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ALTERNATIVE MEDICINE
. JANUARY
2007
Lost in Translation
By
Kathy Summers
In Leaves of
Grass Walt Whitman wrote, “I sing the body electric,” and he was
right about one thing: The body’s electrical messages to the
brain—not the brain itself—color our world. But what if your body’s
messages misfire, as they do in children with Sensory Processing
Disorder? Then Mozart might sound monstrous, and a barefoot walk in
the grass could feel like a walk over worms.
Kelsey Ganes got kicked out of preschool at age 2 1/2 because she
wouldn’t finger paint with chocolate pudding. Now 15 and already
taking college classes, she says flunking preschool was a big
relief.
“I knew I was never going to finger paint; it just wasn’t going to
happen,” she explains. But the problem wasn’t just the pudding, it
was the whole school experience. The smelly markers, slimy paste,
and noisy children all sent Kelsey into sensory overload. Running
through sprinklers made her goose bumps hurt and walking through wet
grass made her skin crawl. Until age 4, she couldn’t even enter a
grocery store without having a meltdown. “Between the lights and the
noise and the smells of everything cooking over in the deli—I just
couldn’t do it,” she recalls. “I’d have a tantrum in the middle of
the store, which isn’t such a good thing.”
When Kelsey was a baby, her mother Kristine would cry as she watched
other infants molded to their mothers’ shoulders, cooing. “Kelsey
had to be facing straight out,” she recalls. Later Kristine saw
other children playing at birthday parties, sometimes breaking down
in exhaustion afterwards, but with Kelsey it was different. She’d
freeze up in complete overwhelm right in the middle of the party.
Kristine learned to look for signs that her daughter was about to
melt down and would quickly remove her from the situation.
Well-meaning friends told her she was spoiling Kelsey, that she was
overprotective and hovering. Finally, when Kelsey was seven,
Kristine’s feeling that something was wrong was finally confirmed.
Her daughter was diagnosed with sensory processing disorder (SPD), a
complex brain condition that affects about one in 20 children (and
probably more).
Children with SPD often behave in ways that make them seem like bad
kids, even though they’re not—they’re just wired differently, says
Lucy Jane Miller, PhD, OTR, an occupational therapist, lead SPD
researcher, and author of Sensational Kids: Hope and Help for
Children with Sensory Processing Disorder (Penguin, 2006). “The
information comes in, a response goes out, but the response isn’t
lined up with the information.” Other than this sensory disconnect,
these children are normal and just as intelligent as other children.
Like Kelsey, many are intellectually gifted. No one knows what
causes SPD, but experts suspect birth-related injuries or other
early life traumas.
Making
sense of sensory issues
Everyone experiences some sensory overload, Miller explains. When
you drive home from a hectic day at work in heavy traffic and then
walk in the door to hear your kid’s radio blasting, it’s normal to
want to yell, “Turn that off.”
But for children with SPD, the brain decodes sensory information
differently, so they don’t respond appropriately. They may overreact
to the smell of perfume, the sound of background noise, or the feel
of water with temper tantrums, withdrawals, or anxieties that
interfere with their normal life.
For example, as a baby Danny Shaw cried so hard his whole body
turned red whenever his parents tried to bathe him. When his mother
Mia so much as pressed her cheek against his, the skin turned bright
red. Sudden sounds startled him, and he wanted to nurse continually
for comfort whenever people came to visit.
Some children with SPD under-react, not crying when seriously hurt
or even noticing when someone touches or calls them. They seek out
intense sensory experiences, some of them disruptive or dangerous.
They often get misdiagnosed with attention deficit hyperactivity
disorder (ADHD), although they may actually have both conditions
along with other developmental or learning difficulties.
Still others get lost easily, fall off playground equipment,
overshoot a chair, or have trouble sorting words from background
noise. Some have trouble with everyday movements like opening a car
door and getting in the seat. They appear clumsy and have trouble
learning to crawl, walk, run, or ride a bike.
This may seem like an odd assortment of behaviors, but they all stem
from a single nervous system process, says Brock Eide, MD, who runs
the Eide Neurolearning Clinic in Edmonds, Washington, with his wife,
Fenette Eide, MD. Not every child with these symptoms has SPD. But
if you see a pattern of behaviors that interferes with your child’s
social life and skill development, the sooner you seek an evaluation
the better.
“These children know they’re different,” says Kristine. “When they
see other kids having fun licking the frosting off cupcakes, and it
gives them a gag reflex, they want to know what’s wrong with them
and why they can’t be like everybody else.”
The dangers of
misdiagnoses
If any of this sounds familiar, find a neurologist or qualified
occupational therapist (OT) to either rule out or medically pinpoint
specific problems. OTs can help your child function better in his
daily routines and roles—“occupations” like eating, sleeping,
getting dressed, playing with others, and school work.
Trust your own instincts and, if necessary, seek other opinions.
Because many SPD behaviors overlap with better known disorders like
ADHD, oppositional defiant disorder (ODD), Asperger syndrome, and
others, a great number of children who actually have SPD get
misdiagnosed.
The real danger? Children who get misdiagnosed also get the wrong
treatments. “We’ve seen kids on three or four medications at a
time,” says Fernette Eide. “For years they’ve been given,
unsuccessfully, different types and combinations of medications.”
Adding to the
confusion, the name of the disorder has changed. When occupational
therapist A. Jean Ayers pioneered the study of sensory integration
theory in the mid-1900s, she called the disorder sensory integration
dysfunction (SID). Others called it dysfunction in sensory
integration (DSI). By any name, researchers find the study of the
disorder extremely challenging, which may explain why it isn’t yet
listed in the Diagnostic and Statistical Manual (DSM), the standard
for diagnosing most childhood disorders. One study does show that
sensory-motor conflicts cause long-term sensory symptoms and pain.
But many pediatricians remain skeptical, possibly because the
individualized treatments are difficult to validate and no
pharmaceutical solutions exist.
While researchers seek funding for more studies, parents are just
happy to find treatments that work. Mia, for example, has seen clear
progress with therapy since Danny’s neurological evaluation a year
ago at the Eide Neurolearning Clinic. The Eides quickly ruled out
the previously suspected Asperger syndrome and diagnosed SPD.
“Within two or three sessions, we noticed a huge difference in his
interactions with other children,” says Mia.
Danny’s therapy at the clinic consists of simple activities, such as
working with different textures, throwing bean bags at a target, and
climbing around in a big hammock. At home, Mia learned to redirect
Danny’s destructive energy by asking him to vacuum or carry heavy
bags of groceries. When he has trouble processing sensory
stimulation, Mia holds up her hands and has Danny push against them
with the palms of his hands.
“It’s hard to describe and explain the connection between the
physical activities and Danny’s social and emotional development,
but we can see that it works,” says Mia. Now five years old, Danny
is learning to tone down his overreactions to sounds. Although he’s
still wary of water splashing his face, he’s much more relaxed at
bath time.
Different
treatments for different troubles
Neurological rehabilitation for SPD involves therapies personalized
to how each child processes information. For example, Kelsey’s
occupational therapist used her love of swinging as a tool for
teaching her to respond normally to creamy textures, something many
children with SPD find unbearable. While swinging on her belly,
Kelsey had to slide her hands and feet across shaving cream placed
on a mirror on the floor. With the swing to comfort her, the once
icky substance began to feel okay. At that moment, the therapist
explained, “This is what cream normally feels like.”
Children whose problems include auditory processing do well with a
combination of occupational therapy and listening therapy. The inner
ear acts as a relay station for sensory input to the brain, so
listening therapy helps the child perceive information from all the
senses.
Others need vision therapy. In the nervous system, all the senses
balance each other out, and sometimes one sense is at the heart of a
problem that affects the others, says Fernette Eide.
For other children, getting to the root of the problem might call
for speech or physical therapy, but the ultimate goal is the same. A
family-centered team approach works best, says Miller.
Coping
strategies
Children also need to play and participate in outside activities
that help develop their nervous system. But children with SPD rarely
feel at home in any environment or even in their own skins, say the
Eides, authors of The Mislabeled Child: How Understanding Your
Child’s Unique Learning Style Can Open the Door to Success (Hyperion, 2006). The Eides recommend six key steps for helping
children with SPD become more comfortable and functional in their
environment.
1. Make the world more
sensory-friendly.
Create safe zones at home and at school where your child can go when
he feels like he’s heading for a meltdown. At home, identify and
remove triggers that overwhelm your child, such as noise, glare,
obstacles, and unnecessary motion. Eliminate irritating shirt tags
and shoes that pinch. To encourage better sleep, provide sunlight
and exercise during the day and establish a regular bedtime routine.
Give advanced warnings before changing activities and allow time for
transitions.
2. Manage
sensory-seeking behaviors.
If your child bounces off the walls seeking more sensory input,
provide appropriate bouncing activities such as jumping on a
mini-trampoline or pogo stick. Provide appropriate squeezing
activities like playing with therapy putty and chewing double sticks
of gum. Encourage athletic activities that integrate bouncing and
squeezing movements, such as soccer, gymnastics, martial arts, and
swimming. The rhythmic nature of these activities allows the
sensory-seeking child to anticipate the movements she makes and
receives, so she can prepare and plan better.
3. Manage
sensory-avoidant behaviors.
If your child overacts to sensory input, provide a daily plan of
controlled sensation called a “sensory diet.” The plan, which should
be monitored by a trained therapist, may include desensitizing the
skin by firmly brushing it with a soft plastic brush. Gentle rocking
in a hammock, swing, or rocking chair can help calm the child and
improve her sense of body position. The sensory systems are highly
linked, so improving sensitivities to touch often improves other
sensitivities.
4. Improve
whole-body balance and movement.
If your child has trouble processing feedback from his muscles,
provide activities that improve body tone, posture, and balance,
such as standing on a balance board; playing move-and-freeze games;
and doing reverse sit-ups (arching head and feet up while lying on
the stomach). Skills gained from activities like these help protect
your child when he plays hard or falls.
5. Improve
fine-motor function.
If your child has poor fine motor coordination (called dyspraxia),
provide activities that strengthen fingers and allow deep finger
pressure, such as tearing folded paper, stretching rubber bands over
a pegboard, and playing with building sets.
6. Improve
emotional regulation.
If your child has trouble adjusting to different environments and
sensory stimuli, provide activities that help her prepare more
effectively for transitions and new activities. Suggest basic
self-calming activities, such as yoga breathing and meditation.
Watch carefully for signs of overloading.
In Sync
Any child with significant SPD has a long, long way to go, says
Brock Eide. Single digit years are the worst. In adolescence and
adulthood, challenges come and go in cycles worsening around growth
spurts, illnesses, and stressful events. You can also expect good
times and unexpected benefits. For one thing, families that share
the challenges of SPD often form stronger bonds.
“I’ve met some really amazing people throughout all of this,” says
Kelsey. “And I’m really close to my friends. When you can explain
something like this to your friends and they’ll back you up, it’s
just great.” Kelsey also jokes that her mom is really her best
friend. “It sounds horribly lame and completely dorky to say my mom
is my best friend, but from the time I was a tiny child she
understood me when nobody else did. And that’s really cool.”
SIDEBARS:
A Sense of Play
Most children are out of sync some of the time, so they know how it
feels to be out of tune, out of place, out of control, or out of it
altogether, says Carol Stock Kranowitz, author of The Out-of-Sync
Child Has Fun: Activities for Kids with Sensory Processing Disorder
(Perigee 2006). But children with SPD are out of sync most of the
time. Keeping SPD children safe is critical, she says, but so is
getting them away from the TV to play. Depending on your child’s
particular sensory issues, the following SAFE (sensory-motor,
appropriate, fun, and easy) activities may help.
Pretzel People
Together with your child, prepare pretzel dough using your favorite
recipe or a gluten-free, casein-free mix. When the dough is ready,
have fun forming pretzel people. “When our boys were small and
out-of-sorts, making pretzel people was a sure way to get them back
in sync,” says Kranowitz. It doesn’t matter which recipe you use,
she explains, what matters is the sensory pleasures of kneading and
forming the dough, inhaling the aroma, and breaking bread together.
• Benefits:
Promotes fine motor
skills, tactile discrimination, and awareness of body position.
Flashlight Tag
Ask your child to lie face up on the floor or bed. As you move the
flashlight slowly across the wall, ask her to follow the light with
her eyes and then her finger, elbow, knee, foot, tongue, or nose.
Shine it on the floor so she can jump on it with both feet. Have her
hold her own flashlight in both hands and make patterns or play
follow the leader with your light. Add more challenges when your
child is ready.
• Benefits:
Strengthens visual-motor integration, eye-hand coordination,
directionality, grading of movement, communication, and relatedness.
Musical Hoops
Arrange hula hoops on the floor in a circle, one hoop per person.
When the music plays, have four or more children go from hoop to
hoop around the circle. When the music stops, every child finds a
hoop to stand in. To increase the challenge, have children jump from
hoop to hoop, forward or backward.
• Benefits:
Improves auditory
discrimination, balance, motor planning, directionality, grading of
movement, and visual-spatial discrimination.
Smash and Smell
Together with your child, pick flowers or herbs from your garden and
arrange them on white paper. Place another piece of paper on top.
Help your child gently but firmly hit the top paper with a mallet or
press it with a rolling pin so the juices stain the papers. Your
child can remove the top paper, pick out the petals, and smell the
floral scent of the crushed blossoms on her fingers.
• Benefits:
Stimulates the
olfactory sense, tactile discrimination, fine motor skills, eye-hand
coordination, and grading of movement.
Getting Kids to Eat
Children with SPD are typically picky eaters who eat nothing but
junk food. There are chemical reasons for this that have to do with
a stressed out sensory system, explains Kelly Dorfman, MS, a
nutritionist in North Potomac, Maryland. Our sensory systems also
tell us when to eat, but their systems are malfunctioning, so no
amount of advice to “only offer healthy food until they eat it” will
work. They’d starve, she says, because their brains just aren’t
getting the message. She offers the following structured plan for
better nutrition, with the added benefit of helping children respond
better to therapy.
Rule out potential physical problems.
Eating involves every sense, so you have no way of really knowing
why your child is picky about certain foods. He may refuse a banana
because of the texture, or simply because it’s yellow. Before trying
to change his eating habits, make sure his sensory issues don’t
include an oral-motor problem that affects his ability to chew.
Close the nutrient gaps.
Topping the list of nervous system essentials is a multiple vitamin
that contains adequate B vitamins, vitamin E, and the minerals zinc
and magnesium. Essential fatty acids are equally important for brain
health. And digestive enzymes may help because children with SPD
often have undiagnosed stomach problems. Talk with a qualified
health practitioner for specific requirements.
Create a structured plan.
Choose one nutritious food to introduce that has similar qualities
to a food your child already enjoys. If he only eats crackers, for
example, he’s probably low on protein, so try another crunchy food,
like chicken taquitos.
Make a chart.
Give the plan a two-week time limit and break it down into little
skills your child can accomplish. The goal might be to eat one bite
or four bites or just to offer the food on the plate for 14 days.
Start where your child is and offer a reward for the tiniest
accomplishment.
Stay calm.
If you can stay calm when your child melts down, you are almost
guaranteed to make progress.
Sensory Resources
The KID Foundation
Greenwood Village, CO
303.794.1182
kidfoundation.org
Eide Neurolearning Clinic
Edmonds, WA
425.742.2218
neurolearning.com
Occupational Therapy Associates
Watertown, MA
617.923.4410
otawatertown.com
Pediatric Therapy Network
Torrance, CA
310.328.0276
pediatrictherapy.com
--Kathy Summers is a
health, fitness and nutrition writer in Cave Cree, AZ.
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