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Jett Superior laid this on you on || May 8, 2002 || 11:45 am

He collapses, shaking and near-spent, to the sofa. He begins to cry softly. His face is hidden from me, but I know that it is blotchy from effort. His thick blonde hair is literally soaked through with sweat. It has been a hellishly long thirty-six hours, and we don’t know where the opening at the end of the neural maze is.

He regards his hands and cries harder. They are angry-red and tender swollen. “They hurt, Momma, they hurt so bad…my hands, oh my hands,” and with that the flood gates are opened and he sobs away. I pull him close to me, cradling his head to comfort him, but also to hide my own tears which I’ve held at bay through this ordeal. He renders art with his hands. It comforts and soothes him to draw away, to painstakingly mimic the detail of life on the page. His hands are in such a state during all this that he cannot even grip a pencil, and that is part of his distress, maybe even a bigger part than the pain itself.

We have crossed into some unmarked and unforeseen territory in our journey, his journey, really, with me being pulled wildly along behind. I try to scrape together the pieces during the unexpected and welcome pauses.

I am reminded of a snippet of lyrics from the Baz Luhrmann tune ‘Everybody’s Free (To Wear Sunscreen)’: “The real troubles in your life are apt to be things that never crossed your worried mind; the kind that blindside you at 4pm on some idle Tuesday.” No shit. This began last Tuesday evening (I say ‘last’ like it was some forever ago, even though we are only separated from it by a mere handful of hours…); as I consider it, I realize that many things have hit me out of the clear blue on Tuesdays in particular.

I penned those words last week sometime. They were committed to paper in the wee hours of the morning, as I sat vigil over my sleeping child. At the time he was drugged into oblivion so that his 10-year-old brain and body could get a rest from the perpetual onslaught of chemicals run amok.

My eldest child has been known in previous entries only as “Sam”. It seems unfair now, with the subject matter being what it is, to use an alias to refer to him. For this post you will know him as I know him. His name is Cullyn and he has Tourette Syndrome.

Tourette’s is always comorbid with other imbalances in brain chemistry (be they one or many). There is never a set pattern of associative disorders, making TS that more difficult to pin down. You can pile a dozen TS patients in a room and come up with a dozen different sets of disorders gleaned from the big Comorbidity Buffet. Cully happens to have OCD with the TS, and to the best of our knowledge that is the extent of his condition.

His tics emerged when he was about three years old. One day he was watching cartoons and in marched a small cadre of vocal tics. They were very quiet and very brief, but a sense of doom crept across my heart nonetheless. This was the beginning.

Tics after that were few and far between and very, very mild. Every six months or so there would be repetitious nose twitching or throat-clearing or palilalia that simply appeared to be a normal 4- to 6-year-old singsonging.

As Cully grew, the tics actually did us a favor. He hides hurt and fear and anxiety well, so tics were an indicator that we needed to delve a little deeper and help him open up to purge the things of a dark nature held in his heart. Sounds utterly simplistic, but it was actually a pretty good system for its time.

At the beginning of this year, the tics began to build steam. They became more aggressive and regular in nature; his vocal tics were louder and markedly inharmonic, his physical tics leapt from cute little nose twitches to full-out dystonic onslaughts that lasted several minutes at a time. They all seemed to revolve around school hours, and his teachers and school counselor (all of whom blatantly neglected to phone me at the beginning of the school year as I had requested on my son’s enrollment card….I was going to give them a heads-up on the matter…) began to sort of freak out.

Why is this suddenly happening?” Der. He’s ten. Puberty is about to kick off in all its’ glory. Stands to reason that someone with hormonal/brain chemical shifts + a chemical disorder =someone who’s maybe going to be affected to a greater degree than most.

Have you seen him doing this?” “Do you realize how awkward and painful it is for him??” Here my fury began. OF COURSE I have seen him, you fucktards! That’s pretty much how I stated it, save for the ‘fucktard’ part. My brain was yelling it pretty loudly, though….in fact, the little evil me that resides inside was jumping up and down, spasmodic with rage that I didn’t say it aloud. What I did do, however, was shake my finger at the dipshit woman that asked this utterly moronic set of questions and said,

“I’m his mother, for Jeez Pete, and I’m a rarity nowadays in that I spend time and energy on my kids. I know exactly how he suffers, physically AND emotionally. Ya’ll might, too, if you’d damned call when requested to.”

(italics represent barely-restrained, hissed patterns of speech in that instance)

We only have Cullyn’s best interest at heart.” followed closely by “Well, it’s disruptive to the 26 other students, and it frightens them.” I sailed off the edge on that one:

If you had my son’s best interest at heart, as well as the five other Touretters at this school, then you would have an alternative learning program set up for them. You people would educate yourselves in this matter. You would NOT press me to medicate him before all other options were explored.

Believe you me sisters and brothers, they did in fact push for ‘meds as a solution’. Give him a pill and the tics will go away. NOT. They may abate some, but they hardly ever just pack up and leave town. Hear me now!: the meds are hard to adjust to, hard to wean from, and only have marginal success rates when it comes to quashing tics.

I rounded this out with the pat statement that while it sounded trite, the other children would not be afraid if they were educated on the matter. Then I tacked on, at the extreme risk of sounding base and unsophisticated, that I really didn’t give two fucks about the other kids as it was my job to fend for my own, who may be at a temporary disadvantage. As you may well guess, I actually used the word ‘fuck’ that time, and with a certain amont of verve and gusto. That sort of ended our eensy meeting.

The tics seemed to be school-centric, but they really did NOTHING to get to the bottom of it save for asking if there were any changes at home. Of course, there were none, and I patiently explained several times during our soiree that he only ticked immediately before school, during school, and immediately after, or when school was brought up. And Cully holds his cards close to the breast (almost to the bone, I swear…).

The next day after the meeting he moved out of the waxing period (the buildup/sustained period of ticking) and we entered a waning phase (a period with little or no tics). The tics simply stopped. As he was unaware of our schooly pow-wow, I said to myself defiantly, “Point made.”

And time marches on.

Six weeks after the Elementary School Garden Party (a week ago Tuesday, to be exact) we went out to eat as a family. The tic began as a goofy facial grimace and a slight head-tilt. Cullyn and I took a breather and walked around outside the restaurant to calm his anxiety about others staring at him.They weren’t, of course, they almost never are — but he thinks so and that’s what matters. He confessed to me that he found this tic quite funny. Humor is a necessity.

Things escalated upon returning inside; he began chanting “dahhhh-OOOOHM” fairly loudly. Funny, looking back now, it reminds me of some prayer mantra. Hell, for all I know, it was; it could have been a voicing of some primordial spiritual tidbit locked away in the recesses of his brain, only to be freed by the right cranial chemical cocktail.

We were all done with our meal, so we headed for home. Within 30 minutes Cullyn’s whole body twisted, drawn up, and his head craned wildly back and to the side. He reminded me of a little bird straining for a meal. Within an hour his hands were affected — fingers splayed and drew up, bending away from the palms which beat away at various surfaces frantically.

We tried massage therapy, which usually works wonders. We tried breathing exercises, which usually draws the focus away from his tics, thereby easing up the vicious tic-anxiety about tics-harder tics-more anxiety cycle. Nothing worked and the tics progressed, becoming more and more aggressive. We were newbies in this arena.

It’s important that a Touretter not try to suppress or control the tics. It tends to make them more explosive and sustained later on. I gently reminded him to roll with it. The bouts grew longer and longer –up to 30 minutes at a whack– and seemingly more severe, giving him a glazed look and blocking his speech at times. He was getting scared, and in the quiet way that parents have, so was I. Cully was getting only a two-minute reprieve between tics, he was worn out, he was afraid in the way that little children are when something is out of a parent’s control. I broke at 1 ay emm and called the insurance company for an emergency referral.

He confessed that he was ashamed to be seen in public, so I reassured him as best I could, explaining that the ER would not likely be much-populated in the wee hours of a Wednesday morning. Upon arriving, we were given one little blessing that I was immensely thankful for: the triage nurse happened to have a sister with Tourette’s, and dealt with my son using the utmost respect and gentle courtesy.

“Give him something to make him rest, please,” I asked of the doc who came in to see us in short fashion. Like other times, I found myself educating a medical professional on the subtleties and wonders of TS, but I found it less annoying to do so because this doctor had kind eyes and was very earnest in his admittal about a lack of knowledge on the subject. Ativan, half a milligram, and a short, wary peace ensued. Six hours to be exact, half of which were spent sitting and watching Cully as he slept splayed-out and brick-like on the sofa. I feared putting him in his usual space –the top bunk–as I had no idea whether he’d wake or not.

He awoke around 7:30 and greeted me with rolling eyes and a loud “Det-DAHMA!” and my heart sank.

Here we go, dear” spoke the the very small part of my psyche that is a pessimist (and who was sure to feed and feed off this situation were I to let it), “there’s plenty of downhill left for you before the levelling off, I’m sure.” Sneering internal voices make me mad as fuck. Just so you know.

The day was absolutely insane, as the tics spiralled further and further out of control. I gave him an Ativan that night, and it didn’t even phase him or the rampant physical activity. I resorted to two, and another uneasy silence was attained.

The next day went much in the same fashion, and Cullyn was mentally, physically and emotionally exhausted. He would collapse in the brief span between tics, head sopping, body quivering and ask for food in a frail voice. He was starving from the constant activity. In the span of 48 hours I fed the child nearly 24 times. Around 12 pee emm he was frantic with the tics and collapsed in a heap, crying, “I’m gonna die, mom. I am going to DIE.” I comforted him as best I could, then picked up the phone.

By some act of God (and an act of God it was, I assure you) I managed to break the impenetrable wall and get through to his neurologist’s secretary/nurse. The front desk had told me that the next appointment available was AUGUST, for ham and hell, but then the boy wandered into the room shouting “Det-DAAAHHHMAAAA!” and beating his hands on the wall and I was transferred to the inner sanctum. When I explained the whole situation to secretary/nurse and she head heard him in the background, she said, “My God, you guys can’t bear another 24 hours of this.” and I began to weep.

“No, we can’t,” I acquiesced and she bade me strength while she paged my son’s neurologist. He was at a conference.

I don’t know what she said to him, but he was on the phone to me in twenty minutes. “Bring him on in to Children’s. I’ll have people waiting.” I told him what time we would arrive and hung up. I hurriedly got my shower, helped Cully get his, gathered clothing and activities enough for 24 hours for the both of us, met Cully’s dad for some cash and hit the road for the hour-plus drive to Birmingham.

Here is where an ‘internet friend’ helped me immensely and isn’t even aware of it. Some time back he sent me a stack of CD’s he had burned for me. One of these happens to be a motley collection of tunes from a wide swath of genres and my kids absolutely love it. Not finding anything to my liking on the radio, I mashed the CD button and ‘Tractor Drivin’ Man’ began in all its glory and by the third repeat of that little ditty Cully was snuggled down in his blanket, stretched out in the back seat, sound asleep. Not drug-induced sleep. Good, solid sleep. This brought a sense of relief on my part.

Nonetheless, with the car quiet and the miles rolling off behind us, the exhaustion and the fear began to take over, the frustration gained temporary ground. My hand went instinctively above the visor where a spare CD or two usually lurks, and I blindly popped in the first thing I grabbed. Dusty Springfield’s voice rose up to meet me, sweet and warm and full of heart, and I began to cry big silent tears, my hands and heart shaking, my face crumpled into the ugliest of grimaces. I let go all the fear and anger and hurt I had been experiencing in one big wash. I cracked the window a couple inches and I smoked and cried quietly and croaked out broken lyrics, the complete antithesis to Dusty’s oh-so-smooth-and-sorrowed delivery.

As with all complex tales, there is more for the telling and maybe sometime I’ll get to it, but now I’m just too fucking tired and just a little overwhelmed (yet coping pretty wonderfully, I must say, dear readers….I keep telling myself, ‘He has TS for Jeez Pete, not cancer.” I think I’ve even said that to a couple of others, as well. Let’s just keep things in perspective, okay??).

Lord Tel, keeper of the Jack, lover of Klem, packer of wonderful surprise boxes: your little wood-pulp-and-starch container of goodies came in handy at the perfect moment. It’s contents soothed two souls that were nervy and raw just when they needed it, really needed it. Everyone else: never let anyone tell you that ‘internet friends’ aren’t “real”. They reach you and know you sometimes in ways that people in the flesh never could.

Nobody worked it out »

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