Finding the extra in the ordinary

So there's this kid.  He's 15.  To his dismay, he may be almost done growing- he's nearly 6 feet tall and currently weighs 185.  He's always had size to his advantage- giving him confidence on the playground, the court, the field, among his friends.  Physically, he's very strong, and more has always been expected of him because of his size.  There are advantages and disadvantages to this... and one thing that is often mistaken about him is that he's a big, mean, cold-hearted kid.  Those of us that know him best, however, know that he is not this way at all.  He's a softie.  But that's suppose to be a secret from the general public, I believe.  Hence the "scowl face" he has adopted as his normal expression over the last year.

So it's moments like this one from last night that choke me up way more than watching him sack a quarterback, steal a rebound from that giant kid from Northwest Christian, or wrangle an ornery steer across the corral.  It's the ordinary moments.  Like when we've gotten home late from a school event-  homework has come out and Kacy is shuffling around in his pajamas.  Kacy walks over to the kitchen island and reaches up for Tyler.  He's scooped up and held while geometry homework is finished.  For Kacy to initiate this is rare but for Tyler to respond is not.  He's always got time for his brother.  And it's these moments that I don't want to forget.  It's these moments that make me realize, it's all good, diagnosis or not.  It really is. 

On the way home from dropping Tyler off at driver's ed this morning, my man, George Strait, sang to me... a song I had forgotten about but one of my favorites.  

"Life’s not the breaths you take
The breathing in and out
That gets you through the day
Ain’t what it’s all about
Ya just might miss the point
If ya don’t slow down the pace
Life’s not the breaths you take
But the moments that take your breath away..."

(side note:  Tyler's a great kid and wonderful brother.  But still grounded for a month in spite of moments like this!  He is very typical in most respects! lol!)

On the Upside...

I've been in the dumps.  Wallowing.  And I was starting to feed off it.  Figuratively and literally.... thank you, Cool Ranch Doritos and Dove chocolates for the 10 pounds I have put on in record time.  

So I decided to distract my mind for a bit and put together a couple of videos for my boys.  Tyler and his love for football -- and Brett and his complete adoration for all things basketball.  The laundry piled up.  The dust bunnies partied in the corners.  The weeds grew tall in the cool, rainy, sunny spring weather.  But the boys loved their surprise and it was worth it!  

Again... a large responsibility of mine is ensuring they remember their childhood as being as much about them individually as it is about them as a Kacy's brothers/protectors/helpers.  And this is just another attempt at doing that.  (If you choose to watch, you'll need to pause the music player at the top of the page or else you'll get a very unappealing auditory experience.... Also, on my computer, it is viewed best on YouTube.  You just have to click the "YouTube" link in the bottom right of the video.)

Love you, boys. To the moon and back.  

Someday, everything will make perfect sense.

Challenging week in our home.  Teenagers breaking rules.  Disappointment in those who seem to disvalue friendship.  Grief over the unfortunate choices of others and how it is affecting those who love them.  Concern over health issues of friends and family.  And an anticipated diagnosis didn't come.  

About six weeks ago, Dennis and I took Kacy to Seattle Children's Hospital where we met with several specialists who encouraged us to do some genetic testing.  A neurodevelopmental specialist basically prepared us for the blood tests to confirm something called Fragile X Syndrome.  For the past six weeks, I have watched the sun come up while researching this syndrome, reading books, watching videos, exploring  blogs written by parents of children with Fragile X, joining facebook groups around this syndrome, and talking with my close friends and some family about it.  The strangest part, for me, was coming to terms with the fact that we didn't have this unique little boy who was writing his own book with his varied assortment of quirks, behaviors, and preferences.  To learn that there were other "Kacy's" out there was strange to accept.   For so long we have felt as if we were isolated in our journey.  Even stranger to accept was that there are some of those children whose appearance so strongly resembles his, they could be his brothers!  But didn't take long before I realized this anticipated diagnosis was actually providing a sense of relief!  Kacy seemed to fit perfectly into this box labelled "Fragile X."  Learning just  how many Fragile X Syndrome characteristics he has and the fact I may now be able to answer, "Pardon me for asking, but what IS Kacy's diagnosis?" brought a peace within me that was ten years in the making.  There is so much about his care that would be simplified by this label.  So many loved ones that could now come to terms with Kacy, the reality of what is going on, and how we need to be handling it.  Support groups.  Mailing lists.  Meetings to attend and clinics that had waiting lists we could get on.  A direction for the care we so desperately want to provide him. 

But in less time than it takes to read this post, that diagnosis was eliminated.  

"The blood tests did not come back positive for Fragile X, or any of the 250 most common chromosomal disorders,"she said.

Silence.  

"Mrs. Kincaid?"

"I'm sorry.  I'm just so shocked."

"Me, too, Mrs. Kincaid."

One step forward, two steps back

Today, Kacy and I attended a short musical at school that his regular-ed classmates were putting on.   My goal was to get him into the auditorium without a "transition meltdown."  Thankfully, due to a few strategies and a whole lotta luck, we made it without a scream, stomp, or tear!  While walking down the aisle to find a place to sit, he spotted the familiar faces of the special education aides and the other students with special needs that Kacy would spend a majority of his school day with.  He walked right over to them and sat down, leaving me to sit across the aisle by myself.  Initially, I was thrilled!  I was so thankful he wanted to sit with his old buddies, he remembered the routine and didn't bat one eye about leaving me alone.  However... in less than 2 minutes, Kacy was sitting there exhibiting the socially inappropriate behaviors that I have spent the last six months trying to reduce/eliminate/exchange.  The "Stevie Wonder" impression, the spontaneous clapping, chewing on his shirt, the squeaks and noises... they were back.  I am confident, had he sat with me, he would have sat there quietly, arms crossed, head resting against the back of the chair, watching the musical and clapping after songs.  I just know this would have happened because for the past six months, we have been really focusing on his social behavior and and he has shown a great deal of improvement.  Outside of rocky transitions, he will usually sit quietly and behave accordingly.   Today's behavior was so upsetting to me, but let me be clear that  I'm not mad at the aides for allowing him to sit there and act like that.  It's that I feel defeated.  Did he know he could "get away" with it? Was he excited and trying to calm himself?  Did he revert out of habit?  And now what?  When he heads back to school in August, what am I suppose to do?  It's impossible for all of his goals to be met in the regular classroom, but the importance of the influence of behavior was obvious today.  What is more important?  That he can complete a puzzle or put all the blue plastic bears in a blue bowl, or be able to cope and behave in different environments so that he can be an active member of our family?  *sigh  Just when we made one step forward, we take two steps back.  

Siblings

September 2012

Having Kacy in our family has taught us all more lessons than we knew we needed to learn, but I think that's true for all people regardless of your family situation.  Time brings experiences that shape us into people we never knew we would become- good or bad.  Like so many other parents out there, I pray that I am giving my boys the tools they need to make the kind of decisions that will mold them into men who are honest, trustworthy, hard working, loving, and kind.  I hope that they are prayerful, and have faith that pulls their hearts toward God when temptations, frustrations, challenges, and disappointments distract them and make them question a loving God.  As much time as I spend praying about those things, I spend even more time praying that they will have the heart to endure the lifetime of responsibility and concern that lies ahead of them as the brothers of a sibling with a disability.  

When Tyler was in the fifth grade, he experienced his moment of clarity.  It's personal to him and I won't share the details, but there was a very specific day when he realized the significance of Kacy's disability and what it would mean for the future.  I keep waiting for Brett to have his own moment, but I'm not entirely sure he will.  Brett and I have always been able to talk very openly about Kacy's disability.  He asks lots of questions and is able to find the bright side of things and be lighthearted about others.  (hmm.  Kinda like me!)  Tyler prefers to talk about Kacy on a need-to-know basis.  He also wants the facts and only the facts, he'll ask maybe a question or two, then he's "out."  I can keep talking- but he's no longer actively listening. (HMM.  Kinda like his father! )  I appreciate the differences in my boys as much as I appreciate their similarities  and it is probably what will make them an excellent team when it comes to making decisions for their brother in the future.

We often get compliments on how good Tyler and Brett are to Kacy.  And let me tell ya'... it warms our hearts and puts a big ol' lump in our throats. We are so blessed by their unconditional love for a brother who loves them back, but can't show it in a traditional way.  We are so blessed by their unconditional love for a brother who likes to play with them, but not in a traditional way.  We are so blessed by their unconditional love for a brother who idolizes them, but not in a traditional way.  They never seem embarrassed by him- drool, noises, stimms, and all.  In fact, they've been known to throw a dirty look or give Kacy a protective squeeze when a curious observer gets caught staring.  They yearn to include him in everything we do.  They stand up for him.  They speak up for him.  They cheer for him.  They understand him.  As often as teenage boys will let me, I try to let them know how much I appreciate all they do and how much they love Kacy, but I always worry that it isn't "enough."  I think the emotional needs of siblings of children with special needs are often neglected, especially when the siblings seem to so "good" to their special brother, or the family seems to be "handling things so well."  While Dennis and I are blessed to get lots and lots of support and positive feedback from friends, family, even strangers-- Tyler and Brett don't.  While Dennis and I often get compliments on how the boys treat Kacy, Tyler and Brett don't.   And since I've never been a sibling of a child with special needs, I don't even know what to say, really.  So I pray.  I pray and I pray and I pray that they feel encouraged, supported, and blessed as they travel this road with Kacy.   I pray that they don't look back on their childhood and feel that it centered around their brother who was disabled, but rather it centered around the love of a family.   I pray that they feel valued, respected, and cherished.  I pray that they know very proud they make their dad and me.  They were given a life that is very different from that of their friends- and they are rising to the challenge with open arms and huge hearts. We love you, Tyler and Brett.  And Kacy does, too. 

Friday's Favorites.... August 2012

Up early to work in the harvest field, then ending their day washing steers... tis the season!

First day of football practice freshman year.  Where did the time go?

First day of school.... Ty-freshman, Brett-seventh grade, Kacy- fourth grade

August

Ohhh, boy.  Oh, boy, oh, boy, oh, boy!  I never dreamt I would drop the ball THIS bad!  Let's just say things were a bit busier this year than I had envisioned.  So now.... to get caught up, I will be posting a "Reader's Digest" version of each month.  My goal is to do one month every other day.... so in a couple of weeks, I should be up to speed. (In theory, of course.  We all know how well I met my first goal- so no one should hold their breath.)

Let's go back to the good ol' days of August....

August means harvest, fair steers, back-to-school, football, and most importantly, Kacy's birthday!!!  The irony of typing those three exclamation marks after "Kacy's birthday" is that he is NOT a fan of his birthday parties.  If I could, I would cue up a haunting pipe organ "DUN-Dun-dunnnn" after those words.  

The first few years of his life were great- we whooped it up with friends and neighbors, big dinners, fancy cakes, kids running through sprinklers in the yard, fun themes with great decorations, lots of laughter and excitement!  I've always enjoyed celebrating the boys' birthdays and tried to make a big deal out of them.  It's the one day that could be completely-over-the-top-fun-and-exciting-because-they-were-born-and-we-love-them!  It was less about the presents and more about the fun!  So to continue this tradition with Kacy went without question.  

But... somewhere around his 5th birthday, things changed.  We were celebrating with family and friends.  The theme was harvest-baby-appropriate, "John Deere." The cake resembled an actual combine- complete with grain in the bulk tank.  There was a "wheat pit" filled with toy combines, trucks and tractors for the kids to play in.  Candy, stickers and bubbles were nestled in a green bandanas and tucked in a yellow goodie bags.  Balloons and streamers blew in the summer breeze.  Family and friends filled the yard.  And Kacy was on my lap, slowly melting into a puddle of teardrops.  This wasn't his idea of a "happy" birthday.  Making him sit in his booster seat while we sang "Happy Birthday" resulted in all-out crying.  I'll never forget the anguish on his face and the crocodile tears that fell from his cheeks as he looked to me to save him.  The song finished and the smiling guests made comments about how we must be terrible singers... but that wasn't at all what was going on.  Putting a stack of presents in front of him was the last straw.  I remember having to open them for him while he sat on my lap, buried his head in my neck, and all too quickly the crocodile tears became sobs.  Game over.  A brief thank you mixed with an apology and Kacy and I retreated to the house.

He recovered quickly, and I slowly pieced together what was happening. His inability to regulate sensory input made situations like birthday parties miserable for him.  He revels in the familiar, doesn't like the unexpected, and is a nervous wreck when he can't anticipate what is coming next. It was eventually explained to me that his brain can't "file" input like a typical brain can... so where I can hear the song and watch Kacy's precious face... he  hears the song, sees the candles and the blowing streamers, the children crowded around him, feels the breeze blowing through his hair, hears a man sneezing, and the sees smiling faces and clapping hands of 25 sort of familiar adults.... all at the same time.  Total sensory bombardment because he can't block out/file away any of it.  And to top it off, once he finds my face in the crowd, the one who is suppose to offer comfort, I just stand there- and make him suffer because I want just one evening of "normalcy."    This may sound silly, but to accept his processing problem was hard for me and took some time. Years, in fact.  But, from that point on, his "parties" changed significantly.  

So fast forward five years to the BIG ONE-OH!  It was a much different experience for him and he had a great birthday because he got to do his favorite thing of all-- ride in the combine!  The crew stopped a bit earlier than usual and we enjoyed dinner right in the middle of the parked trucks, combines, and tractors.  We didn't sing.  I ordered some tractor-shaped birthday cookies so there were no candles or anything even resembling a birthday cake.  The presents were brought home and placed in a corner of the living room for him to open on his own time.  He was a happy 10 year old, and not one tear was shed.  The next day, we traveled down the road to Grandma & Grandpa Aune's.  There we had cake with a candle, and even sang.  Not one tear.  The quiet, familiar environment with just Grandma, Grandpa and Mom made all the difference.  So now, we celebrate Kacy on his birthday as opposed to celebrating his birthday.  Sometimes it takes some explaining because it looks like nothing special... but the truth is, it really is a special day for him!  From the moment he wakes up, Kacy gets to do exactly what he loves the best- no surprises, no anxiety, no stress.  And he's one happy boy- which means we are one happy family!

Watching and waiting for his ride to show up!

Amazing what the boy will do when motivated!  Climb, Kacy, climb!

Coming in for birthday dinner!  

Look at that boy walking fast enough to kick up dust, standing tall, and content as can be!

His favorite people in the world and his biggest fans.

Checking out the cookies!

Mmm!

Celebrating Kacy at Grandma Judy & Grandpa Bud's

 What he found when he went to his room after his shower!  A nice surprise!

Happy Tenth Birthday, Kacy.  
You are amazing just the way you are!