I'm in His World Now!

When Javy was little, he had this T-shirt.  It had dinosaurs on it and it was from some natural history museum, I think in Indiana or some place we'd never actually been.  I bought it at a thrift store, probably.  But on the back it said, "You're in their world now."  That phrase came back to me the other day, in all places, Javy's IEP meeting.  I think I finally get it.  The teacher asked where do we all want to see Javy.  My response was simple.  I just want him to move across the floor independently and communicate in a meaningful way on his own.  I could care less if Javy can pick up a crayon or stack blocks, just because that's what kids are supposed to do at a certain level.  When Javy is interested in something, I've seen him use his pincher grasp and turn things side to side.  I'm done trying to fit him into this narrow box of societal rules and regulations.  Let him squeal at inappropriate moments and drool too much when he's having bad days.  I just want Javy to do the best he can and enjoy life in the moment that he's in.  The reality is that this our life, and its just the way its gonna be.  Just got to get on with it.  I'm going to give him more and more opportunities to just be himself and try new things.  As a parent and a teacher that's the best we can do for our kids, is give them plenty of room to grow.  

I'm really not Supermom!

So here it is....  I screwed up last week.  By the way, Javy has been in school for a full month  I love what the teacher is doing with Javy.

We noticed that everyday he was coming home with some kind of hair goop and his hair was all spiky.  I just figured the girls in his class were getting to play with his hair and fix his hair up.  We got a note last week from the teacher.  It said something to the affect that we may have noticed that he comes home with his hair all dolled up.  First thing in the morning they fix his and his other classmate's hair. Then they take them to their General Ed peer's classroom for some social time.  She feels that its important for him to fit in and have his hair all nice.  I totally approve of this and think its pretty cool that he gets to hang out with everyone, not just his Special Ed class.

But then it made me take notice of his hair, it was kind of scraggly and getting long, like the pre-Keanu Reeves length.  I decided that I should trim it.  I started on the side, cutting off his faux pork chops (sideburns).  Couldn't quite get it even, but I got it close enough.  Then I noticed that he was looking a little too much like John Stamos from the "Full House" years and I didn't want him to end up on "The People of Wal-Mart".  I tried to get the back straight, but it looked too choppy.  I decided to try trimming the back and the sides with the clippers.  I don't know if all the pressure of having to cut a big middle schooler's hair got to me, but I ended up just buzzing the whole thing.  Javy got so mad at me, I had to stop in the middle of it because he was full on giving me the droopy face-the complete upside down smile.  I really think that he realized that there would be no more getting slicked up for the girls at school.

Pre-Haircut

Buzz Buzz!  Won't even look at the camera!

Forgave me by Saturday, but only if he could use me as a flotation device!

Sweet Amor!

First a quick update on my journey down the gluten free path!  I got glutened Sunday night, somehow.  Scary thing is that I'm not 100% sure how it happened.  It was either, cross contamination because I was cooking Javy's weekly pancake ration while I made my own dinner.  Or I ate some lunch meat and even though it said gluten free, it probably wasn't.  But it sucks.  I really have no motivation to do much and I'm cranky as  hell.  I'm just being honest.  I know, I am positively addicted to positivity, but I really can't sugar coat this.  I'm just putting a smile on my face and going about my business, but there's just no umph behind it.  Pretty much, all you can do is just wait for it to pass.  Last time it was three or four days before the headache went away.  All of this really makes me wonder.  How come I've been eating gluten all of my life and I was able to function pretty well?  I mean, there were issues.  That's what lead us down this path, but it wasn't a show stopper.  Life had to go on.  Now all of a sudden, I cleanse my body and one smidgen of gluten gets around me and its like all hell breaks loose.  Is it because we get so used to feeling miserable and deficient that we don't even know we are?

The other thing is that I've gained some weight.  I've kind of got this figured out and I'm trying to get back on the right track.  I have a limited diet and we're not the richest folks so we can't just up and restock the fridge.  Mom and Javy are eating the gluten stuff (hence, the pancakes).  I'm eating everything else.  It's like being in scavenger mode.  At first, I didn't feel like I was eating that much, but I think that the non gluten stuff actually has more calories.  For example, the picture below was my lunch one day.  It looks really healthy, right?  But its over 500 calories worth of food.  The humus, peanut butter and rice crackers are all high calorie and probably shouldn't be eaten together.  So I'll figure it out.  Its just hard right now with my lack of motivation.  But I think I just have to budget my calories with my new diet.  I'm back to using MyFitnessPal, religiously.

I don't like to leave things on a downer.  You maybe wondering about the title..  I said not much was making me happy right now, but I want to share with you one thing that is.  This is a picture I tried to capture of Javy seriously macking on a girl at KORE, an older surfer girl, of course.  You can see that he's looking down, because she was sitting on a towel in the sand, eating her lunch.  His attention went immediately to her.  But she would have none of it and refused to acknowledge  him.  It was so cute.  His attention could not be diverted until she finally got tired of it and walked away.  Ahhhh, young love.  

No More Drama for this Mama!

I know, in the past, I've described how our life in Javyland is like a roller coaster.  Things will be smooth and good things will be happening and then BAM!  Something happens, like a seizure or we run into a healthcare provider who isn't up to our standards.  At first, this was all very daunting and quite frankly, made me exhausted-the constant jerking and pulling of emotions.  But I just realized something, and this something is probably what all of my wise sensei's have been trying to teach me all along.  I am in control of the roller coaster, I've got my hand on the lever.  I can't change the circumstances or situations that come up, but I can change my reaction to them.

So my goal for my forties is to have better control of my emotions.  I'll give you an example, Javy's first physical therapist really pissed me off.  She made me feel stupid and like I was in the way.  But I will never forget the day, Javy was about a year old and she strapped him to a stander with wheels and expected him to push himself with his hands, in the middle of this big room full of kids at his daycare.  Javy started screaming and I went to take him off of the contraption.  She started yelling at me to leave him alone, how can expect him to do anything by himself, blah blah blah!  So the claws came out.  And I got Javy off the contraption and that lady never came close to him again.  Needless to say it was very dramatic and I'm sure my family and friends got an ear full for weeks about this lady.  It seemed like there was always stuff like that going on.

I call it the "Mama Bear Syndrome".  It's a natural thing.  We see our babies in discomfort and we're going to swoop in and save them.  It doesn't matter what the intentions are of the person, they may be well meaning but we're not going to take the time to ask.  I dare you to try and explain why you're getting close to a Grizzly baby, to its mama!  This is a natural phenomena that I believe is totally meant to be, it's how we survive.  I was joking with my mama yesterday that birthdays are really for mothers.  I mean all I did was live for forty years-that means that I breathed, kept myself hydrated and nourished.  Easy!  Mom not only kept herself alive, but also three other humans.  And then taught them how to keep themselves alive.  It's hard work!


So when stuff comes up, I'm not going to take the bait.  I'm going to control my reactions and just take whatever steps are necessary to resolve the situations.  Action over reaction!

God bless!

Privates!

As if we didn't already know this, but despite Javy's disabilities, he is a normal child.  I just want to share more evidence of his ability to understand what's going on around him.

Today was Javy's first official day as a middle schooler.  I went to the school about mid-morning just to see how things were going, answer any questions and that sort of thing.  I was helping Javy's aide change his diaper and I was telling her about my ninja diaper changing abilities.  (I can change his diaper in his wheelchair, which makes it easy when we're traveling and there's not changing tables.)  Anyway, we're talking about this kind of stuff and I look down at Javy.  He's looking straight at me and giving me the meanest look.  When I look at him, he lets out this blood curdling squeal.  It kind of shocked us a second then it dawned on me.  The kind of stuff I was talking about would embarrass any 11 year old to have their mom's talking about to other people.  So I just apologized to him. I'm sorry Javy.  I won't tell her your personal business anymore.  And he just smiled.  I'll take this kind of affirmation over any dumb IQ test, anytime.  

Sometimes knowing you're intolerant is a good thing!

***WARNING**CUIDADO**ACHTUNG**警告

This blog contains heart wrenching admissions that will either make you laugh out loud, snort, or cry; depending on your state of mind or how well you know the author of this blog.  Read at your own risk!!!!

    I am not perfect!  I have issues.  All my life, since small kid time, I have been overly sensitive and hyper-emotional.  Thing is, its never been a problem, or at least I never thought it was a problem.  Its just the way I am, my personality.  I've had a successful career, raised a child (I'm assuming you all know who I am talking about, he's the whole purpose of this blog.)  I even have friends.  Thing is, I've never changed, I've just learned to cope.  I cope by planning and organizing and bottling up my emotions which makes me extremely inflexible.  But I still never thought about it being an issue, just thought that was the way it is.  My family always likes to tell me that I'm overly sensitive and I need to calm down.  My response was, well, you know that's how I am.  Why not be nicer to me?  

     I'm trying to make light of the issue, but truth is its a hard thing to air my dirty laundry for the world to see, but its worth it, if it helps somebody else.  So please don't use this against me, because I am oversensitive and you don't want to make Javy's Mama cry.

     So we've had a pretty busy summer.  The Bama Family came to visity-my brother and his three kids.  Javy loved spending time with his cousins.  

Cousins!

     I stood up on a standup paddle board by myself in the ocean, with Javy on the front!  He pretty much yawned about it the whole time and humored me.  He is a big wave surfer, you know.  But it was pretty special for me.  

     And amongst all this hustle and bustle, I've learned that I'm gluten intolerant.  Again, I've never thought that there was anything wrong with me.  Over the last year and a half, I've lost 89 pounds.  I lift weights, I run, swim, hike, whatever activity presents itself to me, I do it.  But one day, I came home from work and I had this conversation with my mom that went something like this:

Mom: "Did you read that post (Facebook) that Marie put up?"  (Facebook, the new WebMD)

Me:  "What?  The one about 'Signs of Gluten Intolerance."  Yeah."

Mom:  "Yeah, you've got about 7 of those."

Me:  "Nah, I counted 4."  

Mom:  (Shaking her head) "Read them, again."

Me: "Okay, 1,2....3,4....okay, 5...yeah, 6......alright 7.  Damnit."  

Mom:  "I never wanted to say anything because it might piss you off, but you have no stamina.  Especially for someone about to turn 40."

Me: "Well, I do love naps."

Here's the link to the article we were talking about.

http://www.mindbodygreen.com/0-7482/10-signs-youre-gluten-intolerant.html

So the next day, I went off gluten, or I thought I did until I discovered that the corn tortilla chips I was eating had wheat in them.  So a couple of days later, I went off gluten.  I made it another week and half.  I won't bore you with the gory details.  But I will tell you that the difference for me being off gluten, well, its like the difference between a foggy day in London and a gorgeous, crisp blue sky with perfect white puffy clouds at Polihale.  My goal is to stay in Polihale.  

Polihale, Kauai

It's amazing to me, here I am, turning the big 4-0 next week and I'm still finding out ways to make life better.  Its always been my personal philosophy that we should always be striving to learn and do better.  Sometimes I get frustrated and I cry out to God, why do I always have to be the one screwing up and having to apologize.  And then I hear the Holy Trinity giggling amongst themselves.  And I say, that's okay, I'll get 'em next time.  Better to know when I've done wrong than to keep making the same dumb mistakes.  Then we all have a good laugh together.  

So forget all the past posts about baking, I'm going to put that off for awhile.  Actually, I'm going to have a potluck this Wednesday, and bake some cakes to get some of the wheat out of the house.  But after that I'm going to put away my baking hat for awhile.  Hopefully, I'll be sharing some of the things I've learned.  I've already got some tips.  If you're trying to lose weight, you still have to watch your calories.  Just because it says gluten free, that doesn't mean you should eat the whole bag.  

Oh, and if you find an alternative gluten free adult beverage (I like to call it that, because its more fun to say when you're drunk), you shouldn't drink all those either.  They have more calories.  Basically, I'm not buying into the whole gluten free biz.  The best diet is still whole foods-lean proteins, fruits and veggies.  

One last thing.....

  

KORE II

On tonight's episode of "Shout Out Sunday", I would like to give a big SHOUT OUT to the people of KORE.  It's coming up on their fourth anniversary and Javy has been participating with them for almost 3 of those years.  It's still an amazing experience every time.  It has grown so much and that only shows me that it was totally meant to be.  There are people from every walk of life who participate and volunteer.  From teachers, security officers (ahem), international traders, firemen, therapists, doctors and maybe even four out of five dentists would agree, it doesn't matter because what people do to make money, it just doesn't really matter there.  Its all about the ride.

And its not only kids like Javy.  This past Saturday, while me and Javy were waiting for our turn to surf, this older lady was waiting under the tent with us.  She bluntly stated, "I died and they brought me back.  Now I'm on my way back up."  I was awestruck for a moment, but I managed to say, "That's awesome!  Now you're coming back 100%."  She said, "You know it, sister."  Once she got out on the board, they couldn't get her out of the water.

I've had this theory about kids like Javy who have never walked.  I found out that this lady is a great athlete.  She has this spark that is going to keep driving her until she reaches her goal.  But Javy has never walked, he's never felt the freedom of running madly around a playground.  So how do you inspire the spark that could motivate him to walk.  I believe that KORE does just that.

I remember the first time Javy got on a surfboard.  I was so freaking nervous.  Up until then, Javy's experience in the ocean was the keiki pond at Salt Pond.  Our swimming apparatus was Mr. Zebra, a half ring.  I would stand there and hold the back of Mr. Zebra together while Javy splashed around.  I hadn't even swam in the ocean myself.  I'm not talking playing in the breaks, I'm talking fully immersed in the deep blue sea.  It took me about three months from the time that I had first heard about KORE to get him there.  I could not even fathom putting him on a surfboard in Hanalei Bay.  But the smile on his face that day, I knew there was no turning back.  And now he's a big wave surfer.

Javy's first time surfing!

I would just like to encourage everyone to support organizations like this.  They're all over the country.  In Miami, there's Shake A Leg Miami, where they do adaptive surfing.  In Texas, there's the Horse Boy Foundation.  Special Olympics and the Miracle League, also create an environment for all abilities and they're all over the country.  And by God, go and find your own passions and dreams, too.

You can find more information about KORE at korekauai.com