My Exciting New Idea!

I've been mulling this idea in my head for awhile.  Remember, when I said that I didn't want to be an advocate because I just want to raise my own child and thought that it sucked that we have to force people to do their jobs and give us what the laws says is ours, already.  It was in my post, "We Need a Hero."  Well, it seems that life is pushing me to be more into advocacy, as I've had the opportunity to help some parents new to the world of Special Education and the DOE.

My big idea is to start a website that helps new parents step into the world of being a parent of special needs children.  I think I've also wrote in the past that when it was first discovered that Javy is going to be his own special Javy, I was thinking we'd be okay because there has to be a club that helps guide you through everything that's out there-medical, education, durable equipment.  I soon found out that its a very closed society and  you really have to dig, more like an underground club.  I want to gather all the useful information of everything that I know that's out there and even I want it to be more like a forum where everybody contributes-like a library.  What do you think?  Do you think this will be useful or do you know anybody it would be useful for?

I also need a name of the website.  I was thinking Super Parents of Super Children, but all parents are super and so are their children, so I thought Super Parents of Super Children with a side of challenges.  Hmmm, I don't know.  Feel free to contribute your ideas.

Thank you for everyone's support.

Our visit to Shriner's Hospital in Honolulu, 2/14/14

Not Gonna Be My Worst Enemy Anymore!

The age of self degradation has come to an end!

I realize I haven't posted much about my own weight loss journey.  I was thinking that it was because there wasn't much going on.  I haven't lost much weight, so there's nothing new to report.

But then I realized that is completely false, because there's so much more going on inside me that's bigger than weight loss.  I've been focusing on making sure that I workout regularly and what I actually put in my body.  When I first started this excursion, I just kind of started.  I kept track of how much calories went into my body, because it's basic science.  If you consume less energy that what you expend, then you're gonna lose weight.  You can't argue with science, I've tried.  I had much success, but as one friend told me, I'm evolving.  It's a slow process but it's a total life style change.  Now I'm not only focusing on my body but what I put into my entire family's body.

I'm really proud of the progress we've made as a whole.  We buy mostly organic vegetables and meats, local if we can.  We buy no processed foods, I make all of Javy's snacks.  Javy even drinks my fresh vegetable juices.  I've stopped using MyfitnessPal, just to see what happens.  I haven't gained any weight so I'm pretty proud of that.  I've actually lost some inches from my hips and I can see some muscles in my midline.

But what I'm about to say is going to blow your mind, and may even seem confusing.  But this is the biggest progress of all-I actually stopped at Burger King last night on our way home from surfing and ate a Whopper with cheese.  (I accidentally at some ribs with Shoyu earlier so I was glutened, already.  Might as well, enjoy the rest of the day.)  Here's the point, I didn't beat myself up over it.  Why?  Because that's not the norm, anymore.  Before, I would've been depressed for days and hated myself for being a failure.  Nah, it's a one time thing.  My son was hungry.  Sure the bun is full of plastic and the cows were probably fed GMO corn.  Whatever!  That is evolution, my friends.  It'll be months before we ever go back to a fast food restaurant, if we ever do, again.  I don't know.  I celebrate all the times that we drove right by the fast food restaurants and went home to cook a meal, instead, not opting for convenience.

And you know what else I did?  I shocked everyone on Friday when I wore a sexy dress with high heels for absolutely no reason.  And I enjoyed every compliment.  I especially enjoyed the shocked look on Ryan's face when he said, "You have legs!"  It was good fun.  That was a true exercise for me.  I put the dress on and it fit, showed all my curves, but then I just walked away from the mirror before I could over think it.  I put my shoes on and just walked out the door before I could change my mind.

So that's a little update.  I think it's more mental progress, because that's my big lesson for this year.  I'm going to take care of myself and take all the help I can when it's offered to me.  I think it all goes back to accepting and loving yourself no matter what you look like.  You can't make physical changes until you accept yourself for who you are.  Being skinny isn't going to bring happiness, nor is the love of anyone else.  But when someone does love me, I won't be a frazzled mess.  I'm glad I've finally learned to love myself.  

Don't tempt me, I just might be crazy enough to try it.

My family is a bit unconventional.  And when I say my family, I mostly mean my mom.  I wish I had the photo, but it's probably at my brother's house now.  It's a photo of me on the first day of school, I think first grade, with my hair in pigtails and my fresh new school clothes.  I'm holding a lunchbox.  I have this look of disdain on my face, my signature smirk.  I know exactly why, I have that look on my face.  I hated my lunchbox.  It had no cartoon characters on it, it didn't have a cool thermos that I could use the lid to sip my soup with and it wasn't metal.  It was a tupperware lunch box with the little plastic square that kept the sandwich fresh, and other assorted plastic things that kept everything so fresh.  The practicality of it did not move me, I hated it.  Now I would trade anything to have that lunchbox back.  This is how my mom was, she didn't care about fads or fashions.  She just did what she had to do.  Life knocked her down pretty hard when she was about my age now and she rebuilt herself back up.  She got things done in her own style.

I'm pretty sure that this unconventional atmosphere that I grew up in, pretty much prepared me to be Javy's mom.  Life hasn't always worked out the way I think it should, but I'm always prepared to look at things from every different perspective.  And then try different things until we find something that works.  I mean, long before Javy ever went surfing, me and Aaron would let Javy roll himself down the steep hill in our driveway, just to hear the pure pleasure of Javy's laughter.  Hey, it got him to push himself in his wheelchair.   I look at everything from every angle, no matter what other's might think of us.

But I took a pretty long way around, just to say, "I told you so."  That's for some medical professionals, by the way.  A few years ago, I brought up a diagnosis of autism to one neurologist in Huntsville and one in Oahu.  More specifically, it's called Childhood Degenerative Disease, it's on the spectrum and if you read it, it describes Javy to a "T".  I was told each time, Javy's too social.  The reason I brought it up with the doctors in the first place, was because Javy has pretty severe hand flapping.  The hand flapping, in my opinion can make him dysfunctional with basic skills, like eating and grooming, things that he used to do.  So when I started doing my own research, I found CDD which describes loss of speech, motor skills and so on at about the same age that Javy lost his skills.  But he's too social, he looks you in the eye, is what I heard from the medical professionals.

I recently read in another blog that I follow, "Undiagnosed But Okay", how her daughter was recently diagnosed with autism.  Her daughter is also social, but she has hand flapping and the evaluators said that even though, she is social, she only interacts with people on her own agenda.  That is Javy, he is definitely on his own agenda.  Otherwise, it's impossible to get him to do anything.  If Javy wants to do something, he will do it.  This has given me reason to keep pursuing what I think is correct.  We're scheduled to see a new neurologist that is working at The Shriner's Hospital.  I've learned from my past mistakes and I've already started gathering my evidence.  I'm going to send a portfolio prior to our visit which will include video footage.  The six page questionnaire will not hold what I've got to say.

Now why in the world, you might be thinking, would I want Javy to be diagnosed with something that involves any kind of social dysfunction.  Social skills has always been the one bit of normalcy that we could hold onto.  But I'm just crazy enough to think that it could open up some doors and give us a piece to a bigger puzzle.  I'm just crazy enough to believe that understanding where Javy is coming from can help us to help him.  Now I'm going to search E-Bay.  I've got to have that lunchbox.