Freedom!!!!! Talkin bout Freedom!!!!

You guys rock, I'm just saying, so I want to share this with you.  I belong to this group, The Single Dad Laughing Health Club.  It's a Facebook page, but every week there's new challenges.  I posted this picture as part of one of the weekly challenges, sharing the inspiration behind our goal for becoming healthier.

And this is what I wrote about that picture.

"My inspiration comes absolutely from my son.  About four years ago, I took my son to this event called KORE-Kauai Oceanic Recreation Experience.  I had read about it in the paper, and I had three different people (two of which were complete strangers) tell me about it.  It took me 3 months after, the first time I heard about it, to finally get up the courage to get my son there.  Basically, KORE is group of avid water people-surfers, lifeguards, firemen, etc. who get all people into the water, no matter their ability.  

Well, the rest is history.  The first time Javy was on a surfboard, he had to be held on.  But as you can see from the picture, he loved it.  He had found his passion at 9 years old, imagine that.  So as time went on, a good friend now, loved to surf with Javy.  He said that every time he surfed with Javy, it was like his first time surfing.  Javy gave a primordial scream, when they were out there.  My friend kept taking Javy further and further.  Now he surfs out in "the bowl" where the big wave surfers go.  That's the picture on the bottom. 

I remember one session, before Javy went out into the big waves, our friend decided to just push Javy alone on the surfboard.  I was nervous, but I trusted that everything would be alright.  That first time, as Javy went past each person, completely free, riding his own wave; I had tears in my eyes.  I said to myself, I want to be free like Javy.  Ever since then, I've let Javy teach me how to surf.  And that's why and how, the transformation is taking place.  And its continuing.  If I make a mistake, I dust off and keep on going, because I know that laziness and binge eating are not my lifestyle anymore."

The real story behind these pictures is that Javy always knew he was free.  Even his first time trying something, he didn't care.  He showed no trepidation, he just went for it.  The person, in the upper left hand corner, didn't know that she already was free.  That's the real transformation-finding out that the ability to do what I want to do, is inside me.  I made all the choices that got me to 263 pounds, I own those.  And I own all the choices that got me to 175.  But its so much more than weight loss.  I finally have a balanced life, that I truly love.  And that, my friends, is freedom.  

If you're not happy where you're at in life, just watch Javy grow.  He is truly inspirational.  

Our Morning Ceremony

Ceremony?  Some people would use ritual, but I prefer ceremony.  It makes life more festive!  We have a morning ceremony, as well as a bedtime ceremony.  These ceremonies have evolved over the years to meet Javy's individuals needs, but I think they're important to have because he needs to have the time to process his daily living activities and what his role should be.  So we've evolved from him sitting in his grandma's chair and having her spoon feed him to sitting up in his chair and him feeding himself, or at least putting the spoon in his mouth.

One part of the morning ceremony that I have come to appreciate is what I call, "Time to talk to the grandma"!  This is the last part before he gets on the bus.  Grandma can get him to mimic her and she is basically stimulating his mind before he's off to school.  Here's a quick video of this part of the ceremony.  Remember, it may not be words, but sometimes the ability to joke and interact is just important.  

Positively Positive!

I gotta be honest, I've been a real stinker here, lately.

I've always tried to make this blog positive.  I want it to be about awareness of what it's like raising a kid who needs some extra help.  I want it to be inspirational.  I hope that I've never given the impression that our life is perfect, because that isn't what I was trying to do.  I usually ride through the problems and then post about how everything came out and what lessons were learned.  I don't blog in the moment, because then it would be hyper-emotional.  I was raised that you don't whine about your problems.  It's okay to talk about problems, but you have to come to the table with solutions, too.  So that is why I write the way I do.

But I also like things to be real.  I regard sincerity very highly so I hope I haven't put off any vibes that we lead this life of grandeur.  I get frustrated.  I yell at the dog, especially now that we have three and they all come when you call one.  I get down on myself.  But it's usually easy for me to snap out of it.  And I don't stay mad, too long.  Life goes on whether we're grumpy or not, might as well keep smiling.

Lately, I've been going through kind of a tough spell.  A lot of stuff kind of hit all at once, you know that sort of thing.  Life is still amazing, but I'm kind of exhausted and not really feeling it, just to be real.
Sunday morning was kind of tough, just kind of woke up, didn't really want to get up.  Didn't see the point.  I did because I'm an adult and I have to.  I still gotta get stuff done.  I kind of muddled through the morning.   Javy woke up, I got him up and we did our usual morning snuggle.  Then I noticed something, I instantly felt better, holding Javy in my arms.  Now I'm not trying to be corny here, I know that every parent says that they're kids make them happy.

This made me think.  I think, I now fully believe in the transfer of positive energy.  Think about this, Javy is the poster child of innocence.  No guile has ever come out of mouth.  He's never judged anyone.  He's never uttered the phrase: "I can't believe she's wearing those shoes with that outfit."  I don't believe that he's ever hated anyone.   This doesn't mean that he has open arms for anyone, he is discerning about who he likes to hang out with.  He's never gotten road rage and purposely tried to ruin some random tourists vacation, because they did a u-turn right in front of him.  (Not that I've ever done that.) He's never been vindictive.  If he's feeling bad, he doesn't try to make everyone around him miserable, too.  He doesn't complain.  He doesn't hold grudges or sulk.  Javy is pretty real.  He smiles when he's happy and doesn't when he's not.

Maybe this was obvious to other people, because people have always told me that Javy makes them happy.  I'm like, yeah, yeah, he's a smiley happy kid.  But I think he's just got some really positive vibes and he just gave me a whole new perspective on life.

Cruising with his homie!

Don't lose the steps you've taken!

These are the words that are ringing in my head, right now.

In March, we saw Javy's wonderful new neurologist, Dr. Lee.  He explained to me how Javy has cerebral palsy and an intellectual disability (not autism).  The question now is, why?  Is it genetic, or metabolic, or something else.  You see, I had been under the impression that Javy didn't have cerebral palsy, because doctors had told me that he doesn't have cerebral palsy.  They used it to describe him, but they said that the MRI's of his brain were normal and he had a big regression when he was about 3.  Kids with cerebral palsy, don't regress.  Cerebral palsy was just an umbrella term, they said.

But finally, I can say Javy has cerebral palsy and an intellectual disability.  This is good news to me, it means Javy can move forward.  His language skills are at about a 15 month level and his problem solving is at about 12 months.  He simply thinks like a baby, so we have to take a step back and stop trying to make him push complicated buttons to speak.  He verbalizes, now we're verbalizing with him.  His grandma is a big help with this and she can get him to mimic her sounds.

Last night, when I was reading a book to him, he started babbling.  Before, I would tell Javy you have to be quiet while I read the book, because you can't find out what happens if you can't hear it.  I was trying to make him conform to his age.  Last night, I let him babble while I read and I interacted with him even more.  When I stop reading, he stops babbling.  It's a beautiful accompaniment to "Oh, The Places You Will Go."

This made me think, as I've been feeling mighty depressed about my stagnation in weight loss.  I workout daily, eat right but I've even gained weight.  Two years and four months later, with what started out as baby steps, there's not an ounce of junk food in our home, the whole family eats whole foods.  We're about 75% organic.  Sitting on the couch for longer than 30 minutes is a rarity.  Currently, I'm working on my mental health overall, doing yoga, journal writing and meditation.

Just like Javy, I can't lose the steps of taken.  I spent 38 years of living a mostly unhealthy existence, so I can't let a minor setback keep me down.  We gotta keep taken steps forward.

Javy, just chill, ain't nothing getting this boy down.  

I want a life like bone broth!

There's a pot of bone broth simmering in the Crockpot, as I write this.  I paid four bucks for a package of grass fed, local ox tail.  These simple bones will make a nutrient rich broth, full of collagen, glucosamine and chondroitin.  And it's not for just one meal, it's for many meals.    

  

This made me think: I want our life to be this simple.  

Simple days, tasks are completed with plenty of time to play.

Simple relationships, love is given and received, and life isn't sucked out of you.  

Simple nights, with quiet time and deep sleep. 

Simple goodness, we're always ready to help someone, however we can.   

Simple isn't synonymous with boring, by any means.  Living simply means that when the adventure knocks on your door, you can go with it because you're not beholden to any dramas or pretensions.  

Let's do it, let's live like bone broth!

 

Here's the link for the recipe I used.  Love this guy! 

http://fearlesseating.net/how-to-make-bone-stocks-in-five-simple-steps/

Why this is important! Firefighter’s plight - Thegardenisland.com: Local

Firefighter’s plight - Thegardenisland.com: Local

The link above is an article that was in our local paper.  Please read it.

The above story is about a friend I've come to know since I've lived on Kauai.  I became acquainted with Karl whenever I worked at the airport.  I remember the first time I met him, he was flying out with his son and his wife.  For obvious reasons, I am always drawn to special kids and went over to help them out in the security line.  Then over time, I noticed Karl flying out in his Hawaiian Airlines flight attendant's uniform.  Then a few days later, he was flying out in board shorts and a t-shirt going to work at the fire station.  Over time, I've gotten to know him and his family and I can tell you that for five years, this guy flew out consistently and I could set my clock by his schedule at the airport.  But you would have never known that his schedule was causing him any stress.  He is always smiling, always respectful, and always willing to stop and ask me how Javy was doing.  The only time I ever saw him upset was because his son was going to be away on the mainland for a couple of weeks to spend time with the mom's family.

Some might read Karl's plight and think that's too bad, but that's the breaks.  He tried, just got to keep commuting.  I mean, my brother drove 3 and 1/2 hours one way to Atlanta every weekend, just to spend 1 and half days with his son.

But this is why it's important.  Karl is a caregiver.  He's part of a team, team Ethan!  All parents are caregivers, but being a caregiver of a special needs child involves a lot of meetings, a lot of doctor's appointments, and a lot extra special care.  A special needs parent has got to be on their toes and ready for anything.  Ethan deserves for Karl to be at his best.  The other members of team Ethan deserve for Karl to be at his best.  Karl deserves to be at his best.  The citizens of Kauai deserve to have a firefighter who exhibits this kind of dedication.  We all win when we have this kind of a guy in our community who wants to take care of his child and be a public servant.

So let's get Karl back to Kauai!  

Wouldn't It Be Nice!

"Wouldn't it be great if, when you got the diagnosis of autism for your child, instead of the neurologist saying: "i regret to inform you...' he/she said instead: 'congratulations! your child has a special genius gene! The challenge and adventure is going to be how we access that genius. But it IS and adventure, and here are all these of adult autists, even severe ones, who have gone on to have careers, love lives, who contribute hugely to society. And we are in lock step, should to shoulder with you on that adventure.' Then they point to a bucket of champagne on ice, open it up, pour out the glasses and say: "Now let's drink to that adventure!"
Imagine that
Let's celebrate autism. Horseboyfest.com. Sunday April 13th, Elgin Tx 78621.
LIVE FREE RIDE FREE"

This is a quote, I'm assuming that the quote is from The Horseboy's father.  Again, I implore you if you haven't seen, "The Horseboy", please watch it.  And if you're in the area of Elgin, TX, take advantage of this.  I really want to take Javy there, one day, so check it out for us.  

But anyway, this statement really hit home, because I believe that it helps illustrate a point that I've been trying to make.  So much time was wasted in the beginning of our adventures, by hurt feelings, denial, pride...  I guess, I could go on and on.  I'm sure if we went through it, then some other parents have, too.  I believe that we got to take the path that we take, and regrets are fruitless, but I'd like for someone to learn from my own.  Do whatever you can to get over the original hump and just move on with it.  Listen to each professional and even if hurts, if its what is best, go with it.  We've been at this for twelve years now.  I, either fall madly in love with the health and education professionals or go psycho on them.  

And its all got to do with approach.  I've got a saying of my own, "You can be right all the time, but if no one will listen to you, what good is it."  I really disliked the doctor who initially referred us over to early intervention. It would've been so nice if she would've approached it in the above manner.  I mean, right off the bat she told me something I didn't like.  Maybe if she would've said something like, "Hey, you're gonna be a great mom and get Javy through these challenges."  But she didn't and it doesn't really give me a right to disrespect her or anybody who doesn't tell me what I don't want to hear.  As the mom, I've got to sift through the information, and say thank you very much for your input and either, take or leave it.  Maybe if I would've been more realistic with what was going on at the time, and been more aggressive with getting Javy the therapies and more medical attention, more could've been done for him.  

I can't have the time back, but I've certainly learned from that mistake and moved on.  

Educated Mama

Ladies and gentlemen, I am emotionally drained this evening.  My day took an unexpected turn when I decided to organize all of Javy's medical and school records.  I think I've mentioned it before that we have an appointment with a new neurologists and that I'm going to thoroughly prepare for it.  I took the big stack of paperwork that dates back to 2002, nothing that is new to me.  I'm sure that I analyzed each and every one of the reports, at least five times, looking up big words that I didn't know, and coming up with my own diagnosis.  As I sifted through the geneticists reports, I pulled out my Merck's Manual of Diagnosis and Therapy (Yes, I have one of these, I found it at the used bookstore.  An educated mama is a dangerous thing).  I turned to the section on  pediatrics and noticed a chart on normal development.   It just flooded over me, all over again, all those lost hopes and dreams of a child who would play soccer and baseball.  And how I would save up for his college and he would go off to college in a junky car that he worked at Sonic to buy.

But that's not the really emotional part.  When I got to his evaluations for his early intervention services after he was nine months, then his assessments for preschool.  I was reminded about how he could still say words and used his walker.  But then I found the worst thing of all.  A note that came from a very dark time in our lives.  The note displayed my immaturity at the time, because I refused to work with this horrible teacher. Instead of fighting for Javy, I just didn't deal with it.  Coincidentally, this was also the year that Javy regressed a whole lot.  Prior to this Javy had the most wonderful teacher and he seemed to do very well.  But hints of his regression were there also, so I can't blame the bad teacher for Javy's regression.  But I guess at the time, I kind of did. I saw this letter and I just started tearing up.  I failed Javy at that time by not dealing with this lady.  That's how I handle a lot of stuff, by ignoring it.  Looking back my ignorance was appalling.  I just wanted Javy to be okay, and I didn't want to listen to anybody who told me differently or that he wouldn't catch up.  I hope that I can help people now with what I've learned.  Even with all the emotional drainage, I did learn something today.  I started seeing all of Javy's reports as a collection of evidence.  Before I had only looked at them individually, but put together, they are a time line of events.  I can see patterns now.

So that's my story.  But I want to add some lessons learned and some information that might be helpful to those who are just starting the process.  If I would have just had some basic facts at the time, maybe I could have done better for Javy.  First of all, when you or anyone first notices that your child may have delays or need special services, there's a process that they will have to go through to get the services that they need.  And if you, as the parent notice the delays you may have to fight to get them the services that they need, but just know that its a federal law.  The state that you live in must abide by it. From 0-2 years old, it's called Early Intervention and its a family centered plan.  Easter Seals does the early intervention for the State of Hawaii.  http://www.easterseals.com/hawaii/our-programs/childrens-services/early-intervention.html

It's been years since we've been through the process in Alabama.  Javy was actually referred over after his 9 month checkup when the doctor noticed delays.  I honest to God, didn't know what was going on.  I was in Lala Land or something.  All I could think was that they were wrong.  But they told me to go to this other doctor at a certain time with Javy and that's what I did.  I showed up with Javy, it was at the Children's Hospital of Alabama and I just couldn't wait for this doctor to prove the other doctor wrong.  But she didn't.  The next thing that happened was a lady from The Alabama Department of Rehabilitation Services came over and looked over our home and asked us lots of questions and played with Javy.  I didn't really know what to say, I read in one of the reports that I said that I didn't work with him enough and maybe that was why he was delayed.  I read in another report that I felt like I spoiled him and he wasn't able to do things independently.  Yikes!  After that nice lady came to talk to us, therapists-physical and occupational, started showing up at the house at predetermined times and teaching us things.  Honestly, I didn't know what a physical therapist or occupational therapist was.  I was confused by the term occupational because Javy didn't have a job.  That's how hazy things were to me at the time.  I didn't think it mattered because Javy was going to catch up and we wouldn't need all of this special attention. So my advice to new parents is ask questions, lots of them.  And if its possible, accept with open arms whatever help you can get.  Our children are beautiful and precious, and we are their protectors.

I'm tired and I think I tackle the school aged saga in another blog.


By the way, each state can choose how they render the services and that's where it's going to get tricky.  I only know about Alabama and Hawaii.  I need everyone's help otherwise, so if you'd like to share your own personal stories from the state that you live in, please feel free to e-mail me: javysmama@me.com or message me on Facebook.  Our Facebook page is now Super Parents of Super Kids.  

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.  

And This is Happening.....

Keyboard is still sick after Javy got a hold of it, but this video requires little explanation!

Some Mid-January inspiration!

Two Beautiful people in JANUARY 2012

A beautiful strong healthy person in JANUARY 2014

Just do it!  DECEMBER 2013