Life with a family member who has autism
Family shares struggles, rewards.
Inside a local church, Elizabeth Belanger plopped on the floor three times.
Her 12-year-old brother Nathan was a little confused and embarrassed but was “pretty okay with it.”
When situations like that happen, 9-year-old Margeaux Belanger often feels “kind of weird” and ashamed of 14-year-old Elizabeth.
“But I know she’s my sister and everything,” Margeaux said.
Elizabeth has been diagnosed with autism which is described as a neurological disorder that causes behavior different than societal norms.
Elizabeth’s father Tom Belanger, and her mother Donna Belanger, were told at the time of diagnosis that their daughter wouldn’t have functional speech and couldn’t be toilet trained.
But Elizabeth proved the experts wrong.
“We’re pretty lucky,” Tom said.
Most of the time, the family is able to deal easily with Elizabeth’s unconventional behavior like when she sits down suddenly or mumbles to herself or laughs uncontrollably.
“But I feel bad for her because I don’t want her to do anything wrong,” Nathan explained.
Family members may allow her to stay on the floor for awhile until she gets up herself or allows them to pull her up gently.
Tom said his daughter sometimes acts out when she’s frustrated.
Because people with autism need structure, Elizabeth may behave differently when she’s not comfortable in her environment or is thrown off her routine.
“She may rip someone’s glasses off or bolt from the situation,” Tom said. “But the first thing to remember is that it’s nothing personal.”
Nathan said his sister knows she’s not supposed to hurt people.
Still, because Elizabeth appears different, Tom said she’s under a microscope.
“The last thing we want people to be is scared,” he said. “How can she ever become comfortable in going out and around people if she doesn’t go out?”
Since the children moved to Gothenburg—where Tom is the high school band teacher— from International Falls, MN, last summer, Tom said his daughter is much happier.
“I attribute that to the help she gets at school,” he said.
During a day at Gothenburg Public Schools, Elizabeth spends time with educators trained in dealing with students with autism.
She also interacts with students in the resource room and while doing supervised jobs throughout the school.
“Some schools see a student with autism as a liability,” Tom said. “Here, she’s viewed as a Swede and they’ve developed a strategy for doing everything they can for her.”
At home, the family’s life more or less revolves around Elizabeth.
Because she needs someone with her, the three family members take turns.
Sometimes, other people who Elizabeth is comfortable with come in and help.
Nonetheless, Tom said he wants his other two children to have a life besides watching Elizabeth.
“I work hard to make sure they can be kids,” he said. “I try to reduce direct contact.”
For example, the kids often can play in the yard with friends while Elizabeth is inside.
Nathan and Margeaux said they don’t mind caring for their sister except when friends want them to come over and they can’t.
“I feel sad,” Nathan said.
When his children were born, Tom knew his focus would be on them.
“My children are part of my life now,” he said. “I also have a passion for teaching and enjoy every day.”
Still, he said he misses playing racquetball and swimming like he once did.
For Margeaux, the biggest challenge in living with Elizabeth is when her sister becomes frustrated and runs away.
“She’s fast,” Margeaux said, noting that she wishes people would understand that it’s her sister’s autism that makes her bolt.
Nathan said he’s had a difficult time convincing fellow students that Elizabeth is his sister.
“For quite awhile, they believed she was my cousin, not my sister,” he said.
Tom said people have no idea how much extra
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