The road not taken (well I’m taking it now, so back off)

After eleven years as a parent to a child facing some serious mental health challenges, I’m a walking garbage bag full of epiphanies, many of them inconsistent with each other. And thanks to this stupid blogging idea — who ever convinced me to do this? — I have the constant opportunity to go back and read the most ridiculous and banal of these epiphanies, and to shake my head in sad, moping embarrassment.

But what’s the point of doing that? I won’t do it, not yet anyway. Forward ho! What’s the point of seeing evidence of what I already know — that I’ve spoken in ignorance, I’ve made no sense, I’ve grasped at straws, I’ve poisoned my kids’ lives, I’ve chased marsh gas? I don’t need to re-read my past to know that I keep having these epiphanies because none of them have been epiphanous enough to fix anything.

I haven’t had any memorable epiphanies lately. But I have been experiencing a deep change in my thinking and my parenting soul, something less akin to a lightbulb going off and more like the dawn breaking, slow and sure. As sure as I ever am about anything, at least.

* * * * * *

In the spring, we admitted Jesse to an intensive outpatient OCD/anxiety treatment program at Rogers, a large mental health institution around here. It was the latest chapter in our relentless commitment to helping Jesse manage and recover from her Severe Bout of Mental Illness (SBMI, if you must). We were making the next evolution, really getting down and dirty, tackling the SBMI at its behavioral roots.

Jesse spent three hours a day in the program, Monday through Thursday, plus an hour drive each way. It was exposure therapy at its best. SBMI, avast!

So that was twenty hours a week devoted to therapy, while Jesse was on short days at school. It meant no extracurriculars, no time for friends, almost no exercise. The Rogers psychologist convinced us to up her meds. We didn’t see a real difference, but he didn’t want to try something new.  In hindsight, I don’t know why that was, and I don’t know why I went along with it and didn’t push harder for an alternative to staying the course.

The staff convinced us to put Jesse on a sort of modified schedule at school, where she was brought in and out of the classroom with the assistance of a special ed teacher and a timer. She stopped learning much of anything except how to read the timer. I imagine every “timer’s-up” buzz was a healthy reminder to Jesse that she was a seriously MESSED UP TINY HUMAN (MUTH, if you must).

At the hospital, we did exposure therapies, forcing Jesse to look at and hear things that triggered her worst anxieties, obsessive thoughts, and tics. On the hospital’s advice, we took that torture therapy home and made Jesse do it there as well.

I say “made Jesse do it” with purpose. It goes without saying that cognitive behavior therapy requires the patient’s voluntary participation. But what ten or eleven year old really does anything voluntarily, let alone anything as horrifying as exposure therapy? Jesse agreed to it because I told her it would help her. She didn’t have the means to evaluate my promise and make an educated choice.

So we hit Rogers for almost two months, and then we took a break. The initial therapy seemed to help. Jesse was able to use her competing response, do some deep breathing, think things through a little. I guess she was more in control. I guess she was happier.

Or maybe not, but whatever. We were motivated. I was, anyway. We were going to break through the wall. With enough hard work, Jesse could beat the SBMI, she could be the boss of her inner demons, she could win the battle with OCD and Tourette’s and anxiety and depression and abysmal self-esteem.

* * * * * *

After the Rogers stint, we enjoyed a couple free summer months, including a trip to the ocean, and then it was back to Rogers in late August. The plan was to give Jesse a few more weeks of intensive therapy with familiar faces, before she returned to school — sort of a tune-up, right?  But when I called the week I was supposed to call, the hospital intake lady gave me a song and dance. We don’t have space to get Jesse in as planned, our program is full. I mean, we didn’t save a space because the staff you worked with forgot to tell me to save a space. No I didn’t mean that, I mean that staff think it would be better for Jesse to come back later so her treatment can overlap with school.

Oh.

But what choice did we have? We couldn’t just barge in. We went back when they said we could, which gave us just six therapy days before school started. We were returning to this distant Rogers location, with the horrible one-hour commute in each direction, for continuity of staff. But on our first two days, Jesse’s original behavior specialist was on vacation so we worked with a stranger (who happened to be delightful, but then we never saw her again). The psychologist was a no show until week two. The nurse was someone else as well. The case worker saw us walking in on our first day and made a face I’ll never forget, as she rushed off away from us with nothing more than an “oh hi” over her shoulder. It was an expression that was somewhere in the zone between “you’ve got to be kidding me” and “oh shit they’re back how long can I avoid them?” And in fact, she managed to avoid us almost entirely for our first week.

Therapy did not go well. Jesse was enraged, miserable, tortured. Staff kept telling us Jesse wouldn’t be allowed to do group activities with other program participants until she could show better self control, because we needed to be “sensitive to other patients’ needs.” So we worked best we could, alone in the tiny cubby room we were assigned to. Jesse hated it. She resisted. She refused to comply. She refused to do. She screamed, hit, spit, and hid behind a wall of rage.

We kept hearing about other patients’ needs. One day, Jesse finally screamed at me, “Am I in jail here?? Am I just in prison and I’ll never be allowed  to see any of the other kids??”

She was right. I marched over to the office where the behavior specialist and case worker hid. The case worker looked at me with her “I’m being a listener” face and her “I’m being sympathetic” eyebrows, which by now were among the most irritating inputs in my days, and said the magic words in her “I’m a thoughtful and sensitive expert but you’re not” voice:

“We need to be sensitive to other patients’ needs.”

It goes without saying that I was already sensitive to other patients’ needs, because when Jesse is trapped in tic-land, she tends to yawp and screech racist and sexual content that would make even Donald Trump cringe on a good day. I didn’t need to be reminded of it every day by this woman, who hadn’t even had the decency to greet Jesse with any warmth, let alone in a civil and polite manner, when we first returned to therapy. I lost it a little, so I don’t remember my exact words, but what I recall saying is this. I told them I was acutely aware of other patients’ needs, BECAUSE THEY KEPT REMINDING ME EVERY DAY as if I didn’t already get it. I reminded them that the reason we were back at Rogers was to prepare Jesse for school — to be around other kids, not hidden away. So if their obligations to other patients meant they couldn’t treat Jesse for what she needs, then they had an ethical conflict that they needed to disclose to me, and I never needed to bring her back.

They responded in the few days that followed. They allowed Jesse to be around the other kids in the program a little more. But they’re human beings, and it was pretty clear to me they didn’t like what was going on, they didn’t like Jesse being there, they didn’t like it one bit, any of it. I asked the medicating doctor to change Jesse’s SSRI. He refused again, and instead we added clonidine, a BP med that’s commonly used to treat tics, and I found myself swimming in frustration.

We discharged after just three weeks. The case worker acted put out. But as far as I’m concerned, she had no clue what was going on with Jesse. She hadn’t paid any real attention. She hadn’t put any careful thought into Jesse’s treatment or needs, as far as I could tell. The letter she wrote to Jesse’s school was so badly written, so last minute, so incomplete that it was practically useless. She asked me if I wanted to suggest any revisions. I decided that the only honest response — “New sheet of paper” — wouldn’t be received well, so I held my tongue.

Our behavior specialist was nice enough about Jesse discharging early. He earnestly didn’t like seeing a child as miserable as Jesse, as full of self-loathing and failure. And he told me he had learned a lot from us, he does from all the patients he works with.

And that was one of those little moments. Something quiet went “ding dong” inside me. Because I didn’t understand why this person thought it mattered to me, that he had gotten anything out of working with Jesse. I thought what we were doing was about her. 

It occurred to me that Jesse’s failed experience at Rogers could be viewed as a failure for Rogers. Would it affect their statistics? Nah. They’re an OCD clinic. They decided she has Tourette’s and that she was non-compliant. That last bit: that made her failure her own responsibility, not theirs. The power to declare what the problem is can be convenient that way for large institutions.

* * * * * *

While Jesse was wading through the wreckage of her misery at Rogers, she was also starting fifth grade. It did not go smoothly. We had a team meeting to get things set up, but there were hitches and glitches and thises and thats. And Jesse’s tics were on a roll, terrifying and transcendent, like Donald Trump and his children.

Because of Rogers, Jesse only went to school for a short day. She left just in time to miss all the fun stuff — gym, art, tech art, that kind of thing.

News flash: she did not like school.

And also she was really, really tired. She was falling asleep at her desk. She was telling everyone how tired she was. I explained that the clonidine and SSRI were probably making her sleepy. Rogers staff assured me that effect should pass soon. So we waited for it to pass.

Meanwhile, Jesse was terrorizing everyone, as far as I could tell. She refused to follow directions. She screamed at her special ed aide and spit on her and lashed out at her. I was eventually told in a team meeting that the real issue was that Jesse was being defiant and non-compliant. The message was clear to me: everything that’s going on right now is Jesse’s responsibility. It’s on her now.

* * * * * *

While we were rounding out our lovely Rogers experience and crushing it at school, we also decided to pursue therapy through a new Tourette’s clinic at Marquette University. We figured, they don’t seem to know if Jesse has OCD or Tourette’s or both, so why not come at it from all angles?

But working on Jesse’s tics is a messy business. They’re complex tics, not simple tics like a cough or a neck jerk. They’re word strings joined with body twitches and responsive behaviors. And of course, some of them arise out of obsessive thinking and some of them are just her being a rude kid. (Because all kids are rude sometimes.)

It was pretty clear early on that the therapist we were going to see at Marquette (let’s call him Tic Man) was scratching his head over how best to work with Jesse. Still, we started with basics.  Behavior chart. God, how I hate behavior charts. I hate them so bad. They’re nothing more than performance improvement plans, PIPs, and every HR person can tell you that by the time an employee is on a PIP, there’s usually no hope. And behavior charts have never worked for Jesse.

But the therapist said to do it, so I did it because, because… because I don’t know why. The goal was to get Jesse to do her exercises and practice competing responses and yadda yadda, when she was told to do them, so the number one item on her behavior chart was “Do what you’re told, when you’re told to do it.”

Mm.

It really didn’t make a difference. At Marquette, Jesse refused to participate in therapy, just like at Rogers. She whined and complained and yelled and refused and fought about it. Tic Man had spoken with Rogers’ OCD People, and I quickly inferred that they all concluded Jesse is defiant and non-compliant.

After a handful of visits, Tic Man decided we were getting nowhere and wasting time. He wanted to work with us, he wanted to be able to help Jesse, but it wasn’t happening. He suggested we see a specialist on oppositional issues and defiance. I didn’t know they existed. He promised to find me referrals.

The failure was, once again, Jesse’s responsibility.

* * * * * *

While all of this shit was going down, Jesse got sick. After missing a few days of school, I took her to the pediatrician and learned she had pneumonia. We treated that with an antibiotic for a week, to no avail, so then we started a second antibiotic that did the trick.

Meanwhile, I was planning to take Jesse to a new psychiatrist for med management, a woman who has a big interest in PANDAS and PANS.  “Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.” That’s PANDAS.  And then “Pediatric acute-onset Neuropsychiatric Syndrome.”

Basically it’s this: some kids, when they get strep, also experience a bad and sudden onset of Tourette’s and OCD symptoms, psychosis, other bad stuff. PANS is sort of a lesser version, I guess. PANDAS minus the “duh,” as my friend Nancy says. I don’t know much about it all. Something about brain inflammation and auto-immune issues. I didn’t expect Jesse to have either of these disorders, because her SBMI has been around since her infancy, but I anticipated that this psychiatrist would have a larger-than-average experience with treating kids with Tourette’s and OCD because of her interest. Since medicating a child with psych meds is little more than throwing darts at a blank wall (there are no controlled studies on efficacy in children), experience is the best metric I can look at.

The psychiatrist, consistent with her desire to explore all possible explanations for Jesse’s current state of affairs, ordered a massive panel of blood tests. Massive. When we went in for the blood draw, the phlebotomist (I love that word) filled six or seven vials. I think it was something like 25 separate tests.

I could go on and on about the various results, including the fact that Jesse was on her first round of (failed) antibiotics when her blood was drawn, so she was walking around with an active case of pneumonia. But I’ll focus on the really important part: Lyme disease. The bloodwork came back positive for Lyme disease.

So, while Jesse finished off her second round of antibiotics for pneumonia, she also started three weeks of yet another antibiotic to treat Lyme disease.

We have no idea how long Jesse may have had Lyme disease. Maybe it was two years, and we’ll suddenly wake up and discover that her tics have disappeared because they were all caused by Lyme disease!

Not likely. Jesse’s SBMI has been going on for a really, really long time.

More realistically, maybe Jesse has had Lyme disease for a few months. Maybe we mistakenly ascribed her fatigue to her psych meds, when it was actually being caused by Lyme disease and pneumonia. Maybe the fever during her bout of pneumonia was also the fever of Lyme disease.

* * * * * *

I’m not being chronologically precise here because I’m too lazy to go check the calendars, and it doesn’t really matter all that much. The critical thing in this long-winded story is this: during the time Jesse was refusing to participate in therapy and terrorizing everyone at school and acting like a real wanker, she was suffering from untreated pneumonia and Lyme disease.

We didn’t know it at Rogers, but by the time school staff and Tic Man were telling me Jesse needs to work on compliance and defiance issues, they knew all this. The fact that my daughter’s body had been under infectious attack for at least two months didn’t seem to factor into their thinking, as they evaluated whether she has a defiance and non-compliance problem that requires professional intervention.

That really bothered me.

I had been chafing at the idea that Jesse is so oppositional that it’s defining her experience.  Tic Man’s proposal that we see an “expert” on compliance was sort of a last straw. Something about it rubbed me wrong after I pondered it for a day or two. I wasn’t exactly incensed, but this is what I felt: “I am sick of this shit.”

I am sick of swimming in therapy and behavior mod tools at school. I am sick of Jesse’s entire life being about her tics and OCD and anxiety and therapy. I am sick of therapists who deconstruct her into little dime baggies of behaviors to attack, and who lose sight of her wholeness in the process.

I don’t want to do it anymore, because it’s making our family’s life suck in all new ways.

And if I’m sick of it, I can only imagine how Jesse feels.

I called Jesse’s long-time therapist, Dr. Abrams. We had a lovely chat. He pointed out that he works with oppositional kids all the time. I already know how to deal with oppositional behavior, because we’ve been doing it all along, for years — positive reinforcement, rewards and incentives, blah blah blah.  We made an appointment for Jesse to see him. We agreed that he and she would just talk — not practice competing responses and breathing techniques, not try to trigger obsessions and practice control, but just talk. About Jesse.

I reconsidered the behavior chart. How in the world did I get to a place where I would actually try to incentivize my child to “do what you’re told when you’re told to do it”? That is ridiculously disrespectful. I don’t run a prison.

If someone told me that’s the most important thing for me to do? I would have two words to say in reply (ahem): “Fuck you.” I wouldn’t even add, “pardon me.” And then I would proceed to never, ever, ever do a single thing I was told to do.

I spoke with Jesse’s teacher, who told me she doesn’t think Jesse is particularly worse in the non-compliance arena than any other fifth grader. She told me Jesse seemed to be developmentally pretty normal on this front.

I’ll tell you, any time anyone tells me Jesse is behaving in a developmentally normal way, I see celebratory fireworks. Even if the behavior is negative, that is really good news to me.

I went out to breakfast with my friend Nancy, a wise woman who frequently agrees with me. Confirmation bias is important in times like these. She told me a story about an early intervention tactic she had been talked into for her young son. She tried it for a week and realized it was crazy and punitive and all wrong, so she quit doing it and explained to the therapists why it wasn’t working. “The parents are being non-compliant.”

Nancy and I chattered about what we want for our children. In the course of our conversation, she said, “Maybe what Jesse needs to be working on is… joy.” I worked really hard not to cry.

* * * *

I’m ready to be non-compliant too for a little while. Jesse definitely needs behavior therapy in the years ahead, but I’m going to give her a vacation from it for now.

She labors under the constant weight of OCD, Tourette’s, anxiety, depression, and self-esteem that runs as low as the Mariana Trench, and then the universe added pneumonia and Lyme disease to the mix. She’s spent three of the last seven months in intensive out-patient therapy. She hasn’t made a new friend her own age in at least two years. She humiliates herself at school every day, even as she’s haunted by a timer and an aide. What she thinks about most, every day, is what’s wrong with her.

I chatted with my brother Mark recently while we were visiting in California. I was telling him how hard it is to deal with all this stuff. “I want Jesse to get better, but I don’t want her to go through life feeling like there’s something wrong with her, like she’s…” I wasn’t able to find the words, but Mark finished the sentence for me.

“Broken.”

My heart squeezed when he said it. There was empathy, understanding, compassion, a knowing sadness in his voice. Why wasn’t I hearing any of that from all the adults treating and supporting Jesse?

Maybe the problem right now isn’t so much that Jesse is being non-compliant. Maybe the problem is that the adults around her are being non-compassionate. Maybe she’s sick of having an aide follow her all over the school, barking orders at her. Maybe she’s sick of having her school days defined by the blessed timer she wears on her ankle.  Maybe she’s depressed by not being able to eat in the cafeteria with other kids. Maybe she hates her life more than a little, because of the crazy shit that comes out of her mouth every single day, thanks to Tourette’s. Maybe she hates exposure therapy, because it just hurts too much inside to do it.

Maybe she’s sick of feeling broken.

Maybe her defiance isn’t about being rude, but about trying to tell us something that we’re refusing to hear.

That’s a lot of maybe’s.

So I’m going to spend some time trying to listen. Get past the maybe’s, just maybe.

Somewhere along the way, all the therapy and the techniques and the interventions made me stop listening to my child, made me stop treating her with the dignity that is her due as a human being. The doctors and experts built a wall between us, even as I thought they were connecting us in a journey to recovery.

So we’re going to step back from therapy for a bit. We’re going to let Jesse’s body heal from the infectious attacks. We’re going to hunt some joy for a change. We’re going to hunt for our whole child.

Imperfect, but unbroken.

Once we find that, we’ll head back to therapy and see what we can do about the rest of it before she drives us crazy.

 

 

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5 thoughts on “The road not taken (well I’m taking it now, so back off)

  1. “Maybe the problem right now isn’t so much that Jesse is being non-compliant. Maybe the problem is that the adults around her are being non-compassionate.” MY THOUGHTS EXACTLY!!! Jeez, your family has been through hell and back. All of the best wishes for a compassionate holiday season. ❤

  2. I feel your pain and share your frustration. We must live in the same area as Rogers is all too familiar for our family we well. Keep hangin’ on.

  3. Yes! Yes! Yes! Golldangit a thousand times YES! You nailed everything I feel. Every. Damn. Day. And Rogers, pfft. We were forced their during a suicidal incident and I found the case worker to be completely lacking.

  4. Pingback: psycho killer, qu’est-ce que c’est (on the joys of a medication cocktail) | grumpy for no reason

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