A Special-Needs World

Children with special needs are more integrated into our communities than ever before. An exclusive new survey reveals how families of all abilities are navigating this new terrain.
children

Chris O'Shea

My phone session with the sleep consultant started innocently enough, with talk of night wakings and nap schedules. But the conversation took a turn when I mentioned that my 15-month-old, June, hadn't started walking yet. Grilled for specifics, I assured her that, yes, June was now standing on her own... except on grass. The kid just didn't like the feel of it on her skin.

Hearing the grass bit, the consultant pressed harder. Did labels in her clothes set her off? Certain fabrics? Was she cautious? I thought about June crying in toddler gym class as the other kids happily learned their donkey kicks; angrily refusing to wear anything on her feet but her one, soft pair of "fluffy socks"; pushing desperately on her car-seat straps as if they were suffocating her. Was this average weird toddler behavior... or something else?

As I considered the answers, the consultant circled back to those night wakings. "Sleep," she said ominously, "is one of the body's ways of regulating itself." She nudged me to call an occupational therapist. "Look for one who is sensory-integration certified," she said. "Some people think this means something's wrong. But the idea is to address it now." Which sounded to me like something was wrong.

After going down the Google rabbit hole of symptom checklists and dissecting June's every waking moment, I never called the OT. I wanted to believe that she would grow out of this quirky behavior and figured I would wait and see rather than consulting an expert. This was five years ago, back when our closest occupational-therapy center stood at the far edge of my neighborhood. It was small and almost hidden. If any of our friends were clients, I didn't know about it. The business has since tripled in size and moved to a high-traffic corner beside an ice-cream parlor and a kids' yoga studio. Today I understand that an evaluation in and of itself isn't a big deal and that getting therapy in the early years can be monumentally helpful. As it turns out, June was never diagnosed with anything and has simply turned out to be one of those sensitive types (like her mom), who now sleeps quite nicely (unlike her mom).

However, the transformation in my neighborhood reflects a massive sea change in how we view children who are not developing as expected, or, in other words, children who have special needs. From growing numbers of special-needs PTAs, playgrounds, camps, and toys to Pinterest's "Special Needs Blogs" board (3,500 pins and counting) to plotlines of the TV show Parenthood, physical, mental, and behavioral conditions that were once hidden away in specialized schools and doctors' offices are now woven into mainstream society in ways we haven't seen before. The prevalence of parent-reported childhood developmental disabilities jumped 17 percent between 1997 and 2008, according to the Centers for Disease Control and Prevention. This works out to nearly 10 million children. The most recent data show that one in 88 kids has a diagnosis of autism.

Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective

Perhaps the most dramatic shift has come in how often we red-flag and treat disorders not immediately visible. Roughly 20 years ago, as vaccines helped decrease the impact of infectious diseases, doctors began expanding their focus to include developmental, behavioral, and mental health, explains Ken Carlson, M.D., president of the American Academy of Pediatrics Oregon chapter. "I'd argue those have an even bigger impact on a child's ability to be a happy, productive adult," especially now, he adds, when children are exposed to social media, school violence, and drugs at younger ages. Dr. Carlson's office recently hired a full-time behavioral-health consultant so that pediatricians concerned about a young patient's mental well-being can casually walk that family across the hall to better address their needs. For many parents, it's a kinder, less daunting experience than being handed a referral for an office elsewhere or sent to a doctor not connected to their pediatrician.

Now, federal policy makers are catching on, adds Neal M. Horen, Ph.D., child psychologist at Georgetown University Center for Child and Human Development. After decades of directing resources mainly to older kids "on the far end of the continuum, who needed unbelievable amounts of treatment," he says, the federal government has spent the past decade creating evidence-based programs aimed at detecting, treating, and -- in some cases -- preventing disorders in early childhood. This has bolstered the nation's nearly 25-year-old Early Intervention (EI) program, which was designed to identify significant delays in babies and toddlers. EI had often been limited, due to lack of available resources for families. Today, depending on where you live or your family's needs, EI might mean free or subsidized parenting classes, home visits from developmental specialists, and better mental-health training for all pediatricians. Which is why a kindergartner who might once have been described as disruptive, unmotivated, or intensely introverted is more likely to find a clinical explanation for her behavior... and therapy that really helps.

The parenting classes, well-visit screenings, inclusion classrooms, and TV shows paint a picture of a vibrant special-needs world that we all inhabit, whether or not we have a diagnosis. For this section devoted to exploring this world, Parents reached out to doctors, researchers, health-insurance experts -- and, most important, to parents. Teaming up with Quester, a research company in Des Moines, we surveyed nearly 500 moms, roughly divided between those whose kids have special needs and those whose kids are typically developing. To define just which diagnoses fall into that first group, we looked to the Individuals With Disabilities Education Act and settled on conditions that require intervention and accommodations at school -- including ADHD; autism spectrum disorder; developmental delays and disabilities such as Down syndrome; epilepsy; hearing and vision impairment; behavioral/conduct disorders; arthritis and joint problems; and physical disabilities such as cerebral palsy.

In the end, the big picture the survey revealed is that there is no one big picture. Life in this special-needs world is colorful, enlightening, challenging, unfair at times, and a little messy. Just like childhood.

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