Bearing my Soul: The Fourth of July, Fireworks, and Jealousy

Bearing…by RChall at morgueFile

Yes, that’s right.  Not a misspelling or typo.  “Bearing.”  Why do I say that?

Let me start by saying that I have been working on this blog for over a week now.  Some of my original notes go back over a month.  So I’m trying to pull all those thoughts together, and there may be some weird transitions.  Fair warning.  But I think it’s worth your time to read.

Not quite 23 years ago…

To be fair, it’s more than a month worth of thoughts.  It actually goes back 23 years ago.  Seriously.  Twenty-three years.  I took a class to learn to play guitar.  And my guitar teacher asked me out.  Our first date was to the 4th of July fireworks in Maplewood.  The days before cell phones.  We tried to meet “at the bank,” but there were multiple banks, and it took us a while to actually meet up.  Obviously, eventually, we did find each other, and we got to go watch the fireworks.

Now we can flip through those 23 years to present day.  On this 4th of July, we decided to take Simon (now 11 years old) to the fireworks.  For those who don’t know him, he’s autistic, and he has a number of sensory issues, so we hadn’t taken him before.  But this year we decided to try.  He was on a new medication (that he isn’t on now – more on that later!), and we thought it might help him enjoy the fireworks.

Fireworks at ACC, 2013

And you know what?  He loved the fireworks.  Seriously loved them.  Knelt down on the blanket with us, rocked back and forth, and kept saying, “Fireworks!” and repeating the warning we’d given him, “Loud!” but he didn’t seem to mind the loud at all.

So where does the jealousy come in?

We didn’t go to this year’s fireworks alone.  We went with our neighbors.  They have two kids younger than Simon.  Both had already seen fireworks.  Both, when the ice cream vendor came along – wanted and ate ice cream.  (We bought some, and he tasted it and refused it…although that may have been because it was some nasty ice cream…)  (But I digress…)  The point is that Simon was having his first fireworks and unable to communicate what he really thought, other than the words we’d given him, and it was years after the average age.  Which leads to so much more…

We had to take him off the medication he’d ben on that day because we realized that, while it helped him focus, since it was a stimulant, he was beyond cranky and irritable.  Before the med, he wanted hugs and kisses and attention.  On the med, he made a lot more frustrated grunts and did a lot more frustrated behaviors (self-injurous), and wanted nothing to do with human contact.  Focus is great, but misery is not a good side effect.

And now’s when things get – I think – even more confusing.  And overwhelming.

I don’t want my child to be a guinea pig.  I don’t want him to be over-medicated.  I don’t want to just pile on medications, each one having side effects that other drugs are supposed to cover.  And it goes beyond the medication and its controls.  It goes to the question of artificial constructs in his life.

In June, he had a birthday party.  He wanted a party.  He likes parties.  He may not eat the cake, but he likes to blow out of the candles.  He may not play with the toys, but he wants to open the presents.  But did he care about the other people there?  We invited his “friends,” but are they really his friends?  Does he consider them friends?  Does he have a definition of friends?  He didn’t seem to care at the party, but do we know what he cares about?  We construct these things for him to try to give him a level of normality, but is that a good thing?  A necessary thing? 

And, again, jealousy comes up.  Other kids, by the time they’re 11, have friends.  They play with toys.  They eat cake.  They answer questions.  Their parents don’t wonder how fair their children can come (or go) or how hard to push to try to achieve things.  Where do we draw lines?  Where do we say, “Screw it all! Let’s just aim at being happy!”  When do we stop questioning the choices we make and the life decisions we have to make for someone else – someone who has feeling we may not understand?  Wants and desires we can’t conceive of?  A lack of patience we can’t expect to go away?  No method of communication for these things?

Now – another shift.

Back to medication.  We decided that the medications he currently takes are too many and too unclear.  He had gotten up to four different meds.  One for aggression (that’s actually a drug for schizophrenia).  One for anxiety.  One for focus and to help calm him a bit.  One for ADHD.  And then we stopped the ADHD drug since it was a stimulant, and its original purpose was to help him focus so that he could finally be fully potty trained.  And it sure wasn’t going to help with that. 

So when we stopped drug number four, which was not the first time we’d tried a stimulant, we decided to rethink the medication.  What about dropping them and starting over?  Why give him all these meds, no completely sure how they were truly functioning or whether they were truly necessary anymore?  We went to his psychiatrist, and she went for it.

We started peeling back on the drugs.  We started with the first one – the aggression/schizophrenia drug – dropping it from .75 to .50, with the intention of going to .25 and then off.  We moved it to .50.  And then we got texts/messages from his school (he’s in their “Extended School Year” program for the summer).  He’d had a major meltdown and needed to be restrained.  Immediately, those questions popped up.  Was it the reduction in meds?  The fact that another child was screaming and his sensory defensiveness kicked in?  The fact that he’d been in a bad mood because he’d had his television interrupted to go to school?  His upset stomach?  Was he overly tired?  Overly excited?  Anxious or stressed because he’d just started back up at ESY after a week off?  Something we couldn’t even guess at?

Messages in stone by Darren Hester at morgueFile

The head of special programs at his school had the right attitude, though, when my husband texted back a “Sorry” in response to the incident.  She texted that “You should never apologize for your child.  He’s trying to communicate something, and it’s our job to figure out what that is.”  (By that time, he had completely calmed down and taken part in a “pretend cooking” class.)

But even then…how do we know or judge anything?  What was that message he was trying to communicate, and will we ever get it?

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