Righteous

"Havi has a severe case of autism and can't walk or talk but as you can see from the photo he can surf! When we catch a wave he lets out this sound that I call the primal scream which warms your heart."  Kevin Horgan

Heavy!

Today was one of those days when I felt like crying, like curling up in the fetal position and just bawling.  A wee bit dramatic, but I'm only being honest.  That is how I felt.  The day has finally arrived.  I've been trying to push it back.  I knew it was inevitable, but I wished it out of existence.  Javy finally had a growth spurt that pushed over the edge where I can't just pick him up like a sack of potatoes and carry him.  Heck, I couldn't even put him the shower tonight.

I knew he was having his growth spurt over the last couple of weeks.  He showed no interest in food and he was really restless.  That's been his pattern since he was small (haha, literally).  Then he'll get his appetite back and sleep like a baby.

The last doctor's appointment that he was weighed at, he was about 65 pounds and that was in November.  Since his last growth spurt, I think he's gained about 10 pounds.

But with the growth, also comes strength.  Javy is really strong and most of the time, I can get him to stand up and support his own weight which makes transitions easier.  But today, Javy had a floppy day.  I'm not sure why he does this every now and then.  Most times he's eager to stand up.  He may not do what he needs to do, but he'll dance and push furniture around.  Not today, he was having a hard time of it.

After eating his fish sticks, I wanted to give him a shower.  So I started stoking Javy up about playing in the water.  I managed to get him in his wheelchair to transport him to the bathroom. I pushed him up to the tub and then I tried to get him to support his weight and stand nice and tall so I could transition him into his shower chair.  I got him on his feet and he just plopped over my leg and wouldn't raise his head. Have you ever tried to carry a 75 pound of rice and give it a shower.  Pretty much impossible, it just bends in the middle and throws out your back.  This is the point where I wanted to crawl in the shower and bawl my eyes out.  I frustratingly tried to reason with Javy, explaining how he needs to help mommy because he's a strong boy until it  turned into, "Mommy can't do this anymore, pleeeeeease."  Alright, I knew it was enough talk with Javy just laughing at me so I just grunted and heaved and got him in his chair the best I could.  Got him all squeaky clean.  I tried, again, when I was getting him out.  Javy just got sad cause I wasn't having a good time.

I can no longer say as long as I can carry Javy, I will, because there will be a time when I cannot.  When I check-in with Hawaiian Airlines next week, I will have to get the aisle chair.  I can't make a mad dash off the plane, toting Javy like a sack of potatoes.

Fortunately, this isn't how the evening ended.  Javy successfully maneuvered himself onto the couch from his wheelchair and then back into it.  And I made him crawl onto his bed.  If he can crawl off, he can certainly crawl onto it.  Everybody has bad days and get under the weather and don't feel like doing much.  It's just that when Javy has those days, it's not the same.  He has to work harder for everything he does.  It's my job to teach him that he can't let up.  

How my son taught me to surf!

Awesome isn't a big enough word to describe the day we had, today.  We met up with one of Javy's surfing buddies in Hanalei, this morning.  It was a beautiful day and there were sets of those soft, fluffy waves.  I noticed that the tide was moving in on the spot were we had parked Javy's wheelchair so I ran out of the water to go move it.  When I came back, Ryan told me, "Kevin is going to let Javy go on his own."  Oh my!  Okay, I started taking big breaths, telling myself it's okay, I totally trust Kevin.  But more than that I trust God, so I started praying to myself, more or less just to calm myself.

Here comes the set.  Kevin gave Javy a big push and let him go.  We had a chain of about four adults, hopefully the wave would lead Javy to one of us or we'd move fast enough to get in his path.  Javy was oblivious to all of this, as he lay prone, supporting himself with his elbows and his head high.  He was doing his snake pose.  We watched in awe as he moved his body with the wave and he came barreling towards us, laughing.  I gave him a kiss when he came to a stop.  Relieved and happy, I turned him around and pushed him back out.

Javy caught several more sets, just like this.  Javy stayed on the board, let the wave take him where it wanted to go.  Finally, one set took him a little to far to the left and he couldn't hang on or maybe he didn't want to.  It's debatable.  He went flying into the water.  My stomach dropped and my knees became weak and wobbly.  I knew that I couldn't get there fast enough.  But Javy came up, easily with his life jacket on, and he kept his head above the water.  Kevin flew over there and got him right back up on the board.  He took him straight back out and caught the next set.  Javy was in heaven.

I want to be free like Javy.

STRESS: It either makes you or breaks you

Maybe I need to go a little bit into my background......  Please bear with me a moment, there is a point.

 I grew up thinking that I was gonna own the world.  I believed I could have it all: a career and a perfect family.  For the longest time, up to my sophomore year of high school, I was going to be a veterinarian.  But then I realized that sick animals made me too sad.  Specific career  plans, kind of fell by the way side, but I still got my Bachelor's Degree.  But it wasn't until I started working at the Wal-Mart in Guntersville, Alabama that I figured out what I wanted to be... a civil servant, lol.  That was when I met a group of policemen, who seemed like real heroes to me.  They were part of a program that President Clinton, I believe started, where the officers would just simply hang out in the higher crime areas.  You know, get to know the residents and just be a presence in their community, not just harass them when times got rough.   They encouraged me, but they were like, Doris, you have a college degree become an FBI Agent.  So that became my new career goal.  So a year out of college, I started working for the FBI as a support personnel.  Eventually, I took all the tests and failed my first interview to become an FBI Agent.  But that was okay, I had one more chance.  I was running and working with a personal trainer.  I can run fast for a big girl.  Everyone was encouraging me.

Then I got pregnant with Javy.  That still didn't deter me, remember, I believe that I can have it all.

Then on 9-11-01, that's when reality hit me.  I was five months pregnant with Javy and I was at a training at Quantico, VA.  I was so scared that day.  Outside there was beautiful, crisp blues skies.  and only 30 miles away, there was destruction.  It was surreal.  I just kept holding my belly.  Later, that night, I saw the airplane sticking out of the pentagon with smoke still coming out of it, as me and my co-workers just stared in awe.  I've never seen the National Mall that empty . Volunteers were needed to go to NYC as Employee Assistance Counselors.  I turned them down.  All I could think about was protecting my baby and getting home to my family.  That's when I knew that I could never be an FBI Agent.  I could never put in the dedication that was required to do the best I could.  My son was more important.

But I still believe that I have it all, my priorities just changed.  I'm still a public servant, as I've been working for the government for 14 years now.  I have a wonderful family that I love to take care of- Javy, my mom and occasionally my sister when she is here.  It's unconventional, but it works for me.  We live in the only place that I've ever felt at home and the only place I would have Javy grow up.

Now it's time for the next challenge in my life.  Buy my own home, one that will grow with Javy.  So I've been researching some websites to see if there is anything out there to help families by homes and adapt them for people with disabilities.  I did come up with some stuff today. http://www.hihomeownership.org: http://www.nw.org/network/neighborworksProgs/ownership/default.asp:Housing Assistance: Housing: Disability.gov If anyone else knows about something, please let me know.  

Our summer, so far

Yay, I can finally sit in a chair in front of the computer and not be in pain.  Thank you, Dr. Kaipo Pavao for helping with my pinched nerve without surgery.  I'm very relieved that I've recovered from this.  My worst nightmare was realized when I found that I was unable to care for Javy.  When it first happened, I had chronic pain for a couple of weeks before I had had any relief.  I couldn't pick Javy up.  I couldn't sleep so my patience was very, very low.  It was like a little glimpse into something I don't want to even think about-being unable to take care of my own son, because of my own health issues.  I know, Javy is going to grow bigger and I'll eventually be unable to pick him up without assistance, but having my own body limit me in what I can and can't do, is unnerving.  So in a way, it's a blessing, because I'm going to take measures to take better care of myself.  Also, I want to set up a trust fund to ensure Javy is taken care of in the future.

Javy is in summer school, it's only about a month, but he seems to be enjoying it.  I'm going to meet the teacher today.  It's the first time I've had the chance to do so, because I've been fortunate enough to have Saturday/Sunday off for the last month.  Aaron found a nice light weight wheelchair that Javy fits perfectly in.  It can go off road, too.  

Surfer Boy

Parents are always too hard on themselves

We had a great Easter weekend.  I was fortunate to be off for the entire weekend and actually got to spend four straight days with Javy.  But my body feels like it got run over by a freight train.  Friday, we went to Salt Pond and I found myself picking Javy up a lot.  Saturday, we went shopping with our friend, Aaron.  So in and out of the car, I was picking Javy up over and over.  Easter Sunday, we were invited up to Koke'e to spend Easter with the Emayo family.  It's such an electric atmosphere (think Big Fat Greek Wedding) and Javy was having such a great time.   But it meant more and more picking up Javy, maneuvering him around.  

Then on Monday, we had to go into town for a psych evaluation for Javy.  It was for the Department of Health, part of the process for getting services for Javy.  The original intake interview was back in October and the psychiatrist came all the way from Oahu just for Javy.  Honestly, I didn't know what to expect and I almost didn't come with him because I wasn't sure if I would be able to get off work.  We were in there for about an hour and what the psych evaluation consists of is an IQ test, which took less than 5 minutes and me answering a bunch of questions about Javy's capabilities.  The majority of the time was taken up by her going over Javy's history, which was right in front of her in a well written report that the original intake officer had already put together.  She even commented about how well written the report was.  This process is excruciating for me now, Javy is almost 9 years old.  Having to relive the past-all the confusion, the denial, and the lack of interest by other health professionals.

There is also all the questioning about family.  The way she phrased it was so odd.  Kind of in passing, she just said, in an assuming way, "The parents are intact."  I was confused because I said, "Yes." and nodded my head emphatically.  My initial thought when she said this was that we were still alive, like are bodies have not been blown into pieces-the parents are still intact.  But then she clarified, okay the parents are still married.  I'm like whooooaaa.  Nope, never been married.  Then she still made assumptions, okay the parents aren't married, but still together.  I had to put on the brakes, again.  Nope, never married, not together.  Oh, well, then how long has it been.  I'm like, why do I have to answer these questions, I've already been through this, it's right in front of you.  This lady gave me the heeby-jeebies!  

But she did that kind of thing throughout the interview.  "So Javy's been this way since birth, what did they call it."  I had to spend most of my time correcting her and back-tracking.  My next favorite moment was when she kept trying to diagnose Javy.  At one point, she said, "What about Rett's Syndrome?"  I'm like already been tested, it was negative.  She said well, it's not detected with genetic testing.  (One of Javy's first genetic tests was for Rett's Syndrome, I know this for a fact.)  But I chose not to argue with her and just said, okay, that's interesting.  Later, she randomly just threw out the statement, "It's funny that he hasn't been diagnosed."  In my head, I'm thinking, "Maybe that's my problem, it's a joke and I've been taking it so seriously."  But, again, I kept my cool.  I still kept my cool, when she asked me if Javy had any weak areas (on his body).  I said, "No, Javy is super strong."  She replied, "Oh, then why can't he walk?"  as if my knowledge was in question about my son's body. 

When my interrogation was over, we commenced the purpose of our visit.  She handed me a questionnaire, a DDST, I think it was.  It was basic questions concerning things that Javy could do.  And then she focused on Javy trying to get him to point at pictures on a flip chart.  This was his IQ test.  I heard her ask, "What does an elephant eat?"  I looked up and there was a grouping of pictures, one of which was a peanut.  I'm thinking, "OMG!"  I forgot to tell Javy about the peanuts.  The IQ test took literally less than 5 minutes, if that.  She informed that she didn't get much response, does Javy point at pictures at home.  Ugh, here we go again.....  No, he just listens.  (I don't read him picture books anymore).  I read him Bible stories and Dr. Seuss books.  

Even though, I truly believe the lady was out of line and unprofessional, it still makes me re-evaluate myself.  How much of it is my fault?  I never give Javy a chance to do things for himself.  And I never make him point at pictures.  I know, deep down that this lady only spent a short amount of time with my love, and could never truly know Javy and who he really is, but these situations just pull us out of our own little world and into the world's reality.  And I don't like it in there.  Here we go again....