A ‘Delightfully Different’ Daughter
Wednesday - June 22, 2011
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Del.icio.usSue Kam knows what it’s like to have a child who marches to a mental beat not in sync with most others. Her daughter has Asperger syndrome, which is a type of high-functioning autism. Her daughter is smart, musically talented and has a good heart. The other things that set her apart make her different, but in a good way. And that is why Kam, who writes under the pseudonym D.S. Walker, titled her book Delightfully Different.
Delightfully Different is a work of fiction that has its roots in the real life struggles of Kam’s family to understand and deal with a child who is not like other kids. Her daughter wasn’t diagnosed until she was in the fifth grade.
“Major guilt,” says Kam. “Why didn’t either one of us figure this out?”
Part of the reason, she says, was that both she, a registered nurse, and her physician husband Jeffrey graduated in the ‘80s. They were taught about autism, which at the time was seen as a very severe disorder.
“We learned nothing about Asperger’s at all. In fact, it wasn’t even recognized as a diagnosis until 1994.”
Kam says once her daughter was diagnosed everything fell into place - her daughter’s sensory issues, her difficulties with transitions, her sleep issues, her social awkwardness.
Perhaps the book’s greatest value is the way it tries to illustrate the world as experienced by a person with Asperger’s. Here’s an excerpt from Delightfully Different told from the daughter Mia’s point of view:
“Mom was grumpy all the time. She thought I was being a brat when I refused to wear some of the clothes that she bought for me, but some felt like sandpaper rubbing against my skin and others made me itch. I was also very particular about which foods I ate. Some foods made me cringe at the thought of them. I really couldn’t help it! Smells also bothered me; for instance, the smell of bleach burned my nose, made me cry and gave me a headache. I guess it was like Mom felt when she had to cut up an onion. Sometimes, the TV and radio sounded like someone was shouting at me, so I insisted that the volume be turned down.”
Kids with Asperger’s are often quite literal. That means they spend an awful lot of time and energy trying to figure out why people say the things they do. Here’s how the fictional Mia reacts when her mom casually talks about an image “popping into her head” - a figure of speech most of us would instinctively understand:
“I did not understand this. I kept trying to get an image of someone popping out of my head. Did this mean they exploded like a firecracker? I did not think so. I asked Mom, and she smiled for the first time that day.”
Kam didn’t think about writing a book until she discovered that her daughter was being mercilessly bullied in school. She did what she now has learned is not the right way to handle a bully situation: She approached the bully’s mother.
“The one mother who was the head of the group told me she had no problem with what her daughter was doing.”
That, she says, is when she decided, “I’m going to do something. There’s too much intolerance.”
Kam’s goal in writing the book was pretty simple: “Kids being more tolerant, not just of Asperger’s, but in general. I’d like them to see the heart of the person.”
“It’s not the mainstreamers who change our world,” says Kam, “It’s people with differences.”
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