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

                                                                                               

If I were a rich man.......

This past weekend, me and Javy went to Oahu to attend Camp Cool, which was given by the Assistive Technology Resource Center.  However, this blog is not about that.  That will be for another blog after our final camp day.

Instead, I want to share some hope that there are some very good people in this world.  For a mom, like me, that means everything.  So first, a little background......

Me and money have never gotten along.  It never sticks with me nor has my back.  Maybe, it's because when I have a little extra, I tend to live like an aristocrat, even if its like 5 extra bucks.  I do stupid things, like the time whenever we went to New York and I paid $100 extra dollars for crappy seats at Headwig and the Angry Inch.  Or the time I wanted to treat my brother and sister to a high class meal at the Jazz Factory.  I told them order what you like, Steak, martinis, the works.  Then when I gave my credit card to the waitress, I was shocked to hear her reply, "We don't take Chevron cards."  (That's a really good way to get out of paying for a really expensive meal, btw, wink wink)

With that said, why should my excursions to Oahu be any different.  The first time I took Javy to the doctor on Oahu, I had no clue, how the heck I was going to get Javy from the airport to The Queen's Medical Center.  I had some erroneous notion that there would be a shuttle (free, of course). I was doing good to buy the airplane tickets, so I definitely couldn't afford anything else but free.  We ended up taking a cab which cost $30 bucks and I had to charge it on a credit card.  ($30 bucks, again, to get back to the airport.)  Even the taxi driver was telling me, "This is too expensive for you, next time take the bus."  Then there was the time, that I had no clue that my bank account was overdrawn until I was inside the airport, at Starbucks, of course and my debit card was declined.  Talk about panic.  Me and Javy had to spend all day in Oahu and I hadn't even fed him breakfast.  Luckily, I saw a friend and borrowed $20 to get us through the day.  Then panicked, again, when we got home and I realized that we had no money to pay for parking.  Thankfully, another friend gave me $20.  If it was only myself, it wouldn't be no big thing, but with a Javy to take care of, too, Sheesh!

So I want to share with you, our latest excursion to Oahu.  Our trip was totally paid for: the hotel, rental car and airplane tickets, you might be asking, how in the world could I screw this one up.   Well, I just didn't think about it, that's how.  The week went by and I started thinking, we've got a trip to Oahu, I better set some money aside for food and stuff.  I had $127 in my bank accounts and $72 in cash from cleaning out all the piggy banks, I thought that was enough.

Me and Javy's wheels

So here's how it went down:  I gave $10 to the porter who helped us from the airplane seat to the rental car.  He even waited for the shuttle with me and put Javy's wheelchair on the shuttle, really nice guy.  I gave the shuttle driver $2, just because that's what you're supposed to do when people provide services for you.  The rental car company required that I give them a credit card so that they could put $100 on hold, just in case, I decided to enter the Ford Taurus in a drag race.  Even though it's all paid for, but it was like a deposit that just gets put back into your account after you return the car.  This is just in the first hour of arrival.  At this point, I was down to $60 cash and $27 in my bank account.

So me and Javy cruise on over in our new set of wheels, with leather seats, to the Ala Moana Hotel.  We're stoked, life is good.  Checking in, the guy asks for a credit card to put a $50 deposit on.  I handed him my debit card, without a care in the world.  Declined.  I guess the rental car thing was immediate.  First, I'm in panic mode, that's all I have.  Then I remember the $60 and I start to reach for it.  All of a sudden my mama bear instincts come back to me and I explain to the guy that we'll just have to sleep in the car because that was all the money that I had and it was for feeding my son and I wasn't going to give that up.  The guy still very calmly gets the manager.  I explain my situation and then I start crying and I'm all shamed so I never lifted my head up.   He, graciously, agrees to waive the deposit.  I'm so grateful, but I never lift my head up.  It's when we were walking towards our room that I notice that everyone around us seems to be cheering us on.  One gentlemen approached us and asked if everything was resolved.  I replied that we were good.  I believe that he was ready to step in to pay the deposit if they hadn't waived it.  After that, I know I should've been stressed but really I was feeling very blessed.

Me and Javy sharing a booth at the LikeLike Drive Inn

Second day, Friday, I call mom and ask her to deposit about $100 to compensate for the rest of the trip or until I get paid on Saturday. I'm still kind of walking on cloud 9 because I'm really touched that everyone had our back.  Me and Javy venture out to get some breakfast.  We end up at the LikeLike Drive Inn with pancakes, sausage, eggs, the works, basically.  After that, we go get a bottle of water.  As we're entering the store, a guy outside the, in a wheelchair, asks if I can spare some change.  Before I can use any reasoning skills, I pull out one of my precious $20's and I say, I've been blessed so now I can bless you, cause Lord knows that's the only way we can get by, so bless you my friend.

Our Mauka view

The day goes by, we pay $20 to get the car out of the parking garage, we cruise around.  Lunchtime-I wanted to find something that Javy would eat so I choose Sbarro's lasagna at the food court.  It's kind of cheap, too.  Thinking that mom had deposited some money into our account, I hand the cashier my debit card.  Declined.  I still had like $14 cash so I start ask if something can be put back.  Before I can, I see that someone has put more cash on our tray.  It's the lady behind us.  I'm just like, God Bless you! Still, it's hard to get stressed in times like this, especially when you've just had a complete stranger bless you.

Hanging at the park-Ala Moana

I hope that no one thinks I'm advocating going to Oahu without a cent in the world and letting others take care of you.  This weekend, we will go back, and it will be much better, I actually have money, I think.  Better check, lol.  But I just want to share good things, especially when it can give hope.