My son, Jonah, was what parenting experts like to call a "challenging" baby. As a newborn, if he was awake, he was crying. By the time he was 1 month old, he'd developed such a bad case of laryngitis that he screamed without making a sound.
My husband and I gritted our teeth and looked forward to his 3-month birthday, when most babies get over colic. But three months came and went and Jonah's misery continued. Though he no longer cried every waking second, the slightest thing would trigger an outburst. He didn't like the playground, loud noises, or, oddly, being wrapped in a towel after a bath. As he got older, he would have seemingly inexplicable tantrums that rattled me to the core. My 4-year-old daughter had thrown her share of tantrums, but they were nothing like these. He would run through the apartment screaming inconsolably and, on occasion, throw himself against the front door.
By the time Jonah was 17 months old, I was in true despair. My husband and I took little comfort in our doctor's conviction that there was nothing wrong with our son. Living with him was like living with a ticking bomb. We never knew what would set him off, but the explosion was inevitable.
Then, one afternoon, as I sat in a cafe trying to soothe my son, who was falling apart because he was disturbed by the blueberries in his blueberry muffin, a psychologist friend who was with me gave me a serious look. "I think you should have him evaluated for sensory integration dysfunction," she said.
Until then, I'd never heard of DSI (the preferred abbreviation, to distinguish it from SIDS, the acronym for sudden infant death syndrome). But I quickly got a crash course in the subject. According to experts, DSI is a neurological disorder marked by difficulty tolerating, detecting, or processing sensory information. Children with DSI may be overresponsive or underresponsive to sensory messages. And because certain senses provide information about movement, balance, and body position, some kids have motor-planning problems.
Sound lofty and abstract? Bringing it to playground level makes DSI heartbreakingly real. In a quiet corner is the super-sensitive child in an agony of overstimulation. She recoils from new experiences, loud noises, and rigorous games that most young children relish. For her, a hug feels threatening; even the seams in her socks can bother her. Elsewhere, the child with an underreactive system may look like a high-energy bully, touching other children too often and too hard. "Some of these kids are running all over the place or twirling in circles. They sometimes look like they're driven by a motor," says Lucy Jane Miller, Ph.D., an occupational therapist (OT) and executive director of the KID Foundation, a Littleton, CO-based advocacy group for children with sensory integration difficulties. (That's why DSI is often mistaken for attention deficit hyperactivity disorder.) But this whirling dervish isn't having fun -- he's seeking the sensation his underresponsive system craves. Finally, there is the clumsy child. His motor-planning problems, which affect fine- and gross-motor skills, make coloring, climbing, or playing games like Simon Says a challenge.
Identified in the 1960s, DSI is just now attracting attention. "It's becoming a popular diagnosis," observes Lauren Robertson, an OT in New York City who fields daily calls about DSI. Traffic to the Web site for the KID Foundation (www.sinetwork.org) is on the rise.
DSI's leap into the limelight can be attributed in large measure to the 1998 publication of Carol Stock Kranowitz's The Out-of-Sync Child: Recognizing and Coping With Sensory Integration Dysfunction, which has sold 250,000 copies. Concurrently, a small but growing body of research is lending credibility to the diagnosis and shedding light on a hidden disorder that, untreated, can have a lasting impact on a child's life. Imagine how difficult it is to pay attention in school when you can't resist the urge to bump into other children to satisfy your body's drive for sensory input or, conversely, when you're so sensitive that you're aware of the way your chair feels against your body. That's not to overlook the frustration of the child who has trouble using a pencil or cutting out simple shapes with a pair of scissors.
"Kids with DSI have a hard time functioning. Even if they look fine and have superior intelligence, they may be awkward and clumsy, fearful and withdrawn, or hostile and aggressive," says Kranowitz, a former preschool teacher in Bethesda, MD. "We get all our information from the senses, so if any one of them is impaired, it has a domino effect."
While DSI is drawing attention, questions about the condition abound. Dr. Miller is quick to point out that parents of kids with DSI are in no way culpable for their child's sensory problems. But just what causes DSI remains unclear. It's been associated with a traumatic or premature birth; the bright lights and beeping machines in neonatal intensive care units may overwhelm underdeveloped sensory systems, as could painful post-delivery procedures.
But it may also be in the DNA. In many of Dr. Miller's cases that don't involve birth trauma, she has found that one parent experiences sensory sensitivity, suggesting a genetic component. Some believe that unidentified environmental toxins may play a role. The condition's prevalence is similarly murky. Dr. Miller conducted a pilot study of kindergartners in a Colorado public school district and estimated that at least 5% of the kids had significant sensory problems.
DSI can be diagnosed as early as infancy by an occupational therapist with expertise in sensory integration assessment. But most kids with DSI aren't identified until they start having trouble in school, if they get diagnosed at all. "Many doctors aren't aware to look for it, and many preschool teachers don't know about it," says Larry B. Silver, M.D., a child psychiatrist in Rockville, MD, and a former acting director of the National Institute of Mental Health. And neither do parents. They think their baby is colicky or fussy. As the child grows older, he may be described as quirky, difficult, or klutzy.
Even as a baby, Laura Campbell (not her real name) was extremely sensitive to noise. "If I vacuumed or used a blender, she practically jumped out of her skin," remembers her mother, Karen, a New York City art teacher. But she wanted to touch everything -- including strangers' clothing on the subway. Though a bright and physically active child, Laura didn't take her first steps until she was 17 months old and had trouble with fine-motor skills. When Laura's preschool teacher and the school psychologist suggested she be evaluated, Karen finally got an explanation for Laura's behavior: DSI.
With therapy, Laura, now 6, is better able to tolerate loud noises and relate to others. But she's still struggling, and the problem is taking a psychological toll. "She trips over people because she has poor motor planning, and because she doesn't understand physical boundaries, other kids find her intrusive and reject her," says Karen. "It's painful. She has an awareness that there's something not right about the way she does things and her self-esteem is starting to suffer."
As I read The Out-of-Sync Child and worked my way through checklists of symptoms, I was surprised that some of my son's behaviors were, literally, out of the textbook. But I also felt twinges of skepticism. Sure, my son hated being wrapped in a bath towel, but how meaningful was his aversion to terry cloth? My less volatile daughter objects to strong odors that don't seem to bother other people, and I simply chalk it up to an acute sense of smell. And many kids have tantrums or shut down when they're overstimulated.
In fact, most people have some sensory quirks. "But just because I go nuts when my hands are goopy doesn't mean I have DSI. I just stay away from kneading bread. You compensate," explains Kranowitz. Alarms should go off, though, when your child's behavioral tics begin to interfere with daily life. "Sensory integration functioning occurs along a spectrum," explains Dr. Miller. "It's not a disorder or disability until the daily routines of childhood are disrupted. If your child is able to sleep, play with other children, attend school, and be successful, he may have sensory sensitivity, but it's not DSI."
In fact, some doctors question whether DSI can exist in otherwise appropriately developing children. About 10% to 12% of these kids and 30% of kids with developmental disabilities like autism and ADHD have sensory processing problems. Adrian Sandler, M.D., a developmental-behavioral pediatrician in Asheville, NC, who chairs the American Academy of Pediatrics' committee on children with disabilities, agrees that just because a child is overly sensitive or undersensitive does not mean she has DSI: "She is simply unusually bothered by sights, sounds, touch, and so on." And in the absence of another diagnosis like, say, autism, he further argues that sensory processing problems are developmental. "They are likely to improve with time and may not require interventions," he says. In other words, DSI should not be considered a disorder but a behavioral pattern that normally developing children will often outgrow.
This skepticism is in part due to the condition's humble scientific pedigree. A. Jean Ayres, who first described the condition and coined the term, was an OT with a Ph.D. -- not an M.D. Her followers, occupational therapists, began having children swing on swingsets and touch textured objects to help them adjust and cope. They didn't ground their work in the kind of rigorous research that is the bedrock of science. "A lot of research needs to be done to investigate the validity of the approach," says Dr. Miller, who hopes that her work, which receives funding from the National Institutes of Health, will help give DSI the credibility it needs to gain broader acceptance -- and entry into the manuals that doctors refer to when treating a problem.
But in the absence of a formal diagnostic category, a growing number of doctors are recognizing DSI."Sometimes you have to take a leap of faith," says Chris Johnson, M.D., a professor of pediatrics at the University of Texas Health Sciences Center in San Antonio. She often directs her patients to OTs and says their parents usually report an improvement in their child's focus and motor skills.
Linda Paul (not her real name), a mother in New York City whose son, now 4, was so underresponsive to sensation that, as a baby, he would laugh after getting a shot, puts it more bluntly. "Some medical professionals pooh-pooh this diagnosis," she says. "But they don't spend every day with your child and see the treatment play out."
Occupational therapy is the treatment of choice for DSI. The goal: to help children better tolerate ordinary sensations, plan and organize their movements, and regulate their attention and activity levels. It typically takes place in a sensory-enriched gym set up with different kinds of swings for kids who need help processing information about movement, gravity, and balance. Obstacle courses are used to work on motor planning; materials like beans, rugs, and mats of different textures provide various tactile sensations.
The treatment may also involve therapeutic brushing. Using a special type of plastic brush, the OT will apply pressured strokes to a child's arms, back, and legs to help reduce an aversion to touch. This is followed by joint compression, in which the child will jump up and down or push against a wall, or in which the OT will apply gentle pressure to the joints at, say, the elbow or shoulder. "We teach parents how to do this at home," says Barbara Bassin, an OT in Bethesda, MD. The brushing, which takes about two minutes, may initially be done every two hours but quickly winds down to three times a day -- in the morning, afternoon, and evening. It can also help calm a child who is overstimulated or having a meltdown.
Indeed, much of the therapy continues at home. Parents are encouraged to set up a backyard swingset. Obstacle courses can be created with cardboard boxes, milk crates, and tunnels, one of many suggestions in Kranowitz's new book, The Out-of-Sync Child Has Fun: Activities for Kids With Sensory Integration Dysfunction. Slathering a table with shaving cream and encouraging a child to practice "writing" in the foam is great for kids who are overly sensitive to touch, since it introduces them to a new soft texture and sensation.
Laura Campbell and her parents do a lot of what looks like roughhousing. But the pillow fights, the twirling, and the crashing into cushions are intended to heighten Laura's awareness of sensations coming from her joints, muscles, tendons, and ligaments. And the difference is striking. "At the dinner table, she's usually dropping utensils, running around, or sliding under the table," says her mother. "If we do that kind of play before dinner, she can sit at the table for the whole meal."
Drug therapy is used only when the child has another diagnosis that warrants medication. Ritalin, as well as antidepressants, may be prescribed to soothe the central nervous system enough for the child to engage in OT.
But treatment does not offer a cure so much as a way to cope. Working on a problem area like motor planning will strengthen a child's skills and help her devise ways to compensate. But, cautions Dr. Silver, "early intervention is critical." The earlier children start, the more likely they are to adapt -- and the less likely they are to develop the psychological insecurities that plague kids marching to the beat of their own idiosyncratic drummer. It's even possible that early intervention effectively rewires parts of the brain involved in sensory processing, spurring new neural pathways to grow.
Of course, OT is not a proven treatment. And not every child benefits from it. But anecdotal evidence at the very least shows that it can improve the lives of not only the children but also their families. Bassin recalls a child she treated who was so withdrawn that his aunt thought he was being physically abused. The boy pulled away from hugs and hid under tables. After about three months of therapy, Bassin received a phone call from his overjoyed mother, thrilled that her son had danced with her and allowed her to kiss him.
But alternative approaches to DSI such as visual training therapy and diet interventions have little or no scientific validity. "Some of these treatments may even be harmful," warns Dr. Sandler.
My story is, in its own way, dramatic. While I read up on DSI, I stopped thinking of Jonah as a challenging child and started thinking he was a child with a challenge. I began avoiding chaotic situations, like the playground at peak hours. After a bath, I wrapped my son in a receiving blanket instead of a towel, and he snuggled into it. My husband began holding him in a tight hug that Jonah would at first resist, then relax into. And instead of getting exasperated when he threw a tantrum, I redoubled my efforts to soothe him.
In the midst of this, I called Lauren Robertson, an OT based in New York City who also happens to be my neighbor. She gave me books and reassurances that Jonah, whom she knows fairly well, didn't need evaluation for a condition she was certain he didn't have. "He's well related," she explained, noting that he makes eye contact with other people and connects with them. "He's developing normally and reaching age-level milestones. Although he's sensitive to stimuli, he's coping with it enough to make a developmentally appropriate response."
Not long after my husband and I started to be more mindful of Jonah's sensory difficulties, he started to cope better. And as his ability to communicate improved, his behavior changed greatly. Although Jonah is still high-strung at times, he's a loving, happy 3 ?-year-old who after his bath enjoys being wrapped in, of all things, a towel. His sensitivity may have been due to immature neurological development. Or Jonah may have been at risk for DSI, and the steps my husband and I took to soothe his frazzled neurological system may have made a difference. It's nice to think so.
To find a pediatric occupational therapist who is certified to provide sensory integration treatment where you live, contact any of the following groups:
Copyright © 2004. Reprinted with permission from the December/January 2004 issue of Child magazine.
All content here, including advice from doctors and other health professionals, should be considered as opinion only. Always seek the direct advice of your own doctor in connection with any questions or issues you may have regarding your own health or the health of others.