My sister said something to me the other day, one of those things that stops you dead and makes you say, "Oh my god, she's right!"
What she said was actually commonplace: that most people don't realize how much a special needs child taxes a family's emotional and financial resources.
What was earth-shattering was the fact that she was referring to my situation. And she was right.
You can't tell from meeting them that my sons have Sensory Processing Disorder (SPD).
They're not "special needs" in the sense of having cognitive delays, language deficits or physical disabilities. In fact, they're unusually bright and creative.
But at their worst -- that is, at the moments when they're most overwhelmed by their sensory environments -- their behavior becomes disruptive and dysfunctional. They have meltdowns and tantrums, grow irritable, refuse to make eye contact, run away and even, at their most frustrated and overwhelmed, lash out with feet and fists.
To many people, they appear to be merely extremely ill-behaved boys. Some casual observers conclude that the problem is indulgent parenting. We need to be stricter with them. If we'd just punish them when they run around the store, they'd learn to stay at our side, we're told.
And that's how we know our children are not simply badly-behaved: no amount of reward or punishment can persuade them to behave the way we want them to when they're in such moments. Because they really aren't in control of this behavior. In the face of overwhelming physical stimuli, they respond from the autonomic nerve system, going quickly into fight or flight mode.
Here's the other way we know that our sons aren't spoiled, undisciplined, and disobedient: when you treat the sensory symptoms, the unwanted behaviors go away. You can do this by changing the environment or by desensitizing the child to the stimuli -- for example, the large echoing auditorium where S. often had tantrums became tolerable with the introduction of earplugs that reduced background noise.
The trouble is that it's hard to get people to recognize SPD and to convince the other adults in their lives -- grandparents, teachers, babysitters -- that accommodations, not punishment, is what's needed.
For one thing, few people have heard of it. SPD is sometimes called a "hidden" syndrome because it's not in the DSM-IV (although it's being considered for inclusion in the next DSM).
As a result, pediatricians don't look for it and insurance companies don't want to pay to treat it. (The diagnosis is accepted by the Diagnostic Manual for Infancy and Early Childhood Disabilities (2007) and Diagnostic Classification: Zero to Three: Diagnostic Classification of Mental Health in Developmental Disorders in Infancy and Early Childhood (2006).)
SPD was the topic of Marguerite Kelly's Family Almanac column in the Washington Post with the headline "Neurological Problems May Underlie Behavior":
This neurological problem is often inherited, affects one in 20 children and may wreck a child's behavior, her disposition and her relationships with others because SPD can make a child overreact -- or underreact -- to a sight, sound, smell, touch, taste, movement or pain. Her brain simply can't respond to all the messages it gets from the sensory receptors that are in her skin, in and around her mouth and in her inner ear, and this makes her act in ways that annoy others as well as herself.
Some SPD children don't know where their bodies are in space, so they are clingy or they hate to be touched or they stand too close to their friends. Others bite holes in their shirts, walk on their tiptoes, talk loudly but hate to hear loud talk from anyone else, or act like they've been bopped with a bat when someone has only given them a light pat on the back.
And on YouTube, here are more descriptions: