Monday, August 26, 2013

Blessing and a Curse (and more thoughts on Jacob)

Internet access is one of the many things that makes modern parenting so different than what our parents faced.  I'll admit, it's both a blessing and a curse.  While it's nice to have medical information at your fingertips, what you find can make you crazy.  While parenting blogs and social media can remind you that you're not alone in your current kid issue, I think a lot of it creates a false sense of connectedness and we're less likely to actually connect with real people.  Back in the day, I assume my parents first talked to their parents, doctors, and friends.  And now, I'd have to think most of us hop online to make sure we're not nuts prior to even contacting a doctor, let alone bugging our parents, who probably can't remember mundane details about childhood illnesses anyway.

I have a couple prime examples from this weekend of how the internet can really mess with our heads sometimes.  Saturday night I saw that my co-worker whose son was diagnosed with leukemia had made their Caring Bridge page available for viewing.  I read through a couple weeks' worth of updates to find out the full story on her son, and then stayed up way too late Googling the type of leukemia he has to find out the long term prognosis for that specific type.  Let's just say that the info I was finding was not good.  Granted, many of the studies were a little older, and survival rates for leukemia in general have increased significantly over the past few years, so what I was seeing may not accurately reflect the current state of things.  However, the type he has is very rare.  The main type is seen more often in adults than kids, and the subtype is especially rare.  It's more likely to befall kids with Down Syndrome, and treatment for those kids actually works better than for non-Down Syndrome kids.  Her son does not have Down Syndrome, nor does he have the gene associated with it.  As such, the treatments for this type for "normal" kids generally don't work as well.  They don't seem to know why.  I couldn't find too many real statistics for that group, but one site (again, with older data), referred to the survival rate simply as "dismal".  Ugh.  So, while the internet was helpful in understanding more of what they're up against, seeing those statistics in black and white was horrible.  Lots of prayers are needed for that little boy, no doubt.

The other example has to do with Jacob.  I know I've been talking a lot on here about our struggles with him, and while I don't want to bum everyone out, it's definitely a big part of what's weighing on our minds these days.  I had another episode with him on Saturday morning.  They always start simply enough--often when he's looking for a toy or needing help with something.  And when I can't do it right that second or help him with what he needs, he instantly flies off the handle.  He accuses me of moving whatever he's looking for or purposely not helping him, and immediately flies into a rage.  Name calling, kicking, hitting, door slamming...you name it.  No matter how calmly I try to talk to him, he still loses his temper...and inevitably he will do or say something horrible and (unfortunately) I will end up losing mine, as well.  Saturday's outburst ended up with me physically holding him down so he would stop trying to hit or kick me or destroy his room, which started when I was taking the Legos out of his room after he repeatedly slammed his door.  It did not go well, particularly because I was home alone with him and had no one else to step in as the calmer head.  Luckily Carter was sleeping, but I'm really starting to wonder how much all of this is going to affect him, particularly now that he watches Jacob like a hawk. 

Anyway, after the outburst I needed some time to calm down, and ended up Googling some things online, including bipolar disorder.  I know, it seems crazy.  I used to Google things like ADHD when Jacob first started being a little difficult, and that seemed a little crazy at the time, too...but now his daycare assistant director (who has it herself) has said that she sees some things in him that seem familiar.  And based on other things we see, it wouldn't surprise me.  I don't think he necessarily fits perfectly into all the criteria, but there are definitely some things he does that seem right in line...hence my concern for when school starts next week.  Anyway, I was shocked to go through the list of bipolar symptoms and see a lot of things that sounded very familiar.  Now, understand that I don't think he has the depression side of it, just the manic side, so it's probably not true bipolar behavior.  But like I said, there were some symptoms that I'd never seen come up with anything else that totally fit.  For example, one of them is grandiosity.  It's basically a feeling of invincibility and superiority.  Some people practically think they can fly, for example.  But in Jacob's case, he just thinks he's above the rules, that we are not authorities over him, and that despite what we say, he can do whatever he wants (even though, repeatedly, we win out in the end).  No matter how many times we tried to emphasize the danger of what happened to him with that pane of glass at daycare, he never seemed phased by it...and in fact, we've repeatedly had to remind him not to pound on the glass window of our storm door.  He doesn't care and pretty much insists nothing will happen to him.  Same for playing around on the stairs or paying attention during baseball games.  I know to some degree this is normal behavior at this age, but he seems to take it to a whole different level with his defiance. 

Another symptom referred to inappropriate, ill-timed giddiness.  And, in fact, in the middle of many of our arguments (including Saturday's), no matter how angry or sad I am, he will start laughing hysterically (maniacally?) in the middle of it.  He's completely lacking empathy in that regard.  I've ended up a tearful mess after a few of these run-ins, and he just doesn't seem to care. 

The physical nature of things has really escalated, as well.  He'll hit and kick for no apparent reason, unprovoked and with no real reason.  He thinks it's for fun, but no matter how many times we tell him no, he continues.  I think that may be a part of ADHD, too, in that he needs to be doing something with his body and that's how it comes out.  Interestingly, something I Googled earlier today led me to a link on Oppositional Defiant Disorder, which I remember reading about a while back when I was concerned with his behavior, and now I think it really might apply.  ODD includes a lot of things we've been experiencing with him--the lack of respect for authority, the defiance, and the tendency to want to annoy people for no apparent reason--so who knows...that could be part of the mix, too.

He also has moments that seem a little OCD.  For example, he will freak out completely if he messes up while coloring.  He will insist we need to erase it or get him a new one.  He's also a little weird about cleanliness, which is actually a trait directly from Craig.  When Craig was a kid he freaked out about his hands being dirty.  Jacob freaks out about dirt, and perceived dirt.  He will insist his hands still have dried pee on them, even if he washed them.  He gets an idea in his head and will convince himself that there is no other way.  He must set things up a certain way and has a hard time transitioning if things aren't exactly as he wants them.

The odd part is that he's not always like this.  While he does do this stuff more than the average kid, he's not like this 24/7.  He certainly has moments at daycare, but the violent outbursts haven't really started happening there.  He has more OCD moments there than anything.  And even at home, he can have periods where he is totally fine, including within five minutes of an outburst.  He's fine playing sports, and sometimes he plays so nicely with his toys.  Sometimes he's a good snuggler (more with Daddy than me these days), and sometimes he can be the coolest kid.  But inevitably the evil comes back. 

Tonight we had quite the outburst because he didn't want to finish his dinner (which he always likes) and wouldn't get off the floor.  Craig sent him to bed, and he had a meltdown and had to be restrained again.  That rarely happens when he deals with Craig.  He eventually started calling for me (ha, that's a switch), and eventually chilled out and collapsed into my arms.  It felt so good to get a real hug for a change.  Shortly after, though, he was still cranky about the early bedtime and slammed his door a couple times.  Craig ran upstairs and did what any good dad would do.  He calmly and rationally took the door off the hinges.  He also removed a lightbulb to prevent Jacob from messing with the light.

So, we're going to get help.  We got a recommendation from the pediatrician today.  We're going to set up an appointment and get us some help...all of us.  Jacob may need some diagnosing, and he will definitely need some training to cope with the demons he's fighting.  We need training to manage his tantrums and prevent them.  One way or another we have to work through this.  And while it might be helpful to put a label to Jacob's issues, it's not even about the label at this point.  Yes, if there's something seriously wrong with him, we want to get him help.  I don't want to wake up one day and find out he's turned into these crazy people that snap and go shoot up public places (and believe me, the lack of control I feel right now has given me new empathy for a lot of parents of those criminals, because I truly feel like we're trying everything and there are bigger powers at work here that I don't know how to control).  I'd rather fix it now and teach him how to manage things.  But a label isn't going to change his issues so I'd rather just go to the heart of it and fix the behaviors we're experiencing.  We're worried, however, about labeling him just as he's starting school.  We don't want him automatically labeled and written off.  But if it's mostly a home thing and he's mostly functional at daycare, why should a label follow him to school and relegate him to the crazy kid group?  Those kids get ignored, and I know that Jacob is too smart for that. 

Long story short, I am convinced more than ever that bigger things are at play here.  All these years where I've sworn it was more than just age-appropriate behavior...I am now convinced.  I've never seen a kid that will battle so fiercely, and I don't know what to do when we've exhausted punishments and need to stop short of beating some sense into him.  It seems like we've tried everything.  But when it comes to your kid, there is no giving up.  We simply need to learn how to manage this, one way or another.  In the long run, his life literally depends on it. 

It brings to mind a quote from one of my favorite movies, "The Cutting Edge".  The coach of disgruntled, partner-less figure skater Kate says, in his thick Russian accent, "I am at bottom of barrel."  And Kate's dad responds, "Then you find another barrel."  Off we go to find another barrel.

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