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Dennis Tetreau is the principal of the A.S. Matheson Elementary School in Kelowna, British Columbia, Canada. he lives in Kelowna with his wife, Teresa, daughter; Jennifer, 15, and son, Kyle, 13. In August, 1996, Dennis was a speaker at the Canadian Angelman Syndrome Society conference in Calgary, Alberta. The very active Tetreau family enjoys traveling, playing volleyball, reading and exercising together.
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Both Sides of the Coin :
A school principal parents a son with Angelman syndrome
Dennis Tetreau
Thirteen years ago, Kyle was born with all the pomp and pageantry of a first son and second child. A few months later, my wife and I realized something was wrong. Just after Kyle’s second birthday, doctors diagnosed him with severe developmental delay and a seizure disorder. It wasn’t until just before his ninth birthday that he was diagnosed with Angelman syndrome, a rare genetic disorder characterized by profound developmental delays, neurological problems, lack of speech and stilted gait. Although I had been an elementary school teacher and principal for many years, I didn’t have any experience working with children with disabilities. I had no clue as to what my family’s future held.
Changing hats
My thinking moved to a new place with my son’s birth, our subsequent encounters (sometimes battles) with physicians and specialists and our frustrations about not knowing how to help Kyle. Our family learned to deal with the looks and comments of strangers and shared surprising moments of joy over Kyle’s loving personality and slapstick sense of humor.
But when it came time to navigate Kyle’s education, even I found the system perplexing. The school didn’t always understand my priorities and concerns as a parent. As a principal, I tried to draw upon my parental experiences to help my staff understand what other parents were going through. I changed hats so often -- principal, parent, principal, parent -- that I felt as if I were two different people. In reflecting on conflicting roles, I discovered how intensely I felt about inclusive education.
I believe every child has the right to the best education possible and that this can and does occur when children with special needs are integrated with their peers. In inclusive settings, the child with special needs has role models for appropriate behavior and is part of a group of active, learning, playing children. Children without disabilities learn to accept differences in appearance and capabilities.
I first saw this when my daughter, Jennifer, was in an elementary classroom with Kelly, a girl who had cerebral palsy. The children in the class accepted Kelly and included her in their activities. Jennifer talked about her a lot -- not as the girl in the wheelchair, but as a friend. I thought perhaps Jennifer’s attitude had much to do with being KyIe’s sister, but I later found out most of her classmates felt the same way.
Facing a stark reality
When Jennifer started school, I was tremendously excited, proud and a little anxious. I knew she would have lots of friends, fit in with all the other children and learn everything the teachers could teach her.
But when Kyle started school, it was different. I had to face the stark reality that my son was not "typical." I was forced to imagine what other people saw when they looked at Kyle. He was no longer just our cute little blue-eyed boy with blonde curls and a ready smile. At age five, he was three to four years behind his classmates in social, intellectual and motor-skill development. He had no real communication skills except pinching and pulling hair when he was angry or frustrated and laughing and bouncing when he was happy.
I wondered whether Kyle would fit in, make friends or even be able to participate in daily academic activities. I was overwhelmed with a rush of old feelings: Why me? It’s not fair! What can Kyle do? Does he even belong in this "normal" world?
From fear to hope
Eventually, my attitude about Kyle his education changed from fear to hope, but it didn’t happen overnight. First, we began to notice Kyle’s social progress. We discovered that other children sought him out as a playmate. My wife and I learned from his classmates’ parents that Kyle was an everyday topic of conversation at their dinner tables. I slowly realized that the other children had become increasingly accepting of his (and other children’s) differences.
My change in attitude continued with the assistance of Kyle’s teachers. They helped us see that he was making friends and mastering skills like sorting and matching. We began to see how Kyle’s presence contributed in positive ways to the school, and my fears began to subside. Finally, I had to realize that my expectations for Kyle were too low. I had focused almost exclusively on wanting Kyle to fit in and be accepted. Academic skills had barely entered my mind. I remember being elated at one meeting Kyle’s teachers, because it was the first time I saw people expecting something of Kyle beyond "fitting in." Before he entered school, no one had ever asked us what we thought of his potential or what we hoped he would achieve. We were told only that he had profound disabilities and would probably never walk, talk, feed himself or use the toilet independently. Kyle’s teachers helped me focus on the things Kyle could do, and I was able to adopt a hopeful attitude about his education.
The magic of positive feedback
Today, as I watch my school staff work with discouraged or indifferent parents, I continue to see the magic positive feedback can bring. Educators can provide positive feedback in many ways. At my school, we send children home with a daily journal describing their interactions with other children. We also send lots of schoolwork home with the usual stickers and happy faces. We call parents with encouraging news.
My personal experience helped me learn how important that kind of feedback can be. In Kyle’s case, it was his teacher emphasizing his successes that made me understand he did belong in a regular school and that he would have friends and accomplish some academic goals. When Kyle’s’ teachers informed me of his progress, I found myself moving from a sense of anguish to an unexpected feeling of joy.
The staff at my school also helps parents see their children’s progress by videotaping the children in different activities. Parents may not know that their child has made a stride, but they can surely see it on videotape. Kyle’s teachers videotaped him three or four times in kindergarten. It was so easy to see his growth that I have asked his subsequent teachers to do the same
Optimistic outlook
Kyle, now 13, is in seventh grade. his hair is a little darker and the curls are gone, but he still has those bright blue eyes and a ready smile. He has grown so much in his physical capabilities. he walks independently, though balance is still a problem. He can hold a pencil and scribble some pretty attractive "art;" his toilet training is progressing well, and he no longer needs help walking down the stairs.
Socially, Kyle has made incredible progress. He has school friends who come over to play, he has been invited to schoolmates’ birthday parties, and he attends an integrated swim and gym class. Kyle now communicates using photographs, choosing what he wants from a selection of more than 100 photos. Kyle has no speech, but his receptive vocabulary is at the three-to-four-year-old level. He has maintained his wonderful personality and his uproarious sense of humor.
Now, in the intermediate grades, the differences between Kyle and his classmates is widening. I know there are difficult times ahead, but I also know I will be able to deal with them. It helps to look at the old videos of Kyle and see how far he has come. When I do, I realize how great a role his teachers and classmates have played in his growth. I am grateful to the teachers who helped me see my son’s potential and who gave me the chance to be a contributing partner in his education.
I’ve learned that because of their dealings with some professionals, parents of children with disabilities are often painfully aware of their children’s limitations. Many feel helpless and discouraged. They may avoid becoming involved with their child’s education because they fear that the teachers will focus only on their child’s disabilities. But I’ve also learned that when educators make the effort to help parents become more involved, parents set higher and more significant goals for their child’s education. And everyone experiences the joy of success.
Dennis Tetreau
Kelowna, British Columbia
Dennis Tetreau is the principal of the A.S. Matheson Elementary School in Kelowna, British Columbia, Canada. he lives in Kelowna with his wife, Teresa, daughter; Jennifer, 15, and son, Kyle, 13. In August, 1996, Dennis was a speaker at the Canadian Angelman Syndrome Society conference in Calgary, Alberta. The very active Tetreau family enjoys traveling, playing volleyball, reading and exercising together.
Dennis and Kyle can also be found in our Photo Album. Do have a look.
This article appeared in "Fathers Voices," Exceptional Parent magazine, September, 1996. A longer version of this article appeared in The School Administrator (November, 1995). It has been adapted with permission.
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