*This is for those of you who have heard part of the story, and wonder… and for those of you who have walked this path with us. Thank you!*
Once upon a time, there was a boy named Regan. He was a very normal boy…
(He ate, he slept, he filled his diapers, he sat and crawled and walked right on schedule. Perhaps he was a little more opinionated in temperament and placid in mobility than his brother, but not by much—)
He was a very normal boy…
…until he turned one.
When Regan turned one, he converted to the Non-Stop-Motion regimen. He had no fear, no inhibition. He would take off running down the sidewalk and get a block away, and never look back. He stood at the top of playground slides and threw himself down, headlong. He could be jumped at, roared at unexpectedly and would laugh like crazy—it was never, ever too much.
His parents took portrait photos of him at 15 months. Every shot was a radically different pose and posture, so that when they looked through the pictures later they could actually see him moving. Constantly.
He’s a handful, everyone said.
His parents also noticed that once Regan got the idea to act on his environment in a particular way, it was well-nigh impossible to drive the idea from his head. Knocking down someone else’s block tower. Pushing over a glass-topped table his mother kept (till it broke). Throwing his sippy cup off his high chair tray, onto the floor. Again, again, and again.
Knocking, pushing, throwing. Hmm. Lots of violent action going on there. And that’s only a sample.
It didn’t seem to matter what his parents did—teaching, spanking, establishing consequences. The idea in his head remained, and he kept doing it.
Regan grew. But his behavior stayed noticeably unchanged.
Is he hyperactive? people began to ask. But he didn’t quite fit the ADD/ADHD mold. He could sit and color endlessly—went through book after coloring book, scrubbing diligently with worn-down crayons. He would listen to storybooks forever—as long as his mother kept reading.
But he was the child who got into everything; who made soup on the floor with eggs and spices; who cut holes in the couch; who regularly opened the fridge door and dumped out liquid contents; who wrote on the carpet with permanent marker; who, angry, used whatever was in his hand as ammunition against others (a fork, a crowbar); who painted his legs with Desitin and his bunk bed with watercolors; who poured 10 cups of hot coffee onto the floor; who beat his mother’s porcelain angel with a wooden spoon, trying to break it; who peed into corners of the room, or down the furnace vent; who drew homemade swastikas on walls (a particular sign which to him meant “you can kill people if you have to”); who bit, and punched, and lied, and threw screaming fits; who tasted disgusting substances; who came up with plans for dealing with troublesome parents—a whip, a cage, or running away; who was strong as a bull and twice as stubborn.
His mother was at her wits’ end. She lived for three solid years and more on red alert, always listening for the crash, never able to (safely) let him out of her sight for more than 3 minutes. She did not feel like a good mother. She loved him and dreaded him. She yelled at him and cuddled him. She cried a lot, and journalled, and prayed, and fought—fought with him and fought with herself, trying to control all that angst and often failing. She asked for advice from everyone she knew, and everyone said I don’t know. I never had one like him.
Slowly she began to notice how sensory everything was—how driven he was to touch, and taste, and smash, and smell. How he loved having his back rubbed, in the long waiting every night for his lids to droop shut. How he played for hours with anything he could influence and shape. How he laughed out loud watching Rube Goldberg sequences (here’s one), loving the cause and effect. How much he loved textures. How rough he was with other children—and how kind. How he bit his own hand after having it patty-smacked in correction. (That feels better! he’d say, sassy.) How wild he got in a crowd, or when company came: so much much stimulation, everything calling to him at once. How he loved novelty and change.
Regan grew. He was the child most in tune with emotions. What are you worried about, Mommy? Mommy, I made this kind of a face—like, what is going to happen next?
He was articulate, with a huge vocabulary. Particularly. Necessarily. Unfortunately. He could recount conversations and dreams in detail.
He was also the child who learned to sound out three-letter words at age three, by listening to Mommy teach his older brother. Pop. Man. Lid. And from there, he just sort of picked up reading. Mommy, what does this say? F-a-v-o-r-i-t-e. By the time he was four and a half, he was experimenting with books like The Mouse and the Motorcycle. Stuart Little. Little House on the Prairie. Squanto, Friend of the Pilgrims. He’d make his way through a couple chapters over several days, then switch to something new. And he really knew what he was reading. He could tell his mother about the stories later, and sometimes remember the exact words.
He could read upside down. He could spell. He could write emails—his mother had to limit him to one a day. JUST ABERTIZING A FREE CKONE OR A ICE CREAM SUNDAY TOMORO LOVE YOU —or— DEAR CARLA I LIKE PLAINGE WITH TRISTIN AND SAMY AND THERE TOYS I HOPE I SEE YOU GYS UGAN WILY SOON I HAFTOO TAKE A METACIN JUST 1 MORE TIME TOODAY AND I AM SO IXSITED LOVE AND KISES TO CARLA FROM REGAN
But simultaneously, he started reverting to baby talk. “Mi-mi. Play—ith—car.” And the screaming fits never went away. Sometimes he cried a lot. He was frustrated. Terribly frustrated when other kids played with his toys, when he had to wait, when he couldn’t get his way. He didn’t like being alone.
If there was a name for what was going on, his mother thought, it would be something like Sensory Stimuli Disorder. He was so driven. Sometimes she wondered if he could help himself. Sometimes she knew he couldn’t.
Later she found out that there really is a Sensory Processing Disorder, a lump term for the kids who are (1) hyper-sensitive, (2) hypo-sensitive, or (3) sensory-seeking. She began reading about this, and she and her husband took their son for an evaluation, weary of learning everything the hard way, on their own with so much error—an evaluation first with the family doctor, then with a Christian psychologist, then with a state program in town and a wonderful lady—Barb Newcamp, with Head Start/ Early Intervention. But the journey was just beginning.
Sensory did seem to be the thing, a neurological craving for sensation, so his mom and dad started exploring, learning, praying. But they have found no easy answers.
And the story has no end because he is still four…