Ding Dong, Christmas is over!

For my family Christmas means many different things..... And it doesn't necessarily have anything to do with religion, most of the time. And I do say Happy Holidays, but I've always said Happy Holidays, long before this war of words came into play about Christmas time... To me Holidays are about fun, doing things that you don't always get to do. I mean, Europeans call their vacations holidays. It's just a fun word, there's no implied meaning to it.

Getting back to the religion thing, though. Religion is personal. I'm reading a book right now about the Hawaiians. They wouldn't even speak their one true God's name becauseit was so sacred and they couldn't bear to have anyone disrespect it. That is such a different concept from the Protestant churches I grew up in. There's that whole Great Commission aspect of going out into all the world and preaching the Gospel. But I don't think the Hawaiians were altogether wrong, because sometimes the spoken word is meaningless. We can all say whatever we like, but if our actions and how we live, do not match with what we are saying, no one is goingto listen to us, anyways.

And who says that you need to speak or say anything to be a blessing to people. Javy has a very limited vocabulary and only those who are really close to him, actually no how he communicates. But do you know, I've had complete strangers come up to me and tell me what a blessing he was. I had one lady come up to me crying, because there was something in Javy's eyes that reminded her of her recently departed son. I even had a close friend tell me that Javy inspired him to be happy in every situation. Wow! That is truly a blessing....

So getting back to Christmas. I try to make our Christmases special and magical, just like our mom made them for us. This Christmas, we spent time with our friends. We watched whales and the sun sink into the ocean. We played, a lot. And we ate. I invoked the memories of both of my Grandmas. I made biscuits and gravy, just my Grandma Pentecost. And then I made the Strawberry stuff that my Grandma Williams fixed us every Christmas. My Grandma Williams didn't cook much, in fact, my Dad always complained that she starved them when they were kids. But what she did cook was the best. It was a great Christmas and judging from Javy's laughter and smiles, it was magical for him, too.

Merry Christmas, and push your own kid up the hill!

Last Wednesday night, Javy participated in his school's Christmas program with his third grade class. It's great, really, that Javy, as well as the other Special Education students participate with their general education class. I mean, in Alabama, he never really got to, unless it was something that Miss Laura did. So for this, I am very grateful. But here are some general observations that made me go, "hmmmmm." Javy's Special Education teacher was sick so she couldn't be there. So we dropped Javy off with the third grade class and one of the third grade teachers, who Javy was absolutely smitten with, explained that she was nervous about pushing Javy's wheelchair up the hill. I said, Okay, I will help anyway I can, so I can do it. Relief washed over her. Later, when I had a chance to think about this, I wondered, how hard is it to push a wheelchair up a small hill. And do they think that Javy is really that fragile. Now, I don't blame the teacher, at least she was honest. But it brought to my attention something about how people who are not around special needs kids and their perception of them.... For my family, we try to provide the most normal atmosphere possible for him. We let him roll himself down the hill (with an adult monitoring the traffic situation) in our drive way. I let him explore and climb around all the time. I'm not sure how to remedy this because the only way to know is to spend time with kids like Javy. I don't blame people for being cautious. Oh well...I guess that's all of my rant. But here's Javy's Christmas performance.

Facebook

You can also find us on Facebook at Adventures in Javyland. I'm not sure how to link these two pages together. I think it's easier to post photos on Facebook and I'm about to put up a big photo montage.

Is there a Geneticist in the house?

Javy had his annual appointment today with the geneticist. I have to say that this guy was pretty awesome. He's been seeing a geneticist since he was about 3 years old. His first one was from UAB and they are supposedly highly rated. Since we've lived in Hawaii, he's been seeing geneticists from the Hawaii Community Genetics and this time they came to Kauai. The thing I liked about this guy was that he was very open, he spoke freely. He gave us hope. He's young, though, hopefully he won't become jaded and closed mouthed, like some. I felt like I could ask this guy about anything and I did.

Anyways, they're gonna do some tests for GA1 and Fragile X syndrome. Also, he's the first doctor that ever suggested that we do some tests on his major organs, just to make sure that they function normally and see if there's anymore clues about syndromes to test for. This is one of the hardest parts about Javy being undiagnosed, not knowing what kind of hidden health problems he could have. I mean, he can't tell us when things aren't feeling right in his body. He has to be really hurting to cry.

But he also confirmed the possibility that maybe Javy was having seizures from birth and it just caused brain damage that are causing his developmental delays. (This is something that I've actually asked doctors about before) and that he does have characteristics of a child with pervasive development disorders (this is what autism falls under). This could be why he lacks certain social skills and communication. He recommended a developmental pediatrician who could help us work out a plan to help him get these skills back.

The fact is that this doctor just told his opinion and we talked to him for almost an hour and a half. I'm not sure why some doctors have to act like everything that they are thinking is top secret. I guess they are just afraid of being sued. I don't care about all that, I just want to know what is wrong with my son.

Happy Thanksgiving and God bless Mom!

I was just getting ready for bed because I have to go to work very early in the morning. Before I can go to sleep, I have to give a special shout out to my mom. I am very very grateful to have her in my life. She has been by my side since I first found out I was pregnant with Javy. She stayed by my side when they admitted me into the hospital two weeks before Javy was born and slept in that little chair, beside my bed. She held my hand when I was contracting and my heart rate kept going down. She watched Javy's introduction to the world. She been with me at all the doctor's appointments. Slept by his bed every time he was admitted to the hospital and when he had his surgery last year at Shriner's Hospital. It is so awesome to have this kind of support in my life and I am truly grateful.

KORE

By the way, Javy went surfing for the first time in October. It was one of the most awesome and amazing experiences. A group of saints known as Kauai Ocean Recreation Experience (KORE) meet every four to six weeks and help people who otherwise couldn't experience the ocean in an awe inspiring way. Check out their website at http://korekauai.com/, Javy made the front page. All of the volunteers create this wonderful environment where you don't have to worry about anything. They do anything to get everyone into the water and there's no worries. Thank you, KORE!

Denial

So on Monday, I took Javy to the Department of Health, Developmental Disabilities Division for an intake interview. I happened to find out that the State of Hawaii has a Developmental Disabilities Division when I was googling anything I could think of to help me diagnose Javy (That's what having a child with an undiagnosed disorder comes down to sometimes, googling.) And Google is so smart nowadays that it knows that I live in Hawaii. Basically, their services provide home and community based services, including hiring someone to come into your home and do chores for Javy. For more information check out their website http://hawaii.gov/health/disability-services/developmental/index.html.

Anytime we meet someone new like this and we have to rehash the past and it dredges up all those old memories. For the interview, I brought all of Javy's medical records, schools records, and anything else I thought would help prove that we needed their services. I even found the original paperwork from Javy's first evaluation after his nine month check-up when the doctor first told me that Javy had developmental delays. Thank God, I can finally read those words without breaking down and crying.

For Javy's nine month check-up, I took him to his pediatrician, Dr. Battles at the UAB Clinic in Huntsville. I remember sitting in that tiny little white room with Javy sitting on my lap and mom sitting on the other side of the bed. An intern came in and asked us a bunch of questions and then she started to play with Javy. She put a pen in front of him and he didn't try to grab it or follow it with his eyes. He never looked to see what the noise was when she rang a bell. Nor did he follow the pen when she dropped it. Still clueless, I was getting very annoyed because she was making such a big deal about it. I thought, all babies are different and develop on their own good time. Then the doctor comes in, she plays with Javy, too. Follow the pen, Javy. I start to make excuses for him. He just doesn't want the pen. He grabbed my pen, yesterday. Ms. Williams, Javy appears to have some developmental delays. I'm recommending him for further evaluation so he can receive early intervention services. What does that mean?

The doctor says in a very technical way, Javy did not meet the standards of a typical 9 month old. Why is he not developing normally? Will he ever walk? Is he going to be alright? Javy will have to have more tests to figure that out. Here, (hands me an appointment card) take Javy to his evaluation and he can get therapy. I left that doctor's office so pissed off and very confused. But being the perpetual optimist that I am, I just decided that she was wrong. Javy would catch up and being playing soccer with all the other preschoolers.