One Family Pieces Together the Puzzle

August 2009 Sponsored Section

Know this about René Lofgren: If he could have a do-over, it’s highly doubtful he would yank that bow off the little girl’s head. But that was then, more than a dozen years ago in early childhood education classes. René Lofgren did things like that—pulling bows, throwing tantrums, disrupting class.

René now? Not so much. Not nearly so much. In fact, in many ways, René is a typical 17-year-old from a typical middle class Plymouth family—mom and dad, two sisters, two dogs, one cat. The difference? He has the unpredictable extra challenges of bipolar disorder, attention deficit hyperactivity disorder, obsessive-compulsive disorder, and oppositional defiant disorder.

Yet one could spend an hour or a day with René and nothing about his behavior would suggest that anything was amiss. But it has not always been this way.

How the Lofgrens got to this place has been an exercise in trial and error, laughter and tears, frustration, and, ultimately, fulfillment. It has not been easy. Thousands of Minnesota families with loved ones who have mental health and learning disabilities have been on this roller coaster: trying to determine what’s needed—medically, educationally, socially—for their child and then actually accessing help.

“The lack of clarity and understanding of mental health issues contributes to stigmas . . . and those stigmas create enormous barriers in access to care,” says Dr. Read Sulik, assistant commissioner for chemical and mental health services at the Minnesota Department of Human Services. “We need to eradicate the stigma of mental illness. It’s critical that we use a strong word like that. It will take attention and effort, but we’ve got to set that goal.”

EARLY SIGNS

Gabrielle Lofgren, René’s mother and impassioned lifelong advocate, remembers quite clearly when it all started. “When René was around 18 months old,” she says, “we started going to early childhood education classes and I remember asking, ‘Is this normal for a kid to be quite so active and impulsive?’ and they said, ‘Well, it’s too early to tell.’” When René grabbed that bow out of that little girl’s hair, it was not necessarily something to be concerned about, but it was a sign of things to come. At age five, René was held back from kindergarten and diagnosed with ADHD.

“He was doing more impulsive things,” Gabrielle says. “As he got older his behavior became more inappropriate. I remember one time he went across the playground and just hit someone. We tried medication and it wasn’t so simple. I thought, ‘Get René on medications and he’ll be just fine.’ They gave us some Ritalin or something and it was totally terrible.” René had attended early childhood special education, but in kindergarten and first grade he didn’t receive special education services. By second grade, it was obvious he needed more structured support. The school district evaluated René for special education (he qualified under emotional behavioral disorder) and he got an Individualized Education Program (IEP).

René’s behavior, though, was becoming increasingly challenging. “There was a lot of impulsivity, a hard time staying on task and on track, inappropriate language,” Gabrielle recalls. “As we came to understand later, it was a lot of anxiety.”

THE MYTH OF THE BAD KID WITH BAD PARENTS

René remembers those early years. “Kindergarten and first grade were OK,” he says. “Second grade was pretty good because I had two good teachers. Third grade was pretty good because I had a really good teacher. Fourth grade, not so good.” “Fourth grade was the year from hell,” Gabrielle says. René and his fourth-grade teacher didn’t see eye to eye.

“In fourth grade,” Gabrielle recalls, “I remember sitting with the principal and she said, ‘Well, basically I don’t think you’re very good parents.’ That was kind of a revelation for me. I was trying to figure René out and they didn’t want that. They were very punitive.”

“The school had ‘majors’ and ‘minors,’ which were infractions that were mainly given to kids in special ed,” Gabrielle says. “René had 60 in one year. I remember going to these meetings and saying, ‘I understand that you have these for a reason, but how is this helping René to learn?’”

René was kicked out of school several times. His parents didn’t object to consequences but they wondered if there wasn’t a better way to reach their son. His father, Randy, worried about the stigmatizing effect on René. “Guys like René when I was young, they were just thought of as the bad kids,” he says. “They came from a bad family or they were future criminals. Nobody wanted to deal with them.” Luckily, an IEP includes lists of resources for parents and René’s IEP turned out to be the family’s conduit to PACER Center, a Minnesota-based organization that provides information for families of children and young adults with all types of disabilities. The Lofgrens began talking with Renelle Nelson, a PACER staff parent advocate who has worked with them for the last six years.

“I became involved in trying to help everyone see that René has a problem, not that he is a problem,” Nelson says. “I was quite involved with this family because René changed moods rapidly and his school wasn’t able to keep up with it. Their approach seemed to be focused on punishing him rather than trying to figure out why the behaviors were happening.”

Gabrielle is unapologetic about her own relentless pursuit of proper services for René in school. “I don’t care,” she says. “I got over that in fourth grade. At that point I said, ‘I’m here for my son, for my family, not for these people.’. . . At the same time, it was enlightening for me. I had to look and say, ‘You know, René needs to take some responsibility for his behavior.’ I tended to be more protective. So I started to let go.”

TURNING THE CORNER

Fifth grade brought brighter skies for René. Natural, physical maturation might have had something to do with it. More effective help in school certainly did. And perhaps René was beginning to realize some of the onus was on him. The Lofgrens found a psychiatrist who was able to help and they settled on medications that worked. “Since then he’s been doing well,” Gabrielle says. “He’s matured; he’s moved on.” René will be a junior at Wayzata High School this school year, learning alongside classmates in special education as well as regular education classes. His issues are relatively minor—talking out of turn, sometimes arriving late to class—and he is on track to graduate.

“Around seventh grade,” he says, “it was like, ‘Okay, I know what I have. I know what this disorder does. How can I work to fix it?’ Ninth grade was a new beginning. I just want to keep that going through high school. I can be the good kid, the one who doesn’t get in trouble, the one who doesn’t yell and get sent to the office.”

Socially, there have been positive changes. René has made friends easily, though he admits to not always picking the right friends. And it is rare that he feels singled out. Not everyone with a so-called “hidden disability” is so lucky.

Dr. Barry Garfinkel, a child and adolescent psychiatrist who practices in Minneapolis, has years of experience helping children and teens challenged by disabilities that do not always present themselves in ways obvious to the world. “People are less tolerant and less accepting of youth with disabilities,” Garfinkel says. “It’s not just the classmates or the peers. I think that you really have to educate about the subtle ways people are stigmatized in the classroom by adults as well.”

Today, René is busy making plans. He wants to take auto mechanics classes at Hennepin Technical College this year. When he was only three years old, he could identify makes and models of vehicles, so maybe he’ll pursue his aptitude for all things automotive. Or maybe his knack for taking apart and putting back together electronic components will lead him somewhere.

“He’s a bright, articulate kid,” his dad says. “I think he’s going to do well once he gets outside the constraints of school and the prejudices that exist with his particular disability. As he gets a little older and learns what he can and cannot do, I think he’ll do fine.”