Autism and Alleluias: An Interview with Kathleen Bolduc
- Friday, September 10, 2010
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.
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.
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