Hiding in Plain Sight

August 2007 Special Sections

Susan Thomson’s daughter, Bridget, was two years old when her parents noticed she was having trouble communicating. Bridget could follow directions and understand complex sentences, but she had difficulty expressing what she wanted to say and spoke only in ambiguous fragments. As her mother recalls, “I could say, ‘Where is Daddy?’ and instead of saying ‘upstairs’ or ‘outside,’ Bridget would say ‘He go.’ It was perplexing.”

By the time Bridget was seven, her  verbal skills had improved thanks to year-round private speech lessons and special education services at school, but she was now struggling to read. “Intuitively, I knew that something was just not right, Thomson says. “I knew she needed help.” Two years later, a specialist performed an educational assessment and concluded that Bridget had dyslexia, a learning disability that is marked by difficulty with accurate and fluent word recognition and by poor spelling and decoding abilities.

The Thomsons, whose twelve-year-old son has attention deficit disorder, are certainly not alone in their struggle to help their children navigate their mental health issues and learning disabilities. The Minnesota Children’s Defense Fund Kid Count Data Book estimates that 145,000 Minnesota children have diagnosable mental health issues (anxiety, disruptive, and mood disorders are the most common) and the Minnesota Department of Education estimates that between 3 and 3.5 percent of school-age children in Minnesota have a learning disability.

Given the nature of these disabilities, they’re often overlooked. “Both mental health disabilities and learning disabilities are often regarded as hidden disabilities,” says Virginia Richardson, manager of parent training at Minneapolis-based PACER Center, a national and statewide resource, information, and training center for parents of children with all disabilities. “If you just look at a child sitting in a room with his or her classmates, you wouldn’t instantly identify the child as having a disability.”

Making Sense
Like many parents, the Thomsons found the path to Bridget’s diagnosis long and at times circuitous. “Once Bridget showed improvement in her expressive language, the school system said that she no longer needed special education, but I kept telling them, ‘She is not reading,’” her mother recalls. “It took another two years before she was re-assessed by the school.” But even then the school didn’t discover her dyslexia—a private specialist did. Bridget worked with a tutor from age five to fifteen; when she was fourteen she finally received special reading instruction at school that was customized to her needs

The Thomsons’ experience, while agonizing, is unfortunately not unique. “Many families can go through years of testing before they arrive at an accurate diagnosis,” Richardson says.

Many mental health issues and learning disabilities have overlapping signs and symptoms. Combine this with the rapid physical, emotional, and developmental changes children experience and finding a precise diagnosis can be a challenge.

The warning signs often surface at school. “When a child is troubled in any way, you see changes in the school setting,” says Barry Garfinkel, MD, a child psychiatrist with a private practice in Minneapolis. “Absenteeism, a drop in grades, physical illnesses, and complaints such as headaches and stomachaches have all been attributed to mental health issues and even learning problems.”

Of particular concern to mental health experts is the cascading effect of a problem that remains unaddressed. Left undiagnosed, for instance, even mild learning disabilities can cross over into challenges with emotional and behavioral health.

“Kids can’t understand why they are not learning, but they know they are not doing well,” Richardson says. “The longer a child with a learning disability goes without getting diagnosed, the more likely it is that he or she will spiral into that self-esteem abyss, and then possibly to the emotional and behavioral issues as well.”
Parental Power
Getting help and support for a child takes a team—teachers, social workers, psychiatrists, and physicians—but the task of taking charge and getting results often falls to the child’s parents.

Thomson knew all too well that the burden of addressing Bridget’s challenges rested squarely on her and her husband’s shoulders. She became an instant advocate for her daughter and her right to a fair education.

“As a parent, if you are enthused about learning, you end up identifying ways your child can be supported,” Thomson says. “We wanted to inform and educate those who were teaching Bridget, but we also wanted to avoid leading advocacy from [a place] of arrogance. The key to success for us was to remember that teachers are on the job to help kids.”

While awareness and understanding of mental health issues is spreading, certain stigmas still exist. Not surprisingly, shame and guilt play a role in how quickly some families get help for their children. The foundation for these responses can be inadvertent or intentional and often depend on a host of cultural, religious, and socioeconomic factors.

“Our Westernized health care system is predicated on diagnosis and yet for some cultures there is no translatable word in their language for children who have a mental health disability, so it can be difficult for some kids and families to get the help they need,” says Renelle Nelson, project coordinator for emotional and behavioral disorders at PACER. “Then there’s the family who is blamed for their child’s illness due to poor parenting or not spending enough time with the child—or even on the lifestyle habits they had before their child was born.”

Left unchecked, such reactions come at great cost. “As parents, it might be almost second-nature for us to think that we did something to contribute to our child’s mental health issues,” Garfinkel says. “We have to back off from that feeling of responsibility because it is so unhelpful and those attitudes can actually prevent parents from getting the proper diagnosis or assistance.”

Adds L. Read Sulik, MD, president of the Minnesota Society of Child and Adolescent Psychiatry and medical director of child and adolescent psychiatry at St. Cloud Hospital: “We wouldn’t ever think of standing by and letting our child have difficulty breathing for two years; we’d bring him to a pediatrician or other physician as soon as possible. And yet some parents are hesitant to get their kids the mental health care they need, even when they may have a concrete diagnosis. When you put it in that context, the waiting doesn’t make a lot of sense.”

Support Systems
Schools are often best poised to detect mental health issues, but they haven’t always been the first responders. “I think, historically, schools have viewed themselves as reading, writing and ‘rhythmatic,’ and have neglected the fourth R, relationships. They just don’t see mental health as their domain,” says Char Myklebust, director of social emotional interventions and partnerships with Intermediate District 287. “It must be very frustrating when parents know there is something happening with their child that they are concerned about and they don’t see educators responding.”

Thomson was frustrated at first, but she also realized that while Bridget’s teachers were committed to helping her and had “big hearts and huge determination,” the special education system was overburdened. That motivated her to try to create change for her own daughter’s educational experience. With the assistance of PACER, the Upper Midwest Branch of the International Dyslexia Association, and other organizations, Thomson and her husband first learned all they could about dyslexia, then started using special learning approaches, such as Mind Mapping, the Lindamood-Bell Learning Program, and the Orton-Gillingham method, at home and during private tutoring sessions.

When Bridget entered the seventh grade, her teachers began customizing Bridget’s Individualized Education Program [IEP] in order to meet her particular needs. “When you have a child with a learning disability, you live in a paradigm of honesty and accuracy,” Thomson says. “What is this learning disability about and how can my child learn? What are the effective routes to improving her education? As a parent, you have to learn to communicate knowledge effectively. That comes from a stance of humility and compassion for teaching staff.”

Slowly but surely, awareness is improving in schools. Two-and-a-half years ago, the Minnesota Legislature enacted a state law mandating that teachers receive continuing education in mental health warning signs in order to renew their teaching licenses. “What has happened,” Myklebust says, “is that as public awareness of children’s mental health issues has broadened and as people have become more sensitive and aware of the fact that these are brain-based behaviors and not just willful, naughty behavior or willful, noncompliant behavior, people are developing more compassion. What I am seeing is that once teachers receive the early warning signs training, they get it.”

As more teachers tune into their students’ mental health issues, primary-care physicians, too, are learning more about the warning signs of mental health issues so that they can intervene earlier. Sulik, who is a pediatrician and psychiatrist, serves on the mental health task force of the American Academy of Pediatrics, which is developing a mental health toolkit for pediatricians and primary-care providers.

“Most pediatricians and primary- care providers will be the first to say that they feel ill-prepared to assess, diagnosis, and treat mental health issues in children and adolescents,” Sulik says. “We do a very good job in the health care system of helping teach a parent how to recognize a fever, measure a fever, and seek medical help for a fever. Teaching parents about mental health problems should have the same sort of urgency and importance.”

As Richardson observes, “I continue to ask the question, ‘If we don’t get help for our children, who will?’ The greatest responsibility in parenting is knowing that my child depends on me to get the help she needs. It is something I must never lose sight of.”

Thomson has never lost sight of that responsibility, and she now sees how it has paid off. Today, Bridget is entering her senior year in high school. She gives presentations on cognitive strategies and alternative learning styles and volunteers as a tutor for other children who have dyslexia. Thomson is most proud of Bridget’s acceptance of the fact that she learns differently and her commitment to affecting change for herself and others. She hopes that she has been a positive role model in Bridget’s life.

“As parents, we teach our kids to stand up for themselves by showing them that we are willing to stand up for them first,” Thomson says. “The most important gift I think we can bring to our kids is the gift of self-advocacy.”

Heeding the Signs Tens of thousands of children in Minnesota receive help for mental health issues and learning disabilities each year. Sometimes a teacher, doctor, or parent will recognize behavioral and learning challenges, but in most cases the process of discovery and diagnosis is anything but easy. What follows is a very brief, abbreviated list of some of the many symptoms exhibited by these children and is intended only as a starting point for further discovery and evaluation with mental health professionals and physicians. Infancy (Birth to 1 Year) >> Excessive crying even when needs are met >> Seldom smiles >> Does not like to be held Toddlers (1 to 3 Years) >> Fear of exploring >> Easily overwhelmed by stimuli, overreacts to touch and to sound >> Severe temper tantrums that cannot be redirected Preschool (3 to 5 years) >> Has difficulty playing or taking turns with peers >> Reacts aggressively in response to shared attention, change in schedule, or an unexpected situation >> Intentionally harmful to self or others Elementary School and Adolescence >> Severe mood swings >> Inability to perform academically >> Failure to develop peer relationships, isolation from peers >> Inability to concentrate, poor memory >> Poor organizational skills >> Rapid speech, as if “motor-driven” >> Excessive worrying