it was obvious by one son’s acting-out behavior, and the other’s withdrawal, that something needed to be done. The counseling was very effective. It’s amazing how powerful it is to get pent-up feelings out into the light of day, especially when you have a nonjudgmental listener to referee the sessions. The other side of the coin is that sibs of children with disabilities often express a great deal of pride in their disabled brother’s or sister’s accomplishments, because they realize the challenges they have overcome every single day. These sibs develop an ability to look past a person’s outer wrappings to discover and admire the person within. When Justin was 9 or 10 he said, “I think God gave Joel to us because he knew we would take extra good care of him.” That was pretty sophisticated theological reasoning for a 10 year old! I think both of my guys are better people for having grown up with Joel. I think they are more compassionate, thoughtful men. My middle son, Justin, and his wife Elizabeth, often spend the night with Joel when my husband Wally and I go out of town. They enjoy taking him to the park or to the zoo, getting pizza and watching a movie. Joel adores Elizabeth. He’s constantly saying “Elizabeth’s my sister!” Joel’s always been a sucker for a good-looking woman! We’re thankful to have our son Matt back home. He’d been out on the west coast for the past 7 years, so having him nearby again is fantastic. Joel enjoys hanging out with Matt and his dogs—they go for hikes in the woods behind our house.
6. You end the book with a chapter entitled “Letting Go,” which is something all parents of children with autism will have to do sooner or later. You write, “There is a world out there for him to explore, people to meet, experiences to enjoy.” How is this process going?
We’ve found what we believe is the perfect place for Joel to live. It’s a community of choice for adults with autism, called Safe Haven Farms (www.safehavenfarms.org) , and it’s located on a gorgeous 68 acre horse farm just 45 minutes from our home. It’s a brand-new community, and my husband and I got in on the ground floor of the planning stages. Wally’s on the board, and we’re both on the parent’s committee. There will be four houses to begin with, with four people each—everyone has their own bedroom and bath, with a big common area and kitchen in the middle of each house. The “farmers” will grow their own fruits and vegetables, which they will eat as well as sell at local farmer’s markets. They will grow flowers for sale and for craft items, as well. There will be all sorts of animals, including horses, and a therapeutic horse-back riding program. The residents will help care for the animals and the grounds. There will also be a day-habilitation building with a therapeutic arts program, a learning center, a sensory room, and a community room. Eventually, we hope to have an indoor pool as well.
As excited as we are about the opportunities at Safe Haven Farms for Joel, it’s a roller-coaster of emotions, thinking of letting him go. As you know, raising a child with autism is an intense experience. Joel’s leaving is going to rip a hole in the fabric of our lives! But we believe that this is the right thing for Joel, and the right thing for us. Wally and I have always had a dream of running a retreat center. We recently found the perfect place—a mini-farm not far from Safe Haven Farms. We purchased the property last year, and are in the process of renovating, dreaming, and planning. We keep telling ourselves that we will see Joel every week—that we will have him home for regular overnights—we will take him to church—we will go on outings with him. It’s not like we’ll never see him again! But we still tend to get teary-eyed every time we sit down to talk about his leaving. It’s going to be hard!
To order your copy of AUTISM AND ALLELUIAS, go to Kathy's website
To order your copy of AUTISM AND ALLELUIAS, go to Kathy's website
Kathy is doing a webinar on Thursday, April 8th, at 2:00 PM EDT. Join her; Rev. Bill Gaventa, editor of the Journal of Religion, Disability & Health; and Ginny Thornburgh, program director of the Interfaith Initiative, American Association of People with Disabilities for this presentation on autism and disability ministries. The panelists will address:
• The gifts children and adults with disabilities bring to our church communities
• The transformation that can take place when we open our hearts, minds and doors to those who live with disability
• The steps we can take to become more welcoming to people with disabilities and their families