Don’t shame: “A big boy like you can open the door all by himself.” He may be big yet have little strength.
Don’t threaten: “If you don’t pick your feet up when you walk, then you’ll ruin your shoes and you won’t get any new ones.” If/then threats backfire.
Don’t talk about your child in demeaning ways in front of him: “This dopey-looking kid is my son. Wake up, Lazybones, and give our new neighbor a high-five!” Such comments aren’t funny to the listener.
Don’t talk about your child in demeaning ways behind his back: “My kid is such a lazy good-for-nothing. I just can’t get him to understand the importance of hard work.” What do you want your boss, relatives, and friends to remember about your child?
Don’t compare, aloud, one child with another: “Your brother rode a two-wheeler when he was six. What’s wrong with you?” (But do note to yourself the abilities your child seems to lack, compared with others of the same age.)
Don’t do for your child what your child can do for himself: “I’ll sharpen your pencils, while you get out your homework.” Pampering a child gets you both nowhere fast.
Don’t expect consistency: “You could hang your coat up yesterday. Why can’t you do it today?” Inconsistency is common in out-of-sync children. What worked yesterday may not work today, and vice versa!
Don’t make your child do things that distress him: “You must put your hand into this paint to make a handprint for Grandpa,” or “You’ll love riding the elevator up the Empire State Building.” You can’t make him enjoy touch or movement experiences until his neurological system is ready.
Don’t overload your child with multisensory experiences: “Let’s eat some chili, put on some steel-band music, and dance the rumba. We’re going to have a terrific south-of-the-border night.” Slow down! Offering your child a variety of sensations, one at a time, is fine; offering her a variety of sensations, all at the same time, will overload her system.
Don’t be afraid of “labeling” your child: Many parents fear the stigma attached to SPD. They don’t want their son or daughter to be labeled as a child with special needs. That fear is normal, but it doesn’t help your child. Consider the identification of SPD as a benefit, for now you know that your child can get help before the problem turns into a serious learning disability.
Don’t feel helpless: The world is full of children with SPD, and people who love them. You and your child are not alone. Support is out there; it awaits you, and you can find it.
Chapter Twelve
LOOKING AT YOUR CHILD IN A NEW LIGHT
A PARENT’S EPIPHANY
A father writes, “When I first heard the words ‘sensory integration’ and ‘low muscle tone’ used in connection with my daughter Julie, I both didn’t know what they meant and also dismissed them as yet another example of my wife’s overprotectiveness. These terms were used by Stanley Greenspan, MD—one of the city’s (and country’s) top child psychiatrists—whom we had consulted on Julie’s sleep problems. Such technical jargon was testimony, in my mind, to the unspoken alliance that surely persisted between high-paid child experts and jittery mothers.
“True, at twelve months, Julie did flop around a little more than I would have expected (she did not yet crawl or stand), and true, she didn’t snuggle as I had hoped. But I chalked it up to her being a little prickly and thought she was fine just as she was. The fact is, I hadn’t seen enough other kids (as my wife and the doctor had) to know that her behavior was out of the ordinary.
“While I was either objecting or standing aside, my wife persisted. She took Julie to an occupational therapist—also well paid and ready to agree with the diagnosis—and put Julie into a twice-a-week course of therapy. I remained skeptical.
“The turning point came when I attended a workshop called ‘Understanding Sensory Integration.’ While the presentation initially had limited impact on me, I was impressed with the number of parents there. ‘So maybe this sensory stuff is for real,’ I thought, ‘and we’re not the only ones who are concerned.’
“More important than the large turnout were the ‘experience’ stations in the back of the room. When I tried to accomplish simple tasks with some of my senses impaired—walking a straight line while looking through the wrong end of a pair of binoculars, for example—it started to penetrate my thick skull that Julie may in fact have entered the world with some special needs, and would have to compete with her peers at an unfair disadvantage as long as she had them.
“Suddenly, the significance of all this dawned on me—and I began to look at my daughter in a new light.
“From that point on, I became increasingly supportive of whatever would expand Julie’s sensory and gross-motor horizons. I remember our glee when Julie started mashing food with her hands. I am now aghast that, out of ignorance and bravado, I would probably have denied Julie help at a critical time in her life, when she had her best chance to keep sensory deficiencies from becoming deep and lasting scars. And I applaud my wife who was forced to do battle on two fronts—Julie’s deficiencies and my resistance—to allow Julie to overcome her deficiencies before she ever knew she had them.”
BECOMING ENLIGHTENED
When you begin to understand Sensory Processing Disorder, you, too, will begin to look at your child in a new light. Recognizing that he is struggling to master the simplest tasks of everyday life is the first step toward helping him while he is still young.
Accepting your child’s limitations isn’t easy. It’s natural to want to deny that your child’s difficulties are out of the ordinary. It’s natural to feel sad when you understand how hard he must work. It’s natural to feel guilty for the times you scolded him or got impatient because of his behavior.
It takes time to become enlightened. It will take psychic and physical energy to begin the journey toward making him feel better about himself and about what he can achieve. If you’re reading this, you are already on the road, so take heart. It’s going to get better.
Your child is unable, not unwilling, to perform routine tasks. Maybe she often says that she is “just too tired.” Maybe she slumps over the dining room table instead of sitting upright, or hasn’t the energy to turn a doorknob, although she seems to be eating and sleeping enough.
Redirect your thinking: When she says she’s tired, she means it. She really is unable—not unwilling—to perform routine tasks. No matter how much she wants to be independent and peppy, her sensory processing problem hinders her motoric ability. She knows, subconsciously, that her strength is limited. She has deduced how to reserve it for the jobs she knows she must do, which may be chewing, getting in and out of the car, or bending down to retrieve a dropped mitten.
Your child isn’t lazy; in fact, she is using enormous energy just to get through the day.
Your child has developed some clever compensatory skills. Away from home, it could be that your child doesn’t appear to be as smart as you know he is. He may not talk much, giving the impression that he has little to discuss. Conversely, he may talk nonstop, yet be a poor conversationalist.
He may seem uncommonly shy with unfamiliar adults and other children. He may choose the same old games and toys, as if he lacks curiosity and a sense of intellectual adventure.
Redirect your thinking: SPD affects all kinds of children, including those who are extremely intelligent. Give your child credit for being so bright that he has figured out how to avoid making a fool of himself when he knows he can’t meet others’ expectations.
Perhaps your child has lofty thoughts but can’t express them well because of a language disability that is sometimes associated with vestibular dysfunction. Or, he may be verbally adept with a repertoire of excuses for evading intolerable movement or tactile experiences: “I can’t paint today, because I’m wearing my new shirt and I shouldn’t get it dirty.”
Perhaps he has learned that if you see him digging in the sandbox, you will leave him alone. If he’s busy, maybe you won’t urge him to get on the
swing, an activity that makes him feel that he is falling off the earth. You may notice that he looks up at you frequently, checking in for your approval, rather than concentrating on digging all the way to China.
Perhaps, if he can’t climb stairs easily, he has figured out a way to get you to carry him. When a child reaches up two small arms for an embrace and says, “Hug me up the stairs,” what parent would believe that neurological dysfunction is a problem?
Your child has developed compensatory skills that allow him to devise acceptable methods of avoiding the areas he knows will give him trouble.
Your child has courage. Perhaps your child resists descending the playground slide, doesn’t like to play at other children’s houses, shuns new foods, or becomes very anxious before visiting the doctor for an annual checkup. You may be exasperated by what you see as her excessive and inappropriate fearfulness.
Redirect your thinking: People need fear; fear alerts us to danger. Your child’s apprehensions may seem excessive, but they are appropriate for her, because her world seems dangerous. Each day she must face the same scary situations, such as a fear of losing her balance or of being touched. No wonder she is cautious about new situations, which are even scarier because they are unpredictable.
Furthermore, it takes courage to resist enjoyable experiences, resist change, or resist a parent. The penalty for disappointing an important grown-up is disapproval. No one seeks disapproval. But disapproval is preferable to proceeding with an activity that the child perceives as life threatening.
Your child is brave, not a coward.
Your child has a tender heart. Perhaps your child has a “bad boy” reputation. He behaves aggressively, confronting the world with a stick in his hand, slugging the playmate who brushes against him, and shouting “I hate that!” “This is boring!” “You’re stupid!” “Get away or I’ll kill you!” These antagonistic responses may make your child appear to be a truly unpleasant person, even if you know that within the bully beats a tender heart.
Redirect your thinking: Perhaps your child can’t differentiate between benign and hostile tactile experiences. Because he must protect himself from situations that he senses are dangerous, he instinctively chooses “fight” over “flight.” He puts up a “don’t mess with me” façade, not because he is misanthropic, but because he is scared.
The child who is inwardly on the defensive will often be outwardly offensive. An air of arrogance or a tough-guy image is common among people (adults, too) who feel uncertain about their abilities and self-worth.
You know how loving your child can be at home, in his familiar surroundings. He would be gentle outside the family circle, too, if he felt more comfortable in the world.
Your child has many abilities. Your child may not be skillful at reading, running, or paying attention. Her shortcomings may disappoint you.
Redirect your thinking: She may show extraordinary empathy and compassion for other living things. She may have a rare talent for creative thinking and be artistic, musical, or poetic. She may be observant where others are oblivious. She may have a wonderful sense of humor. Her special sensitivities may be a tremendous asset. Think abilities, not disabilities.
Your child has a special need for love and approval. Maybe she strikes you as being too possessive. She grabs all the toys but may not play with them; she just wants to have them. She demands all your time, but when you give it to her, she is unsatisfied. If she loses a round of Candyland, she cries and mopes. She wants it all.
Redirect your thinking: She requires things and attention to bolster her own small store of self-esteem. She has to be the winner because she usually feels like a loser. She seems greedy because she is needy.
More than anything, your child has a special need to be loved and appreciated.
Your child’s “hardheadedness” is a survival skill. Perhaps he says things like “I’m the boss of my own body. You can’t tell me what to do.” Perhaps he is rigid, always wanting to wear the same clothes and eat the same cereal in the same bowl. Perhaps he insists on elaborate rituals for bath- or bedtime.
Redirect your thinking: Nobody awakens in the morning thinking, “Today I’m going to resist everything.” Human beings learn to cope with a changing environment by being flexible. Your little fellow appears stubborn, however, because he is not the boss of his own body, and he is not in control. His life is full of uncertainties and obstacles.
An inefficient tactile system, with an attendant fussiness about clothing, may be the reason that he wants to wear shorts when it snows. Because the inside of his mouth may be overly sensitive to food textures, he may insist on the same kind of cereal, day after day.
Sameness and rituals are tools that help him accomplish basic jobs, like getting dressed or preparing for bed. His apparent stubbornness is rooted in his need to survive.
He isn’t willfully stubborn; he is stubborn because he has trouble adapting his behavior to meet changing demands, so he sticks to what he knows will work.
Your child truly requires your attention, tailored to his needs. Let’s suppose you dress your little boy in the morning, because he takes so long and becomes tearfully frustrated when you leave the job up to him. Then let’s suppose that his preschool teacher mentions how much extra time is required for her to attend to his needs. She suggests that you urge him to become independent in the getting-dressed department. Even if you know more than she does about problems caused by SPD, you may still believe that your parenting skills are inadequate.
Redirect your thinking: Giving your child attention when he needs it and when a job must get done quickly is perfectly okay. Particularly when your family runs on a tight schedule, you will do whatever works to move everybody from Point A to Point B.
Unenlightened parents ignore their children. Enlightened parents do what they can to make their children’s lives pleasant and safe.
Your child can function better—with help. If your child has sensory difficulties now, her problems will grow with her. Certainly, she may develop strategies to avoid or compensate for stressful sensory experiences. Certainly, she may develop talents that are not dependent upon her shaky sense of balance, or hypersensitivity to touch. But she will always have to work very, very hard to function smoothly.
Redirect your thinking: SPD is like indigestion of the brain. Just as antacid can soothe upset stomachs, so can occupational therapy and a sensory diet smooth neural pathways.
Most of all, your everyday love and empathy will boost your child’s emotional security. We all need to know that someone is there for us, especially when times are rough. We all need to know that someone applauds our strengths, understands our weaknesses, and honors our individuality. With your help, your son or daughter can become in sync with the world.
A PARENT’S ENCOURAGING WORDS
A mother writes: “If we had only known. If only there had been a book like this to read. If only our long- and eagerly awaited child had been ‘normal.’
“Initially, we thought he was. He had great Apgar scores [measuring a newborn’s condition] and was on schedule with all developmental checklists. Certainly, he had no obvious physical abnormalities; he was beautiful. Moreover, he was alert, learning to talk at six months! When he was two years old, all the pediatricians at the clinic dropped what they were doing to observe his phenomenal verbal skills. We were so proud.
“But at the same time, we knew that something was not right. Something had not been right all along. In the newborn nursery, he cried so loudly that he kept all the other babies awake. Then there was the traumatic transition from breast to bottle feeding. In fact, any kind of transition from one experience to another was horrendous.
“He was also extremely sensitive to light touch and new textures. It was difficult to dress him. Then came Gymboree, with terror and screaming at physical activities the other children loved. I had to face the stares from critical instructors and parents of more ‘cooperative’ children. With time, his behavior became
more and more troublesome.
“What was wrong with my child? My beautiful and funny child.
“Finally, I contacted the public school’s early childhood screening program, and we were scheduled for a group screening.
“When we arrived at the appointed time and place, we found many children with obvious handicaps and a play table to occupy them until their turn to go through the stations. Those with mental retardation, braces, and missing limbs went ahead smoothly.
“At our turn, the transition from play to screening activity resulted in a screaming, limp child who could not be handled by all the experts assembled. We left in tears. Our son, the only child with no discernible problem, couldn’t even be tested.
“Upon subsequent individual evaluation by a team including an educational specialist, occupational therapist, speech pathologist, and psychologist, we were finally introduced to the ‘something wrong.’ Its name was Sensory Integration Dysfunction [Sensory Processing Disorder]. It required ‘occupational therapy’ and ‘a good nursery school.’
“Why had it taken so long? Why hadn’t anyone known? Why had my family suffered so much?
“It didn’t matter now. The good nursery school was at hand.
“Upon the recommendation of the evaluation team, I contacted St. Columba’s. I will never forget my first conversation with Carol Kranowitz. It was the first day my fear began to abate. She was the Music and Movement teacher, but she was so much more. She was the first person to whom I had ever spoken who knew my child without ever having met him. That is because she knew about SPD and had undertaken to inform and train other staff in its idiosyncrasies and, even more important, its management.
“These people at St. Columba’s were not afraid of my child. They didn’t see him as ‘bad’ or ‘uncontrolled.’ They saw him struggling with sensory processing problems, and though he challenged them mightily, they never gave up.
The Out-of-Sync Child Page 27