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.

Even Better Days

Merry Christmas everyone and we wish everyone a blessed New Year.  Nothing speaks louder than pictures so here's a video compilation of Javy's progress over the last year.  Thanks to Ruby, Aaron and KORE for the pics.  It took me a while to pick the right song.  I wanted this to be hopeful yet reflect Javy's personality.  This is Eddie Vedder's Better Days.  I think the power in his voice and the different instrumentation, does just that.  So enjoy and God bless.

Festivities and madness

I was just thinking about holidays and parties.  When I was a kid, I couldn't wait to grow up and host parties.  My aunt was the perfect hostess.  It seemed like she knew how to do everything-make the perfect cocktails, exotic dishes, her decorations were charming and elegant.  She made Martha Stewart look like an eastern bloc haus frau.  My mom's specialty was Christmas.  I remember she hosted my youth group's Christmas party one year.  It was way cool, still tops the charts in my books.

So here I am, knocking ever so gently on 40's door, with my own 9 year old about to be 10 year old and Christmas less than a month away.  Last year, I did the big birthday party at my house with all the people.  I was pooped.  It didn't seem like it was really up to my aunt's standards, I don't know, I was too stressed to really enjoy it for myself.  Javy was happy, that's all that counts.  This year, I'm thinking simple, dinner at Wrangler's while Javy gets lavished with attention.  

So that got me to thinking, duh, my aunt was probably freaking out on the inside, too.  My mom obviously has been scarred by her past successes, because she's perfectly content to be a hermit and never socialize, again.  So I should never give up on my pursuit of making others have the time of their lives.  I'm still going simple for Javy's birthday, though.

But Christmas....  I just can't control that urge to go all out, no matter how much it hurts.  And just like Clark Griswald Sr, I'm gonna need a lot of help from Jack Daniels.  

Sometimes, all it takes is some luck and a smile

First the excuses for neglecting my blog....  I could say that I've been really really busy!  We're in the process of buying a house,  I work a crazy shift at work and don't get off until 1130, home at 1230 and still have to get up at 530 to get Javy ready for school...  But whatever, I'm no busier than anyone else, really!   I think the real reason is that my iMac keyboard broke and I have to type this with Javy's Crayola keyboard.  The keys are not like a regular keyboard and it likes to add frivolous characters.  For a typing purist, this is painful, but on with the blogging.

I decided to buy a house this year, Javy needs stability.  Since we've moved to Kauai, we've moved 3 times.  Since he's only going to get bigger and heavier, I need to start thinking about having a place that is accessible for him.  So the search began around July.   I started researching assistance with housing for people with disabilities.  I came across the USDA's rural loan program and from there I got the ball rolling.  The lady from the USDA sent me a chart of banks who had successfully completed their loan process.  I picked 3 of the lenders and contacted them to get pre-approval letters for no apparent reason other than they were successful according to the USDA's chart.  This is how I met Doug Henderson at Central Pacific.  You see, I am not a bank's dream client.  My income is just above poverty level, I have no money to put down and my credit score is amusing, to say the least.  The USDA's loan program gives me a little boost and my credit score was above their minimum.  Its kind of like having big brother back you up so that banks will feel more comfortable giving you money.  But still, I think that most banks would have sent me packing because I would have required extra work.  Doug has gotten to know us and he took on the challenge.  He didn't just see us as numbers.

Meanwhile, I had found a home, I thought might be perfect for us in Kekaha.  I contacted Sleeping Giant Realty via e-mail because I don't like to talk on the phone unless I have to.  Not sure why I contacted them, except that they had a really great website.  Martie Law called me back and I felt really comfortable talking to her.  She is awesome.  She set up some appointments for usto see some homes in Kekaha.  They were all duds.  Javy even started crying in the first house, I took this as a cue to get the heck out of there.  We moved the search a little further east- I chose three houses, two of them I just knew could be the ones-in Waimea and Kalaheo.  The were old farmhouses with lots of land around them, I was sure that Javy should be a country boy.  The third was a random one in Hanapepe Heights.  I never really liked it up there because the houses seemed so close together, but why not, it was in our price range and then I could only prove my dislike for Hanapepe Heights.

Long story short, old farmhouses need a lot of work.  The house in Hanapepe Heights is awesome.  It`s level so there's no need for a ramp.   It's a nice open living area so Javy can wheel himself around and the bathroom is a good size.  I am not a rocket scientist but I think that this was a good deal.  So with Doug's careful orchestration, we've made it through the loan approval process and we're just waiting on the USDA to give us their kiss of approval.  House warming party is pending.