Tuesday, August 28, 2012

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. 


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?

Sunday, August 26, 2012

Over the hump

To you:

So sorry to have been out of touch.  We've been desperately trying to find which way is up.  Earlier this week, Matthew was sent home from school with a high fever.  We got the lovely "its a virus" diagnosis from the pediatrician.  He slept roughly for the next 2 nights, but things finally broke and he was happy again... just in time for Will to catch the fever.  And unfortunately with fevers come seizures... so we've been fending off a fair number of those as well.  As Will was sleeping off his fever and seizure one morning, we got a call that Luke also had a high fever and needed to come home.  There's joy in numbers I suppose.

We met again with Will's neurologist because his current slew of epilepsy drugs just aren't working.  The doctor added phenobarbital, which has been around and used in neurology since 1918.  Oldie but a goodie... except that it takes the body a while to get used to and for the first couple of days, Will was very sleepy and cranky.  We'll be decreasing one of Will's other medications at the same time as we increase the dosage of the phenobarb... dancing the dance and paying close attention to the taper schedule.

Finally now the fevers are gone.  The headache, reactive lymph nodes and neck pain that I wrote about having myself have not subsided, and after a long course of antibiotics for a sinus infection, I was sent for a CT scan.  I come from a long and distinguished line of hypochondriacs, so in the time between when my doctor prescribed the CT and when I actually got it, I had WebMD'd myself into believing I either had lymphoma, lupus or tumors near my ear.  The CT actually revealed that I continue to have a severe sinus infection, which is causing the lymph nodes to react, which are causing my neck pain.  So I'll be checking into the ENT this week, likely following in Will's brave surgery footsteps.

Nate has managed to keep it all together... though at times I am sure it felt as though there were several shoes dropping.  It seemed as though the week would never end.  I know myself, I had moments where I asked "why so many tests (not medical tests, tests of grit and perseverence)?"  and "do these trials always have to come lumped together like this?"

But hey, here we are.  We survived.  We went through several bottles of Tylenol and Advil and nasal saline and vials of Diastat.  We put many miles on the van between trips to the pediatrician and the neurologist and the pharmacy and the radiology center and every school.  And thankfully for the past two nights, everyone has slept.  We've been to bed early and slept to a **mostly** normal time in the morning.  We're trying to heal those immune systems as best we can, and aid Will's body to accept this new medication and fend off seizures.

Thanks for your patience during this time.  For this typically active family, two weekend back to back at home with little planned... with being sick and tired on top of that... has left us looking forward to getting back to normal this week.

Talk to you soon,
Down and Out but Looking Up in NC

Thursday, August 16, 2012

Tough week

Its been a tough week for us.  I am battling some kind of mondo sinus infection.  Will has had a couple of seizures.  Matt has fully embraced his two-year old tendencies.  Luke has been having temper tantrums every day after kindergarten.  Nate's just trying to hold us all together. 

Today Luke came home acting embarassed.  He willingly opened his daily progress folder from school and showed me his report.  A sad face.

"Luke did not follow the teacher's directions today.  He refused to sit down or stand in line."

I read it aloud.  Luke hung his head.  We talked about listening.  We talked about how his teachers felt sad and frustrated when he repeatedly refused to follow directions.

I asked him what we should do about it.  He didn't know.  He didn't try to offer an excuse for his actions.  I know that kindergarten can be a rough transition even though he's been in school for years.  There are a lot more expectations with following directions... and Luke really likes to do his own thing.

I know that his spirit is a thing to be treasured and his independence is a good thing.  But sometimes - especially during the first month of school - the best thing to do is to learn the right things to do and follow directions.  Its a life skill.

We talked about when you want to thank someone for a gift, you write them a note.  I asked if he wanted to write a letter to apologize to his teachers.  He said yes.  We sat down to write the following note together.

"I am very sorry that I did not listen well today.  I will try harder to follow directions.  From, Luke"

He was proud of himself to finish the note and asked when he could give it to his teachers.  I think he wants to make things right.  I hope that tomorrow he starts to listen and follow directions.  I know this is a process.  I felt bad as his little 5 year old self sat down to write lines... how unoriginal right? I couldn't think of anything else.

But in the end, he understood why he was being punished and why he should write a letter.  And I think that learning to say you're sorry when you're in the wrong is an important life skill.  Tomorrow's a new day.  I can't seem to fix all the other things that made this week rough... at least we can set Luke on the right path.

Thursday, August 9, 2012


Last night as I was about to start writing about Matt's fun at the pool, my Blogger counter popped up in the corner of my screen.  It was blog number 499 of the NC Slaviks story. 

Which means that #500 is tonight. 

It is kind of hard to believe that since October of 2008, I have sat down at the computer to post a Slavik story 500 times.  Just under 4 years... 100 a year on average... 2 stories per week.  There are a lot of stories that have been told.  I've enjoyed every one of them.  Blogging to me is about sharing our life.  Good stuff.  Bad stuff.  Funny stuff.  Gross stuff.  Getting you all to understand where we're coming from and that we're not easily definable.  We're a family.  We have stuff that we deal with.

I am grateful for those of you who have reached out through the years to tell me when a story has touched you.  Whether you've cheered on Will in his Creepster Crawler, swam with us on the Outer Banks, cried with us over seizures at Hopkins, waited with baited breath to find out Cart's real name, laughed with us when Luke tried to teach Matt how to pee in the potty, or found yourself learning a lot more about a fellow human being with special needs... then I have succeeded.  I've told our story in a manner that makes you feel what we feel.

I'd really like to know which blog posts have been your favorite or touched you the most.  If you've got a moment today, post a message on the blog telling me which blog post you remember... which one still makes you laugh when you think about it... which one makes your eyes fill with tears... which photo you secretly stole off my blog and made your work computer screen saver... the one that made you feel inspired or strong.

I can't wait to hear about it... and I can't wait to post another 500 NC Slavik stories to share with you.  Four years down the road!

Wednesday, August 8, 2012

A few moments of Matt

Mondays are busy days for us.  This has traditionally been Will's evening for physical therapy.  And throughout the summer, it is also Luke's night for swimming lessons.  Two different directions.  Nate usually takes Will to PT.  I typically take Matt to the pool with Luke, so when the weather cooperates he can swim in the outdoor pool while Luke's lesson is going on inside.

I had the camera with me on Monday because it was Luke's first day riding the bus.  I don't always take the camera to the pool because between my work bag, lunch bag, cup of coffee, Luke's back pack, Luke's lunch bag, Matt's day care bag, and my keys... my hands, shoulders and arms are pretty filled up on my way out the door.  As much as I like to take pictures of everything... sometimes practicality wins.

But because I had it with me, I took the camera to the pool this week.  While Luke practiced his doggy paddle, diving and holding his breath, I got some awesome shots of Matt in his glory.  The first one is him waiting for Luke's lesson to start (so he can be free outside) and the rest are outside in the sun, enjoying the slides and the splashing.

He is independent, fearless, and gutsy. I look at him bound around in the water, dunking his head and coming up laughing, and I am amazed. He's an explorer finding his own way, stopping by for a quick mama hug and to make sure I'm still watching as he climbs triumphantly up the steps to the big slide, flashes a devilish smile, and launches himself down the slide head first... because he knows he's not suppose to.

Tuesday, August 7, 2012

Bus, bus... oh glorious bus

Now truly, THE DAY has arrived.  BUS DAY.  Forget the first day of kindergarten.  That is so last week.  This week's excitement lies solely in the hands of a friendly bus driver.

Luke was not nervous to ride the bus.  Quite the opposite in fact.  He couldn't wait.  He woke up in the morning... early (typical)... and shocked me again by walking into the bathroom and announcing that he was riding the bus today.  You'd think I'd learn to lock the door.  But its too early to remember those things, and Luke was probably too excited to be deterred by a locked door, anyway.

10 minutes before the bus's scheduled arrival, we loaded Luke and Matt into the van and drove to the corner.  The coveted bus stop.  Will had gotten on his bus about 45 minutes prior.  We sat in the van, singing 'Rise and Shine' for a few minutes.  Luke was all smiles.

As some of our neighborhood kids started to arrive, Luke looked anxious to stop singing the pre-K songs and join his elementary brethren at the bus stop.  Of course we obliged. 

At the bus stop, Luke's eyes were wide open.  He didn't say much.  He seemed a little nervous.  He just watched the older kids for a while.  Then two of the girls who live across the street arrived, and Luke's demeanor changed.  Their presence seemed to calm his new nerves a little bit.  Suddenly he couldn't talk enough, and not just to the girls he knew... to everyone.  You wouldn't know it, but he met this little boy for the first time about 3 seconds before I took this picture.

Luke and his friend waited with baited breath as two other big yellow school buses drove by.  Not ours.  They were about to lose all hope when all of a sudden, a big yellow bus approached the bus stop.  It slowed.  The lights came on.  The crosswalk guard deployed.  It came to a full stop.  And then, as angels sang and harps played, the door opened.

We had practiced with Luke.  Say goodbye.  Walk to the bus.  Turn around and wave at Mommy (photo).  Get on the bus.  Walk up the steps.  Turn around and wave to Mommy (photo).  Sit down in the first seat on the side closest to our house.  Wave to Mommy (photo).

Umm... none of those things happened.  As that bus approached and Luke's excitement and endorphines kicked in, it was all he could do to give Nate a high-five, run to the bus while waving to me over his head, and then climb on the bus and find a seat with all the big kids.  There would be no posing :)

I'm honestly just glad I got a couple of non-blurry shots.  I was not sad as Luke climbed onto the bus.  I was laughing so hard and appreciating his excitement.  The story is way better than the photos, anyway.

Monday, August 6, 2012

Tuxedo trio

My brother got married this weekend in Chesapeake City, Maryland.  It was a gorgeous day, played up with a gorgeous setting, emphasized by a gorgeous bride... and touched off, of course, by a gorgeous trio of little boys dressed up in gorgeous tuxedos.

Perhaps I am biased.  You be the judge.

And the only thing more gorgeous than my tuxedo trio is my smokin' Slavik tuxedo quartet.

My brother and his then-fiance asked if Will could be their ring bearer. What a lovely idea! The only conundrum is that Will cannot yet propel his own wheelchair and doesn't have a power chair. So we modified the idea to have Will be the ring bearer and have Luke and Will push him down the aisle. Then we realized the potential issues with that situation, and added Nate in for good measure... and to supervise.

Off to Mens Wearhouse we went, to fit our little bearers in tuxedos.  We tried our best to fit shoes around braces, anticipate the length of pants Will would need while seated in his chair, and chase Matt down to get a jacket on him, all the whilst he screamed "NOOOOO!  Take it OFF ME!"

Eventually we got the measurements, got to Chesapeake City, got the right tuxedos, and settled in.  I was in the wedding, so Nate and our CNA Nicole got the boys dressed and to Pell Gardens on time.  Before everything began, Nate was able to take a couple shots of the boys in their Saturday best.

Will did a bunch of smiling before the ceremony and did pretty good with being warm on an August afternoon.  We were very proud of him.  His tolerance level for new and sweaty situations is definitely improving.  That isn't to say that he wasn't happy when the monkey suit was removed :)

After Luke finally let Nate win and not tie the tuxedo tie around the outside of his jacket, things went alright. Luke was very happy to be dressed up "special" for Uncle Drew's wedding, and was so excited to tell his great-grandmother that she looked very pretty. She did.

And then there was Matthew... who did not want to wear a tuxedo. Did not want to smile. Did not want to do anything except whine and trip over his bottom lip. His blanket ("nana") did not help. Kisses from his mama did not help (it took a while for him to even recognize me!). The only thing that helped was getting water from the water fountain and running towards the road to see who would chase him. Oh, and the playground conveniently located nearby.

Its not every day that your little brother gets married. Its not every day that family and friends come together to celebrate love and a new family member. Its a special time, and we were so thrilled to all be a part of it. We're lucky folk.  And we clean up pretty nice too.

Wednesday, August 1, 2012

Next first day down

FINALLY!  August 1 has arrived.  Luke can FINALLY go to his first day of kindergarten.  He has been talking about going to kindergarten for the past 6 months.  Then about 3 months ago, both his pre-K program and day care really started to talk up kindergarten to get the kids excited.  And Luke was drinking the Kool-Aid... with 3 months remaining until his first day, all he could talk about was going to kindergarten.

In late May, we went to kindergarten Meet the Teacher.  Luke thought he was starting kindergarten the next day.  Sorry bud.  In mid-June he had his day care graduation ceremony.  He thought he'd be going to kindergarten shortly thereafter.  Nope.  In late June he graduated from his pre-K program.  Please, kindergarten now?  No siree.  You've got to wait through the entire month of July, keep going to day care full time and say weekly goodbyes to some lucky friends who started kindergarten before you, Luke.

We were feeling really bad, it seemed unfair to Luke... but it wasn't like we had other options.  He knew that August 1 was the big day for him.    He knew that his last day of day care was last Friday.  And he was not sad to say goodbye (despite all the crying teachers saying their goodbyes to him).  It was FINALLY almost time for the big day.

He stayed with Oma during the first couple of days this week.  I was surprised that he went to sleep last night.  He woke up early today and shocked the crap out of me in the shower by walking into the bathroom at 5:45 this morning, announcing in a loud voice "MOMMY, I AM GOING TO KINDERGARTEN TODAY" with a huge smile across his face.  A smile so big I could see it without my contact lenses, through sleepy eyes, in the dark.

The kid was ready to go.  First day of kindergarten.  Awesome.  As he was eating his breakfast, he announced that when he saw his new teacher, he was going to give her a big hug.

He put on his big kid back pack full of school supplies.  He calmly got into the van.  He was totally zen.  Transfixed on the goal.  We rolled up to school, he put the pack back on his back, grabbed my hand, and we walked into the school. He was exuding a confidence, a swagger that I haven't really seen in him before. I half expected him to announce to the front office that he had finally arrived.

His kindergarten class is literally next door to his pre-K class, so he knew exactly where to go.  His new teacher greeted us at the door.  He gave her that big hug, and she flashed a big smile.  He was in.

Luke immediately found his cubby, and unloaded his backpack and lunch bag like a seasoned 2nd grader.  He looked around for a seat at the table and introduced himself to his new friends.  And in that moment, he was a big confident kid.  He noticed that I was still standing in the doorway, too afraid to ruin his moment by taking a lot pictures (of course I snapped a couple...).  He gave me a smile and a hearty wave, and I knew that he was ready for me to leave.

Mama can take a hint.  I quietly backed out the door and happily walked out to the van.  I think because both Luke and Will have been going to pre-K at their same schools for years, I am not sad about this step.  I am excited for both of them because they are both just so excited.  Its fun.  They're doing great things.  They're growing and thriving.  Its awesome.

The purpose of today's kindergarten intro was for the teachers to meet the students in a smaller setting and do some informal assessments of temperament, learning styles and to determine what they already know.  It also gave the kids an opportunity to get to know their teachers, each other, and the rules on a shortened day, without the pressure of a full day of school and riding the bus.

When I went back to pick up Luke, he greeted me with a sweaty-headed hug and an easy smile.  They'd just come in from playing outside.  He couldn't stop talking about playing with blue Play Doh, learning about letter sounds, and building with Legos.  Clearly in love.

He gave his teacher another big hug on the way out.  She asked him when he was coming back and he quickly answered "tomorrow."  She had to remind him that he wasn't coming back until Monday, because tomorrow was the intro day for another set of 5 of his new classmates.

Luke wasn't too keen on that answer.  He's been waiting with baited breath for the past 6 months for kindergarten to start, and now he's been given a little teaser.  Bait.  And he's hooked.  Monday can't come fast enough.  Because Monday is kindergarten again... AND he gets to ride on the bus.  How cool is that?

When we got home, Luke was excited to receive a call from Grammy to talk about his first day.  He told her about playing with toys and making new friends.  When he got off the phone, he asked me for a big glass of water because he was "parched from his long day of learning and talking." It was impossible not to laugh... and to not look forward to more Luke-isms as he moves on to this exciting next step.