The Time Warp

I can’t believe how long it’s been since I posted here.  It’s the endless summer days, I think.  Some sort of time warp has been created, and there are moments I don’t even know the day, date, or month!

Well, skills training is finally underway.  That required some sort of miracle.  The county is actually paying for this service, and I’m eternally grateful for that.  It would be so costly otherwise, but the downside to receiving county services is dealing with the county.  They move at a snail’s pace, and I think they’ve created their own dialect over there that only a few people speak and understand.  I would get frustrated over the many weird misunderstandings that have occurred between me, the counseling agency providing the skills training, and the county, but there is no point.  Weird paperwork mishaps always happen when dealing with government agencies.

So, what is skills training? Well, I’m still trying to figure that out.  It’s taken almost a month to come up with a treatment plan for Grace.  I know that there are other children and teens in the world with schizophrenia spectrum disorders, but there aren’t many.  This hits home every time I sit with a clinician and discuss strategies for effective treatment.  They all sit back, look mystified for a minute or two, and inevitably say, “What do you think?” I used to say, “Isn’t that your job?” A year into our new reality, I see that I know more about Grace than the clinicians, and most clinicians don’t have a ton of training on schizophrenia spectrum disorders.  I’ve spent a year reading scholarly articles and research documents regarding schizoaffective disorder.  At this point, I can bring something to the table when it comes to discussing what Grace needs.  Collaboration is a beautiful thing.

So, what might a child like Grace need in terms of skills training?

Executive functioning is a huge problem for kids with bipolar disorder and schizophrenia spectrum disorders.  In fact, it’s possible to trace part of their anxiety back to deficits in executive function and working memory.  Treatment plans often read like IEPs in that the language is written like: “Grace will learn one to two new coping skills a week to increase her self-soothing and coping.”  If a child has poor working memory, however, how will they learn one to two new coping skills in one week? This applies to children with ADHD as well because executive function and working memory are often a problem for that cohort, too.  Helping clinicians understand that schizophrenia spectrum disorders are neuropsychiatric in nature wherein white matter might be decreasing is important because the point of skills training is to increase functioning in the context of ongoing loss of function.  Simply knowing this key bit of information has made a huge difference in how Grace’s treatment plan has been written and implemented.

Social skills training is also a part of Grace’s treatment plan.  I have observed some losses in this area, and I’m not sure if it’s due to cognitive impairments caused by her disorder or the issue of Grace now having a “new normal”.  Perhaps it’s a combination of both.  When girls get together to talk about bad days, what do you suppose a pre-teen girl will discuss? Well, Grace is wont to discuss the days when she hallucinates and hears things.  That’s her definition of a bad day.  This deviates from the norm for almost everyone in her social circle.  Knowing what to discuss, when to discuss it, and with whom is all part of having good social skills as well as psychological flexibility.  Psychological flexibility is the idea that we can contain our affect to match the social setting.  For example, if I just found out that my boyfriend was cheating on me but I was still at work and heading into a meeting with the CEO of the company, would it be appropriate to display exactly how I felt about my boyfriend and his unfaithfulness in that moment? No.  I would need to contain my affect and text a girlfriend something like this: “John is a cheating bastard.  Meet me for drinks posthaste at The Dirty Sanchez!” I would then go into the meeting appearing professional and ready to discuss whatever is on the agenda.

I think that under the header of social skills training is the issue of affect congruence.  This addresses the issue that many people with schizophrenia spectrum disorders have.  Their affect does not match their inner state of mind.  They often appear flat and drawn.  This has become true for Grace.  The goal here is that her outer affect should match how she feels.  If she is sad, then she should look sad.  If she is feeling contempt, then she ought to look contemptuous.  If she is happy, then she should look happy.  Keep in mind, affect congruence is something that also affects people with Axis II diagnoses.  The same could be said for affect containment.  This is why it can be difficult to get a proper diagnosis.  In the beginning, one might leave a clinician’s office with an Axis II diagnosis rather than an Axis I diagnosis.

There is also a goal on Grace’s treatment plan that addresses organization and task completion, but this relates to executive function and working memory.  It starts to become very clear just where the deficits lie when one breaks down the skills and what needs to be addressed.  Grace can’t be given a task with more than two steps.  She won’t remember the third step.  This is due to deficits in her working memory.  People with ADHD often have similar issues.  Grace only has 3% available working memory which is stunning.  So, part of the skills training is to help grow new neural pathways to compensate for such low working memory.

The beauty of this kind of skills training is that a clinician comes into our home twice a week and works with Grace.  She’s very kind, and Grace likes her.  Her name is Kim.  Kim’s supervisor performed the diagnostic assessment (DA) for Grace, and she was in our home the day after Eadaoin decided to try cutting for the first time.  She made strong recommendations for coming back and doing a DA for Eadaoin, and Eadaoin is now getting in-home therapy sessions twice a week as well.  Eadaoin’s psychiatrist said that her cutting wasn’t self-destructive.  Because Eadaoin was also pulling out her hair at the same time (Trichotillomania), she indicated that both these behaviors were serotonin driven.  She increased her Zoloft (sertraline) to 100 mg.  Eadaoin is also taking 200 mg of Lamictal in an effort to control her cyclothymia.  As soon as the Zoloft was increased, Eadaoin was up all night and very energetic and elevated in her mood.  Some parents might find this alarming, but, compared to Grace, this just seems like par for the course.

Eadaoin does not like the in-home sessions.  She thinks they are weird.  I don’t blame her.  Does anyone really like therapy? It’s sort of like looking forward to a pelvic exam–“Oh, I just can’t wait to feel the scraping sensation of the Pap smear!” No, no one loves to go to therapy.  Eadaoin, however, doesn’t get to carve a smiley face into her thigh and pull her hair out in front of me with no natural consequences.  She gets to go to psychotherapy and get educated on what it means to have a mood disorder and how to live with one.  It’s not punishment.  It’s education and being equipped.  Milly seems to feel slighted by all this in-home therapy.  She exclaimed a few weeks ago, “I need someone to talk to.  Where’s my therapist?” Where’s my therapist indeed.

Here is the most interesting observation to report.  Grace is medicated to the upper levels of all of her medications.  There is nowhere left to go, and in June she was still hallucinating and paranoid.  She was still highly labile.  I didn’t know what to do.  Then, I came across some studies that linked sugar consumption to a rise in depression and schizophrenia (Dietary Sugar and Mental Illness).  We are already gluten-free, but Grace has a terrible sweet tooth.  She spends almost all her money on candy specifically Skittles.  I think she has a secret stash somewhere.  I told her that she was to go sugar-free for two weeks.  No sugar.  I replaced all sugar in my house with organic cane sugar because at least cane sugar has retained some amino acids and minerals.  We don’t drink soda in our house–EVER, and I have always avoided high-fructose corn syrup (HFCS).  Grace agreed to the sugar moratorium.  Much to my elated surprise, Grace improved.  She was the most stable that she’s ever been.  She stopped hallucinating.  Her mood lability improved.  She was as close to her “old self” as I’ve seen her in over a year.  It was amazing.  We challenged this, and she ate some Skittles.  The next day she was moody, crying, frustrated, and hallucinating.  Clearly, there is a link between sugar consumption and mental illness.  I’m shocked.

This summer is proving to be interesting.  I should probably give up sugar, too, in light of this new information.  How on earth will I drink coffee with no sugar? It’s so damn bitter.

Hmph.

Resources:

International variations in the outcome of schizophrenia and the prevalence of depression in relation to national dietary practices: an ecological analysis.

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13 thoughts on “The Time Warp

  1. I’ve given up sugar for 3 weeks now and I feel good! I don’t miss it… Except for in my coffee. I’ve replaced it with vanilla stevia for the time being. But you could try coconut oil… That’s my personal favorite on coffee. Sounds weird but it is delicious. Nutty and sweet 🙂

    • Coconut oil in coffee? Hmmm…I’m not sure. I have organic cane sugar for now. At least it has amino acids and minerals or agave…

  2. Agave is actually worse that HFCS- I just found this out and am so disappointed! Look up what Dr.mercola has to say about it. Keep the cane sugar but don’t do agave. But I promise the coconut oil is delicious 🙂

    • I have not, but maybe I should try it. I just really like a bit of sweetness in my coffee. I look forward to it. It’s such a pleasure, you know? But, I wouldn’t mind trying something new. Thanks for the suggestion, and thanks for reading!! I didn’t know you were over here. 🙂

  3. Great post, as always. I’m happy you discovered that sugar has a big impact on Grace’s moods. Going without Skittles is a difficult habit to break! I wish her luck.

    I don’t for a second think my child has the same psychological/cognitive issues as yours do. Grace certainly sounds as if her issues are atypical and difficult to know how to treat. I feel for you as you try to do the next best thing for your children. I know the internal struggles you face and I’m always blown away by your intellect and knowledge and how you rise gracefully to the challenges that your children present.

    My 12-year-old son is on an IEP for a “neurological disability.” His overall cognitive skills are within the average range (34th percentile) but he has a significant discrepancy with working memory, which is in the 12th percentile. I’m fortunate that the school recognizes his deficits in memory and how that can heavily impact his academic achievement. His IEP states that difficulties may be noted in “attention and concentration, sequencing tasks, organizational skills, rote learning, remembering information long enough to process it for understanding, listening to and comprehending lengthy discourse, taking notes, and memorizing factual information.” He’s entering 7th grade and, as well as receiving inclusion support and special education aides in his classes, he will forego an elective in order to have direct service in “organizational skills” one-on-one every day. I can’t describe how pleased I am about this.

    All of that sounds and looks good on paper but I still worry so much for him as his mother. What else can I do or should I do? Those are the biggest questions I often ask myself. When I read your post about helping your daughter develop new neural pathways to compensate for her disability it strikes a chord with me. I want that for my son and I don’t know if I’m doing all I can to advocate for him.

    It was great to read a post from you and I wish you well! –Fern

    • There’s a book–Smart but Scattered. You can find it on Amazon, and it’s all about educating kids with executive function/working memory issues. It was recommended to us by a friend who received the recommendation from neuropsychologist at the Mayo Clinic. This is where to start, I think. Your son’s IEP sounds so good Also, Smart Games makes all kinds of games that address working memory and executive function. We play those. And Lumosity.com. I can’t say enough about that. Brain games. So much research around that. You can find Smart Games at http://www.smartgames.eu/.

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