I Love Someone With Autism | The Autism News
Rose Arezzini remembers that as early as 4 years old, she served as an advocate for her older brother Karl, who has autism.
One day, Karl accompanied Rose and their mother, Lynn Arezzini, in a women’s locker room so they could change for swimming lessons. A woman looked at Karl, who was 8 at the time, and asked, “Isn’t he a little old to be in here with you?”
Rose didn’t hesitate to stick up for Karl.
“I said, ‘Well, you know, it’s really hard (for) my brother and my mom. She has to take care of him, she has to watch him, she has to bathe him sometimes, and it’s really hard,’” Rose recalls. “Then, I look her right in the eye, and I remember patting her shoulder and saying, ‘Are you allergic to autism?’”
Now 14, Rose is still just as chatty, and has a maturity that reflects growing up with a sibling with a disability.
Sibling rivalry can happen in any family, but Rose and other local children who have brothers and sisters with autism and other disabilities say that while their lives are challenging, their experiences have made them more independent, sensitive people.
Karl, now 18, speaks very little and his life is governed by routine, and so demands a lot of time from his parents. Lynn and David Arezzini have had to make sure he was getting as much out of his education in Greenwich Public Schools as he could, and help him master simple activities, like showering. Rose is understanding.
“I don’t feel like my parents are all focused on him, but I know that has to be one of their main focuses,” she says. “I know I’m a big part of their life, but Karl has to be a little bit before me.”
Rose is obviously close with her older brother. She’s affectionate with Karl, and the two have a strong bond. When Rose was 10, she cracked her skull in a bicycle accident and had ringing in her ears that led to trouble sleeping. Karl, who has strong musical abilities, would come into her room each night and sing her lullabies.
Still, Rose said her older brother can get on her nerves by doing things like constantly imitating their two pet guinea pigs.
“We do get into little fights, but it’s mostly me getting mad at my brother for annoying things like that,” Rose says.
In a similar way to Rose, 19-year-old Harris Davidson said watching out for his younger sister, Sarah, who has autism, caused him to become more mature.
“My parents trusted me to be the big older brother,” said Davidson, now a sophomore at George Washington University in Washington, D.C. “I had to stick up for her and watch out for her when we went to school together.”
Once when Sarah, now 17, was a freshman in high school, she and Davidson were waiting at the bus stop when Sarah had a seizure. As a mother called 911, Davidson had to make sure his sister stayed safe.
“Now that I’ve left home and gone off to college, I can see how it’s prepared me in a way having a sibling with autism wouldn’t have,” Davidson said.
Davidson was 4 years old when his parents discovered Sarah had autism. She still has many childlike qualities, and enjoys cartoons and stuffed animals, he says.
“I remember when I was really little, there was a point ” I wanted a sister who I could talk to and we could do similar things,” Davidson said.
Davidson said his parents did a good job making sure things were equal between the two kids, and he understood when his parents would choose to see a cartoon at the movies because that’s what Sarah likes.
When Stamford resident Devon Lawler, 12, was younger, she had to wake up early in the morning because her sister Amanda needed to go the hospital. Amanda, 14, has tuberous sclerosis, a disorder that causes benign tumors to grow in the brain, heart and kidneys, and often causes seizures. Over the years, when Amanda needs care, her parents have sent Devon and her and 8-year-old brother Ian to stay with relatives and friends.
Devon said it was scary to see her sister having trouble, but she sometimes felt frustrated because her parents had to pay so much attention to Amanda’s needs. Over the years, she’s realized that they also can get overwhelmed.
“It makes me feel like I shouldn’t feel so frustrated, because they have to go through it, too,” Devon said. “And so it makes me feel less stressed about it.”
Lynn Arezzini said she makes sure Rose spends time with “typical” friends. The two went to Greenwich High School’s homecoming earlier this month, but Rose went with her friends and Karl was accompanied by an aide that the school provided.
Not that Rose hasn’t had challenges. She recalls a former friend who went with Rose and Karl to the Cos Cob School May Fair, and said she didn’t want to sit next to Karl on a ride because she was afraid he’d drool on her.
Rose, Davidson and the Lawlers all have something else in common — they’ve all attended a program through Greenwich-based Abilis called Sibshops. Children with siblings who have intellectual disabilities get together for mostly recreational activities, such as arts and crafts, cooking or martial arts classes.
Monica Schlessinger Smyth, who runs the program, said sometimes she encourages kids to talk about an incident with their sibling, but mostly it’s a way to relax and enjoy things with children who know where they’re coming from.
Lynn Arezzini likens it to the Pizza Moms, a group of local mothers of children with autism that she has been meeting with for the past 10 years.
“There’s something about being with a group of people who walk the walk,” Arezzini said. “Even if you don’t talk about the issue, the fact is that you all have that in your life, so you have this common bond. The kids ” should have it too, so that they can relate to each other. They don’t have to explain anything because we already know.”
Experience creates understanding
Life with their siblings have made the children more sensitive of others with special needs.
Rose participates in Hand in Hand, a Greenwich High School club made up of students with and without disabilities. Through the club, she has befriended a girl with Down syndrome.
Rose recently was awarded the Peter Bloomer Citizenship Award, a scholarship given through Abilis that goes to students who show compassion toward other students despite their disabilities.
Devon said she often feels the need to stand up for students with special needs when they’re teased by their classmates. At Stillmeadow Elementary School, she was part of ACCEPT, which stands for All Children Can Enjoy Playing Together, a sports after-school program for kids of all abilities.
But Davidson said even though his college classmates may have been exposed to people with special needs, he has noticed they’re not always attuned to people’s sensitivities.
“At college, it’s interesting how people will throw around words, like ‘That’s so retarded,’” Davidson says. “It stings to hear that, when people don’t realize what they’re saying is hurtful. ” They have no idea I have a sister with autism.”