Lesson 1 - Get Your Head in the Game

 "Ya gotta get your head in the game, Mom!"  That's what Javy says.  Well, he didn't really say that, I mean, if you know Javy, you know that he's nonverbal.  But being Javy's mama, I've become proficient in the Javy-ese and that is my interpretation of what he said.

I watch Javy.  When he is being made to do something that he has no interest in, his head goes down and he starts to giggle.  The other morning, when I dropped him off at school, I decided that it was time for him to push himself to his classroom.  I pushed his wheelchair onto the sidewalk and said, "Ok, Javy, let's head to class.  Straight ahead."  And I took my hands off his wheelchair and began to walk toward the classroom.  I look back at Javy and his wheelchair had not budged an inch.  Coaxing only made him giggle.  I got all excited when he finally put his hands on his wheels, but he only did that so he could dance, rocking back and forth.  We did the hand over hand method the whole way.  When we got to the slight incline, he did began to push himself, but only so he could roll down the hill.  Yeah, it was about a 20 minute walk.  We could've walked it from home, faster.

But crinkle a bag of cookies from across the room and see how fast he can get to you.  When he's swimming, he's unstoppable.  His arms and legs are moving.  And his game face, watch out, when he has his game face.  He's unstoppable.

Last summer,  I decided that I wanted to surf with Javy.   I decided to lose weight.  I came up with this plan where all I had to do was lose 3 pounds a month and by the time I was forty, I would be a normal weight.  I started this on my birthday, in August, when I turned 38.  The first month I cut out beer and I did lose my goal weight for the month.  My starting weight was about 245.  Four months later, I weighed 263 on New Year's Day.  The problem, my head wasn't in it.  When stress and life started slapping me in the face, I had no other coping mechanism but the one's that I had counted on for thirty-eight years-chocolate, grease, salt and sleep.

This is me, last summer about 245ish.

This is me, around January 2012 about 263ish.

Oh, boy, I was depressed.  But I couldn't see any way out of it.  I looked at my circumstances-I work eight hours, I came home and took care of Javy.  When he went to bed, I went to bed because I had to do it all over the next day.  It felt like being thrown in a hole and the only tool I was given was a shovel.

 I did start cooking a little healthier and I bought a mini-stepper so I could do a little exercise while Javy played.  The first time I tried it, I only lasted two minutes.  But something is better than nothing, I always say.  I resigned myself to the fact that these were my circumstances and I would just be a big person for the rest of my life.  At least, I have my good personality and nice face, damnit!

Then the big moment came.  My mom had a doctor's appointment with an orthopedic surgeon to see about having her hips replaced.  She had them X-rayed and they are pretty much bone on bone, both sides.  It's pretty much a miracle that she can even walk, the doctor said.  That's when it hit me like a herring in a Monty Python skit.  If I don't do something now, I'll never surf with Javy.  This hip thing is genetic because mom's dad had it and his mom.  And my prognosis would be much worse than theirs because I've been more inactive and I'm heavier than they ever dreamed of being.  

Five months later, I haven't looked back.  My success has come from fixing my mind, first.  That's what I failed to do all of those years before.  I thought if I lost weight then everything would be perfect and I'd be beautiful and happy.

I haven't had any desire to fall off the wagon or revert back to my old ways.  When I feel stress, I'm prepared.  I have alternative ways of dealing with it now.  Not to make anyone gag, but physical activity is the best way to deal with it for me.  It's my way of telling my body that I have control over it, not the other way around.  If I can handle that then I can handle any problem.   Also, herbal teas are a great way to reduce stress, too, especially kava.

This is me now, at about 217. 

Coming soon.....Lesson #2: Javy says "Mom, you got to get yourself a plan."

Introduction

I am not a remarkable person!  I'm actually kind of boring, or rather simple.  I wouldn't read about me, there's really not much to me.  According to Facebook, I've lived in three place: Texas, Alabama and Hawaii.  (Shhhh, don't tell, but I also lived briefly in Maryland and Virginia.  But I don't want Facebook to know lest I get offers to join groups like "You know you lived in Maryland....Which would certainly include, "if you had to run home from school everyday dodging bullets")  I've been a civil servant for fifteen years, third generation civil servant, at that.  My bachelor's degree is in geography and history, for crying out loud.  Run away!

But I did do something remarkable, once.  I gave birth to a most amazing person (You can read about him in my other blog, Adventures in Javyland) and he's teaching me how to surf.

The idea came to me one day, last summer, while I was watching Javy surf that I too, wanted to surf and be free like Javy.  The problem: I'm a strikingly obese person, with a bum hip, a pinched nerve and a healthy fear of the ocean.

It's been almost a year since I conjured up this dream.  I've had some success and some failure.  So despite my boring, painfully plain life, I hope that someone will get something out of how my son has whipped me into shape.  But you've been warned.......

Summer fun and Seizures

As summertime descends upon us, the roller coaster of life has started up a steep incline.

Javy started having seizures, again.  He almost made four years since his last seizure.  In fact, in July of 2010, he had an EEG and was found to have no seizure activity so the doctor took him off seizure meds, entirely.

Seizures suck, in case, you didn't know.  Javy had his first seizure in August 2005, or the first seizure I had ever witnessed.  It was the day after Hurricane Katrina hit New Orleans.  We were in Northern Alabama at the time and we had storms all night, from the remnants of Katrina.  I had woken up early, concerned about the possibility of severe weather.   Around 5:30am, I was passing by Javy's room on my way to the bathroom when I heard Javy make a grunting noise.  I went in to check on him.  His eyes were half open and his tongue was sticking out with foam coming out of his mouth.  His arms and his legs were moving up and down.  I had no idea what was going on, I thought he was dying.  I lifted him off the bed and carried him into the living room (probably not the best thing to do, but I had no clue he was having a seizure), crying the whole way.  My mom had no idea, either.  I called 911.  We waited while Javy's whole body twitched to it's own unique rhythm.  I'm pretty sure that was the longest five minutes of my life.

The ambulance came and Javy's body kept twitching.  I heard the EMT say something about a seizure.  Seems like I rode in the front of the ambulance, but I don't remember.  I remember it was raining and windy and we had to go around some fallen limbs in the road.  But what is burned in my memory is what happened when we got to Huntsville Hospital's ER.  I came around to the back of the ambulance, Javy's body had stopped twitching and he was crying.  The EMT handed him to me, but he looked at me like I was a stranger and just screamed.  Nothing I could do could console him.  Later that morning, he fell into a deep sleep and woke up a few hours later, like nothing had ever happened.

What we learned later after spending some time in the ER is that Javy had a grand mal seizure or tonic clonic seizure, as they are known now.  The reason he didn't know who I was after the seizure was because he was going through a postictal state which is marked by confusion and memory loss.  It's kind of like the brain's way of healing itself from the trauma of the seizure.  Sometimes I wish I could go through a postictal state.

Eventually, we became old pros of seizures.  They usually occurred while he was sleeping, in the early morning hours.  They were controlled pretty well by meds.  When he started outgrowing his dosage, he would start having them, again.  Then a couple of years went by and he never had any and the good neurologist decided it was futile to take medication, anymore.

Not taking medication was a huge relief.  First of all, it freed up a few extra dollars and it freed up our mind.  Javy doesn't take medicine easy, so we always had to plan, keeping something on hand that Javy would swallow his pills with.  Jelly works best.  So if we wanted to go out or travel, we had to carry the jar of jelly with us.  Secondly, we found that after the medication had left his system, Javy became a new child.  He was much  more alert, making eye contact more.  He began pushing his wheelchair around on his own.  There were less episodes of him just slumping over in his chair, giggling uncontrollably.  

I'm glad that we believe in enjoying the moment, because they're back!  It was nice while it lasted.  Why are they back?  Well, that's a good question.  Javy's pediatrician says that sometime children who seem to outgrow seizures starting having them again when they become adolescents.  Yes, we can all thank hormones!

Javy is back on Keppra and today was his first day on his full dosage.  He had three in less than a month.  One was a tonic clonic, just like the old days.  The other two were kind of new.   It was like an absence seizure, but his tongue twitched.  My goal is to keep his life as normal as possible and try not to have the attitude of, "Oh well, he's on seizure meds so if he's a little tired that's understandable."  I don't know if it will work, but we gotta stay positive.  He's made great strides and I don't want him to lose any of it.  Only time will tell....

A Remarkable 10 years!

I realize that some of you, who follow this blog, may not have known Javy since he was born.  So I wanted to introduce some of Javy's baby pictures.  Now I could just post pics, but that's not my style, noooooo!  Of course, I had to make a movie, because I love my iMovie software.  My goal is to show his growth, his progression and, also, his regression so you can become even more familiar with Javy. One more thing, the music is Javy's choice......

We need a hero!

I got a jazillion things running through my mind, right now!  In fact, I don't even know what to title this blog.  So I'm just going to go with it.....

I think society has pinned this unrealistic expectation that parents of kids with special needs, should be activists.  Two recent incidents that occurred to two different friends, who live very far apart (Alabama and Hawaii) has gotten me thinking about this.  Both of them related to schools.  One day, my friend in Alabama posted on her Facebook page that she had just had an IEP meeting with the school and they gave her two choices:   "let us discipline him (paddle) or do home bound cuz they can't handle him".  She chose to keep him at home.  Before I commented to give her my support, I read through all of the previous comments.  They were full of inflammatory phrases, "that's wrong, you should........, etc"  Kind of like she had just given up, because she chose to just teach at home.  I for one think this is very brave and totally understand where she is coming from.  Reading this brought it all back to me....  The roller coaster of life with a special child.


When Javy was in Kindergarten, I chose to take him out of school, too.  Day after day, he came home so sad.  When he got off the bus, he would have his head down.  This was a total personality change for him.  I began visiting the school at odd hours.  My observation was that he and the two other students in wheelchairs would be on one side of the classroom, while the rest of the class was sitting in desks, facing each other in a circle.  I tried to talk to the teacher about this.  But the classroom was small and really not suitable for a special ed class.  There were a lot of kids in the class.  She had 3 aides.  The fight had to go higher than her, because she was just doing what she could with what she had.  I withdrew him out of school (Kindergarten isn't a requirement in Alabama, anyways).  Yes, I feel bad for the other little girls in wheelchairs, who had to stay there, but I just wanted my little boy to be happy.  I did write a letter to the principal, but that is as much activism as I could muster.  


You see, and this is my point, between the working 40+  hours a week, providing just the love and care at home for Javy, the doctor's appts and the OT, PT, and Speech Therapy, once a week that I was taking him to at that time; forcing school administrators to do what they're supposed to do anyways, seemed out of my league.  I was able to give him what he needed at home, so why not?  I think that most parents, unless they're bionic, are gonna choose what is overall best for their children.  We shouldn't have to be activists for special education.  The schools should just obey the laws that have been set in place.   What we need in order for that to happen, is a person, without kids with special needs who can fight our cause objectively.  I'm not sure who this hero is, but maybe they're out there somewhere.  In fact, that should be the title of this blog.    


I have been at this for 10 years and this is what I've learned so far:  Teachers are not miracle workers, and neither are doctors.  Ultimately, we are responsible for our own children's well-being and that is where we should be expected to focus.   

Just a phase????

Javy has been screaming....  A lot, lately.  It seems to be a temper tantrum.  He's like a completely different kid when he does it.  It usually corresponds with a time, like suppertime or snack time or Yo Gabba Gabba goes off.  He'll start these high pitched screeches and he'll flap his arms.  When the Shriner's nurse practitioner was trying to examine him, he was so mad at her.  He was looking at her, screaming and stiffening up, making her job, completely impossible.  This was so bizarre to me, I told her that it was like a completely new personality.  He's usually flirting and engaging, or he just ignores the person.  He never screams at people, well, just me.  In the back of my mind, I'm a little worried.  The nurse didn't seem concerned when I shared my concerns, just said he was a typical preteen.  Maybe, but I still wonder does he hurt somewhere, or is it another symptom of his undiagnosed disorder.  So what do I do with this information.  Do I spend a $15 co-pay and make an appointment with is regular doctor?  Dr. Raelson, Javy is screaming, a lot.  Ugh!

*Click Click* There's no place like home

So we've been in our new house now since November.  Things are going pretty smooth, as smooth as they can.  I don't know why but it really does make a difference when it's your own.

The house was pretty much move-in ready, but I got big plans to customize it for Javy.  I've already started on his room.  I painted it and put up some shelves that the right height for his wheelchair.  Now I just gotta put some rubber flooring down, maybe in April when I we get three paychecks.

Saturday morning buttermilk pancakes

Overall, the house has been everything I've expected with some nice surprises.  First of all, there's the avocado, mango, banana and as of yet, unnamed citrus trees.  And then I found four mature tomato plants hidden amongst the weeds.  Also, they had actually put in some high end appliances.  I didn't really notice these things until after we had moved.  The stove is awesome.  I have always loved to cook so it feels great being in my new kitchen. 







And then there were the unexpected bad things.  The bathtub is eventually gonna have to come out, I think.  It's way too tight for Javy's shower chair and there's something wrong with the nozzle.  We had some unexpected visitors, like the centipede that was crawling on my arm one night when I was sleeping in Javy's room.  (Thank God, it was me and not Javy).  Miraculously, I was able to fling it off of me without getting bit.  And the scorpion crawling up the living room wall, was kind of freaky.  His brother was found, later, crawling across the floor.  We gave them to our friend Ruby, so she could make art out of them so its not a totally bad.  Now that I am actively looking for more for her, I can't find any.

Now that the house is somewhat in order, I am able to work on our garden.  I just planted some beans in the back forty.  And I've got big plans to make a boardwalk around the outside of the house for Javy.   The terrain is a little uneven.  Don't make any plans in March, that's when the housewarming will be, I hope.    

Wheel tracks and footprints

Gardening in red dirt