Autism and Alleluias
An Interview with Kathleen Bolduc
By Christine Field
I came to parenting with visions of all the wonderful things I was going to teach my children. The greatest surprise is all I have learned as a mother.
I expect Kathleen Bolduc shares this sentiment. This mother of a son with autism shares what she has learned about God’s unconditional love in her newest book, Autism & Alleluias (Valley Forge, PA, Judson Press, 2010).
TOS: Welcome, Kathleen. At what point in your parenting did you realize that God was going to teach you some powerful lessons?
KATHLEEN: I think I knew the very first moment I held my firstborn son in my arms. He opened his eyes and looked at me with this age-old expression that said, “I know you.” That could only be God, communicating through a newborn. I remember being aware, when all three of my sons were babies, of the miracle of daily life. Of course, that was on days when we’d all had plenty of sleep the night before!
TOS: You have three sons. Tells us their birth order, and tell us when you first discovered Joel was on the autism spectrum.
KATHLEEN: Matthew is the oldest—he was born in 1977. Justin is our second son, born in 1979. Joel was born in 1985, when Matt was in third grade and Justin was in kindergarten. Believe it or not, we didn’t obtain a diagnosis for autism until Joel was 12! Joel’s first diagnosis was hypotonia, which is low muscle tone. He was a very floppy baby and was slow to hit all of the physical milestones—rolling over, sitting up, crawling, walking, etc.
He was an extremely sociable baby—bright-eyed and engaged with people. It wasn’t until he was 2 that behavior began to be an issue. He had virtually no attention span, became upset very easily if his routine was disrupted, began to pull people’s hair if they got into his space, etc. His language and play skills were delayed. When Joel was 3, we decided to enroll him in a multi-handicapped preschool. Not that I thought he was “handicapped” (that was the word that was used in the 80s). I was sure he was just “behind” in his development.
He had to be tested to enter the preschool. The psychologist sent his report in the mail. I opened it to read the words “moderate mental retardation.” You know what I did? I folded that report up and stuck it in a drawer! There was no way, in my mind, that Joel had mental retardation. It wasn’t until Joel was 5 that we obtained a multi-factored evaluation from Cincinnati Children’s Hospital. And yes, Joel had moderate mental retardation as well as PDDNOS—Pervasive Developmental Disorder Not Otherwise Specified. That’s when the grieving really hit, for both my husband, Wally, and me. I think we were stuck in denial for so long because Joel was so beautiful and so sociable. It was the behavior and attention span that were the issues. When Joel was 12 we obtained that diagnosis of autism, after he was expelled from school for aggressive behavior.
TOS: In a family that has a child with a disability, sometimes the other children suffer. How have you dealt with this?
KATHLEEN: 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.” The child with a disability often gets the lion’s share of the attention. For my master’s degree, I studied disability’s effect on the family system, and I realized that many of the issues we were facing in our family were common to all families who live with disability. One of our boys began acting out; the other withdrew.
It didn’t take us long to figure out that we needed to get some family counseling. That was extremely helpful! The counselor’s office was a safe space for everyone to talk about his or her feelings. In one session, one of our boys said, “I’m tired of the way you treat Joel like royalty!” Ouch! He was right! Joel basically got what he wanted most of the time, because we wanted to minimize tantrums! It’s funny how once something is verbalized and brought out into the open, it changes everything. We began requiring more of Joel. We started splitting up once in a while—Wally or I would take Matt and Justin out to do something, while the other parent would stay home with Joel. We made sure Matt and Justin had some one-on-one time with each of us.
Siblings of children with disabilities often express a great deal of pride in their disabled brother’s or sister’s accomplishments, because they become aware of the challenges they have to 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.” I think both of my guys are better people for having grown up with Joel. I think they are more compassionate, thoughtful men.
TOS: Your book has been described as a book of modern-day psalms. Talk to us about how the Psalms came to have such meaning for you.
KATHLEEN: I was so honored by that expression—modern-day psalms—in the foreword of Autism & Alleluias! The Psalms were the place I went most often when I was grieving, and I found my feelings mirrored so often in this book of the Bible. It was as if God was giving me permission to feel depressed or angry. And you can read a Psalm in just a few minutes. When you’re caring for a kid with a two-second attention span, that’s important! And still one other thing I love about the Psalms is that every one of them contains at least one powerful verse that I can focus on for encouragement, and I like to repeat that verse throughout the day. Here are a few examples: “Hear my prayer, O Lord,” and “Praise God in his sanctuary!” and “Be still and know that I am God.” Meditating on God’s Word is an amazingly effective way to deal with anxiety and fear.
TOS: Sometimes parents can get all caught up in their dreams and expectations for their children. What have you learned about this?
KATHLEEN: As parents, we have to learn to let go of our dreams and expectations for our children. It’s just a little more intensive when you have a child with a disability. We all have dreams, but our kids don’t always turn out the way we expected. Some children hate sports. Some refuse to practice the piano. Some never get married or choose not to have children. Some get caught up in drugs and alcohol. All of our children stretch us in ways we never expected when we were waiting for them.
Everything I valued in my life before Joel’s birth had to be re-thought and re-valued—the value of intelligence, efficiency, logic, self-control. The old rules no longer applied. My spirit, which craves peace, order, comfort, and security, withered as I struggled to make sense of the seemingly senseless . . . a beautiful boy with a damaged brain.
But the life-giving waters began to flow as I caught fleeting glimpses of reasons to rejoice in the midst of it all: Joel’s infectious grin, his silly jokes, his compassion for people who were hurting, his spontaneity, and his unconditional love.
I had long struggled to fit prayer and meditation into my busy daily routine. Suddenly it was no longer a struggle. I simply made the time, because the waters that welled up in the silence filled all my empty places to overflowing. I couldn’t do without it! Joel has blessed me beyond my wildest imaginings! My life would not be nearly as rich today if Joel had not been a part of my life for the past twenty-five years, disability and all.
TOS: You have discerned that your son has a heightened spiritual awareness, as have the parents of many children with disabilities. What do you attribute this to? Do you think God knew some kids would need a direct line to Him?
KATHLEEN: Joel definitely has heightened spiritual awareness. He loves to worship, often with abandon, flinging his arms into the air—he’s even been known to get out in the aisle and boogey! He often initiates praying for people that he knows are sick or hurting. He sits up and pays attention in church whenever the sermon is about the Holy Spirit! Why is this the case? It may be because he doesn’t have all of the regular cognitive stuff in the way—he isn’t analyzing or trying to prove God exists or critiquing the sermon. He’s just there, totally in the moment, wide open to whatever might happen. When you live your life like that, you’re going to have an experience of God! Joel has a lot to teach us in how to live in the moment.
TOS: You recount so many instances of times when God met you in your meltdowns. Can you speak a word of encouragement to our readers who might be in similar situations?
KATHLEEN: Gee, Christine, did you have to bring up those meltdowns? I’m not proud of my meltdowns, a few of which I write about in Autism & Alleluias. 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 quite a combustible situation! The funny thing is, every single time I reached the end of my rope—every time I said: “God, I’ve had it. I can’t do this any more. 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. 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, anxiety tends to be an issue) I remember and recall those situations when God intervened.
TOS: I loved your story about the Lakota Sioux, in which you tell how the Sioux would have considered your son a gift from God because he was sent to teach you compassion. Has that been your experience?
KATHLEEN: Joel has been one of the most important and influential spiritual teachers of my life. I don’t believe that God causes disability in order to teach us compassion or to bring us closer to God. However, I do believe that God walks through disability with us—I believe He draws very close to us as we walk this road. I believe that all things work for good for those who love God. I believe that God’s power is made perfect in our weakness. Because of Joel, because of autism, because of the road I have walked these past twenty-five years, I have come to know God on a first-name basis. I have learned to depend on Him for everything and to trust that He is working through every situation in my life as well as in Joel’s life and the life of my family as a whole.
TOS: If you could send a message to “the public” about how they sometimes react to your son’s exterior behavior, what would you say?
KATHLEEN: I would say: “Get out of your comfort zone and make friends with someone with a disability. You will be pleasantly surprised by the gifts they have to bring to your life.”
TOS: Thank you so much for sharing with us. To quote Joel, “Woo hoo!”
KATHLEEN: Don’t you just love that “Woo hoo!” Thanks, Christine. This has been fun!
Kathleen Deyer Bolduc is a nationally recognized author and speaker in the field of inclusion ministry. The mother of a young adult son with autism, she has shared her inspiring story in Autism & Alleluias, His Name is Joel: Searching for God in a Son’s Disability, and A Place Called Acceptance: Ministry with Families of Children with Disabilities. You can find her at http://www.kathleenbolduc.com.
Copyright 2010. Originally appeared in The Old Schoolhouse Magazine®, Summer 2010. Used with permission.