Life As We Know It

I realized that I had not updated my blog in quite some time (November 6th? Yikes!), so here I am to update my readership on what has caused this unintentional hiatus.

I’m sure I’ve mentioned it previously, at least briefly, that Angelina deals with multiple conditions aside from diabetes.  Most prominently is her ADHD and resulting issues that aren’t really symptoms of ADHD, but more side effects of ADHD.  Add diabetes on top of that (which often effects cognitive function when blood sugar levels aren’t where they should be) and life gets interesting. ADHD has always been something we’ve struggled with, especially in regards to school.  Now that she’s in middle school these issues have become much more prominent because she lacks a lot of the “executive functions” that really can make or break a kid that is juggling the increased demands of middle school like organization, time management, planning ahead, and really thinking about how their actions effect others.  Social interactions are a big thing in middle school and when you’re lagging behind in all these areas it causes some pretty significant issues.  Of course many kids have issues with these kind of things, but some kids, like Angelina, stick out like a sore thumb.

In November Angelina underwent psychological assessment to try to pinpoint what else is going on.  It was interesting for the first time to have a quantitative representation of her ADHD diagnosis.  She ranks as what is considered “superior intelligence” based on her IQ, which means the scoring system for the tests that were given had to be adjusted to accommodate her higher than average intelligence.  With that information in mind she scored well below average in terms of impulse control (meaning it’s a significant issue) and slightly below average for inattention.  An autism spectrum disorder was ruled out, but she did show significant deficits in social communication.  Doing more research on the subject, Social Communication Disorder is a new diagnosis as of the DSM-V that came out in 2013, and SCD falls under the umbrella of pervasive development disorders, which in previous versions of the DSM was often side-saddled with ASDs.  I found this article of particular interest and it helps me to see why an article that I read a few months ago had me concerned about Asperger’s (which, again, is no longer a recognized diagnosis and falls under the umbrella of autism spectrum disorders).   And here’s an article I wish I had read months ago when I started getting worried about Asperger’s, that discusses the differences between social communication and attention issues versus autism spectrum disorders and how some symptoms may overlap, making differentiation difficult to the untrained person (or struggling parent).

I struggle greatly trying to juggle all of the things that make Angelina atypical.  I’m trying not to use the terms different, weird, difficult, abnormal.  But the truth is: she is different.  So now I am faced with trying to figure out how to advocate for her to receive a “different” educational experience so she can better function, learn, and maybe stand out a little less.  The greatest struggle comes in trying to figure out what is going to help improve outcomes, and what is going to hinder her personal progress as an individual.  We’ve been letting her try to figure things out and hoping that eventually she would catch on that she needs to adjust her behaviors and communication if she wants to “fit in”, but so far she hasn’t been able to make those adjustments on her own.  This is where the “deficits” in social communication come in that I mentioned above.  She doesn’t quite qualify as having social communication disorder because she does understand others communication, she can recognize peoples moods, responses, facial expressions, body language, etc. and what they mean – but the deficits come in when she doesn’t respond appropriately or adjust HER responses, facial expressions, body language, etc. to accommodate the other person/people she is trying to communicate with.  For instance, she can tell when she is aggravating someone, but instead of changing or stopping what she is doing that is aggravating, she continues with her own agenda and expects the other person to adjust to her wants/needs in communication.

A lot of people would call this being a brat.  And I will admit I am one of those people who have labeled it as bratty behavior.  The issue that arises then is that she isn’t doing any of this ON PURPOSE. But once the damage is done she also has issues understanding that she needs to apologize, because she doesn’t recognize that her behavior was damaging.  She ends up with hurt feelings because the other person doesn’t switch to her wavelength.  And sometimes those hurt feelings cause her to lash out, have meltdowns or shut down entirely.  She doesn’t see anything she is doing as broken, so she isn’t automatically trying to fix it on her own.  She sees other people’s responses to her behavior as the part that is broken and expects them to change to accommodate her.  If she didn’t intend to be aggravating, then it’s the other person’s fault they were aggravated, not hers, and she sees them as “at fault”.  If confronted she will argue to the ends of the Earth that she wasn’t being aggravating, because that wasn’t her intention. For most people we would say “I’m sorry if I aggravated you, that wasn’t my intention” but for her it’s simply “No. I wasn’t being aggravating” and she expects other people to understand what she MEANS, even though what she SAYS isn’t always as enlightening, basically expecting those around her to read her mind and her intentions, instead of her words and actions.  And pushback ensues if you try to ask for clarification, or even worse if you simply take her at her word and react in a way other than what she intended for you to react.

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