Playdates, parties, meals at kid-friendly restaurants are the types of activities you'd expect to fill the days of a typical 3-year-old boy. But that's not the case for Charlie Phelps of Raleigh, North Carolina.
"We usually avoid restaurants," says Charlie's mother, Katie Phelps. "I don't do playdates because he could pitch a fit -- it's not unusual for him to throw himself into walls -- or wander off by himself. I don't want something to go wrong and for people to start seeing him in a different light."
She is thinking specifically of a Christmas party that ended in tears -- both Charlie's and hers. Her son, then 2, couldn't keep his eyes off the Polar Express train chugging around a miniature track. He had no interest in decorating cookies, playing with other kids, or doing anything that involved leaving the train. After about an hour, Phelps thought that stopping the train might encourage Charlie to join the party.
"All hell broke loose," she remembers. Charlie screamed with an intensity that most kids save for shots at the doctor's. Phelps tried explaining that the train was tired and needed a nap. She tried distracting her distraught son by telling him about the other fun activities. She took him outside, hoping the cool air would help. When Phelps was out of options and Charlie couldn't settle down, she decided it was time to leave. "He screamed and kicked like a bucking bull all the way home," remembers Phelps. He was still crying as she carried him into the house, but he managed to look up at her and say, "Mommy, you rock baby," referring to a calming ritual she'd created. Phelps brought her son to the recliner, held him tight and whispered "Rock, baby" in his ear repeatedly as they settled into the comforting motion of the chair.
"We did that for 45 minutes, and then he put his hand on my face and said, 'I so sorry, Mommy,' " says Phelps. "I put him to bed, went to the front porch, and bawled my eyes out."
Of course, every mom of a toddler could tell similar tales, but for Phelps this particular story is not an isolated incident. Charlie has these kinds of outbursts often: when the wheel he's watching on the grocery store cart comes to a stop, when another child gets near the toy he's playing with, or when Phelps tries to trim his fingernails or take him for a haircut.
Though frustrated by his behavior, Phelps hadn't wanted to make too much of it. "We just thought he was a difficult 2-year-old," she says. Friends and family seemed to shrug off these behaviors too, with comments like, "He is such a boy." But some of Phelps's relatives quietly questioned whether Charlie might have autism, and when he went to preschool, his teacher immediately noticed how strongly he objected when he was asked to transition from one activity to another. She suggested Charlie be observed by the county's early-childhood-education intervention services so that she could learn ways to help him. This led to a more formalized evaluation to test for suspected language delays.
As it turns out, Charlie was not diagnosed with autism, though he did have a language delay. An occupational therapist determined that his inability to go from one activity to the next and his penchant for ramming into walls was a result of sensory processing disorder (SPD), a condition that is common in children who have autism but also affects a surprising number of young kids who do not. Though recent studies show the condition impacts as many as 5 to 10 percent of kids, the mainstream medical community still has not officially endorsed SPD as a diagnosis -- which means that insurance won't cover therapy for it.
SPD affects the way a child processes messages sent to his brain from any of the five main senses -- sight, hearing, taste, smell, and touch. He might have mild sensory intolerances or he might find it extremely difficult to handle sensory stimulation (such as when he's at a busy grocery store or a loud sports event). Normally, if a child is tapped on the shoulder, his nervous system informs his brain that he received a light touch. For a child with SPD, the message can get misinterpreted and the child may feel that he was hit hard. Or the message may get completely lost, leaving him unaware that he's been touched at all, explains Lucy Jane Miller, Ph.D., founder of STAR Center, an SPD therapy and research facility in Greenwood Village, Colorado. Most kids with SPD are a mixture of both over- and under-sensitive, which explains why inconsistent behavior is a hallmark of the disorder, adds Lindsey Biel, an occupational therapist (OT) in New York City and coauthor of Raising a Sensory Smart Child.
Two lesser-known senses that can be affected by SPD are the vestibular and proprioceptive systems. They detect incoming sensory information, which is then delivered to the brain. Vestibular refers to movement sensations such as swinging or going down a slide. The proprioceptive system provides information to the muscles and joints, like telling the legs to apply more pressure when walking up stairs than when walking on flat ground, for example. If messages from the proprioceptive system get confused in the brain, a child might appear to be excessively clumsy or aggressive because he's not aware of how much force he's applying.
Continuously receiving jumbled messages can be frustrating for a child, and his inexplicable reactions to everyday happenings can be confusing to his parents. His behavior can become even more unpredictable when he's asked to transition from one activity to another, as was the case with Charlie. When a child's nervous system is working so poorly, it can take him a long time to focus and settle into what he's doing, explains Biel. Asking him to turn his attention to something new could be just too much for him.
Every child can have trouble shifting gears sometimes, but it's the number of senses affected and the severity of symptoms that will determine whether a child is considered to have SPD. Much as with autism, these symptoms occur on a spectrum. If a child's sensory needs are intense and persistent, everyday activities that are necessary for social, emotional, and educational growth might be difficult for him. This has repercussions down the line. For example, your child might not like the sensation of Play-Doh in his hands. This may not seem important, but manipulating squishy objects is one way kids develop the muscles and coordination to accomplish skills that will be necessary later, says Dr. Miller. A child who avoids using his hands in these developmental years may later have difficulty holding or maneuvering a pencil.
More than 40 years ago, occupational therapist and neuroscientist A. Jean Ayres, Ph.D., developed therapeutic treatments to address what she called "sensory integration dysfunction." Though the term for the disorder has changed to SPD, the basic principles of Dr. Ayres's therapy are still being used as the foundation for the methods many OTs use to treat SPD.
Treatment consists of carefully designed, multisensory activities that challenge one or more sensory systems simultaneously -- such as swinging while throwing beanbags at a target, which presents both a vestibular and a visual challenge. The goal: to help build neural pathways that can lead to appropriate responses to information that comes into a child's brain through the senses. This is time-consuming and requires frequent repetition, but it's necessary. "Nerves that fire together wire together," explains Biel. "So each time you practice something, you strengthen the neural connections so that it eventually becomes automatic."
Since Charlie began working with an OT, Phelps and her husband have learned to recognize when Charlie needs extra stimulation, often by using the mini trampoline their therapist recommended. "We'll say, 'Okay, it's time to jump!' He holds on to the handle and jumps, and it really calms him." A treatment like "brushing" is another technique used with children who react too strongly to stimuli. A specially trained therapist uses a soft plastic-bristled surgical brush to apply deep pressure to a child's skin and make her feel more relaxed. It's a widely used method but also controversial: There's no scientific evidence to prove its effectiveness.
In the past year, SPD has taken some big hits from the medical community. Last June, the American Academy of Pediatrics (AAP) released an updated policy statement on SPD, saying it should generally not be diagnosed because studies have yet to prove that it's completely separate from other developmental disabilities, such as autism and ADHD. "We can see kids have problems, but are they related to another disorder or are they from their own disorder?" asks pediatrician Larry Desch, M.D., a lead author of the statement and member of the autism subcommittee of the AAP's Council on Children with Disabilities.
Equally problematic for the SPD community was the fact that the disorder was excluded from the new edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-5, being released this month), which is what doctors and therapists use for diagnosis and treatment guidelines. Clinical psychologist Matthew M. Cruger, Ph.D., is among those who believe SPD is not a separate condition. "Parents describe sensory symptoms, which are clearly distressing for the child and the parents. I don't minimize that what they see looks like sensory struggles. But the children I work with often end up being described as having autism or ADHD," says Dr. Cruger, senior director of the Learning and Development Center at the Child Mind Institute, in New York City.
"It's not an obvious diagnosis," says Dr. Miller, who adds that the behavior of a child with SPD can be confused with that of a kid who may have overlapping behaviors and a different diagnosis, such as ADHD. A child who doesn't get enough proprioception will seek ways to stimulate his muscles and joints -- continuously moving, or chewing constantly on non-food items such as straws and pen caps, she says. What's more, roughly 40 percent of the time kids have both SPD and ADHD, found a study by Dr. Miller and her colleagues.
The American Psychiatric Association has not ruled out making note of SPD in a possible online version of the DSM-5, where it, along with other proposed disorders, will be mentioned, says David Shaffer, M.D., former chair of the division of child psychiatry at Columbia University, in New York City. This can encourage further research on the disorder, which will help determine whether to include SPD in the future, says Dr. Shaffer, who was on the committee that determined what was included in the manual. Occupational therapists say that SPD treatment should complement therapy for other issues, potentially making it easier to improve a child's overall behavior and development. "When a child is more sensitive to touch, he may avoid close contact with other kids during free play," explains Rachel Rudman, an occupational therapist in Lawrence, New York, with a specialty in pediatrics. "If that issue is addressed and he begins to participate in group play, he'll also have more opportunities to practice and improve his language skills."
Pediatrician and Parents advisor Ari Brown, M.D., has seen sensory therapy work in her own patients. "There's value in it for kids who are struggling socially and in school," she says. Although she believes "a child doesn't need to have a diagnosis to need help," she also recognizes that this presents a real challenge for families who can't afford to pay out of pocket for occupational therapy sessions that can cost $130 an hour or more. For them, she has this advice: "Your child might qualify for services under a different diagnosis code. For example, kids often have motor problems and OT will be covered for that," explains Dr. Brown. Children can also be treated through the school system; many children receive therapy because they qualify for special-ed services.
As the medical world sorts it out, parents like Lori Kennedy say they don't need a manual to tell them whether SPD is real or whether it can be treated with occupational therapy. Without OT, her 7-year-old son, Davis, might still have problems with his coordination, and a diet consisting of nothing more than Cream of Wheat, Malt-O-Meal, and vanilla ice cream.
When Davis was 6 months old, Kennedy offered him a spoonful of baby food. "He had the most violent reaction," she recalls. She got lots of "picky eater" advice from doctors and therapists, but it wasn't until Kennedy took her then 2-year-old to a pediatric clinic specializing in occupational, speech, and physical therapy that she finally heard something different: Her son's eating issues stemmed from SPD. The diagnosis made sense to Kennedy. "He also wouldn't wear any kind of enclosed shoes, so he wore flip-flops everywhere," says Kennedy, of Austin, Texas. "We took him to the beach in Florida and as soon as we put him on the sand he'd cry hysterically." An OT explained to her that for Davis, the sensation of walking on the sand felt more like walking on broken glass.
During weekly sessions at the clinic and at home, Davis would chew on a rubber straw to help him strengthen the muscles in his jaw and get used to sensations in the back of his mouth. Davis had quick success in most areas; his coordination improved immensely and he mastered the playground obstacle course he?d had no success with before. But progress with food was slow to come. Finally, when Davis was 3, the therapist was able to feed him oatmeal and peanut butter.
He received help because his SPD involved a developmental issue (feeding) that was covered by insurance. His second-grade teacher helped him get services in school, citing Section 504 of the Rehabilitation Act of 1973, which protects kids with disabilities from being discriminated against at school. Davis is excused from class on Friday mornings to attend therapy provided by the school, his desk is near the teacher's desk, he's given extra time to complete tasks, he's allowed to sit on an exercise ball rather than a hard chair, and Velcro is attached to the underside of his desk so he can access it when he feels the need for sensory input. "He's getting everything he needs," says Kennedy. Charlie, on the other hand, only gets therapy nine months out of the year because his school system stops services in the summer. Last year, Charlie's parents borrowed close to $4,000 so their son could continue his therapy. "He's been working so hard," says Phelps. "I didn't want him to lose everything over the summer and have to start all over again when the school year started." Charlie is on target to meet early learning and cognitive goals for his age, but this is the result of a lot of hard work. "If he could rock in his dad's recliner and drink chocolate milk out of a straw all day, he would," Phelps adds. "But he needs to do other things, a little bit at a time. So we're doing everything we can to get him ready before he goes to kindergarten."
A child with SPD regularly exhibits many of these behaviors:
If you're worried about your child, it's best to have a comprehensive evaluation by a multidisciplinary team that includes your child's pediatrician, as well as a psychologist and an occupational therapist who specializes in sensory issues. To find a therapist, go to spdfoundation.net, click on "Find Services," check the box for occupational therapist, and add your state. Those with the "SPDF" icon next to their listing have advanced training in SPD.
Originally published in the May 2013 issue of Parents magazine.
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