Karen Wang calls her house an autism house. She does have a son who is 13 and autistic, but she’s kind of talking about the décor. "The sofas are in bright mismatched colors," she says. There are two pinball machines in the room, with fitted black fabric covering them right now. "Following the pinball helps with visual tracking," she explains. "Everything has a therapeutic purpose."
Wang and her family do a lot to support and help teach their son at home. They want the same level of dedication from their school, and to find that, they've had to move around the state.
The family has lived in three different school districts. In the first district, Ann Arbor, Wang didn’t think the services her son received were making a difference, mostly because of the way they were delivered. For example, she says he was getting speech therapy, but it was in a small room with no windows which her son just couldn’t handle. So the Wangs took a pass on speech therapy for a while.
Wang says they worried that school would always be like this for her son and says, "It was affecting our physical health, our mental health. We were just so distressed," she said. "And our son was distressed. He was having panic attacks very frequently, getting sick a lot."
The Wangs decided to try to move to another district. They were looking for services, but also for something more illusive, a school culture that felt like people were really invested in her kid and weren’t willing to write anybody off. In Ann Arbor she says, she didn't think she would be able to work with the district. “We felt like we were fighting against a culture of disrespect in our son’s case, and we weren’t going to change that on our own,” she says.
Wang connected with other parents and autistic adults who shared their experience trying to find a district that would work better for her son. The Wang's ended up in Livonia. She says on paper, it looked just like her old district, but the culture was different and she knew this as soon as her husband took his first tour of the school.
“One of the first things I told my husband to look for was the Rifton chairs," says Wang. "In Ann Arbor kids were regularly strapped into Rifton chairs so they couldn’t move their arms or legs or torso. And this school in Livonia didn’t have any Rifton chairs.”
The Ann Arbor school district says these chairs were used appropriately to support students with physical impairments, and they say their school culture is one of providing the right support for students with disabilities.
But the Wang's were much happier in their new school. Wang goes so far as to say that district, "saved her son's life." They have since moved to the Northville school district as their son's needs have changed and think he'll continue to attend school there until graduation.
Dawn Bentley is in charge of special education in Livingston County. The Wang’s have never lived in her district but she does agree with them that when it comes to special education, school culture matters.
"There are school cultures that believe that children with disabilities need to be put somewhere else," she says. But she adds,“The onus is on us, as adults in the system, to own every child with which we are charged.”
Bentley thinks things are moving in the right direction on changing attitudes towards students with disabilities. She says it does require strong leadership from teachers and administrators. She makes a distinction between "skill rather than will." Bentley says when teachers believe, “they can make a difference with every child in their classroom” things will get better.
The state and federal government are offering more help to teachers, and they are also starting to focus more on the education outcomes for kids with disabilities, rather than the focus on compliance with rules and regulations that has marked the first almost 30 years since the Individuals with Disabilities in Education Act was passed.
The focus on education outcomes might change the attitude of schools towards students with disabilities, or make those attitudes matter less.
