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Jett Superior laid this on you on || August 15, 2002 || 8:22 pm

I was wishing for rain earlier. I love the rain, everything about it — the smell in the air, the smattering of drops on the sill, the muted quality of everything when it’s juxtaposed against the sounds of drops on my roof and low, slow-travelling thunder.

And the idea that things are getting washed clean, getting a new start….

The tics are back, greeting us anew this afternoon. It’s only the second week of school. Crap. Maybe that’s the ’something wrong somewhere in the periphery’ thing I mentioned earlier. I hope that’s all.

I had some friends over to play earlier and I noticed that Sam kept well to himself, which is unusual. He adores music, and often is Mr. Rhythm, dragging out the bongos or a shaker and following whomever has the strongest lead at the time. Even when he chooses not to play, he is on the fringes to watch and listen. Tonight he was conspicuously absent.

As we sat down to eat dinner, he asked to speak to me alone.

“You remember Cathy, mom?” Cathy was our dog that got stolen a couple of years back. “Well, I used to do this thing…this tic….and after I got out of the shower and got dressed tonight, it happened with Baxter.”

“What, son?”

“I start saying things like, ‘Stupid dog! Dumb dog! Get away! Stupid, stupid, stupid!’ and after the tic stops, I try and tell Bax that I’m sorry, it’s alright and he didn’t do anything, but he backs up and cowers away from me…”

His eyes well up and it takes everything I’ve got to keep mine dry as his bottom lip begins to quiver. “That makes me feel real bad, mom. I don’t want Bax to be afraid of me.” I ask him if this has ever happened with people and he tells me that it has not. I ask him if he ever touches the dog when this happens; my concern is two-fold. I don’t want the dog to suffer any form of abuse (physical would be worse, though…) and I don’t want Sam to get bitten as a result of something he does in the throes of a tic. He assures me that it does not. I want to know why he never told me about it before, like two years ago when it happened with Cath.

“I thought you would get mad and spank or ground me for being mean to the dog. I didn’t really know about my Tourette Syndrome then.”

“That must have been really confusing for you, Sam, being mean to a pet that you loved so much. I’m sorry….I just never knew it was an issue.” This leads me to wonder what other things may have been going on tic-wise that he hid well from us in the past and how he must have been scared by his uncontrollable actions, how that fear must have tortured him.

I fucking ache. In the pit of everywhere, I ache. Once again, the ache is pushed to the side and the explanations begin. The working through a ‘best scenario for everyone’ happens. We agree that if he ever, EVER gets the urge to lash out at the dog physically, he MUST control that aspect of the tic at all costs. To this point, violence has never been an issue –Sam is a tender, compassionate little person– but we never can tell when we’ll turn a corner into a new set of behaviors manifested via the ticcing. I told him that it may be best if he removes himself from Baxter’s presence and re-directs the tics from now on.

“Call your pillow stupid. Fuss at it for however long you need. Hell, I’ll draw a puppy face on it if you need me to….” He laughs. The pillow has taken lots of abuse in the past year. It has been ‘patted’ incontrovertibly hard, it has been flung, it has been tossed off the bed only to be retrieved and tossed again, it has been beaten against the floor. It is a very stoic and understanding pillow.

Basically, I do what Moms do in this situation. I reassure my son while cradling his head against my shoulder and I keep reassuring him until I am (mostly) confident that he believes. I’m pretty sure that he is fully aware that these things are not his fault, even if he’s not okay with it. He’s as okay as he can be, I suppose….that’s all I can ask.

One day at a time, sweet Jesus. Smile upon Sam, your favored son, for me, okay?

He asks that I not share this with anyone, for fear that they will think him a bad person for picking on a dog. “I’m gonna run down the street with a megaphone, shouting it to whomever…will…listen!” I cry out grandiosely, and he laughs.

“Momma, you’re the silliest person I know.”

::: :: ::: :: :::

Bedtime row with Mathias, and I send him off to his half of the bunk. He mutters all the way. Maxim says I deserve this; I deserve a little person just like me personality-wise to have to deal with. I give him an unwavering stinkeye.

Sam is packing for an overnight at a pal’s tomorrow night. He approaches me, arms laden with child-proof lidded plastic bottles of all shapes and sizes.

“Can I take a break from my pills for one day, mom? Just one day??” I answer concretely with a ‘no’ and send him on his way. I would love to be able to indulge this wish. I would love to let him do what the hell he wants to do, but this is not in his best interest. I will not coddle him in this respect. He must learn to function within the boundaries that TS has laid out for him, because although it may not be an issue post-puberty, it may very well still be. You just don’t know. I cannot do him the disservice of not learning to take care of himself. I won’t be here forever. I must instill certain truths now, and I must be consistent with them.

This goes for all my children, not just Samuel.

Finish up the dishes, go and tuck Scout in, head for the boys’ room at the front of the house. I hear Sam speaking one phrase over and over, “Good night, Mathias…Good night, Mathias…Good night, Mathias…Good night, Mathias….” and I tend to the business of picking up stray socks and slippers, tucking a book back into its rightful place on the shelves. I bend to the bottom bunk.

“Good night, Mathias, you mean baby. I love you.” He lolls his face toward me, eyes already half-lidded and unfocused. Apparently things are alright between us again (he is mercurial, like me…), because he reaches up, grabbing both my ears and plants a solid pucker on my lips.

“Awwwww, I love you toooooo, mommyyyy.” he singsongs in a perfect imitation of the sugary-sweetness that adults shower upon him daily. There is no sarcasm yet, and for that I am thankful. He is still my boy-child, and before I know it the man-child will have replaced him, tender mussed curls will be shorn off in favor of a shorter, more unkempt ‘do….

I straighten and drape an arm over the top bunk’s rail, prop one foot upon the ladder. Sam and I always conversate before the blankets get poked in around him. I relish this, for Scout will have none of it. With her, it’s always the quick peck on the lips, the bright, “G’nite, mommy!” and I am expected to clear the fuck out, no bones about it. It makes me laugh, thinking about it and typing it here now.

“You stressin’ about anything, Sammo?” I ask, and he says, “Not that, that, that, that, that, that, that I know of, of, of.” Whee! Palilalia! I’m not making light here, but I am. Palilalia is MUCH more fun than echolalia. Echolalia makes it near impossible to communicate. Many times it blocks Sam’s speech, rendering him useless for communicating thoughts and ideas for the time being as the token word or phrase or sound that he has just heard someone else emit takes over everything. At least until the next word, phrase or sound he hears. So, palilalia has my vote and I encourage you to choose it at the polls. Thank you.

“Brett, Brett, Brett, Brett, he’s grumpy…grumpy…
grumpy…grumpy…grumpy…grumpy…grumpy…
grumpy…grumpy…grumpy…with me. Me. Me.” I remark on my assumption that Brett is a kid in his class and he nods in affirmation.

“Well, son, is he grumpy with everybody?” “Y-Yes. Yeah. Yeah. Yeah. Yeah….”

“Okay, then it’s not just you. Don’t take it personally.” He frowns.

“Yesterday-yesterday-yesterday-yes. Ter. Day. when I was doing the jaw thing (the ‘jaw thing’ is where his lower jaw opens and closes with a mild bit of force, clacking his teeth together…somewhat loud in a quiet classroom), he told me to cut it-cut it-cutit-cutit-cutit OUT and I tried to explain, explain? Explain, explain what it was and he wouldn’t listen. Then Cecily, Cecily, Cecily,” –here I made a crack asking just how many Cecilys did he HAVE in his homeroom anyways and he laughed, which broke the pattern– “tried to tell him, tell him, tell him, tell him, tell him about TS and he toldtoldtold her to shut up. Then Ryan-Ryan-Ryan Ess (there is a Ryan Ay and a Ryan Bee, as well) yelled out, ‘He has TICS, Brett, so shut up-up-UP!’ and I laughed because the way he said it made me sound like I had y’know, y’know, y’know, like the ticks from dogs and everybody else laughed too. Too. Too. Toooo.”

I am thankful for this, the largest of small blessings: the children at his school are understanding, or at least attempting to be. They are not foul or ugly or intemperate with him in the ways that they could be. The ways that I have heard from other parents of children with Tourette. Tina, for instance, whose son Josh is now home-schooled because of the torture, abuse and humiliation he had to bear from other students and teachers alike. Unconscionable. We are fortunate. We are fortunate because Sam has not had to bear the abuse (which most certainly aggravates symptoms of TS) and because I have not gone to jail because I was compelled to strangle some verminous little kid/their ill-equipped parents/an ignorant teacher. Because I think that’s what would happen if someone went out of their way to hurt my kid over and over andfucking over.

Sam and I conclude our conversation, in which I’ve explained that it’s near the end of a school week, it’s around bedtime, he’s tired: “It’s not unusual to tic when your brain and body are taxed, Sam. Don’t worry.” I kiss him and bid him to find sleep, even as he is singsonging while I click the light off.

Then it’s my turn. I try not to, but I go through these moments of intense panic, the ‘what ifs’ bombarding me from all directions.

    “What if this escalates?”

    “What if he can’t handle this thing that life has handed him?”

    “What if I’m forced to stop working outside the home?”

    “What if I have to do battle with the school system? I mean, really hardcore battle?”
It is intense, but blessedly brief. It is brief because I remind myself that I have the luxury of faith to fall back on. I am a mover and a shaker and my wretchedly twisted heart has a center of the finest, purest gold. God takes care of those.

I also remind myself that I’ve led the life I’ve led, been given a raging heart and strong soul and loud voice honed through trials by fire and careful, measured internal cultivation, because I was being prepared for things like this. The Cosmos entrusted me with someone as divinely unique and special as my son (and daughter, and son) because I am the one person that could handle what was thrown at them and still have the reserves to assist them in handling it, too….

In short, I am a Crusader, I am a Momma Bear (among other things, but those are the two that count in this instance). If you are not on my side, then you are well and truly fucked.

6 worked it out »

  1. The Fancy Llama 8.16.2002

    Jett, you are simpy amazing as a person, a wife, and most of all, as a mother. You are the mom that every kid deserves to have. I haven’t yet been a parent myself, but I know that it’ll be hard, and I hope and pray to God that I will do as good of a job as you are doing, and that I find a wife exactly like you.

    Again, I have never been a parent, but I would imagine some encouragement every once in a while would be comforting. Well, you deserve all the encouragement in the world. You are truly are, the a-MAZ-ing Jett.

     
  2. fish 8.16.2002

    speechless.

     
  3. tim451 8.16.2002

    i had to come back and read the second half of that post, it was so damn long!

    but, in retrospect, most certainly worth it.

     
  4. The Dane 8.17.2002

    Psst. Jett. You’re a good chick and I like you. Keep on being. For as long as you can.

     
  5. Jett 8.18.2002

    *sheepish*

    and yes, DANE, believe it or not,

    *humble*

    Look, I’m not looking for praise….I do what I do, just like millions of other everybodies on the planet. I just have to purge sometimes, is all.

    Thank you all for ‘getting’ it/me…

     
  6. Jett 8.18.2002

    and, for the record,

    psst….dane….your comment took my breath. it’s one of the nicest things i’ve ever had the pleasure of being gifted with.

    llama…if you find one just like me, be ready for the ride! (and my kids may beg to differ with you….let’s just see what the therapy bill looks like in twenty years)

     

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