Played happily (for a change!) with other kids at the lake. Aug. 1 4:00 pm Instead of throwing and catching the ball, she had fun sitting and lying on it. When she fell off onto the grass, she laughed. The other kids were interested in her ideas, and they all took turns. It’s great to see her playing with others!
Fourth incident: Tossing a beach ball is too great a challenge, due to Vicki’s poor motor skills. However, she enjoys a different challenge: maintaining her balance while sitting on the ball. Every child has an inner drive to resist gravity. Sometimes all the child needs is the right equipment in the right place at the right time! When the other children join her game, Vicki’s self-confidence soars, and she is able to play with them happily.
Paul’s Problems (Proprioceptive Dysfunction)
Paul’s parents prepare this chart as they look for patterns:
Behavior Date Time Circumstances
Walked into a telephone pole and required three stitches. July 9 3:30 pm Leaving ice cream parlor, he was paying attention to his cone, not to where he was going. So exasperating and frustrating!
Picked up Granny’s china figurine; then, smashed it to smithereens when he set it down. Aug. 2 8:00 pm Maybe he was tired after long trip getting to Granny’s, but even when he’s rested he’s clumsy. Granny’s unhappiness worsened the situation. She wasn’t angry at him, just sad; he was inconsolable.
Trying to play catch with a beach ball, he missed it every time. Aug. 4 Noon Paul either lunges at the ball at the wrong time or swats it away. His younger cousins are so mean and say, “Baby! Baby! Don’t you even know how to catch a ball?”
At the restaurant, spilled his milk on the tablecloth and his good clothes. Labor Day 6:30 pm Sometimes Paul can’t seem to man-age getting milk into his mouth. Even though the waitress was a sweetheart, Paul was distraught.
Late for first day of fourth grade because he had a fit buttoning his new shirt. Sept 6 8:30 to 9:30 am First he resisted wearing the shirt, and then buttoned it incorrectly, saying, “They made it wrong. I never do anything right.” He works so hard to do the simplest things.
INTERPRETATION OF PAUL’S PROBLEMS
First incident: Paul bumps into a pole because eating the cone requires his full attention. He really can’t chew and walk at the same time. His mother’s frustration is nothing compared to Paul’s!
Second incident: Paul misjudges the weight of Granny’s figurine. Of course, Granny is upset. It’s hard to understand that poor control over the force he puts into every movement causes his carelessness.
Third incident: It’s about as easy for Paul to catch a beach ball as it is for most of us to capture a butterfly. He has trouble moving through space, coordinating his arms and legs, and anticipating the impact of the ball. No wonder his cousins are “so mean!” They don’t like to play with him because they can’t predict what he will do and how he will do it. They notice his jerky movements and consider him a “jerk.”
Fourth incident: The outing to a restaurant is a disaster. When Paul picks up a glass that feels unfamiliar, the sensations from his muscles can’t tell him how much effort to exert. The glass of milk flies through the air, and Paul, once again, makes a mess.
Fifth incident: Buttoning a stiff shirt is hard for Paul. Normal first-day-of-school anxiety, plus Mother’s urgings to move faster, plus his clumsiness, add up to Paul’s deep despair. Because he moves inefficiently, he has low self-esteem. When he cries, “I never do anything right,” he really believes what he says.
In summary, Paul’s main problem is poor discrimination of proprioceptive, tactile, and vestibular sensations, along with sensory-based motor disorder.
Paul’s Positives
Paul’s parents also record his positive experiences:
Behavior Date Time Circumstances
Pleased to write a brief note to Granny before our trip. July 28 3:30 pm Before starting to write, Paul cracked all his knuckles and squeezed his fingers. Explained, “My hands work better when I do this.” Wrote without breaking the pencil point!
Loved playing Granny’s “Posture Game.” Aug. 4 10:00 am Granny challenged him to walk around with a cookbook on his head longer than she can. Paul “won” and earned a trip to the baseball card shop. She makes him “shape up.” He adores her.
Enjoyed a tug-of-war game on the beach. Aug. 7 Noon We had to play a silly game of tug-of-war with cousins to prove that our family is just as strong as theirs. Paul loved it! Said, “It’s awesome to be on a team.” He’s developing a competitive streak this summer. Astonishing.
Helped wash Ron’s car; then volunteered to wash mine, too. Dec. 28 2:00 pm Paul volunteered to lug buckets of water from the house. He can lift a really heavy weight! Enjoyed helping Ron sponge and dry the car. He said, “I bet you’re glad to have a son like me.” It’s a joy to hear him say that. We need to assign him more chores.
INTERPRETATION OF PETER’S POSITIVES
First incident: Paul is “waking up” his writing muscles when he cracks his knuckles and squeezes his fingers. He needs extra stimulation in his hands to manipulate a pencil. His mother remarks that after this exercise he doesn’t break the pencil point, as usual.
Second incident: Granny’s technique to improve Paul’s posture is therapeutically sound. The weight of the book compresses the muscles in his neck and shoulders and gives him extra sensory information. He stands up straighter, in an adaptive behavior to resist gravity. Granny’s technique is also psychologically sound. She guesses correctly that he will accept her challenge because it is fun and not too demanding. Succeeding boosts his self-esteem, and tomorrow he may try a bigger challenge—like a dictionary!
Third incident: Pulling the rope organizes Paul’s proprioceptive system. He enjoys the tug-of-war because stretching his muscles feels good. He also likes being on a team where everyone is working together and no one can be singled out as the “loser.” Like all children, Paul has the inner drive to use his muscles effectively, but he is not a “self-starter.” He doesn’t know how to engage in activities that benefit his proprioceptive system unless the opportunity is literally put into his hands.
Fourth incident: Paul stretches his muscles vigorously when he hoists water buckets, squeezes the sponge, and towels the car. This activity energizes him, and he’s ready to wash another car. His mother’s plan to give him more chores will help Paul, for every child needs to feel useful.
DIAGNOSING THE PROBLEM
Consider the adage, “When you hear hoofbeats, look for horses, not zebras.” Documenting your child’s responses will help you locate those “horses,” the specific situations causing out-of-sync behavior.
Maybe you can spot the problem clearly. Maybe you can’t. What should you do? Where do you start? You have three choices:
1) You could take the “wait-and-see” approach—but please don’t! It is not advisable to sit back and wait for your out-of-sync child to catch up, if his dysfunction gets in his way every day. Possibly, with time, he will function better—but probably his life will just get harder. Why take a chance, when getting help now may make a tremendous difference in his coping skills?
2) You could improve your child’s “sensory diet.” Joining forces with the teacher, you could develop a home-and-school program that will help your child strengthen his skills. (See Chapter Nine.)
3) You could seek specialist(s) who will either screen your child for possible risk factors or do a full Sensory Processing Disorder evaluation. (Screenings and evaluations are described below.) Ask the pediatrician first for a referral to a specialist. If the doctor resists this idea for some reason, try one of the support systems listed below.
Where to Turn for Support
Everything we can learn about our children’s development makes us better parents and teachers. Whether you are certain or uncertain that your child has SPD, gathering information about his strengths and weaknesses will affect how you educate, discipline, and even regard him.
To get a screening or evalua
tion, start with either of these free resources, available under IDEA 04 (Individuals with Disabilities Education Improvement Act of 2004):
• Your local early intervention program if your child is under age three. The child is eligible for referral and screening but is only eligible for evaluation if the screening indicates that a disability is suspected, and then is only eligible for intervention if he or she meets different state requirements.
• Your local school district if your child is three or older. The child may be eligible for an evaluation and suggestions but must meet state eligibility requirements to receive therapy and other services.
Eligibility varies from state to state. Sometimes, eligibility varies from county to county and even from school to school! Therefore, understanding your locale’s requirements is very important. This information helps parents have realistic expectations and prevents frustration for parents and schools.
Here’s the deal: If your child is eligible, the school is required to provide services. If your child is ineligible, the school is not required to provide services.
A child with a disability is one who meets the criteria for one of thirteen categories including mental retardation, visual, hearing, speech or language impairments, deafness, deaf-blindness, orthopedic, serious emotional disturbance, autism, traumatic brain injury, or specific learning disabilities and who, because of this disability, requires special education and related services.
SPD may also be considered an “Other Health Impairment,” described as “limited strength, vitality or alertness, including a heightened alertness to environmental stimuli that result in limited alertness with respect to the educational environment.” This impairment may be due to several problems (one of which is ADHD) that adversely affect the child’s educational performance.
IDEA 04 states that a school system is not required to (but may) take into consideration whether a child has a severe discrepancy between achievement and intellectual ability. In other words, a child who is, say, strong in math and reading but weak in writing and speaking would probably benefit from therapy. But this child may be ineligible if the school does not consider the difference between his strong and weak skills to be wide enough. Regrettably, the child with SPD, whose academic skills are often out of sync with one another, may fall through the cracks because he is “too smart.”
If ineligible under IDEA 04, the child with SPD may be eligible under Section 504 of the Rehabilitation Act of 1973, the antidiscrimination law. A child is eligible for accommodations (which may include services) when he has a physical or mental impairment that substantially limits one or more major life activities. Major life activities include functions such as caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working.
If the child is ineligible under both IDEA 04 and Section 504, check with these other places:
• Your child’s preschool or early childhood center, which may suggest a few local OTs who are familiar with SI treatment and who work well with children.
• Private, nonprofit mental heath and social service organizations (listed in the telephone directory), which also provide services, often on a sliding scale.
• A multidisciplinary teaching hospital for a full evaluation (“total workup”).
• The Occupational Therapy Department of your local children’s hospital.
• www.SPDFoundation.net, which posts a free, online directory of local OTs and other experts, and www.devdelay.org, which offers a directory for a small fee.
What Is a Screening?
A screening is a quick and simple procedure during which an OT or other qualified examiner checks whether children have acquired specific skills. Often, groups of children are screened at the same time at schools or early childhood centers.
The purpose of a screening is the early identification of children who may have one or more developmental deficiencies: cognitive, physical, speech and language, psychosocial, self-help, or adaptive.
A screening is a short, informal “look-see.” It is neither a test nor an in-depth examination. When it suggests that a child may have a problem, parents are notified and encouraged to have the child fully evaluated.
What Is an Evaluation?
A formal evaluation is a thorough, individualized examination to look at the whole person and measure his or her skills. Depending on the child’s problem, the professional would be an occupational therapist, developmental optometrist (eye doctor), audiologist (specialist in problems related to hearing loss), speech/language pathologist, pediatrician, psychologist, special educator and/or social worker. If the child has severe SPD, a multidisciplinary team composed of several of these professionals would provide a more comprehensive report.
One part of the evaluation is a questionnaire that parents complete, such as a medical, sensory-motor, developmental, or family history (see page 41). Sometimes teachers are asked to fill out questionnaires, too. Your answers will help the OT or other professionals assess your child, as patterns of behavior since birth may confirm clinical observations.
Providing information about your child will help you, too. Indeed, after completing a sensory-motor questionnaire, one mother noted, “We’ve been puzzled by our four-year-old’s cautiousness, language delay, picky eating, and sensitivity to touch, but we never understood the connection. Now the pieces are beginning to fit!”
Another part of the evaluation is the child’s visit with the OT in a hospital, clinic, office, school, or your home. The evaluation is based on standardized tests and structured observations of your child. Depending on how much testing is required, the evaluation will take from one hour to several hours, spread over several days.
The OT considers the “W” questions: What are the child’s strengths and weaknesses? Where, when, how often, and with what intensity do problems occur? What length of time has the child exhibited the problem behavior? What is the age level at which the child performs? What is happening at home or school that may be affecting his ability to function? Who brings out the worst and the best in him? Why, in the OT’s opinion, is the child out of sync?
The crucial question is, “What kind of sensory processing problem is this?” Is it tactile defensiveness? Postural, bilateral, or ocular dysfunction? Poor auditory discrimination? Dr. Ayres and her followers have always insisted on determining the child’s sensory needs, so that treatment can be specific.
After careful consideration, the therapist writes a detailed report and confers with parents to help them interpret the results. (Sometimes a doctor will make the diagnosis, based on the qualified examiner’s report.) Often, the report is informative. If you receive one that is difficult to understand, call the professional back for a better explanation. She wants to help you, not confuse you.
Therapy may not be indicated if a child is simply immature. Abundant sensory-motor experiences over time may be the late bloomer’s best treatment. The professional may suggest activities that you can do as a family at home, or that the child’s teacher can implement at school. These activities are enjoyable for everybody and help all children strengthen their neurological skills.
If, however, a problem is evident, the professional may recommend direct, individual, therapy sessions. If you decide to enroll your child, you will not be obligated to stick with the professional who conducted the evaluation. Finding the right therapist is important, because a good fit between therapist and child will affect your child’s progress.
Who Pays for Treatment?
Although therapy may be clearly indicated for your child, most health insurance policies do not cover the expense. You have a chance of getting coverage if your pediatrician puts into writing that therapy is a medical necessity. However, sensory problems are not always acknowledged as a health problem.
The reason is that Sensory Processing Disorder is not yet included in publications of diagnostic classification systems, such as the Diagnostic and Statistical Manual and the Diagno
stic Classification of Mental Health and Developmental Disorders of Infancy and Early Childhood. When SPD is eventually included, formal recognition of the disorder will support multidisciplinary research and services for children and their families.
Whether or not your child has been identified as being learning disabled, a pronounced problem with educational functioning is sometimes considered to be a sufficient criterion for funding.
If, in addition to SPD, your child has significant medical, physical, and developmental problems, then she is eligible to receive services. If your child is enrolled in a special-education class in a public school, then related services such as occupational therapy, physical therapy, and speech/language therapy are part of the free educational package, if your child qualifies for them.
If a child is eligible under IDEA 2004 or Section 504, the public school district is legally responsible for providing special education and related services and accommodations. If the child is not eligible, parents may still request that teachers and schools provide accommodations for the child, although the teachers and school district are not required to do so.
Otherwise, paying for therapy is up to you.
So—you must weigh the expense versus the benefits.
One benefit is what a therapist offers: her training and expertise, her therapeutic equipment, and her ability to provide experiences that your child can’t get elsewhere. Another, most important, benefit is knowing that you are acting in your child’s best interest. By investing in treatment now, you forestall problems that may later cause greater pain and more expensive therapy.
You will have many decisions to make, but should you get early intervention for your child, you will probably see an enormous change in his behavior, his feelings, his skills, and your family life.
The Out-of-Sync Child Page 21