The problem of hair

Simon's hair was getting a little out of control. Even if you're going for  a spiky sort of hair style, that's not where it should stick up. It's hard for Simon to get his hair cut. One of his most touch sensitive areas is his head, and as I'm not remotely a hair stylist, I have to touch his head a lot for a long time to get this done. Every little hair that falls on his neck or face bothers him, and he pulls away from my touch, the comb, and the scissors. It's hard to get a single decent snip on a kid with sensory defensiveness.

I turned on a show for him, hoping the distraction would be enough. I got it done eventually, but it could have gone better. He won't let us brush him anymore, but I could have made some game out of compression. He loves being wrapped tightly, arms down, in a towel, and there are lots of other ways to get that pressure that  he might enjoy. Ah well, something to keep in mind for early spring when I get the nerve and need to try again.

Batman isn't fun for kids or grownups

Monday afternoon was mildly busy at our neighborhood indoor play area, not chaotic, but noisy and full of 2-3 year olds darting about. Simon spent a good amount of time at the train table, as he typically does, and I sat, rocking, spacing out, until a couple of the younger boys ended up near the train table and had a few loud, tense moments. I couldn’t see the table from where I was sitting, or I probably would have stayed put, but knowing Simon’s difficulty with noise and kids, I headed over to be sure he didn’t bean someone with a train. One boy dressed as batman kept snatching trains from the other little one, who would proceed to wail until Batman handed it back, at which point he instructed the aggrieved party to say “thank you Batman.” Simon kept a wary eye on them and kept moving his trains around the tracks until Batman moved on and took a train from Simon.

He froze. He didn’t say anything or move for a moment, and I froze too, waiting to see if he would hit, grab, scream, or turn away, letting Batman have the train. He just held his hand out, and Batman obliging handed him the train back. “Thank you.” Simon told him, and the other boy corrected him, saying “Say thank you BATMAN. You have to say thank you Batman.” Simon, not being one for pretending, costumes, or superheroes, paused with a pained look, then said “thank you” again. “NO,  say thank you Batman!” Batman insisted. He was getting louder and closer to Simon’s body, so I stepped in explained to Simon what the little boy wanted. He did it, but he didn’t like it.

We moved around, playing in the quiet play room, the big kid room, and eventually back to the train table. There were several kids there, and he didn’t like trying to play around them. Simon stood near the table, trying to decide whether to stick it out or find another place to play, when Batman ran up. “You’re a superhero too!” He shouted. Simon’s eyes got bigger and his body stiffened. “We have to save people. Let’s go save people!” He yelled, inches from Simon’s face, and – terror of terrors for my son – pulled on his arm.

Simon sobbed. Not a meltdown sort of scream or yell, not a shout or a whine that are typical of him. He really, truly cried. I held my arms out and he ran over to me. I think he might have said “he hurt me” as he smashed his face into my shoulder, but it was too muffled to be sure. He stayed there for a long time, holding tightly to my body and snotting my sleeve. After some time he calmed down and went back to the empty big kid room to play, and spent the rest of the day asking why the boy pretended to be Batman, how it wasn’t fun for him, and it wasn’t fun to kids or grownups.

Carseat Driver

“Oh dear! The signal light is RED!” Simon shouts from his car seat.

“Daddy, daddy, you have to slow DOOWWWWNNN!”

“Oh no, there’s traffic ahead.”

“Look out! A signal light! Stop! You have to stop!”

Driving with Simon is an extreme test of patience, with comments every few intersections about the traffic, the signs, the other cars, the need to speed up, the need to slow down. “Simon,” we tell him, “it’s okay, we’re going the right speed. We see that stop sign. We know how to drive.” He carries on.

“Look out! That car is stopping!” I shout at Bob, then clap my hand over my mouth. “I’m sorry, I’m so sorry. I don’t mean to do it.” I see where Simon gets it from. My son and I are anxious people, and there is little so terrifying as riding in a car. It’s not Bob’s fault, he doesn’t speed, forget signal lights, or make sudden turns or swerves. It’s just us, our anxiety, and likely, our touchy, often confused nervous systems.

I used to wonder why I reacted so much more than other passengers to sudden dips in the road; why “stomach flipped” when others barely noticed. Now I know it’s probably my hyperactive vestibular sense, an overreaction to the shift in gravity. Toss in a wonky proprioceptive system, the sense that tells you where you are in space and how your body is moving, and the average shifts in speed, lane location, and road grade become a mini-roller coaster, particularly in the back seat, where even neurotypical folks feel a difference.

Simon’s exclamations and overreactions are in part because of my bad example, in part because of the constant accidents in that dratted Thomas the Tank Engine show, and partly because he can’t understand yet that what he senses isn’t a true indication of what’s actually happening. I thought it was mostly me and the show, until I sat next to him on a ride into work this morning.

Simon’s little hands never sat still while we were in the car. He picked at his nose and in his nose. He pushed his blanket through his fingers and between his fingers. He picked at the little bit that’s left of the felt dinosaur on his blanket’s edge. He smelled his blanket. He sucked, chewed, bit, and even licked his pacifier. When I asked him to take it out of his mouth to talk, he held it inches away from his face. He leaned forward, leaned back. Forward and back. This is not the behavior of a child at ease. We’re fortunate to have an extremely verbal SPD kid, and he explains his anxious movement with his frequent, grating complaints about our driving.

If we can convince him to wear headphones in the car, get him a weighted vest or lap blanket, and stock up on fidgets to keep in the car, I hope it can ease some of his tension. Not only for our sake, so that our little back seat driver pipes down, but for his as well. It’s sad thinking about a little four year old, over ten years away from a learner’s permit, being so consumed with fear about riding in a car. 

We hate making mistakes

After we finally got the smoke alarm to turn off, I made Bob go upstairs to get the parchment paper that would let the cookies bake properly. I was so mortified by mistake, I wouldn't go up there all night. It took awhile to even eat one of the non-smoked cookies.

I won't order some types of of food or use words I've only read because I'm terrified of pronouncing something wrong. I don't try to play baseball with Simon lest someone see how terrible I am.

Simon makes a few snips with scissors, then tosses them across the room because he needs help getting them on his hand again. He knocks over a game piece because he didn't understand who's turn it was. He won't try to write his name anymore, because he can't get his letters to look right.

He seems to be so upset by making mistakes that he screams, hits, or throws when we congratulate him for doing something well, as if it's a reminder that usually he fails.

The theory is that people with SPD struggle with accepting mistakes in part because we are so used to having things be difficult. We have a baseline of frustration, failure, and embarrassment, seeing others easily do new things while we struggle. One goal of occupational therapy is to create a new experience of small steps and successes, helping set up a new expectation. Another effort we make is to praise the effort, not the result, even when he is successful. Otherwise "good job trying" becomes another way to say you didn't succeed.

My own fear of mistakes might limit my spoken vocabulary and menu options, but I've had enough success and manageable failures to get to a place where I can try and learn when it really matters. My hope for Simon is that with the right encouragement, he can grow to be a confident person, knowing he'll get things wrong and struggle, but pressing on regardless.

In the meantime, I'll try not to lose my mind when he screams at me for telling him "well done."

The joys of hyper-sensitivity

My son and I both let out the same deep sigh of contentment as the gas fireplace kicked on and the dry warmth reached us. We stared with the same intense concentration at the flames' flickering. When we both broke away to pick up the story we'd gone over there to read, we agreed happily that the fire was incredibly cozy, that it felt very good, and that we really liked it.

What would be a lovely, cozy experience to many was completely consuming to us, our senses loaded with positive input. And what may become common place to many was just as wonderful and intense the next night. And the night after.

With our nervous systems taking in more sensation than neurotypical folks, we're often easily overwhelmed, over excited, agitated, scared, or angry. Sometimes, though, the extra intensity is a blessing.

That super soft micro fleece blanket feels even softer to us than it might to you. And without the proper neurological connections to habituate to sensations easily and quickly, we get to experience it as if for the first time many times.

I've noticed this scarf I'm wearing right now about every 15 minutes. It is soft and gently warm, and every time I feel it again as if I just put it on. If it weren't for the little fuzz in my sock, the truck backing up outside, the hum of lights, computers, and heating fans, I'd be incredibly comfortable.

Tonight, if Simon can avoid a bedtime meltdown, we'll be back in front of the flames, reveling in our over sensitive brains, absorbing every second of the flicker, the drone, and the heat.

Halloween is truly terrifying

Last year on October 31st I did something awful to my son. I put him in a costume. He didn't want to, but it was Halloween, and we had the cutest lion outfit, and I figured he'd get over it. It got worse. We were invited to join the large group of neighborhood preschoolers and toddlers in their trick or treat adventure, and the amusing tradition of reverse trick or treating, where the adults hand out beer to the adults handing out candy.

We had never heard of sensory processing disorder at that point, and didn't know that the sight of all those kids, especially kids in costume, and the unpredictable volume of 20 excited fairies and monsters.

I didn't make him keep the hood up, and he hung back from the large group, heading to the door as the last kid left. He did okay, happy about getting candy, and only breaking down when the group shouted trick or treat for a camera.

This year, though, we're talking about Halloween, what happens, what is fun, and letting him decide if he wants to take part. So far, he has said no, and despite my own love of trick or treating, I won't ever force him again.