OMG, he got his PE!

Nate has been waiting with baited breath to get the results of his professional engineering exam, which he took back in October. He didn't feel very confident after the test. It was a very tough exam, and a long day. The envelope from the North Carolina Board of Examiners for Engineers and Surveyors came in this afternoon's mail, addressed to:

Nathan J. Slavik, PE

Nate got the mail. The envelope was on top. He proceeded to run into the house with Otis at his heels to share the good news! Will and Luke were napping, but Matt and I were here to give big hugs all around. I can't wait to buy Nate his first PE stamp!

We've really had a crazy year, full of very low lows and very high highs. So much uncertainty... passing this test means more stability for our family into the future.

This professional licensure is such an important thing in Nate's field of work. He spent so many days and nights studying while he was home with Matt. It is a true academic and professional acheivement and we're so proud of him! What a great way to start the new year!

Unplugged

Around 10pm on Christmas night, it started to snow here. We didn't think much of it, but when we awoke on Sunday morning, there was a whole lot of snow outside (5 inches or so... lots for us in central NC!). An "almost" white Christmas! We made breakfast and buttoned down to watch Toy Story 3. We started a bag of popcorn in the microwave and then...

...the power went out! At first we thought it might pop back on quickly, but that didn't happen. We made a call to the power company to report the outage and then tried to figure out what to do. No movie. No popcorn. Luke was not a happy camper. Somehow 3 year olds just don't understand the intricacies of the electric grid and the effect of lots of snow on power lines.

We started thinking longer term. We closed all the blinds and drapes to keep the (electric) heat in. We couldn't cook (electric stove) or take showers (electric water heater). What were we going to do if the power stayed out all day and it got dark out? I got our camping lantern out of the attic (thank goodness for the new firefly flashlight! the attic was dark!)... only to figure out that it is a rechargeable lantern. Meaning it doesn't take regular batteries. And it has to be charged in an electrical outlet for 15 hours before using.

Uh oh. No good. Clearly I have not been camping in a while with this lantern. We started looking for candles.

Thankfully the lights came back on after only an hour of being out (we did a little dance) so we never actually had to get to the real questions like "how many days can Will's feeding pump work on battery power?" and "will I survive with no internet?"

Around the same time, the snow stopped falling. In all the excitement of the moment, Matt decided to start crawling. Motivated by a toy a few feet away, he took about 3 clear movements forward before plopping back down on his behind. We grabbed cameras quickly, I "relocated" his toy to get him to crawl again, and we filmed it! Since that day, he's started to crawl a bit more, but nothing too consistent. He's also starting to pull up and is less wobbly on his legs.

Where has my baby gone? Maybe he can help me create an emergency plan so we'll be more prepared the next time we lose power!

These are a few of my favorite things

Thankfully none of our boys understands the ins and outs of Christmas morning enough to wake us up at an offensive hour. We all wake up so early on school days that when the weekend and holidays come around, it is a welcome opportunity for all to sleep in. Of course, when you're used to waking up at 5am, 7am is actually sleeping in.

So Will was the first to awaken on Christmas morning, followed closely by Luke just after 7am. That meant Nate and I were up shortly thereafter. We realized quickly that Will had wet through his Christmas pajama bottoms, and Matt had peed through his whole Christmas footie PJs, so we had a couple of wardrobe adjustments to make. But we didn't care... the sun was up before we were. It was a Christmas miracle!

By the time we had the 5 of us up and at 'em, Grandpa was awake too. Luke took pleasure in waking Aunt Kylie from her slumber, and Grandmama rose shortly thereafter.

We all gingerly walked down the stairs, expecting something to click with Luke that Santa had been there overnight to visit us, but he was really just bewildered by the full stockings and overflowing Christmas tree underbelly. He kind of stared at things, unsure of what to do! It was cute.

Of course once Luke realized that there were a lot of wrapped gifts that he was allowed to open, he snapped out of his bewilderment and took charge of opening any stockings and gifts that looked like something he might enjoy. He also did a good job of playing Santa and delivering gifts around the room.

Below are some of my favorite photos of our Christmas morning... nothing beats the pure joy and excitement of your children's faces on Christmas!

Telling the tale

We had a really wonderful Christmas. Good company, good food, happy times. So rather than try to tell the tale in one uber long blog post this evening, I think I'll break it down into littler stories and tell the tale over the next week.

Nate's sister Kylie and my dad and stepmom came to town to celebrate Christmas Eve and Day with us. Everyone was in place and unpacked by early afternoon on Christmas Eve and all boys were napped and fed. Perfect time for a fun Christmas activity! Cue the Christmas carols.

I baked sugar cookies in the morning, so we sat down around the kitchen table to decorate cookies for Santa! There's nothing like a bunch of kids, and adults who act like kids sitting around making a mess with sugar. White, red and green icing... green sugar crystals... white, red and green sprinkles... and of course, cinnamon candies. Pure sugar. Pure chaos. Pure fun.

The decorating icing said that it dried in 4 minutes. Luke tested out truth in advertising by loading the cookie up with as much icing as he could. It dried! Luke took one bite of his cookie, though, before announcing that he was all done because the cookie was too sweet for him.

William got in on the fun by shaking green sugar crystals onto his cookie. Will wasn't too happy with decorating, though, because holding onto the container of crystals felt an awful lot like occupational therapy to him!

Luke and Grandpa took their decorating very seriously. Santa appreciated their valiant decorating efforts.

Aunt Kylie testing out the goods.

It doesn't matter that they're all ugly! This is pure delicious chaos! Santa got 2. The rest of them were gone in less than 8 hours.

Matthew was a little too young to partake in cookie decorating. He kept busy by looking cute in his Christmas shirt and drooling all over the Sullivan family crest that Grandpa and Grandmama brought back for him from Ireland!

Let the Learning Begin

We went to Charlotte this past weekend to visit Aunt Jenn and Uncle Chris... always a fun time for all! As it turns out, we couldn't go to the Great Wolf Lodge water park without staying overnight there, so we opted for option 2 - DiscoveryPlace! This is a fantabulous children's museum that recently underwent a multimillion dollar renovation. Wow. We all had a great time... not just the kids! Check out the photos below. After the museum, we headed up to the Charlotte Motor Speedway for their Christmas lights show. The Christmas lights were ok... the best time was had by Chris and Nate, who got a big thrill driving on the track around turns 1 and 2. Oh, boys!

Chris, Luke, Nate and Will play in the water table.

Though the water was a little cold, Matt enjoyed the water table too!

Will enjoyed the big fan and feeling the ribbons on his face.

Someone please tell me... WHO is that CUTE baby in the mirror? Matt checking out his good side.

Nate and Will check out some lizards.

Luke checks out his own lizard. Yick!

Jenn and Luke explore the jelly fish tank... happy that those guys are behind glass!

Luke showed no fear lying on a bed of nails! He then assisted the next 4 people in line with operating the table.

Matt really enjoyed playing with the wiffle ball being held up by an air flow. He could never quite grab it but that didn't stop him from trying.

Will hiding out in an Army camo tent - look out!

Luke, Matt, and I beat the pants off of Nate and Chris on this rigged tug-of-war game

Quarterly beating

When you have a child in a special education program, you create and track their individualized goals to an appropriately titled Individual Education Program. These are things that you want the child to learn in the coming school year. In Luke's case, his goals are to bring him closer to the development level of his peers - Luke will learn to play with blocks, Luke will follow two step instructions, Luke will learn to jump. In Will's case, his goals are structured more towards enabling his mobility, autonomy, and speech - using eye gaze, Will will participate in a reciprocal social game such as peek-a-boo.

The IEP is hard to develop in the first place because it requires you, the parent, to subject your child to a battery of developmental tests run by different types of specialists. When the crying is done and the testing complete, you listen to the areas in which your child needs additional development assistance and work with those specialists to create reachable goals for the year. And while completely necessary, it is painful. And as realistic as Nate and I are about Will and Luke's abilities, the IEP meetings are sad reminders of things we've been through, places we don't necessarily want to go back to, and how long the path forward really is.

On most days, I don't think about the IEP. I realize that it is a necessary way for educators in the field of special education to track a child's advances, and I don't pretend to have a better format. I just don't really like it, and I don't look forward to the quarterly IEP progress reports that we get in the place of report cards. Call me blind, call me ignorant, call me a dreamer. I call it survival.

Will's quarterly IEP review came today in his bag. Last quarter's review wasn't awful to read, and I was expecting the same type of report today because Will's daily teacher reports have been largely positive. And while there were some positive comments in the IEP...

Ugh.

"Will needs to improve his ability to self-regulate and respond appropriately to various sensory strategies designed to "calm" his system down in order to have a productive physical therapy session on days when he is having difficulties."

"Will continues to require hand over hand assistance for writing, this is largely due to his resistence to perform these tasks."

My fear is that if Will doesn't meet the goals that were set for him, then next year, his teachers will want to keep all the same goals that he didn't meet this year and not set any new ones that will push him. And the year after, and the year after... same goals. And then all of a sudden we're 5 years down the road, I'm still getting IEP reports about Will's inability to self-soothe when he gets upset during PT, and Will hasn't made any real progress.

Will is such a smart kid. The goals set were to try to enable him to shine, to develop, to manueuver his way out of the binds of his cerebral palsy one little step at a time. We, as his parents and educators, were tasked with figuring out the best way to enable his success.

I try to stay positive. I try to stay strong. But my first thought when reading these progress reports is to shrivel. Now, you know me... I don't shrivel. And I won't in this case. But sometimes the reality of this situation wears on me. Tomorrow I will be fine, and I will start to come up with ways that Will will beat the hell out of his IEP goals. But tonight... tonight I cry for my baby boy who is just tries so hard, beating so many odds with a smile of such true uncomplicated honest joy, and not knowing just how hard he's got to fight.

Like brother, like brother

Luke has always loved electronics, and recently Matthew has started to become interested in computers and telephones just like his big brother. Earlier this evening, I had an eerie feeling of deja vu and shot a couple of photos of Matt with the house telephone (photo on the left). After a bit of searching back into Luke photos from early 2008, I found an uncanny resemblance and the source of my deja vu (photo on the right)! They're dressed in the same sized coordinating outfits and the exact same phone!

The magical discovery of toes in a bubble bath and the joy that follows

Santa Train

I am not quite sure how we happened upon it, but sometime in November, we found out about a train ride with Santa on the New Hope Valley Railroad. We've ridden the train before, but never with Santa. And because we do everything we can to stay away from malls during Christmas, this seemed like the only opportunity to introduce Luke, Will, and Matt to Jolly Old St. Nick.

The train was scheduled to depart from New Bonsal at exactly 11am. We knew that we had a 45 minute drive to get there. But despite all of our best efforts to leave early, we got out the door right around 10:15am. I figured that I could make up time on the highway... only it took forever just to get to the highway! We. Hit. Every. Single. Light. On. Creedmoor. Road. And remember what I said about avoiding the mall? Well of course we had to drive right by Crabtree Valley Mall to get on the highway! Lots of Christmas shoppers driving into the mall around 10:30am, just two weeks before Christmas...

Ugh. I was not a happy driver.

We cruised down Rt 64, and seemed to be making pretty good time. We got off the highway at the New Bonsal exit... and wouldn't you know it, we got stuck behind a peloton of bike riders. I wish I was kidding. By this point, all we could do was laugh. It was 11am on the nose when we rolled into the parking lot, so I figured that we had missed the train.

We got everyone out of the car in record time. The diesel train engine was cranked up and ready to roll. Happy passengers were anxiously awaiting the train to start. Nate ran one way and I ran the other to try to figure a way onto the train. I had Matt strapped to my front, and was pushing Will in his wheelchair when I ran into a gentleman from the railroad who angrily asked me if we had tickets for this train. He repeatedly told me that I was late (no kidding, angry dude, does it look like I am running around, having a good time here?) and that I was making the train late too. Gee thanks.

Finally we found the train conductor and he calmly told angry dude that he had extra space inside the caboose as long as we didn't mind sitting inside. Perhaps I didn't mention that it was barely 35 degrees outside on Saturday, had started to rain, and the train cars have no windows! Inside sounded good.

They helped us load Will's chair in the caboose and we all climbed in. Luke immediately started asking where Santa was. Because we were at the back of the train and Santa was slated to start at the front and work his way back, we had a while to wait. That didn't seem to matter though, because once the train started, both Luke and Will were completely enthralled. Will loves the motion and Luke wouldn't stop staring out the window. It was awesome! And we didn't miss being outside one bit.

The hour-long trip went by in a snap. We seriously had the best time. Everyone was so happy and relaxed. It was fun to be in the caboose and be able to look out the back of the train. The conductor kept walking past us to check on Santa's progress through the train cars and reporting to us where he was. Luke enjoyed looking for Santa and was so excited as the man and his belly got closer and closer...

But as it turns out, Santa's arrival was a bit of a letdown. Luke and I had been working all week on what he was going to say to Santa. But when the big man entered the caboose, he shook Luke and Will's hands, asked me if I wanted a picture, sat for a photo, and then was off to see some other caboosy kids. Luke and Will didn't really mind, but there was no sitting on the lap and being asked if you had been a good boy. Santa's elf handed out candy canes, and even gave me a lump of real coal! I didn't figure out that it was real, though, until I had already had it in my pocket for a while and my hands were covered with coal dust. I digress. And did laundry.

So we got some good pictures, (briefly) met Santa, and had a fun time as a family once we finally got onto the train. Despite my best efforts to dissuade Luke and talk up reindeer and sleighs, he now thinks that Santa rides a train to the North Pole. Oh well, I suppose there are worse things! The event clearly left an impression of both he and Will, and they're both ready for Christmas. It is really going to be a fun holiday with them!

Oh, and angry train dude apologized for yelling at us once we got back to the station.

Determination

I read somewhere recently that more and more kids are foregoing the crawling stage of life. Babies are spending less time on their stomachs than in previous generations because parents are putting them to sleep on their backs as a part of SIDS prevention. So babies go from being a baby blob to a sitter to a cruiser to a walker. No crawler.

For a long time, our physical therapy with Will focused on trying to teach him to crawl. Because there were 4 limbs to control and strengthen, Will seemed to get very frustrated very easily. But we always thought that you had to learn to crawl before you learned to walk. Our physical therapist proposed that we try Will walking and see how he did. We thought the idea was a little crazy, but decided it couldn't hurt.

Will was strapped into a harness and had his foot braces put on. The harness was attached to a treadmill, and then the treadmill was turned on the slowest possible speed. Our physical therapist moved Will's feet forward for him and he screamed for the whole minute.

But pediatric physical therapists and parents of children who need physical therapy are undeterred by shrill cries of protest.

So over the past several months, Will has worked harder and harder on walking. And he's REALLY making progress. Whereas he had no idea what to do with his feet when he first started on the treadmill, he is actually initiating steps on his own now. And that first minute? Well now that's just Will's warmup. When we were at PT this evening, he did 6 minutes and only protested the last 30 seconds.

If Will can work up the strength and coordination to initiate these steps now, who knows where physical therapy could take him! He could move on to using his dynamic stander more often, perhaps then graduate to a walker and even crutches! Maybe this doesn't seem so exciting to you, but to us, this is amazing! The idea of an independent, mobile Will warms our hearts. He might still have to work on holding up his head while he's walking, but that can be next week's therapy goal. For now, we're going to marvel at Will's admirable drive and sense of determination.

SlaviLeaks

Some additional photos from our Christmas photo shoot... the good, the bad, the funny. Totally unedited and unauthorized.