gansje: (Gansje)
A while ago I realized that unless I spend a little time each week with my therapist, I'm not going to be able to maintain my own sanity in the face of all the stresses I've been under: over-work, worry about finances vis-a-vis Adam's college costs, Jo's OCD (which is much better this week, thank God!), and some things that had been challenging to L's and my relationship. It's all too much at once. So finally, after a few scheduling misses, I went back to see D. after a year and a half.

She's an excellent therapist, though she mostly just listens and lets me make my own connections and discoveries. For the first fifteen or twenty minutes, I just filled her in on how everyone was doing, and we slid into talking about Jo and what CBT exercises she and I can do together. She suggested that since Jo is so active, we act out at her strange thoughts together -- punching them at the end -- and since she's artistic, we draw her fears and then crumple the pictures up and throw them away, or we sculpt them and then mold them into happier figures. D. is great.

Then she sat bolt upright, which is D.-speak for, "warning, changing topic," and said, "All right. What are you going to do to take care of yourself during this time?" This, honestly, is what I was there for, but it was still a bit of a shock to have to think about myself instead of trying to puzzle out how to manage the latest crisis. What AM I going to do to take care of myself, anyway?  Hm.

It took her the remainder of our session to pull it out of me, but we landed on a plan. One hour of every day will be all mine, apart from everyone else, inviolate. I am to leave the house (weather permitting) when I need to, and while I'm still awake enough to be productive for myself, instead of spending all my productivity on work and at home with the kids. We decided -- I decided -- that I'll spend 30 minutes of that hour exercising, and then I'll go to Starbucks or some other coffee shop to nurse a cup of tea and write.

So welcome to my first writing half-hour. I started a poem, but I haven't written one in almost three years. The opening lines were too flawed to keep, so I landed here, but at least it's a start. I have to remember that I'm not writing to produce art right now. I'm writing to reacquaint myself with the act of writing seriously -- with contemplation and the art of finding something to describe in stillness. I should also reacquaint myself with the art of not starting out paragraphs with the word, "so." Just sayin'.

Before I sat down to write, by the way, I danced. Jo and Henry are with bio-mom, Adam is with bio-dad, L was working out downstairs, and there's about a foot of snow outside, so dammit, I danced all the hell over the living room to some sultry jazz. Oh yes. I think I can do this. Well, I can dance, anyway. And if you like, please give me a writing prompt! Maybe I can get this writing thing off the ground too.

Thank God.

Dec. 16th, 2013 10:34 pm
gansje: (Me)
I took Jo to the (fabulous, love, love, love her) psychologist today, and she let me stay in the session because I'd called ahead to strategize; I didn't want Jo shutting down over fear that Dr. Lipshutz was an alien replica, so I asked to sit in on the session as long as Jo was comfortable having me in the room. I wanted her to feel safe and protected.

Jo did marvelously through her session and told Dr. Lipshutz everything that's been bothering her, answering her questions freely. And Dr. Lipshutz, for her part, was amazing, never once looking nervous or concerned, which reassured Jo that she was just Dr. Lipshutz and nothing but. She was warm and kind and inscrutable. L said tonight that he would not want to play poker with her, and I heartily concur.

Overall the whole session made me feel infinitely better: it turns out that Jo hasn't exactly been seeing the words she claims to have seen, but is picking them out of shadows and reflections, not unlike the way we lay back in the grass and try to find out images in clouds. This, apparently, is the difference between hallucinations and visualizations driven by intense anxiety/panic. Jo also admitted to "rule following," which starts out as a belief such as, "If I don't eat all my dessert, I'll go to hell." This leads her to finish her dessert even if she's full from dinner, which relieves the feeling of anxiety, and then reinforces the anxiety and the behavior (and which we absolutely don't want on any level). So there we have the "C" -- and with this and the set of beliefs and fears Jo was describing, it became very clear to Dr. Lipshutz that it's most likely OCD, related to puberty and intensified, awfully enough, by Jo's asthma inhalers, which we knew can cause anxiety, but not in this way, to this degree. We have a very nice choice: breathing or a bit extra sanity. Nice.

That's not to say there aren't any environmental factors. It also came out that Shasta has been saying extremely hateful things about me again, as well as telling Jo I'm not L's wife, but his girlfriend, which is very confusing for Jo. This could be causing her added stress, particularly as Shasta has also been mocking me and encouraging Jo in doing the same (such as encouraging her to laugh at me, and discrediting her fears at my expense). This same behavior caused Jo insomnia the last time it went on in earnest, and I can't imagine it's causing any less conflict now. Jo and I are very close and love each other a great deal, and her mother demands her to prove her loyalty and love for her by betraying me. I know from experience that this causes Jo a great deal of anxiety, and can't possibly be helping her. [ profile] lostasia, you called it.

So, the diagnosis: OCD, complicated by albuterol derivatives and Shasta's unyielding need to cling to fury and punish everyone near her for her own misery. Dr. Lipshutz and I sat together discussing next steps for a bit while Jo sat in the waiting room reading a kids' magazine about foxes and worrying that Dr. Lipshutz actually might be an alien and might be abducting me, but I came out and she asked me for the pass-phrase, and all was well. She even did a little happy dance. <3  My baby.

Next steps are to meet with one of the psychiatrists Dr. Lipshutz recommends and probably start Jo on an SSRI, which have been shown to be very effective for OCD. L will take Jo to her pediatrician on Wednesday and see about a different kind of asthma treatment, if possible. And finally, we'll both meet with Dr. Lipshutz on Thursday and learn some CBT skills to practice with Jo at home. The best part: OCD is highly treatable, and with intensive therapy and SSRIs, we'll be on our way to making Jo feel like Jo again. It was a stressful experience and I was worried about what the outcome of today's visit would be, but ultimately it was encouraging and I feel much better about Jo's future.

Unfortunately, the rest of the day was highly stressful too, from waking up to the lovely strains of the iPhone email alert telling me that an old consulting client needed data I analyzed some two years ago. I don't even know where data I analyzed last month is, much less data from two years ago. I knew that given my current schedule and workload (60-70 hours of work a week for the next two weeks), I'd forget unless I found it immediately, so my first bleary moments of pre-coffee wakefulness were spent tracking down, zipping and emailing huge data files. Then Jo called -- she and Henry had stayed with their mother's visiting family over the weekend and Shasta apparently didn't feel like driving past our house on the way to the school (our house is oh, I dunno, ON THE ROUTE SHASTA TAKES TO THE KIDS' SCHOOL) to pick up their backpacks, and Jo was panicked that her mother would be upset, so I drove to the school and dropped off the kids' backpacks. Then I ran back to the house to finish up a recommended study plan, then remembered I hadn't had breakfast and managed to make and eat it, though doing so took approximately 35 minutes between panicked phone calls from colleagues needing help with study planning and data interpretation.

Then I ran to McDonalds and got Jo a Happy Meal so she had a fun lunch and toy and would be full and also happy and might open up more for the psychotherapist. I took her to her session, came home, answered emergency questions about a study design, hopped on a series of client calls, and finished a few more slides for a project on, ironically, asthma inhalers. I didn't have any time to process anything until L got home, and then I admittedly let him have it, because Jo also said that Daddy had told her that I killed her gecko (I accidentally got 10 or so crickets in its cage, which apparently can stress them out -- can we please find a pet for Jo that doesn't match her in its propensity for anxiety?), and Shasta had mocked me for it (she told Jo that maybe the "U Pay" in the gecko tank that she imagined were really crickets arranging themselves into a threatening message for me). So I took my anger at Shasta out on L, which was unfair. We made up, but things were tense there for a few minutes.

We made up, there was beef chili had for dinner and dishes done, and food put away and martinis made and drunk (which is why I can be quite so open about having been awful to L for my own anger) and more slides made. As I said, a stressful day overall. But though I know it'll take us a long time to get Jo's care right, I'm hopeful. She isn't hallucinating, OCD is extremely treatable, and she may not even need treatment beyond adolescence. We caught it early, and Jo trusts Dr. Lipshutz now and was really open to some of her "early CBT" exercises. I think Jo will be okay despite a really miserable disease. If one SSRI is bad for her, we'll find another. And CBT may prove extremely helpful on its own. Finally, we have a great support system, of which you all are an essential part. I, for one, wouldn't have made it through the weekend without you, and I'm infinitely grateful.

gansje: (Me)
Okay, we're getting a plan together.

Today I called both Jo's psychologist and her psychotherapist. Thank god, the psychotherapist got back to us. She spoke to L and said that we should strive at this point to keep Jo as calm as possible, and the ER should be reserved for a situation only in which Jo is unable to calm down and is suffering greatly, or if she is in danger. She also doesn't like the way the ER's in our area handle child/adolescent mental health intake -- they would just give her Risperdal and refer her back to her provider (Dr. Lipschutz, the psychotherapist, to whom L spoke) or they would admit her, which is terrifying and triggering. The earliest she can meet with Jo is Monday at noon, so I took that appointment. She then gave us the names of two psychiatrists who she thinks are fantastic. However, the most fantastic cannot see us until January, so he provided us with the names of 5 other psychiatrists he thinks are equally fantastic. I explained to my immediate supervisor, who is a decent human being with 4 kids and most of a PsyD and a Master's in Clinical Psychology what was going on and he gave me a secret day off on Monday. This means I can devote Monday to calling all of these doctors to find one who can see her. This leaves us without treatment over the weekend, though, so Dr. Lipschutz (who was so goddamned comforting to us both over the phone, god) told us if she is very distressed over the weekend, we are to take her to the ER. I plan on the ER at Children's Hospital of Philadelphia, because they're just amazing over there at pretty much everything, and are responsible for other Jo miracles, like clearing up her eczema, and Adam miracles, like helping me through his Asperger's rages. But no ER unless things are very, very distressing to her.

Being a behavioral researcher and unable to leave alone, I found the following extremely comforting article: You can read just the abstract and the discussion section. It helped us feel better a lot, especially since Jo has no other features of schizophrenia. Even if this is an early sign, catching it early like this means much better outcomes. And it may be freaking nothing at all, as our dearest friend [ profile] flw spent the better part of oh, all morning, trying to tell me. But it could be a feature of anxiety and thus incredibly treatable. I really hope so.

And I cannot wait until this fucking horrible year which has come along with so much tragedy and bad luck for us and those we love so much is over. Oddly, just a few days ago I looked at the calendar and thought, "just a few more weeks -- I wonder what the fuck else can 2013 deliver?" Now I know. Good lord. Fuck you, 2013.
gansje: (Me)
It has been one hell of a night. And it's just keeping on being a hell of a night.

We put [ profile] emmabovary's idea to work (thank you!!! <3) and selected a password with Jo. Jo decided on a pass-phrase (which I should keep to myself in case she ever questions if I told it to anyone else) and then she needed me to use it not two hours later. She also went to the psychologist (the rotten one, but at least there was some therapy of some kind) and reported when she came home that she now thought the psychologist was an alien because while Jo was telling her about her thoughts and beliefs, the psychologist had a "weird look" on her face. I explained that she probably had a look of concern for Jo. Whenever someone makes an unfamiliar face now, Jo immediately suspects them of being an alien.

At bedtime, she lay down in her bed while I started storytime, and then she looked over at the tank that (used to, prior to its unfortunate expiration) hold her gecko. She asked me if I saw "U Pay" written in it. At first I thought she was seeing letters (from the titles of two books behind the tank) magnified in the glass, but when I went to look, I couldn't see anything at all. She was scared of it, and I moved the tank. Then she told me that she'd seen the words, "kill Jo" in her mother's car's rearview mirror on Monday (thank you, Shasta, for not telling us, good lord), and the word, "Die" written in our basement (she said that Lawrence had seen it too and thought that probably another kid she plays with had written it for some reason). She also told me that she'd seen a sign outside SuperCuts when I took Henry and Adam for their haircuts last month. The sign said, "You're Next," and she believed it referred to her imminent demise.

I rubbed my face, thinking, "God, please don't let this be child-onset schizophrenia," whereupon she said I'd never made that face before and demanded the pass-phrase.

She also has a rather juicy cold and is coughing a lot (we just gave her cough medicine, so here's keeping our fingers crossed she sleeps through the night) and she asked me just before I ran downstairs to tell L we have a problem, "If I get scared in the middle of the night, can I wake you up to sit with me?" Which has been a behavior we thought had finally passed last year. What Jo means by sitting with her is sitting in her room while she takes several hours to fall asleep and then several more after she wakes when you tried to tiptoe out. Which, given our current needs for sleep and my current mental state, is very bad. She's already woken once and L sat with her from 10:30 - 11:30.  I know more is coming and I'm taking that shift so he can sleep -- he has a meeting in Princeton tomorrow and needs a lot of solid sleep.

Guys, I'm scared. I'm really scared. Can I wake you up in the middle of the night to sit with me? 
gansje: (Me)


Lawrence says that he has never seen this movie. This will have to be remedied.

So, life feels a little like this right now. As you all know, Jo has always been a very anxious kid. For the most part, though, her anxiety has been centered on rather rational fears and concerns, like, "Will mommy be able to take care of herself?" and "I want a dog SO BADLY, I HAVE TO HAVE A DOG, WHEN ARE WE GETTING A DOG?"  Kid concerns. Perfectly normal, but for the intensity and duration of the fear, and consonant with standard old, garden variety anxiety. But over the past months we've seen a shift in the content of her fears and the intensity of the accompanying panic that is frightening. First, a few months ago while on Youtube, she saw a chain letter someone had pasted into a comment that said that if the reader didn't pass along its message immediately, then in 266 days, the reader's mother would die. Jo became extremely anxious and couldn't stop thinking about this chain letter and its supposed consequences. She said that the intrusive thoughts happened constantly, but over the course of two to three weeks, she seemed to let go and be happy Jo again.  At the time I was very concerned about OCD, but the psychologist assured me that because there was no compulsive behavior accompanying these obsessive thoughts of her mother dying as a result of a chain letter, her fears could be chalked up to simple anxiety. And honestly, excepting its intensity, I saw Jo's fear as being completely normal for a kid her age.

But on Thanksgiving she said that she was scared L and I were really aliens, and since this Friday night especially, the intense fears have come fast and furious. Frighteningly, they are increasingly less age appropriate and more OCD-like. "Ellyn, I'm afraid that you and Daddy are aliens and the real you was abducted, and I'm scared because I'll lose you," and "I'm worried that my food is poisoned," are her latest fears. At first I tried telling myself that maybe Shasta told her that she's trying for additional custody and maybe that was so unsettling to Jo that she's expressing her fear, but since she can't really handle the idea that she's scared of being with her own mother more often, the fear is coming out in this very freaky, "aliens abducted you and replaced you with other aliens who look just like you" way. It would kind of make sense. But then she started with being afraid to eat her food and offering it to us to taste it for her (thank you, Jo, for using us as your tasters -- sigh). That is just pure OCD, right. there.

So we're calling the psychotherapist (not the psychologist, who didn't think this was OCD) tomorrow and hopefully we can get Jo the care she needs without Shasta blocking us.

Part of me feels very calm about all of this. OCD is very treatable. We have a dear friend who has it, and I just learned from a work colleague that his wife has OCD. These are two successful, smart, lovely and loving women, and while the condition plagues them more rather than less at times, they both cope well, and it's certainly not the end of their ability to function happily and well in the world. Honestly, if I could choose someone for Jo to be like, I'd happily choose our friend with OCD. I know that once we all get over our hesitation to put Jo on appropriate medication (L, Shasta and I were ALL very hesitant to start Jo on an SSRI for her simple anxiety disorder alone), Jo will be just fine with a combined CBT and SSRI approach.

The other part of me is deeply upset. Jo comes to me to tell me all of these fears, and she tells them to me for hours at a time. She knows they're bizarre but she can't be reassured at all. As I told L, I'm VERY glad she comes to me with her terrors and tells me about them -- it would be horrible for her if she hid them from us, and we'd never be able to get her the help she needs unless she did tell us. But it's also very triggering for me, and my own anxiety (which often has me feeling quite irrational) is through the roof. I'm scared for her. I'm scared for us. And her fears are so dark and strange for an 11 year old girl that it seems like reality is bending. When she tells me these things, I feel like I'm falling through a swirling vortex, entering the Twilight Zone, where dolls tell you they're going to kill you, or little girls get lost in other dimensions behind walls and floorboards. Honestly, I am terrified of the things she tells me, though I certainly won't stop her and I will continue to encourage her to tell us when ANYTHING is bothering her. Because over the past few days even very simple differences in day-to-day things will trigger her (she became terrified that L had been replaced with an alien two nights ago because he'd been smiling -- we had just snuck in a quickie while the kids were downstairs, and then just as we finished, there was Jo knocking on the door, and he had a post-coitus look, so boom, alien fears) I'm afraid to do anything different at all, lest it trigger her fears.

And I'm ashamed to admit it: I flinch inwardly every time she comes looking for me, because her thoughts upset me so deeply, and just as she talks about wolves or animating in her Aspie way, which is to say on and on for hours if allowed, and without understanding when other people can't take it anymore, she goes on about us being aliens to the degree I want to run away. But of course I don't: she needs me to talk to about it, and I need her to tell me what's going on in that head of hers if we're going to get her the right treatment and know it's working. But this unsettles me so badly. I don't want her to have OCD. I want her to have a nice, happy, uncomplicated life. This is all frightening and unfair, and insofar as it dovetails with my own deep-seated terrors about my own anxiety getting out of control, it's incredibly nervous-making. I also am just beside myself at how kids ALWAYS seem to reserve illness -- even mental illness -- for holidays and weekends. It's been a terribly long weekend. Right now she's acting as calm as can be, zooming all over the house in her way, making very beautiful things with the sewing kit I got her for Hanukkah. Why this now? Why Jo?

Sorry for the sad post, guys. Everything else is really, really good. My work is great -- more on that later. Henry is his own happy self, and Adam got admitted to his two safety schools, and we're just waiting to hear on Texas at Austin, Berkeley and UC Davis while he preps his applications for Case Western, Wisconsin at Madison, and Michigan. Just, right now, Jo's thoughts are towering over everything else and things feel a bit dark. 


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