*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…
I love that guy! You are a brave lady!
Some of this really rings true– especially the parts about being highly stimulated by people and crowds. And the constant motion. And absolutely no fear. Some other things I can’t really identify with; for example, Miguel isn’t reading or showing signs of extra-intelligence but is at a fairly normal intellect for preschool age (although he has an uncanny memory of stories, movie lines, and ability to imitate accents, voices, etc) However, he never showed much signs of intended violence or destruction toward objects or children, they were usually just in the way of his incessant hurry. Also, he was extremely mobile and active as a child, walking and climbing young and showing good motor skills, which I understand is not typical of SPD? Also, Miguel had, and still does, have marked traits of OCD in the way he needs things put back in their place, cleaned up, and extreme attention to details of routine and repetition, which you don’t mention.
But the frustration…. the anger… the helplessness of dealing with a child who just seems “too much” for both himself, his parents, and others to take. The constant seeking of “what works”… and feeling utterly defeated when consistency brings no better results than trying all sorts of new methods of restraint and discipline.
At four and a half, Miguel has improved, greatly. In many ways we look back at how he used to be, and think: wow. We can function now. We can go places, visit people, without traumatizing ourselves and them. But I don’t think I realized how difficult our journey with Miguel was as a toddler and beyond until we had our second child and saw what “most” children are probably like. At 2, Miguel was at his worst. At 2, Julie pretty much fits the mold of average two year old, maybe even more placid and laid-back than most.
Much grace to you, and I would love to talk to you sometime… In the meantime, I’m going to read more about SPD, and perhaps be more enlightened about issues regarding our own dearly beloved, but oh-so-trying-at-times son…
I pray for you as I sit here. Because I know.
“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.”
I read it the first time, but it didn’t sink in until now… all of those are completely true of Miguel. To a T.
Then I read “He didn’t like being alone.” Which threw me back into the confused camp, because our son loves being alone (When he was smaller, we suspected autism for a short time because he would always grab a few favorite toys and head for an isolated corner to play alone in, creating his own small world). This has improved as he grows older and his social circle expands, but he is still often found doing his own thing even when other children are present.
I’m just thinking out loud. It would probably be more helpful for me to just be quiet now and process things and discuss it with you sometime at ladies’ group this fall @ Rach’s??
Still praying for you… 🙂
Thanks for responding, Peg. I’d love to talk sometime. I hear in you the same quest for answers, though maybe you are beyond some of it. For what it’s worth, I’m guessing the frustration I described in Regan is probably pretty typical of many kids with a disorder/problem of some kind, not only SPD.
Beyond that, I don’t know. It’s been helpful for us not to rule out a diagnosis just b/c it doesn’t ALL fit. (Maybe it never will?) Every child is so different–besides any disorder, you also have their own nature, personality, and all that…
Regan has been very coordinated too; no problems there. But he could care less about organization, neatness, or careful routines. Whew! What will we do with these boys of ours?? 🙂
Oh my…prayers are with you…Our Tristan was/is a child we have not figured out yet.How well I know the desperate longings to know”What is wrong”…the love/hate thoughts….. the embarrassing times when people wonder what was wrong and if we even know how to correct a child and make him listen….. Please know that I will pray for you on this journey.
“She WAS a good mom!!!” And I’m crying! With you!!
I am here to argue with you about your (felt) failure in mothering Regan! Maybe you haven’t been a 100% perfect mother 100% of the time (pray tell, who has???), but you have mothered with grace and the guidance of the Holy Spirit. You have given deeply of yourself to your son. I always feel grateful for Regan when I see him with you and Ryan because I know that he is MILES ahead of other kids (with similar conditions) because of the way you as parents are investing in his life.
Well said Shaunda!
Yes and amen to Shaunda’s comment! Thanks for posting this, Shari. Regan is on a good journey and I just love every chance I get to interact with him.
And now I must come out of the wood work and comment. I happened upon your blog a while ago – not sure where from, and read for a little before I realized, “I ‘know’ this person!”.
Anyway, I had to comment today be I have a “Regan” too. He is just about to turn 5 and I think I may actually live. In the last few months he has calmed so much. He still does crazy crazy things. But the light is coming on and the reasoning abilities are s.l.o.w.l.y increasing, but the light is there.
There is much that can be done to help these crazy sensory-seeking kids. But O! the work! and misunderstanding form others! and pain and trials of our own hearts.
George used to have a ton of fear about heights and speed, was EASILY overstimulated as a smaller boy – as if he were hyper-sensitive. And then one day he would get up and the whole day be on overload and he would act as if he felt nothing at all and was looking to feel. O those days drove me wild. And discipline… O Lord. There are no words for the struggle.
Now that fear has been replaced by an quiet confidence. That overstimulation is – most of the time – predictable and fairly easy to watch out for. And the days he flips to not feeling anything? They are less all the time. But it is slow progress. Only as I sit here and write do I really! realize how slow yet how true that progress has been.
If ever you want to hear, I would be glad to tell you what we’ve done in the last year or so that has made the huge improvements.
(O and about that learning academics? No such luck here. He can hardly remember that he is 4 instead of 3, he cannot count to 5 and has not letter recognition whatsoever)
…and Shari is still a good mom!!! …and has been stretched in her motherhood role to a much greater degree than many mothers will ever experience…and has lived to tell about it! I love you, Shari!! And I’m also crying!
I am not a mom, Shari, so there is much and more I can’t relate to in your post. But it struck a chord in my heart. I hope you will sense the Lord’s delight in your role as a mama…as imperfect as you may be.
He came to redeem you. And Regan.
And all this wildness is made beauty.
Shari, I can really identify! I have a 5 year old boy like that. I’d love to hear more about how you’ve handled it. It’s an incredibly hard and painful journey… I wish you God’s strength and wisdom!
Thanks for sharing this part of the journey with us. Blessings to you… Alisa
Hugs to you! My heart just broke reading this. I feel frustrated as a mom and yet have never experienced anything as a mom to this extent, only as a sister. My adopted brother has Fetal Alcohol Syndrome, and though it’s not the same thing can really identify with the frustration in discipline, etc. It was so hard. People don’t understand how it is unless they’ve actually been through it. It’s a lonely journey if you don’t know what’s going on. He is 15 years old and they just got him diagnosed. There were so many tears and frustrations along the way. I’m so glad that you found out pretty early on what Reagan is dealing with and will be able to help him. We will commit to praying for you and your family. Love to you and yours!
I cried when I read this. We have 4 sons the 1st three were normal rambunctious boys. Then God blessed us with Jaden, and everything we thought we knew about child rearing went out the window. We are still searching for answers and haven’t found them yet. My thoughts mirror almost exactly those of the other Joanna. I will be praying for you in this journey.