Odds and Ends

First things first, I just drank what has to be the most disgusting smoothie on record.  I’ve been stressed a fair bit lately so I’m trying to increase my nutrient intake.  A kale smoothie sounded like just the thing.  I’m really regretting it now.  One word: NASTY.

We’ve had a lot of activity around here lately now that school is out.  I posted recently that Dr. Awesome was concerned that Grace was showing signs of some kind of neuromuscular problem largely because Grace has trouble swallowing.  She also has a tendency to slur her words.  On top of that, Grace’s gait is, for lack of a better word, “wonky”.  Doireann says that Grace suffers from “duck butt”.  What she’s trying to say is that Grace’s back is arched causing her posterior to extend outward much like a duck’s rump.  So, when she walks her rear end bounces up and down a bit like a duck’s.  This overextension of her spine seems to cause her to keep her legs locked so that she walks from her knees rather than her hips causing her to slap her feet down when she walks.  So, really, she walks a bit like a duck combined with the character of ‘Shaggy’ from “Scooby-Doo”.  It’s positively weird.

I did some research as to what might cause neuropsychiatric symptoms, trouble swallowing, and neuromuscular problems, and, lo, I found this: Wilson Disease.  I was intrigued.  I wondered if the doctors overseeing Grace’s care at any of the facilities Grace had ever stayed in had tested her for Wilson Disease.  I also remembered that a pediatrician at one of the inpatient facilities where Grace stayed last August approached me regarding some of Grace’s lab results.  Her eosinophils were too high.  She strongly suggested that we change her diet.  Grace was already gluten-free, but she contended that casein in dairy products could cause mood disturbances in some children.  I have an ASD child, and the “mood-casein” link was not unknown to me; but, mood disorders and casein? That seemed a little extreme in my opinion.  I remarked that eosinophils were a marker of allergy; it was ragweed season.  Grace was allergic to ragweed.  She seemed very focused on the issue of casein and Grace’s mood.  Keeping the swallowing issue in mind, I found that there is such a thing as Eosinophilic Esophogitis.  I, therefore, asked Grace’s pediatrician to test Grace for Wilson Disease and EE so that we could rule out those two conditions which would allow us to know what steps to take next.  It was also another clarification.  When you have a young child with such a burdensome diagnosis such as a schizophrenia spectrum disorder, people are always looking to explain the diagnosis away.  Sometimes there are other explanations like Wilson Disease.  In this case, however, all of Grace’s lab results were normal including her eosinophils which means that it was her allergy to ragweed which was most likely causing their elevation last August.

What are the next steps? A swallow study has to be scheduled.

Something else is also on the treatment menu: skills training.  What is skills training? Skills training teaches a person how to use what they know in the moment that they need it.  If you’ve ever gone to therapy or read a self-help book, then you’ve probably come across some kind of “how-to” advice:

  • When you begin to feel angry, here are five things you can do to control your temper.
  • When you begin to feel sad, here are three things to tell yourself so that you are not overwhelmed.
  • When you feel your anxiety begin to take over, here are the steps you need to take to stay in control.

Well, it all sounds so good when we’re calm and in our happy place.  Skills training represents that space between the rubber and the road.  A therapist hangs out in your home with you and intervenes when you begin to need those five steps and shows you how to use them in the moment.  Skills training is the implementation part of the process.  The field work, if you will.  It’s exactly what Grace needs.  Hell, I think we all need it.  Skills training is what stops you from telling your significant other that you hate the way they chew their food and, oh yeah, they’re clumsy in bed; it equips you to find your “thinking brain” when the heat is on rather than lashing out with your reptile brain.  I am looking forward to seeing how it will help Grace on a day-to-day basis.

In order to qualify for skills training, we had to suffer through yet another diagnostic assessment (DA) to ensure that it was a good fit for us.  Grace’s case manager recommended it for us, and we’ve been trying to set it up for a few months now.  A woman from the organization providing the services came to our home last week to complete the DA.  She was very nice, and the DA was easy.  We’ve done so many at this point, and I’d already emailed her a tome of documentation.  She just needed to fill in the blanks.  Aside from setting up a start date for Grace’s skills training, something extremely valuable came from this in-home visit.  This woman may have solved one of Grace’s on-going problems for me.

Grace struggles with a strange kind of meltdown.  When she’s faced with a decision that requires her to choose from many options, she usually becomes confused.  She then turns inward, begins saying awful things about herself, and then freefalls into some kind of anxiety or depression-driven cycle that manifests as mood lability mixed with weeping.  She will not be able to speak very much or even tell you what she needs.  It’s very hard to reach her when she’s like this.  This is often the precursor to a mixed state, and this is often when we have to break out the Seroquel (quetiapine) to sedate her.  This happened last week whilst we were out in a public space.  We had to cut our outing short, and I actually heard myself say, “Grace, we have to leave.  You’re scaring the normies.”  Not my finest parenting moment to be sure.  It was like she went from calm and docile to “One Flew Over the Cuckoo’s Next” in 0.65 seconds.  Eadaoin and Milly were with me.  It wasn’t a great afternoon.  What must we have looked like? It wasn’t pretty.

When I explained this dynamic to the woman doing Grace’s DA she listened carefully.  She then said:

“I could be mistaken, but this is what I think is happening.  I read Grace’s neuropsych report.  Usually, a person with such poor executive function and low working memory has a lower IQ.  In other words, they are usually low functioning.  But, Grace is high functioning except that her executive functioning is in the toilet.  In the case of a lower functioning person, if they were faced with decision making and found that they could not decide, then they might have a tantrum and move on.  Grace, however, is of above average intelligence.  She knows that she should be able to make decisions, but she can’t.  She knows that she should be able to function, plan, and remember.  So, in the moment, when she attempts to access her brain’s executive function and finds that she cannot, she becomes anxious.  She then begins to tell herself that she should be able to do it.  She gets stuck on that one thought.  Then, the depression begins to kick in with the negative thinking.  That’s when you lose her.”

This was a revelation to me.  I think that she’s right.  I asked her what I should do for her in those moments.  She said there was nothing I could do.  I should let her go.  Let her freefall and medicate her.  Skills training would work with her on this.  She would have to learn to compensate for her deficiencies as she matured.  She’s only 12.  Let us remember this.  This is hard stuff to master even for an adult.

So, that’s where we are.  In the meantime, Eadaoin decided to try cutting.  She carved a sad face on her thigh and then promptly told me about it.  I called her shrink.  I am working on making arrangements for in-home supports for her through the organization providing skills training for Grace.

My husband also decided that now is the right time to act like one of these:

douche

(credit: Cj de Silva)

We are working on it.  It’s taking time.  Learning to un-douche oneself is more of an art than a science it seems.  I am not enjoying myself.  Not one bit.  But…that’s a different blog post altogether, isn’t it?

You know what is enjoyable though? Watching Henry Cavill for almost two hours in “Man of Steel”.  Aaaaw yeah…

henry01

Decidedly NOT a douche.

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10 thoughts on “Odds and Ends

  1. I can see how having a higher IQ along with the low executive and working memory can cause these meltdowns. She’s a smart girl. She knows she used to know or should be able make these decisions, sees her sisters make these decisions and she gets frustrated and internalizes that frustration. I’m so glad you were validated in how to handle these meltdowns.

    Here’s to a summer full of skill building and husbands learning to be something other than douches.

  2. I’m more liking the final photo than your state of affairs, to be clear. And also your ability to look on the bright side in the face of chaos.

  3. I enjoyed “Man of Steel”. It was a tad destructive – to say the least – but it wasn’t too bad. I’m glad you were pleased with our latest Caped Wonder, MJ.

    • I think anything Nolan involves himself in will be dark and destructive. That seems to be his filter, BUT it was a pleasant evening out nonetheless. I enjoyed the character development in the script and the occasional shirtlessness. 😉

  4. hello

    mark________________________________ > From: mkentdad12@outlook.com > To: comment+pafri2mg7_qjxtxh1y32nu@comment.wordpress.com > Subject: RE: [New post] Odds and Ends > Date: Tue, 18 Jun 2013 22:01:28 +0100 > > swallowing is very common problem with aspergers. I AM A ADULT HAVE > ASPERGERS AND > SWALLOWING PROBLEMS… I TAKE PART IN A LOT LOT RESEARCH FROM UNIVERSITIES. > > if you would like too e.mail me please do mkentdad12@outlook.com > > mark > > ________________________________ > Date: Mon, 17 Jun 2013 22:17:16 +0000 > To: mkentdad12@outlook.com >

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