Safety First

My silence on the blog has been due to a most overwhelming summer.  Nate’s extended school year days are much shorter than during the academic year.  During the summer, Nate’s in school from 8:30 – 1:30 Monday through Thursday, and 8:30 – 11:30 on Fridays.  During the academic year, he’s there on Mondays from 12 – 3 and Tuesdays through Fridays from 8:15 to 3.  It doesn’t seem like much until you add it up and realize I lose seven work hours in a week to the summer schedule and, of course, it came at a crazy busy moment.  On top of it, Chad has been in finals for his program at Yale so we’ve been doing the best we can to get our work/school needs met while making sure Nate is well cared for and loved.  Everyone got fed, everything got done, and all is well.  But it was a bit harrowing getting to that moment….

As if this weren’t enough, this has regrettably been a summer of regression for Nate on multiple levels.  First, potty training took a backwards slide.  We started potty training in September 2012 and then stopped because we lost power for a week in November 2012 due to Superstorm Sandy, which caused temperatures in our home to plummet south of 55 degrees.  So we started again when winter break started in December and made considerable progress.  Nate sat on the potty every half hour and, at school, wore underoos under his pull-up so as not to ruin his unwashable ankle braces.  We had some wins but, most importantly, Nate learned bladder control and by the end of the school year, though he had no wins in the potty, he stayed dry throughout the whole 6.5 hour day.  He was also staying dry during his 11 hour overnight sleep.  So we felt we were at the point of achieving bladder control; now we just needed to teach Nate how to use it for good.

After our visit to Disney World, Nate decided he had enough.  Going potty every half hour for nearly six months had gotten to him — and the adults too.  Since Nate was staying dry, we decided to switch the protocol and only have him sit on the potty every hour, which left a bit more learning time in between the potty trips and sensory breaks.  However, wins all but went away.  Since returning from Disney, Nate’s had a win in the potty three times.  Going 12 times day for a good few months and only three wins?  That equals exhaustion on everyone’s part.  During Nate’s two weeks of “summer,” he did fine with the revised once-an-hour potty training.  No wins but no issues either.  But once extended school year began, all bets were off.

Chocolate Chip Pancakes

Apparently all my pictures of Nate this summer involve food and eating….

This has been a rough extended school year.  The first two weeks of ESY were during an epic heat wave and Nate’s classroom has no air conditioning.  The administration brought in portable air conditioning units (they’re on wheels) to cool the rooms but Nate’s room only had the electrical capacity for one unit, which cooled the room to 90+ degrees.  (The thermostat stops reading at 90 degrees.)  By Thursday of Nate’s first week of ESY, they rewired the classroom to allow for a second unit, which worked until the circuits blew and then it didn’t help at all.  As a result, Nate and his three pals roasted in their classroom for three hours until the half-day ESY kids went home, and then transferred into different rooms that had better air conditioning for the remainder of the day.  When he went to Ms. Mollie’s room for speech class, Mollie reported that Nate would just stand in front of her air conditioning unit and sigh.

Between the heat and constant change of environment, not to mention the change of teachers (same ones he had last ESY but Nate was so used to his regular crowd of gals that he was a bit at sea), Nate started having multiple accidents throughout the day.  Then he started to vehemently protest using the potty both at home and at school.  Two of his academic year therapists work ESY (but not in Nate’s room) and, when I mentioned the accidents, they were stunned and felt we should maybe restart in the fall. So Chad and I made the executive decision to put a pin in potty training until the academic year begins.  This also meant Nate was cooler (no underoos under a diaper) and gave him more learning time at school.

On top of that (I feel like this phrase is being used way too often in my recent vocabulary), it turns out that Nate’s new shoe inserts, which replaced his SMOs or “ankle braces,” are hurting him — but Nate can’t speak so no one knew.  He’s been wearing them for more than three weeks now, well past the breaking-in phase.  Nate had some blisters/redness during the first two weeks, which are now gone, so we figured all was well. However, Nate’s private physical therapist, Ms. Kacie, figured it out during his most recent session.  On Thursday, she had Nate do his exercises while wearing the inserts and shoes, and he wouldn’t do it.  Any time the obstacle course required jumping, hopping (on two feet), or anything of the sort, Nate whimpered and climbed up Kacie’s body, hollering “up up!” the whole time.  When I mentioned this to Nate’s ESY therapists, they all said, in hindsight, that Nate’s not jumping at school anymore, one of his most preferred activities, and, instead, carefully gets down from steps and stools that he normally would have flung himself off of.  (I know it cannot be grammatically correct to end a sentence with “of” but this is how I would say it….)  Chad and I are heartbroken that our little guy was in such pain and we didn’t realize it, especially because if Nate feels it, it must be really painful.  Nate gets an orthopedic consultation this Wednesday and, in the meantime, we’ve put him back into his SMOs, which provide him with stability and comfort.

Studying is Exhausting

But the worst regression is headbanging.  The last time I wrote about it was in January 2012, and I foolishly thought that it was truly extinguished. And I suppose it has been extinguished for its original intention, which was getting a parent’s attention or an expression of internal pain (e.g. an ear infection).  Now, the behavior seems to be motivated by frustration or anger.  Most of it seems to be normal four-year-old stuff — I want to do something and you won’t let me.  Sometimes it manifests as a normal temper tantrum, which I adore because there’s no physical injury to Nate.  But sometimes he just starts cracking his head on the floor and I need to restrain him until he calms down so he can’t hurt himself and, inadvertently, me.  Other times, it seems unmotivated and is just a gentle tap on the floor, in a sensory seeking way, I suppose, but it can morph into something bigger.  And, regrettably, Nate’s needed to be restrained at school for the same behavior, so it’s transferred to different environments. I’m sure this is partially due to such radical changes this summer–new teachers, hot school, new braces, wonky schedule, etc.  And did I mention that Chad just left today for a week-long school retreat at Yale?  So yeah, that too.  So far, Nate has no bruise on his head but I expect one will be there shortly.  And that stinks.

New Foods

That’s not to say that Nate hasn’t made some huge (figurative) leaps forward!  Pretend play is at an all-time high, greatly aided by a gift from his hanai (adopted) cousins Arden, Jack, and Ryan of their Little People toys.  Nate also attended two birthday parties this summer — one for Ryan, who also turned four, and one for Jack, who turned seven, and Nate did spectacularly well at both of them.  (The group singing of Happy Birthday freaks Nate’s freak but otherwise he was fine!)  Nate also had a playdate with all three of his hanai cousins on Friday and parallel played like a champ.  We had a special pizza party and, for dessert, Aunt Xandra gave Nate his very own bag of mini Oreos, his first taste of that yummy treat!  Nate sat on a bench, happily eating his cookies, and studied Jack to see if he was eating them in the right way. Nate’s also spontaneously trying new foods.  His new favorite is hot bread dipped in spicy olive oil.  He also ate macaroni and cheese from Whole Foods (it didn’t glow and was creamy – no powder) at a birthday party on Sunday!  And this weekend, when Chad asked Nate what his name was, he very quietly verbally said, “Nathan!”  He still hasn’t done it for me but it’s not for lack of trying.

So dear friends, these are our latest highs and lows.  We are praying for more highs in the days ahead but in the meantime we continue to take things one day at a time.