Wednesday, February 27, 2013

Sore loser

Luke's got some Baldauf blood.  We are a competitive family.  It doesn't matter the contest.  Baseball.  Trivial Pursuit.  Go Fish.  ScrabbleTockDallas the board game.  Guess Who?  Ask Nate about the **only** time he ever played Monopoly with me and my Baldauf family.  He'll tell you the truth.  We like to win.  And more than that, we don't like to lose.

Long after I had finished purchasing Christmas gifts last year, Luke wrote his letter to Santa.  The only thing he really wanted was a video game.  I (Santa) had not purchased any video games.  And while Luke enjoyed his Christmas very much, he mentioned that Santa forgot to bring him his video game.

Thankfully for Luke, Christmas with Uncle Drew and Aunt Nicole happened after the actual Christmas.  And Uncle Drew happens to have some ins with Santa.  So Uncle Drew and Aunt Nicole totally rocked it out of the park when they showed up with Mario Kart for the Wii and two new steering wheel controllers to drive.

Luke has been doing better with behavior at school these days, and when he has a good week, he is rewarded on the weekend with some Mario Kart time.  He loves to play his new video game.  He takes it very seriously.  He puts his whole body into moving that steering wheel around, often bouncing around an area about 20 square feet as he maneuvers his way around the track.


Nothing seems to make Luke happier than racing against someone and winning.  He loves to race as Luigi and laughs whenever he passes you.  He hasn't mastered the art of the graceful win yet.

When you play Mario Kart, the Wii also puts other racers in the race.  These are other Mario characters (Luigi, Bowser, Peach, etc) and run by the gaming system.  Usually there are 12 carts on the race track.  They're typically pretty decent racers. 

We weren't quite aware of Luke's love affair with winning (and opposite-of-love-affair with losing) until he lost a race.  He was happy and doing well throughout the whole race, but at the very end he lost his lead.  Really lost.  Like he came in 12th of 12 cars.

And when Luke realized that he had come in dead last, he lost it.  LOST IT.  MELTDOWN.

One of those moments as a parent when you aren't sure if the emotions are real.  Could he truly be this upset over a game?  His reaction was so strong and pure that it had to be real.  I felt bad that I was taking pictures.

Luke was having a hard time calming down.  We asked if he wanted to stop.  He asked to race one more race.  He sat down with Nate again, holding back his anger and sadness, waiting stoically for the next race to begin.  In a minute, he was bouncing out of his seat again, throwing all of his being into steering the cart.

In an instant, the race was over.  Luke looked at the finish board.  He had come in 11th... one of the other characters had come in 12th.

Success.  All was right with the world.  He might not have won like he really wanted to... but he didn't come in dead last.  And he was okay with that.

Tuesday, February 26, 2013

Measuring time

Seems like annually, in the throes of cruddy February weather, we get the notion that it is time to measure the boys' heights.  Time to line them up against the door frame in the laundry room and make those marks to show a year of growth.

What big boys we have!!  Will is still leading the pack at nearly 44 inches.  Luke is pushing 43 inches.  And Matthew posted the biggest height difference from last year, now measuring in at nearly 37 inches tall.  He grew 4 inches in the past year!  Will and Luke each grew about a 1.5". 

Thankfully everyone had a good time with the measuring and enjoyed seeing how tall they were a year ago, and how much they've grown!

Our excitement over everyone's growth was a bit hampered today, however.  Will went in for his regular Botox shots in his hamstrings.  While he was there, his height and weight were measured.  And although Will has followed his growth curve for his height over the past year, his weight has dropped lower on the curve.  This means that he did not gain weight proportionally to his height increase.

You may recall that we've been fighting this weight fight for a long time.  It isn't new.  But it was a bit of a shock, since Will has been gaining weight steadily since he got his g-tube in 2009.

This past year has been busy for us.  We had to focus our attentions on the most critical and pressing issues.  For Will, this meant getting his seizures under control.  As much as I'd like for us to be able to focus on everything 100% all of the time, our focus on Will's feeding therapy dropped off a bit.  And then with the transition to a new kindergarten program and a new nursing assistant, Will's daily intake of calories has dropped.

Don't get me wrong, he is still eating and drinking by mouth and getting calories in his g-tube overnight.  He hasn't dropped weight - he just hasn't gained as much as he should.  To remain healthy, we need to get him back to his growth curve. 

So now, we return our focus to the arena of food intake.  Re-focus the focus.

Wednesday, February 20, 2013

Be an advocate

Nate and I have never known parenthood without the reality of special needs.  First it was pre-parenthood when I was pregnant with twins - special high-risk doctors appointments for a high risk pregnancy.  When Luke and Will were born, we learned all about the medical needs of babies born too early.  And since they were very young, we've dealt with the reality of regular doctors appointments, medications, therapies, seizures, nebulizers and everything in between.

So from day one (or pre-day one, really), we've had a lot on our minds.  It took a while for us to get our heads around our new and surprising reality.  Over time and with acceptance and love, we have learned look at the world differently than most parents of typically developing kids.  We go to Toys R Us at Christmas time and play with toys on the shelves as we think Will would.  We go out of our way to find playgrounds where all our kids can play together.  We make appointments for Botox shots.  We think about IEP meetings and goals months in advance, and special education and school placement and the safety of bus lifts and tie downs for wheelchairs.  We've just gotten to this reality where we think like advocates.  We want to make the world a better, more inclusive , and accepting place for our kids.

I learned this week, however, that as good as I have become at being an advocate for Will, I have not yet found my voice to be an advocate for other children with special needs.  But I assure you, I will be working to improve myself.

Matthew was off from school on Monday.  We spent the day running errands - signing Luke up for t-ball, getting Will his new braces, finding new shoes.  Matt was behaving well and starting to get hungry, so we stopped into our local Chik-Fil-A.  It was a cold day, and they have an indoor playground - though we've never been there before.  We decided to give it a shot.

As we ate our lunch, I noticed that there were a lot of big kids in the playground.  LOUD kids.  And while Matt can stand up for himself, I was hesitant to have him go inside and play.  We finished our lunch, and I tried to trick him into leaving.  No luck.  That playground had his name written all over it.

So we went inside.  I stayed like 2 feet from him as he warmed up to his environment.  Eventually he wasn't intimidated by the other playing (LOUD!) older kids, and I sat down... like 5 feet away.  I was still hesitant.  He's still my baby, despite his fearlessness and bruises like an MMA fighter.

Shortly after, a man came in with a boy over his shoulder.  The man was older, perhaps not the boy's dad, but definitely some type of family member or care giver.  He put the boy down.  The boy was about 6 or 7 years old.  And I noticed immediately that he had cerebral palsy.  He was standing on his own, but walking carefully on pointed toes with tense arms.  He had a smile on his face so much like Will's.  He was non-verbal, but clearly very happy about being at the playground.  I was excited to see how he played on the playground, and how he shared it with the man.

The boy made his way towards the stairs to the slide.  The man walked away.

WALKED AWAY.  Like to the other side of the playground.  He was not paying attention.  In my mind, the next few events happened in slow motion, but they likely happened in a matter of seconds.

The boy slowly and deliberately made his way up the first wide step.  It took a while, and he was thrilled when he made it to the base of the second step.  But he was exhausted from his efforts.  He laid down on the step, with a huge smile on his face.  His chest heaved with the effort of his climb.  He was very proud!

A couple of children carefully stepped past him.  He still smiled.  Some of the (LOUD!) kids said hello to him and smiled as they scooted past to go up the stairs.  I guess they weren't so bad after all.  The last kid to go past, though, wasn't as careful.  I stood up to help the boy (the man was still no where near us) just as he was kicked in the head.

I had a lump in my throat.  I knew it was an accident, and the walking boy was not acting maliciously.  But someone had to help.  My feet were heavy.  The boy cried.  God, he sounded like Will too.  I felt so sad.  The man must have heard the cry and finally started paying attention, walking across the room to pick up the crying boy.  And he just walked them out of the playground.  There was nothing more.  He had no clue what happened to that boy in his care.  Had he paid attention, been realistic and thoughtful about the situation, that little boy could have had a lot of fun with him... it didn't have to happen this way.

I was silent.  Now looking back, I know that I should have done something, said something.  I should have been an advocate.  I don't know that boy.  I may never see him again.  But I should have stood up for him, since he apparently didn't have anyone else to do it.

As much as the next parent of children with special needs, I want my kids to be accepted.  I want them to have friends, and to play and to laugh and to be able to go to the playground anywhere, including Chik-Fil-A!  But no where in my mind does it seem like a good idea to leave my semi-mobile, non-verbal child with special needs to fend for himself at a busy playground. 

As a parent or a grandparent or a friend - you have a choice.  You can be a pushover.  You can be an advocate.  You can be negligent.  You can be outspoken.  You can be quiet.  You can shake your head and do nothing.  You can stand up for what is right.

I challenge you to join me and stand up for what is right.  Be an advocate.

Sunday, February 17, 2013

My sweet Valentines

Being the only girl in a house full of boys has its advantages some times.  Certainly not when I'm the only one who minds if the toilet seat is left up.  But certainly on Hallmark holidays when love is in the air.  This momma's a lucky one.  Four valentines.

We love decorating Valentine's cookies together, me and my Valentines.  We make heart shaped sugar cookies, and then load then up with icing and sprinkles.  The boys typically have eyes bigger than their stomachs, though, and end up eating just two bites of their Valentine treats before putting them down and begging for water.

One of the most special parts of Valentine's Day was that Nate worked with all of the boys to make handmade cards for me.  I think any momma out there will agree that handmade cards are best.  

I opened Luke's card and was so impressed at his writing!  Before I could open Matt's card, he pointed out that he glued the hearts on the front all by himself.  Such proud boys.  Such good Valentines!

Will's card was just beautiful, and kudos to Nate for coming up with the most thoughtful and creative hand stamping out there!  We've often done open hand stamps with Will, but it is a difficult and messy operation because Will doesn't like to hold his hands open (especially not when you want him to).  He spends a lot of time with his hands in a slightly curved position.  

So Nate decided not to go against the grain.  He stamped the side of Will's hand, rather than trying to pry his fingers open.  And the results were truly of Valentine proportion:

For some reason, I can't get this photo to rotate.  But you get the idea!  The stamps of the sides of Will's hands made a beautiful heart on the front of the Valentine's card he made for me.  Oh, how I love this!

I hope that you had a joyous Valentine's Day!

Thursday, February 7, 2013

Boss kicks

When I was in elementary school, I was friends with a girl whose parents were living an organic and natural life long before it was popular.  They practiced acupressure.  They used homeopathic remedies to treat ailments.  They didn't have a television.  They made cookies with carob chips rather than chocolate.  It was different from how I grew up, but a positive alternate view of the same world.

Through their family, I learned about composting.  I learned about Tom's of Maine.  I learned that playing music together (even if you're terrible at it) can be a whole lot of fun for a family.  I learned about energy conservation and Warhol and lemongrass and juicers and Emergen-C... from self described former hippies living in the early 1990s in suburban Washington DC. 

One day I walked into their house with a new pair of black Doc Marten steel toed shoes on.  My souvenir from a family trip to England.  I loved those shoes.  Before even saying hello, my friend's father commented:

Those are some boss kicks.

I thought he was speaking another language.  Then he explained that he was just trying to tell me that he thought my shoes were really cool.  The term has always stuck with me, though I've never felt hippie enough to use it.  Until now!

Luke was very excited to learn recently that he no longer needs his full foot braces.  His orthopedist and his physical therapist decided that he needed less support in his shoes - and they fit him up with a pair of orthotics.  The new orthotics fit in the bottom of his shoes, and there is nothing that wraps around the top of his foot.

When we picked up the orthotics, Luke tried them on and a huge smile immediately spread across his face.  His former braces were designed to squeeze his foot, but despite all best efforts, they left a lot of red marks and callouses on Luke's feet.  He did not like them one bit.

They feel so good, Mommy.

Then he proceeded to run around the orthotics office.  The orthopedist made me promise that we would get rid of his brace-beaten shoes and get him fit with good supportive athletic shoes.

We headed down the street to our local New Balance store, where they actually still talk to you when you walk in the door and are willing to measure your feet.  They measured Luke's feet and his orthotics, and pointed out a couple of shoes that would work well for him.  I gravitated to the Velcro shoes, because Luke can't tie laces yet.  But he got a sheepish grin on his face, and pointed to a pair of dark gray shoes with bright green accents... and laces.

The shoe salesman came back with a bright red box with a size 12.5 shoe.  I could smell the new shoe smell and Luke's excitement as the salesman removed the New Balance shoe inserts and replaced them with Luke's orthotics.

The salesman patiently showed Luke three times how to tie his laces.  He gave it a try himself.  When the shoes were properly tied, Luke hopped off the seat.  With a twinkle in his eye, he walked around the shoe store.  I was surprised that he didn't trip on something - he was more interested in watching his new flashy shoes than keeping an eye out for errant shoe size measurers.

These are fast shoes, Mommy.

He was so proud!  I looked at his feet as he jogged proudly around the store - his victory lap.  I looked for some discernible limp... a dropped foot or a turned in ankle that would indicate that Luke's feet weren't ready for the jump to orthotics and that I would have to be the one to tell him that he had to go back to his painful braces.  But there was no limp.  He was walking deliberately.  Feet up, straight, no dragging.  I couldn't help but smile.  And finally, the opportunity I've been waiting for since the summer of 1993...

Those are some boss kicks, buddy.

He looked at me like I was speaking another language.  And so the cycle continues.

Tuesday, February 5, 2013

Raven Rock

As I previously mentioned, the Baltimore Ravens are Luke's 4th favorite NFL football team. He was excited that they were in the Superbowl. The day beforehand, we decided that we needed a break from all the inside togetherness that the winter months typically bring, and made a bee line for an NC State Park.   After consulting a map of parks, we opted to trek to Lillington and introduce ourselves to the appropriate-for-the-Superbowl Raven Rock Park

Raven Rock is a rock wall that was carved thousands of years ago by the Cape Fear River, which now flows far below it.  Though there were several easy trail options at the park, we thought that we were best suited with the 2.1 mile trail that took us to Raven Rock and an overlook high above the river.  The park ranger had recommended a 0.2 mile trail for a family with little kids.  Ha!  We're tougher than that (I thought to myself).

We loaded Will into his backpack on Nate's back (who miraculously held out very well - Will is pushing 45 lbs).  We zipped coats, put on hats and gloves, and off we went. 

Luke's reading skills continue to amaze us, and he *understandably* was a bit hesitant about starting our hike.

Though the boys were a bit slow-moving at the beginning of our hike, they quickly got excited with finding the next bright orange trail marker.  It matched Luke and Will's winter coats.

Raven Rock and the overlook are about a mile from the parking area, on a lovely looping trail through a pine forest.  We tend to choose easy trails to take with Luke and Matt on foot, and the trails at Raven Rock were a good fit.  Just minimal tripping over tree roots. 

As we approached, there were signs pointing us in the direction of Raven Rock.  Luke read the signs to us, and everyone was excited to see the namesake destination of the park.  Until we saw the steps down to actually get to the Rock.  Really we weren't worried about the steps down.  It was more about the reality (and pain) of getting everyone back UP those steps that we were thinking about...

But finally we made it!  The rock formations were enormous - much larger than what we were expecting given the flatness of the hike to actually get to the riverbanks!  We stuck around for a while, enjoying the geology, icicles, and huge masses of tree roots.

At the edge of the Cape Fear River, there was another sign to enjoy.  Just in case you thought that *maybe* the trail continued right into the water...

After poking around for a bit longer, we hesitantly made our way back up those steps.  I had worn a "just in case" backpack - for Luke or Matt if they got tired on our hike.  As luck (or smarts?) would have it, Matt decided that he needed to get in the backpack at the base of that enormous staircase.  He was ready to get back out just as soon as we were back on the path.  Tough little Luke made it up the stairs all by himself.

By the time we reached the overlook, the excitement of the hike and the Rock and the steps and the river had passed.  So like the prepared mama that I have become, I whipped out some snacks and water to assist with mood elevation. 

That was short lived though!  With less than half a mile to go, Will started crying, Luke started whining and Matt demanded to "pick you up" (which means he wants to be picked up, but NOT in the backpack).  Nate and I smiled through it, and we were all happy when we reached the van!

Note to self: pick a slightly shorter trail for the family's first hike of the year!!  Maybe we should have listened to the park ranger...