Phenobarb Labor Day

We kept a low profile over this holiday weekend.  In our efforts to get Will's seizures back under control, we started him on phenobarbital.  Which has some pretty serious side effects, the most significant of which is intense tiredness (especially in the first couple of days).  We have had Will on a half of his regular dosage over the past 2 weeks to get him used to things, and planned this long weekend to bump up his dosage to full strength. 

Labor Day used to mean the unofficial end of the summer.  When I worked as a lifeguard in Maryland, this was the day the pool closed and the leaves and the squirrels started taking over.  School started.  It was autumn.  This is not the case in North Carolina... our outdoor pool doesn't close until the second week of October.  It was nearly 90 degrees this weekend, and we've been in school for a month.

So Labor Day didn't mean too much more than a weekend of hunkering down, beating the heat, and allowing Will to nap whenever and as often as he needed.

We started off Friday night pretending to welcome in the autumn with a fire pit in our neighbors back yard.  We cooked marshmallows, sat around the fire, picked off ticks... all those typical autumn things.  Only it was still more than 80 degrees at 100 percent humidity and the boys had been jumping on a trampoline for an hour before Will's call for bed was heard loud and clear.

For those of you with eyes of green, you'll notice Will's old school Greenbelt Swim Team shirt... in honor of Greenbelt's 75th birthday and the Labor Day Festival! We considered coming up this year to celebrate such a special anniversary, but the phenobarb won out. See you in 2037!

On Saturday I was trolling the Weather Channel website to see if the remnants of Isaac were headed our way when I uncovered an interesting story about the 10 best places to get ice cream in the United States.  As karma would have it, one of the new ice cream shops on the list is about 40 minutes from our house - Maple View Farm in Hillsboro.  So after Will and Matt woke up for their naps and everyone was ready for a little time out of the house, we hopped in the van and made our way into the rolling hills of central NC.  The front porch was lined with rocking chairs (full of people who had apparerently read the same story I did) and the line inside was long but quick.  We enjoyed our ice cream on the melty porch, overlooking the farm proper before heading back home.  If you're nearby, I totally recommend Maple View!  Good ice cream - and they sell their own milk, cheese and butter too.

Sunday was a rainy day.  Will needed a long nap in the middle of the day after sleeping poorly the night before, so we played trains, Legos, Matchbox cars, and Memory and made chocolate chip cookies to pass the time. 

Today (Monday) was another rainy (but weirdly hot) day.  Thankfully Will slept a little better last night, and he was not as nearly as tired this morning.  We're thinking that he is adjusting to the full strength of the phenobarb.  He did have a couple of cranky moments, but didn't take a nap today as he has been.  He was happy to go to bed tonight.  Hopefully things continue on this path.

Sometimes holiday weekends work out just right... when you don't plan anything except a medication change and do your best not to kill each other by the end of it ;-)

With language comes lies

Luke has been doing a lot better in school since "the incident." That was the day when he refused to listen, got a sad face on his daily report, and had to write an apology letter to his teachers.  Apparently in his class before you get a sad face report, you get three chances to change your behavior.

When you enter Luke's class, there is a large poster hanging on the wall.  Each kid's name has a green crayon next to it.  On the first incidence of bad behavior, the teacher gives a verbal reminder.  On the second incident, they change the green crayon to a yellow one.  On the third incident, the yellow crayon is changed to red and there is a general shock that ripples through the class.  Kind of like a kindergarten Scarlet Letter, displayed prominently for any potential copycatters.

So before Luke even got home on the day of "the incident," he knew what he had done.  He had been reminded several times to change his behavior, and when that red crayon came out, he cried. 

"NOOOOOOOOOOO!  NOT THE RED CRAYON!"

Since this time, his behavior in class has been great.  Luke doesn't want to repeat the stigma of the red crayon.  I learned all this tonight at Luke's Back to School Open House.  Lots of Luke's classmates attended with their parents, but Luke wasn't with me.  That's because when Nate picked him up from the after school program, he was told that Luke refused to listen to instructions and refused to participate in activities.  It was very unlike him.

When I got home from the open house, Luke had been on a rampage for a long time.  Nate was fed up and busy giving the boys baths, so I sat down to talk to Luke.  I am at a loss for what could be going on.  I was just hoping he would tell me something.  The kid sure does know how to throw a good temper tantrum, but I know he likes school and likes the after school program too, so to get such bad reports is odd.

Me: Buddy, did something make you mad or sad today?
Luke: No, I just had a rough day.

Me: Luke, was someone mean to you at school? 
Luke: Nope.  Everyone is very nice to me.

Me: I am just trying to understand what happened today.  What made you have a rough day?
Luke: My stomach made me do it.

Me: Excuse me?
Luke: My stomach wasn't listening.  It kept telling me to go and jump on the blue mat.  I know I am not supposed to jump on the blue mat.  But my stomach told me I had to do it.

Me: You mean you were hungry?  Or you felt like you were going to throw up?
Luke: No, Mommy.  I mean that my stomach is not a good listener and it was telling me bad things to do.  And then my after school counselor told Daddy (lips tremble, and we stop talking to fend off tears and another meltdown).

I was so perplexed.  He was adamant that it was his stomach.  But he ate dinner well.  He didn't complain about pain.  He knows to go to the toilet if he feels that he needs to be sick.  We are so good at figuring out what is going on with Will without language, so I kept looking for signs from Luke in the was acting... what was the cause of this weirdness?

Then it occurred to me.  Luke may have learned how to lie.  When he was speech delayed, he was having trouble with just coming up with the words to describe himself and his feelings.  Now that he is able to better communicate (and, I also learned tonight, can read more than 100 words and is at the top of his class when it comes to reading abilities), he has the ability to twist things.  How can you get upset with Luke for his behavior when he can blame it on something else?

But not another student or his brothers or an imaginary friend... he blamed his stomach.  I've got to give him credit for creativity.  And hope that we continue to put him on the right path!  But how do you teach a kid not to lie when he may have convinced himself that his bad attituded stomach is to blame?  I am just struggling... there is even a lesson to teach with this one?