Jesse is hitting the ropes. As I type, she’s screeching at her beloved swim teacher Sarah and refusing to swim, and also whining and ululating — noises I haven’t heard in a long while. Every face in the swimming pool area is watching her, mostly in shock. It’s a busy time at the JCC pool, so at least 60 or 70 peeps are being forced to listen to my horrible child. There’s a lot of parent judging going on, probably based on two false assumptions: 1. I haven’t worked really hard for years to help Jesse control this stuff, and 2. I have the power to fix the situation here and now. It’s why I’m thumb-typing a blog on this iPhone from a distant spot in the arena, instead of paying much attention. I’m cooool as a sea cucumber.
This used to be a constant phenomenon a few years ago when we still embraced the probability that Jesse was autistic. That was upsetting in a different way. We talked about trust funds, schooling alternatives, acceptance, and social cues training. Now we’ve wrapped our heads around the notion that we’re more likely talking about mental illness than developmental disability, and more specifically, behavioral problems that Jesse ought someday to be able to control. So now I just get pissed off at her instead of doing what I should, which is talk about trust funds, schooling alternatives, acceptance, and social cues training.
Oh screw this. It’s been 15 minutes of screaming. I’m calling it. I’m going to grab Jesse out of the pool and move on. I’ll be back later to finish this.
It’s later. It’s tomorrow actually. I have a cut on my thumb and had to put a bandaid on, so then the thumb-typing doesn’t work and this is the first chance I’ve had to turn on the computer. Does anyone produce touch-screen compatible bandaids? Also I went out with some moms last night. The timing was terrible. I was so fried by Jesse’s behavior that I was destined to drink too much, but the girlie pink martini drinks were sooo delicious.
Um… So back to the pool: I marched over and told Jesse, get out of the pool, we’re leaving. She acted shocked. What, she thinks it’s okay to act like this? Much begging and bawling ensued as she quickly showered, dressed, and followed Nick and me to the car. I was grim. More bawling emanated from her room after I sent her there and told her to write down what she thinks Sarah feels like when Jesse goes apeshit on her. When I went to check on Jesse 20 minutes later, all she had written down was “I don’t know.” I could have sworn she’s shown more empathy than this succinct sentence suggests. (Just say those three words over and over again for a while. Fun times.)
Sarah and I chatted briefly while Jesse showered. Sarah had used a pat adult tactic on Jesse, along the lines of “I can’t hear you when you’re screaming and whining at me.” In response, Jesse leaned in close and yelled in Sarah’s ear, “What, YOUR EARS ARE DEAD???” Classic. It’s why we love Jesse anyway.
All of this is part of a cycle, I know. Just like me during the past month, Jesse’s in a valley, and eventually we’ll help her climb out of it. The tics are coming back too — still not as bad as they used to be, but they are so damn annoying! So I think it would be a useful exercise – in the quest for sanity – to catalog Jesse’s major tics and OCD compulsions through the years, for a little perspective. I do mean tics — not just bad habits or annoying choices, but repetitive compulsive behaviors that feel impossible to control, that sometimes happen before you even notice you’re doing them, over and over again. She’s overcome or grown out of many of these, but once in a while they return for encore performances. It’s always frustrating and disappointing when a long-gone tic returns, but we have to soldier on.
One of the most wonderfully strange things about Jesse’s tics is that she announces them. As a result, they have names. For instance, “feet on the table” (see below, meal category) is what she says as she puts her feet on the table at meals. She’s very prosaic. I used to think the announcing was attentional and combative, but that’s not right. She didn’t get the kind of feedback that would make a normal child continue the behaviors for gain. Now we understand that the announcements are cries for help, a sort of “oh no here we go again I can’t stop this crazy shit help me!” I suppose I’m glad that she’s communicating, but there’s something surreal about it at times.
Anyway here’s the tic/OCD list, for my personal gratification, categorized for my convenience. I’m not including the common OCD stuff Jesse deals with, like the constant hand-washing, the various sensory issues relating to clothing, and her deep commitment to perfection. If you’re bored with this post, now is a good time to bug out and move on to more interesting stuff; but if you’re sticking with me…
“Feet on the table.” Jesse sits down and puts her feet up on the table alongside all the food. Ew.
“Cough on it.” Jesse comes to dinner and carefully coughs once on each of the communal plates of food. Ew. Also WTF.
“Punch the window. ” Just what it sounds like. The window next to her chair at the kitchen table.
“Spill my drink.” Yup. Just what it sounds like. Every meal. This one was very messy, but we solved it by only giving her water to drink, so then bonus! A clean table after wipe-down.
Touch public toilet seat, “lick my finger.” (usually followed by a curious lilting whine, “eh-eeeeh, eh-eeeeh”)
Touch dirty surfaces in gym locker room, “lick my finger.”
Touch bottom of dirty shoe, “lick my finger.”
Touch bakery products at grocery store, “lick my finger.” This could also go in the injury category, because she knows baked goods usually contain eggs and she’s severely allergic to eggs.
Something is Sticky/Smelly/Wet
Touch crotch or butthole, stick fingers in mommy’s face, “smell my fingers.” Gag-worthy. Ever grateful this one is gone. For now.
“Eh-eeeh, eh-eeeh, my sleeve is sticky,” while fidgeting madly with her sleeve end. It’s not sticky. Why I used to wash 3 or 4 shirts a day for her.
“My hair is sticky, my hair is sticky,” while rummaging in her hair for whatever she thinks is there.
Play with the fat seam at the crotch of her pants, while curling her back into a fantastically flexible c-shape so her head is down in her crotch area. “My fingers are stinky.” Really?
“Eh-eeeh, eh-eeeh, my shirt is wet,” while hunting madly for a wet spot on her shirt.
“My shoes are dirty,” while checking the bottoms of her shoes incessantly.
“I hate [insert name of friend or family member].” We’ve never been sure why on this one. These days she tends to run away with her hands over her mouth to try to stop it.
“[insert name of anyone] is fat.” Hands over mouth, or muttering it under her breath like a weirdo.
“Take my hands off.” Of the bicyle handlebar while pedaling at full speed. Very painful results every single time. We had to put her bike away for half a year because she was getting so badly hurt. We all cried the next spring when she finally was able to ride it without taking her hands off the handlebar. It was a profound victory over a sucky compulsion.
“Choke you.” Plainly stated, painfully applied.
“Punch daddy.” More specifically, his balls.
“Diddle your boobies.” Mine.
Snuggle… “Head butt you.” This would have been a rear head blow to my chin while spooning sweetly.
Anti-authority (aka, I’m not supposed to, so I really feel the need to)
Yawping when she’s supposed to be quiet. This was probably one of the main symptoms that made Jesse’s early ed teachers think she was autistic. “AAAAWP!” She would hurl it into silence, a bold burst of sound rising in pitch from beginning to end, causing all the other little kiddies to jump in terror. My favorite reaction was from Jesse’s K5 teacher, Mrs. DLP, who one day realized nothing was going to stop Jesse’s yawp. So instead she invited all the other students to join Jesse in a group yawp, and they had a little yawping party. I could have cried for loving Mrs. DLP when I learned of this.
“Pull down my pants.” And underwear. In public. Normal for a 2 year old, not for a 6 year old.
“Pull up my shirt.” Full frontal exposure. Same story as pants.
* * * *
That’s all that comes to mind off the top of my head, and wow. I do feel better. No wonder I’m bat-shit crazy after almost 9 years with Jesse.
Oh Carla. My heart goes out to you and Jesse for the pain you are both in. The irony also feels intense to me about the disabilities our daughters have. It’s as if Sarah and Jesse were split down the middle at birth. Sarah has tremendous physical deficits but she’s all sunshine. What irony. Should we switch for a week and see which girl is more work? I know exactly what you mean about the constant talk about trust funds, schooling, etc. It’s so depressing.
I’ve thought about your comments so many times, Elizabeth. It is very ironic, but a great reminder that we should take pleasure in the up sides of our kids. I often think of you and how hard it must be to work and take care of parenting business with Sarah. You must get overwhelmed. I hope you have plenty of support to get you through the days.
Oh how exhausting. My child has an eating disorder, which is quieter but also deadly. What happens with parents who have totally healthy kids? (btw, no comments on FB or my blog about the eating disorder. The stigma is SO HUGE and she’s 18….so her privacy is a big consideration. But I thought I’d commisserate with you on the “oh crap, this again”, thing.)