E-mail I sent to Howie’s teachers this morning:

Just wanted to give you a heads up with Howie and the upcoming hurricane.  Howie is very sensitive to big changes in barometric pressure.  I am as well  but while it manifests itself in the form of a headache for me for Howie it causes big behavior changes.  His vestibular system gets rocked when the pressure drops.  I know it sounds weird, but we’ve seen it several times, including the last hurricane and that summer when the tornadoes rolled through western MA.  It’s usually about 24-48 hours before the actual weather event comes in.

With this upcoming hurricane, I just read that the pressure will drop incredibly low.  Based on the track of the storm, Sunday is more likely to be Howie’s harder day, but he could start feeling it as soon as today and into Monday.  If you see extra stimming, or he seems out of whack, it’s probably that.

Hopefully we won’t be hit too hard! At least it’s not snow!

These are the types of e-mails I write lately.

The news today is full of reports of a “Frankenstorm” as Hurricane Sandy heads towards the east coast.  Forecasters are calling for an incredible drop in barometric pressure as it hits land sometime late Monday and into Tuesday.

And so I write e-mails about meteorology and storm tracking and sensory processing disorder.

I know that for some people this connection makes no sense.  As in “really?  The weather affects your kid’s behavior? Come on.  Weather changes were something that made old people complain about their aches and pains, but it’s not really real. “

It’s just an excuse for his bad behavior.

I’ve been at this long enough with my kid to tell you.  It’s real.

I get headaches and neck aches right before a storm comes through.  When Hurricane Irene passed near us last summer, it felt like someone was standing on my head.

I can verbalize it.  I can explain what is happening and why.  And people understand it.

My son can’t explain it why all of a sudden he needs to run laps or crash into things or spin in circles and stim.  His reactions to the same trigger look like behavior problems.

It sounds like hooey to someone who doesn’t live it.  But I’ve tracked it.  Storms, moon phase changes, illness…all these things affect my son’s sensory system.

They probably affect all of our sensory systems. But most people have learned to cope with how we’re feeling.  A few extra Tylenol.  Or a nap.

Howie is still learning what makes him more regulated.  He knows what activities make him feel better but he has yet to figure out the trigger or how to do it most “appropriately” for the setting.

I’m not making excuses for how he’s acting. If he’s being unsafe or not able to be in the classroom then he needs to be removed, redirected and helped.  Unacceptable behavior is still unacceptable behavior.

I will however be proactive in helping those around him understand what is a sensory response versus what is a behavior so he doesn’t get into trouble for something he can’t control.

So that maybe he gets an extra sensory break during the day.  Or two visits to the OT room versus just one.  Or just a well trained eye on him looking for signs of discomfort and dysregulation.

And hopefully we can teach him why he’s feeling the way he does so that next time, he has the tools he needs to cope and feel better.

So I send e-mails warning of Hurricane Howie as Hurricane Sandy approaches.

At home, we’re stocking up on Stonyfield yogurts, fruit leather and flameless candles and padding the house with pillows and bean bag chairs for safe crashing.

Getting ready to weather any storm that comes our way.

Got our umbrellas ready

Squalls out on the gulf stream,
Big storms coming soon.
I passed out in my hammock,
God, I slept way past noon.
Stood up and tried to focus,
I hoped I wouldn’t have to look far.
I knew I could use a Bloody Mary,
So I stumbled next door to the bar.” – Trying To Reason With Hurricane Season by Jimmy Buffett

so…um…yeah.

Monday I wrote this grand post about changing how I view Howie’s days at school.  Focusing on the academics.  The positives.  Not running right to the behavior sheet.  And not using that to determine the success of the day.

Yeah.

I hit publish on that post on Monday and Howie was home 15 minutes later.  And I tried.  I really did.  I waited to check his log sheet, going first to the work.  I asked how his day was and got the standard answer of “fine”.

And then I went to the log sheet.

I get a record of how he did on his behavior plan, separated out by each hour of the six hour day.  Only once that day did he “earn”.

The other remarks were “vocal outbursts at work requests”.  “Hit another child”. “Scratched me.” (from his aide).

When I ask him about it, he shouts “I don’t remember!” and runs away.

Yup.  Right back again.

So there’s my confession.  I couldn’t even last a day without using his behavior as a measurement of success.

I had our regularly scheduled monthly meeting with his teaching team and BCBA yesterday.

They’ve taken weeks (months) of data.  We’re in crisis mode now.

His triggers are unpredictable.  All steps to keep him in the inclusion classroom full time have not worked.  His sensory toolbox is still being refined and he’s just learning to use it.

But it’s not quick enough for them.  They can’t identify what will cause the outbursts or aggressions before they happen, so they can’t help prevent it or even teach him how to prevent it.

And sure, we can look back and say “Oh well, he was getting sick so that’s why he was off that day.” Or “Daylight Savings Time throws him off every year.” Or whatever we define as the trigger after the fact.

But it doesn’t – and can’t – excuse the violent and aggressive behavior.

If we can be honest, we’ve been in this crisis mode since October.

It’s March.  Eight months into the school year.  And all the tweaking and fine tuning hasn’t worked.

Socially and behaviorally, he’s made no progress on any of his IEP goals.  None.  He’s actually regressed.

So here we have a kid who academically is shining.  But as I wrote on Monday, he just can’t be in the classroom to do it.  The large group time is just too much for him.

Too many distractions?  Sensory overload? Not enough good peer models?  Something else?

I told his team that I’ve basically put this year behind us.  That I hoped we’d start summer school and first grade fresh with a new plan and new goals.

The proposal now is pulling him out of inclusion for some portion of the day for direct teaching of behavior modification. “Compliance training“.

I told a friend those were my two least favorite words in the English language now.  Like, that’s the best name they could call it? Couldn’t we call it something more positive?

Maybe “Say Yes To The Dress?”

The team told us to think about it.  That we would need to sign off on the pull out of the inclusion class for the work.

I told them that he was already being pulled out of the classroom because he can’t be there.  Right now, it’s in response to inappropriate or aggressive behavior.  So if he can’t be there, why not have it be for a positive teaching reason? And perhaps the inclusion model isn’t right for him right now.

But that’s the hardest truth to swallow.  That’s the part that gets me.  My kid can’t be in the classroom.  He needs to be taught how to be in a classroom with 20 other kids.

The behavior that comes so naturally to other children is a constant struggle for Howie. The other kids need the academic instruction, my kid needs the behavior instruction. The social/behavioral goals are part of his overall educational success.

So while I’d really like to be that mom from Monday, the one that praises and focuses on the academic successes and accentuates the positives?

I can’t.  I just can’t.

The truth is much more complicated.

And if we’re being honest, I really really hate that.

Honesty is such a lonely word.
Everyone is so untrue.
Honesty is hardly ever heard.
And mostly what I need from you. ” – Honesty by Billy Joel

Nothing like report card day. The double edged sword of your kid doing great academically coupled with 18.6 instances of noncompliance per day, 1.6 instances of aggression per day, 8.6 instances of vocal outbursts per day and .6 instances of violent language per day.

-A message I sent to a few of my autism mom friends

Friday was report card day.  Because I’m so with it these days, I had no idea until a friend posted something about it on Facebook.  It’s always a little source of anxiety for me because on the same day that we get the kids’ academic grades, we also get a progress report on Howie’s IEP goals.  We meet with his team monthly so there are usually no surprises, but I still get a little nervous waiting for the actual data.

And there it was again.  In black and white.

Howie’s academic report card was stellar.  Our school doesn’t give out the usual letter grades, but measures each kid’s progress against the content area set by the state.  So a kid is either beginning to understand the concepts, progressing towards the standard, meeting the standard or exceeding the standard.

In almost all areas, he’s meeting or exceeding the state standards for each content area. There were just a few progressing towards the standard areas in his ability to write using spaces and writing using conventional and inventive spelling.

Howie’s progress towards his IEP goals paints a different picture.  Here’s a kid showing 18.6 instances of noncompliance per day, 1.6 instances of aggression per day, 8.6 vocal outbursts per day, and 0.6 instances of violent language per day (data taken over a one week period).  During group instruction, he attended to the lesson without interfering behavior in 1 out of 5 opportunities.  He was able to identify a problem situation 100% of the time independently, but brainstorm solutions only 25% of the time independently.

Reading all this, my heart aches for my kid.  He can do the work.  He knows his stuff.  He just can’t sit there in the classroom and do it. And it means he’s working so incredibly hard to do the work while filtering out all the distractions.

Every IEP meeting, when the team asks us what our goal is for the coming year, Tim and I always say we want his teachers to see Howie for the incredibly smart, engaging, amazing kid that he is.  We want to help him learn how to control his challenging behaviors so he can be in the classroom and show off all that he can do.

We get so focused on those behaviors as being the measurement of his daily success in school.  I go right to his log sheet as soon as he gets home to see what kind of day he had.  We praise the days he “earned” and we talk about the challenges he had during the day.

I go through his work  and will pull out his worksheets to tell him that he did a good job.   And he’s proud – SO proud – on those days.

But still, his major measurement of success is still his behavior sheets.

Not anymore.  On Friday, I made a change.

**********

I sat Howie down when he got home from school Friday and for the first time we went through his report card together.  I explained to him what the letters meant and what it showed that he was learning.  I said “here, look it says you know all your uppercase and lowercase letters and can write them all!” and he’d respond with “yes, I can!”  And I said “right here it says you can skip count by fives and tens to 100″, and he said “I sure can!” and counted right there for me.

I hugged him and told him I was really proud of what a great job he was doing in school with his work.  He jumped up and down and went running off happily.

Later, at dinner, Tim told him that since he had such a good report card, he could stay up a little later and watch a special show with him and Gerry.  It’s usually Tim and Gerry’s special time together, but they were watching a show on aircraft carriers (thank you Netflix) and they thought Howie might like to join them.

“Oh yes!” came the answer.

**********

I really had no idea if any of this had really connected with Howie.

Until about an hour after dinner.

Howie asked if my mom could send him the special yogurt covered pretzels he likes.  There’s a store near her house in Vermont that sells them without corn starch or corn syrup, so he knows he can eat them.  I told her to give her a call and ask.

Usually, he tells me to do it.  Talking on the phone is very tricky for him.  Talking in person is hard, but the lack of connection over the phone lines makes any back and forth almost impossible for Howie.  Usually it’s pretty one sided.

Not this time.  For ten minutes, he had an actual conversation with my mother.

Yup, a conversation.  First ten minute conversation with her ever.

How do I know?  Two ways.  One, I could tell what she had asked him by his responses.

Two?  I heard him say “I’m going to stay up late and watch a show.” Pause as she asked him something. “Because my report card was AWESOME!”

**********

Awesome pretty much sums up the rest of the night.  Howie, Gerry and Tim stayed up to watch a documentary on an aircraft carrier.  Howie asked completely appropriate questions along the way, and Tim stopped the show to answer.  Gerry did too.  They ate pretzels together and had some juice.  When it was over, they talked some more about aircraft carriers until it was bedtime.

It’s part of my job as a parent to remember nights like this one.  I have to remember that it’s not all about the behavior.  We constantly praise the “green choices” and redirect for the “red choices”.  We work on social skills, sensory integration management and self-regulation.

But just like any other kid, my kid wants to feel proud of himself for something.  It’s too abstract for an almost six year old to be proud of a day with no “interfering behaviors”.  But a day with an awesome report card?

That…that makes sense to him.

There’s your positive reinforcement right there.

Man, they said we better
Accentuate the positive
Eliminate the negative
Latch on to the affirmative
Don’t mess with Mister In-Between
No, do not mess with Mister In-Between
Do you hear me, hmm? - AC-CENT-TCHU-ATE the positive

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